Dr. Blaine is assistant professor in the Department of Family and Community Medicine at the University of Toronto in Canada and researcher at the Mount Sinai Hospital Family Medicine Genetics Program in Toronto. He is also a family physician in Stratford, Canada.

Dr. Carroll is associate professor and Sydney G. Frankfort Chair in Family Medicine in the Department of Family and Community Medicine at the University of Toronto, and researcher at the Mount Sinai Hospital Family Medicine Genetics Program.

Dr. Esplen is a scientist at the National Cancer Institute of Canada (NCIC). She is also head of the program of psychosocial and psychotherapy research in cancer genetics in the Department of Psychiatry at Mount Sinai Hospital in Toronto, Canada, and assistant professor in the Departments of Psychiatry and Nursing at the University of Toronto.

Acknowledgments: Drs. Blaine and Carrol have received financial support from the Imperial Oil Charitable Foundation. Dr. Esplen received support from career scientest award granted to her from the NCIC. 


 

Abstract

What is the role of the primary care physician (PCP) in managing patients at risk for familial cancer? The current interest, knowledge, and attitudes of both patients and physicians relating to genetics serve to highlight the importance of a key role for PCPs managing patients who may be genetically susceptible to cancer. Unfortunately, the knowledge and confidence to actively engage in genetic counseling and discussions of the psychosocial issues relating to predictive genetic testing are often lacking in primary care. The PCP’s role in cancer genetics is an extension of his/her previously established screening, risk assessment, and supportive counseling skills. Both innovative and traditional models may be applied to enable the physician’s role in the provision of primary care genetic services.

 

Introduction: The Challenge

The pace of discovery resulting from the Human Genome Project has accelerated our understanding of the genetic contributions to health and disease. While many hope that unraveling the inherited predispositions to disease may promote evidence-based individualized treatment and prevention strategies, others suggest that we retain a healthy skepticism regarding the promise of these new technologies.1 Some are even concerned that the results of predictive genetic testing may lead to fatalism and a sense that some diseases are uncontrollable, thus adversely affecting motivation to change.2
 

Regardless of the ultimate impact of genetics on medicine, primary care physicians (PCPs) will serve an increasingly important role in managing patients and families at increased genetic risk for these common diseases.3 The question is whether or not PCPs are prepared for this responsibility.4 This article will explore the challenges of integrating cancer genetics into primary care, highlight issues facing both patients and providers, and review the role of the PCP in this area with special emphasis on psychosocial issues.
 

Patient Interest, Knowledge, and Attitudes Regarding Genetics

A recent survey conducted by the American Medical Association (AMA) found that among Americans, if a known genetic disorder were present in the immediate family, 71% would most likely consult their PCP to learn about the possibility of inheriting the condition.5 In two surveys of women in the general population, 82% to 90% expressed interest in testing to detect a genetic susceptibility to breast cancer.6,7 In another study, only 43% of family members with BRCA1-linked hereditary breast/ovarian cancer requested results when offered genetic testing.8 More interest is expressed in genetic tests for which a proven intervention is available to either prevent or treat the disease.9 Motivations for testing include desire to reduce uncertainty about risk, participate in research, learn about risk for offspring, learn about other associated risks, explore further surveillance options, and make child-bearing and marital decisions.10
 

The public has a variable and in some cases extremely limited understanding of genetics. One public survey in the United Kingdom (UK) revealed that one in five people were unable to say what the terms “genetics” or “genetic information” meant to them.11 Studies have shown that patients dislike the uncertainty inherent in the probabilistic risk information associated with predictive testing and find challenges in comprehending risk information.12 There appears to be a complex interplay among the variables of perceived risk, anxiety, and surveillance behaviors. For example, women with just one first-degree relative with breast cancer may overestimate their own risk of cancer. Studies have shown that this overestimation is profound and difficult to modify and that psychological factors (eg, anxiety, feelings of loss) may impede risk comprehension and surveillance behaviors.13-16
 

A major public consultation11 on the future use of personal genetic information in the UK revealed broad support for the responsible use of human genetic information, especially with regard to improving diagnosis of disease, determining who is at risk of inheriting common diseases, and developing treatment for genetic disorders. However, some felt that human genetics research amounted to unethical tampering with nature. A recent survey of the Canadian public revealed that 91% felt it was acceptable to use genetic testing to determine the risk of transmitting disease to one’s children.17
 

In the United States, the Secretary’s Advisory Committee on Genetic Testing was chartered to advise on the medical, scientific, ethical, legal, and social issues raised by the development and use of genetic tests. Many public comments expressed concern about the potential use of genetic test results to discriminate against people in such areas as employment and health insurance. Education and counseling resources to facilitate informed decision-making regarding genetic testing were recommended.9
 

 

Knowledge and Attitudes of PCPs Regarding Genetics

Several studies have highlighted the limited knowledge of PCPs in the provision of genetic services in clinical practice.3,18-20 Most physicians agree that they have a role to play in genetic susceptibility screening, but also have concerns including the cost of testing, testing for diseases for which there is no effective treatment, the use of genetic tests by insurance companies, and the challenge of communicating risk to patients.21 Physicians have expressed a reluctance to adopt genetic tests because of questionable clinical validity and utility, and perceive a more practical importance of these tests in the future rather than in the present.22 They are concerned about alarming their patients, the majority of whom will see no health gain from genetic testing.23
 

 

Psychosocial Issues Associated With Having a Family History of Cancer

Individuals with a family history of cancer frequently believe that they are at high risk for the disease, even when that may not be the case. Elevated risk perceptions are often associated with high levels of psychosocial distress or anxiety.13-15 Individuals who experience elevated risk perceptions feel vulnerable to cancer and often suffer intrusive thoughts about the disease threat.13,15 They may not be reassured by the provision of a negative test result or with accurate risk information. These individuals often require psychosocial interventions to address associated psychological factors, such as previous losses or caregiving experiences around a family member’s cancer.14,16
 

The interplay between perceived risk and anxiety is important in considering disease-screening behaviors. Studies on surveillance indicate that a minimum level of distress and anxiety is necessary for attendance to a screening program, but if anxiety exceeds a certain level it can have a negative influence on surveillance adherence.13,15 Some individuals feeling a threat of disease may adopt a denial coping strategy, resulting in noncompliance or delay.24,25 Similarly, levels of anxiety and concern influence the adoption of lifestyle changes and other health behaviors. Hypervigilance in the form of seeking out additional health information to alleviate concerns about risk is a common response to elevated risk perception.26 Factors in the literature that have been identified to be associated with an overestimation of risk and distress include having a family history of disease, beliefs about the disease and risks, lower educational level (specifically being uninformed about genetics and disease), prior loss of a family member to cancer, identification with a family member, and media attention surrounding cancer risk.13,14,16,27-29
 

Risk information contains probabilities and doubts that may lead to confusion. In addition, genetic information can be an existential threat to the individual and his/her family members. Risk information can not only arouse fears about developing the disease, but feelings of anger towards those who transmitted the disease and guilt about the potential transmission of the genes to offspring.24 Such reactions have potential for influencing the person’s well-being and relationships with family members, which in turn can interfere with the process of notification of a genetic mutation to family members who may be at risk.30
 

Individuals pursuing genetic testing in cancer are often confronted with additional difficult decisions. Any test result that brings forward serious and difficult decisional options can pose additional psychological burden. Examples include decision-making around current prevention and treatment options (eg, increased surveillance, prophylactic surgery, chemoprevention), test result notification to extended family members and offspring, and relationship decisions (eg, marriage, childbearing).25
 

Relationships among siblings, parents, offspring, and partners can be complicated by the pursuit of genetic testing and results. For example, some individuals found not to carry a known gene mutation in the family may experience “survivor guilt” and feelings of rejection by their families when they find that they no longer have a key bond that previously tied them together.24,25 Sometimes families attempt to protect a family member through nondisclosure of familial cancer information, which can pose difficult and challenging ethical dilemmas for a PCP managing the health care of different family members.
 

The literature is beginning to pinpoint factors that may be helpful in identifying the group of individuals who may have more difficulty in the genetic and risk counseling process. These include previous familial experience of the disease, the amount of loss in the family, perceived current threat to the individual, proximity in age to the time of diagnosis of a relative who previously dealt with the disease, the expectation of receiving an unfavorable result, the amount of social support and coping style (anxious preoccupied style), and a premorbid psychological history.13,25,29,31,32
 

Recent studies indicate that 20% to 25% of individuals eligible for genetic testing experience distress in the clinical ranges for depression and anxiety.33-35 Baseline distress is highly predictive of post-test adjustment,33-35 suggesting the need for psychosocial screening at the time of pretest.
 

 

The Evolving Role of PCPs in Cancer Genetics

Media hype and direct marketing of genetic tests will likely increase awareness of the significance of a family history of cancer among the public. PCPs will therefore have a vital role in educating their patients about the genetic risk of cancer, often to reassure those at low risk for whom genetic testing is not warranted. Such counseling can readily be provided within the existing framework of primary care and need not require specialized skills.36 The problem is that only 5% to 10% of all breast, ovarian, and colorectal cancers are considered inheritable, with little evidence for risk-reduction strategies. Genetic risk information has yet to change behavior any more than nongenetic information.37 For these reasons, some have argued that routine family history screening of symptom-free patients to document cancer does not meet the criteria for a screening test.38
 

PCPs cannot be expected to take on the expert role of a clinical geneticist, but rather they should incorporate key elements of genetics into everyday primary care practice.36 Greater awareness of the potential impact of genetics in primary care may allow PCPs to more consistently recognize clues to a genetic condition, use the family history to perform a genetic risk assessment, identify those at increased psychosocial risk related to their genetic history, provide or refer the patient for psychosocial support, and ultimately facilitate informed choice regarding subsequent health decisions (Table).


 

Taking a Family History

PCPs have many opportunities to ask about family history: new patient encounters, periodic health examinations, and even during episodic visits for those who rarely frequent the clinic. A recent study using direct observation of patient visits found that family physicians discussed family history during only half of new patient visits.39 PCPs should be aware of the potential limitations of family history information as reported by patients, such as use of incorrect or lay terminology, uncertainty regarding the type of primary cancer affecting a relative, and age at diagnosis.
 

Although a three-generation family history or pedigree may be ideal, simple tools may assist clinicians in capturing important elements of a cancer family history. Computerized patient-administered family history-taking tools have been developed; they are currently being evaluated and may facilitate the task of systematically organizing this information.40,41
 

Genetic Risk Assessment

Once a family history of cancer has been identified, risk assessment tools and/or guidelines may be used to identify patients at increased risk for the disease. For some of these cases, genetic testing will distinguish between the family members truly at high risk (carriers, positive for a known family mutation) who may benefit from increased surveillance or prevention strategies versus those family members at low risk (negative for a known family mutation), who may revert to population-based screening recommendations despite their alarming family history.42 PCPs need to recognize the patients who may benefit from specialized genetics services43 as well as those patients whom they feel can manage themselves. The more common role for the PCP will likely be to provide reassurance, counseling, and support to patients with low-risk cancer family histories—situations where referral and testing are not indicated.
 

Counseling About Genetic Testing

In some situations, counseling may only entail the provision of basic genetics information to help with informed decision-making.43 In other situations, these discussions may be followed by referral to genetics clinics44 and/or involve psychosocial counseling to address any psychological concerns and symptoms. Benefits of genetic testing include reassurance for those found to be negative for a cancer susceptibility gene mutation or, if testing is positive, the opportunity for increased surveillance or prophylactic treatment or surgery.
 

Risks of knowing genetic information, particularly a positive genetic test for cancer susceptibility, are numerous. Concerns have been raised about privacy and discrimination issues related to employment and insurance. A recent systematic review31 of the psychological consequences of predictive genetic testing reported that the majority of both carriers and noncarriers showed decreased distress after testing. However, a significant number of individuals do experience difficulty in adjusting to their test results. Pretest emotional state was predictive of subsequent distress, suggesting that individuals at psychological risk undergoing genetic testing be identified beforehand so that post-test supportive care can be targeted at those in need.31
 

Not all carriers will develop cancer, but if they do, the age of onset is unknown. This uncertainty may lead to fear or anxiety. Some family members may not want to know about their risk and this can pose challenges to family dynamics. Carriers may feel guilty for passing on a genetic mutation to children, which ultimately may impact on family relationships. When such psychological factors are identified, psychosocial counseling or a mental health referral may be required. Those who test negative for the family’s mutation may experience “survivor guilt.”44
 

Offering Genetics Referral

Patients assessed as being at high risk for hereditary cancer by their PCP should be offered referral to a genetics center or familial cancer clinic for further counseling and consideration of genetic testing. Patients must understand that a genetics referral does not necessarily imply that genetic testing will be offered after further details of the family history are obtained. Some patients may not meet high-risk referral criteria and yet still have a cancer family history that is clearly not low risk. Although perhaps not eligible for genetic testing, such moderate risk patients may still be offered referral to a genetics center for further information and/or to a mental health specialist for counseling depending on the nature and severity of their distress. PCPs may help prepare referred patients by explaining the genetics consultation process and the role that specific psychological issues may play in decisions for themselves and their families.
 

Treatment and Surveillance

At present, recommendations for the treatment and surveillance of carriers of cancer susceptibility genes are based mainly on expert opinion. PCPs, with the help of genetic specialist colleagues, will need to discuss treatment and management options with these patients. They can assist patients in making informed choices based on available information, family concerns, and psychosocial health. This is a most challenging task given the variability of evidence for surveillance recommendations, chemoprevention, and prophylactic surgery. Uncertainty and potential costs and side effects associated with preventive options can result in added psychological burden. For example, while women at high risk for breast and ovarian cancer are strongly motivated to take action to reduce their risk and may consider prophylactic surgery, they must weigh these decisions against the consequences of surgery, such as premature menopause. These can be challenging decisions for women who are currently healthy.
 

Long-Term Care

PCPs often provide continuity of care to patients and families for a comprehensive range of health services over many years. Patients and their families found to be at high risk for familial cancer may return to consult the same provider long after a genetic risk was first identified. Whether or not these individuals underwent genetic testing or even received informative test results, they will no doubt require ongoing routine medical care, with special attention drawn to the psychosocial impact of their known familial cancer susceptibility. In addition, challenges can occur around family dynamics (eg, disclosure). Individuals sometimes try to protect others in the family from worrying about a cancer risk through nondisclosure. They also grapple with the question of when and how to tell offspring about risk.45 These patients will require counseling regarding newly discovered clinically-relevant predictive, diagnostic, and/or therapeutic technologies that may impact upon their previously assigned genetic predisposition. PCPs can be supportive in assisting other family members to consider testing, by providing disclosure plans, and treatment options.
 

Meeting the Challenge

Will PCPs be able to fill the following roles: taking a comprehensive family history, genetic risk assessment, provision of genetics information, appropriate genetics referral, genetic testing, assessing and managing psychosocial issues, and formulating and coordinating individualized management plans? Some have expressed concern that PCPs may be too directive in their counseling21,46 and may lack the knowledge and skills required.43,47 Others cite time, money, and legal and ethical concerns as barriers to primary care involvement in genetics.47 However, direct marketing pressures and media hype may make PCPs the initial point of contact for many patients seeking information about genetic testing and inherited cancers.48 Some argue that PCPs are ideally suited to guide their patients through the decision-making process of genetic assessment and testing44 while at the same time addressing psychological and social issues. Such a role is indeed an extension of the well-established experience of PCPs in screening and risk assessment in primary care.36
 

Enabling a Role for PCPs in Cancer Genetics

Awareness of the potential scope and limitations of genetic technologies is necessary if PCPs are to become more involved in the delivery of genetic services. Several groups have developed comprehensive core competencies of genetics education for health professionals.49 These guidelines may assist health disciplines in modifying genetics curricula and create providers competent in genetics service delivery at the primary care level.
 

Innovative educational strategies must target PCPs currently in active practice as well as those in training programs. In the US, Genetics in Primary Care (GPC): A Faculty Development Initiative targets family medicine, general internal medicine, and general pediatrics to plan, implement, and evaluate outcomes of primary care training programs in genetics.50 Both traditional and creative models may help to translate relevant genetic knowledge into practical applications for primary care. Efficient, organized, clear, and simple protocols to obtain, evaluate, and act on family history information will need to be developed to take advantage of this powerful clinical tool.39 Linking PCPs with clinical genetics nurse specialists may facilitate the screening of genetic problems in primary care settings.51 Collaborative practice-based research networks may be used to foster PCP involvement in clinical research on genetic tests, perhaps even serving as an educational outlet for some of these clinicians.22 Even simple interventions, such as providing general practitioners with a written information pack on inherited cancer, have been shown to significantly improve referral decisions regarding patients with a positive family history.52 The development of psychological screening tools to assist PCPs in identifying those at psychological risk may be helpful. In addition, linkages and communication with mental health resources to promote further integration of supportive care may be required. Innovative models such as “Shared Care,”53 which involves a consultation-liaison kind of partnership between PCPs and psychiatrists/psychologists, may be helpful to provide consultation and support to PCPs. Regardless of the model, the need for effective partnership between genetics experts and the general public is critical if improved education, information transfer, and community building is to flourish.54
 

Conclusion

PCPs play an important and evolving role in the management and psychosocial support of patients with a family history of cancer. They must be prepared to engage patients in discussions of predictive genetic testing for cancer susceptibility. This includes taking a comprehensive family history, genetic risk assessment, provision of genetics information, appropriate referral for genetics consultation or genetic testing, and formulating and coordinating individualized management plans. PCPs possess much of the necessary knowledge, skills, and attitudes needed to manage and support patients at increased genetic risk for cancer. Both traditional and innovative strategies may further establish the integration of genetics into primary care practice.   PP
 

References

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4.    Caulfield T. Gene testing in the biotech century: are physicians ready? CMAJ. 1999;161:1122-1124.
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11.    Human Genetics Commission. Public attitudes to human genetic information: People’s Panel Quantitative Study conducted for the Human Genetics Commission. March 2001; London, UK. Available at: www.hgc.gov.uk/business_publications_morigeneticattitudes.pdf. Accessed June 1, 2001.
12.    Carroll JC, Brown JB, Reid AJ, Pugh P. Women’s experience of maternal serum screening. Can Fam Physician. 2000;46:614-620.
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14.    Lerman C, Lustbader E, Rimer B, et al. Effects of individualized breast cancer risk counseling: a randomized trial. J Natl Cancer Inst. 1995;87:286-292.
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16.    Esplen MJ, Toner B, Hunter J, et al. A supportive-expressive group intervention for women with a family history of breast cancer: results of a phase II study. Psychooncology. 2000;9:243-252.
17.    Martin S. Most Canadians welcome genetic testing. CMAJ. 2000;163:200.
18.    Julian-Reynier C, Eisinger F, Moatti JP, Sobol H. French physicians’ knowledge about hereditary breast/ovarian cancer: the need for continuing vocational training in genetics. Community Genet. 1999;2:165-172.
19.    Escher M, Sappino AP. Primary care physicians knowledge and attitudes towards genetic testing for breast-ovarian cancer predisposition. Ann Oncol. 2000;11:1131-1135.
20.    Mouchawar J, Klein CE, Mullineaux L. Colorado family physicians knowledge of hereditary breast cancer and related practice. J Cancer Educ. 2001;16:33-37.
21.    Geller G, Holtzman NA. A qualitative assessment of primary care physicians’ perceptions about the ethical and social implications of offering genetic testing. Qual Health Res. 1995;5:97-116.
22.    Mountcastle-Shah E, Holtzman NA. Primary care physicians’ perceptions of barriers to genetic testing and their willingness to participate in research. Am J Med Genet. 2000;94:409-416.
23.    De Bock GH, Vliet Vlieland TP, Hageman GC, Oosterwijk JC, Springer MP, Kievit J. The assessment of genetic risk of breast cancer: a set of GP guidelines. Fam Pract. 1999;16:71-77.
24.    Codori A. Psychological opportunities and hazards in predictive genetic testing for cancer risk. Gastroenterol Clin North Am. 1997;26:19-39.
25.    Stiefel F, Lehmann A, Guex P. Genetic detection: The need for psychosocial support in modern cancer prevention. Support Care Cancer. 1997;5:461-465.
26.    Shaw C, Abrams K, Marteau T. Psychological impact of predicting individuals’ risks of illness: a systematic review. Soc Sci Med. 1999;8:361-367.
27.    Decruyenaere M, Evers-Kiebooms G, Denayer L, et al. Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling. Eur J Hum Genet. 2000;8:130-136.
28.    Phillips KA, Glendon G, Knight JA. Putting the risk of breast cancer in perspective. N Engl J Med. 1999;340:141-144.
29.    Wellisch DK, Gritz ER, Schain W, Wang HJ, Siau J. Psychological functioning of daughters of breast cancer patients. Part II: Characterizing the distressed daughter of the breast cancer patient. Psychosomatics. 1992;33:171-179.
30.    Lerman C, Peshkin B, Hughes C, Isaacs C. Family disclosure in genetic testing for cancer susceptibility: determinants and consequences. J Healthcare Law Policy. 1998;1:352-371.
31.    Broadstock M, Michie S, Marteau T. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet. 2000;8:731-738.
32.    Meiser B, Gleeson MA, Tucker KM. Psychological impact of genetic testing for adult-onset disorders. An update for clinicians. Med J Aust. 2000;172:126-129.
33.    Gilbar O. Women with high risk for breast cancer: psychological symptoms. Psychol Rep. 1997;80:800-802.
34.    Zakowski SG, Valdimarsdottir HB, Bovbjerg DH, et al. Predictors of intrusive thoughts and avoidance in women with family histories of breast cancer. Ann Behav Med. 1997;19:362-369.
35.    Wellisch DK, Lindberg NM. A psychological profile of depressed and nondepressed women at high risk for breast cancer. Psychosomatics. 2001;42:330-336.
36.    Kumar S, Gantley M. Tensions between policy makers and general practitioners in implementing new genetics: grounded theory interview study. BMJ. 1999;319:1410-1413.
37.    Marteau TM, Lerman C. Genetic risk and behavioural change. BMJ. 2001;322:1056-1059.
38.    Emery J, Lucassen A, Murphy M. Common hereditary cancers and implications for primary care. Lancet. 2001;358:56-63.
39.    Acheson LS, Wiesner GL, Zyzanski SJ, Goodwin MA, Stange KC. Family history-taking in community family practice: implications for genetic screening. Genet Med. 2000;2:180-185.
40.    Acheson LS, Wiesner GL, Zyzanski SJ, Stange KC (North American Primary Care Research Group [NAPCRG]). A new tool for automating family history collection. Abstract presented at: NAPCRG conference; October 2001; Halifax, Canada.
41.    Emery J, Walton R, Coulson A, Glasspool D, Ziebland S, Fox J. Computer support for recording and interpreting family histories of breast and ovarian cancer in primary care (RAGs): qualitative evaluation with simulated patients. BMJ. 1999;319:32-36.
42.    Warner E, Heisey RE, Goel V, Carroll JC, McCready DR. Hereditary breast cancer. Risk assessment of patients with a family history of breast cancer. Can Fam Physician. 1999;45:104-112.
43.    Emery J, Hayflick S. The challenge of integrating genetic medicine into primary care. BMJ. 2001;322:1027-1030.
44.    Carroll JC, Heisey RE, Warner E, Goel V, McCready DR. Hereditary breast cancer. Psychosocial issues and family physicians’ role. Can Fam Physician. 1999;45:126-132.
45.    Esplen MJ, Hunter J, Narod S, et al. Supportive-expressive group intervention for women who test positive for BRCA1/2. Psychooncology. 2000;9:S25.
46.    Geller G, Tambor ES, Chase GA, Hofman KJ, Faden RR, Holtzman NA. Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive? Arch Fam Med. 1993;2:1119-1125.
47.    Watson EK, Shickle D, Qureshi N, Emery J, Austoker J. The ‘new genetics’ and primary care: GPs views on their role and their educational needs. Fam Pract. 1999;16:420-425.
48.    Caulfield TA. The informed gatekeeper? A commentary on genetic tests, marketing pressure and the role of primary care physicians. Health Law Rev. 2001;9:14-18.
49.    National Coalition for Health Professional Education in Genetics. Available at: http://www.nchpeg.org. Accessed January 20, 2002.
50.    Health Professions Maternal & Child Health. Genetics in Primary Care (GPC): a Faculty Development Initiative. Available at: bhpr.hrsa.gov/medicine-dentistry/genpc.html. Accessed January 20, 2002.
51.    Rose P, Humm E, Hey K, Jones L, Huson SM. Family history taking and genetic counselling in primary care. Family Pract. 1999;16:78-83.
52.    Watson E, Clements A, Yudkin P, et al. Evaluation of the impact of two educational interventions on GP management of familial breast/ovarian cancer cases: a cluster randomised controlled trial. Br J Gen Pract. 2001;51:817-821.
53.    Kates N, Craven M, Crustolo Am, Nicolaou l, Allen C. Integrating mental health services within primary care. A Canadian program. Gen Hosp Psychiatry. 1997;19:324-332.
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Dr. Hughes is assistant professor of psychiatry in the Department of Psychiatry and director of the Community and Minority Cancer Prevention and Control Initiative at the University of Pennsylvania in Philadelphia.

Acknowledgments: This work was supported by Department of Defense Grant #DAMD17-00-1-0262.


 

Abstract

What role does culture play in cancer genetics research? Genetic counseling and testing for BRCA1 and BRCA2 mutations is increasingly being integrated into the clinical management of individuals who have a family history of cancer that is suggestive of inherited breast-ovarian cancer. While several studies have been conducted to understand the psychological, clinical, and familial impact of genetic testing, relatively little attention has been given to the role of cultural influences on the process of providing genetic counseling and testing services. Cultural factors such as beliefs and values and ethnic background are likely to play an important role in genetic risk profiles, decisions about participation in genetic risk assessment and testing, and responses to genetic risk information. This article reviews emerging literature on the role of cultural factors in cancer genetics research.

 

Introduction

A substantial amount of research has been conducted to understand the clinical, psychological, and familial impact of genetic testing for inherited breast cancer risk. For example, women who are found to carry a cancer predisposing BRCA1 or BRCA2 (BRCA1/2) mutation have an estimated 55% to 85% increased risk of developing breast cancer and a 15% to 60% increased risk of developing ovarian cancer.1-3 Men who have a risk conferring the BRCA1/2 mutation are also at increased risk for developing prostate cancer.1 Several studies have also shown that rates of communicating BRCA1/2 test results to family members are high4-6. However, genetic testing may have an adverse effect on family and personal relationships.

In a recent study, approximately one third of BRCA1/2 mutation carriers reported that their family or personal relationships had been affected by genetic testing, and of these, 50% reported that these relationships were more emotionally strained after genetic testing.7 Data on the psychological impact of genetic counseling and testing continue to emerge, and recent studies have demonstrated that receiving BRCA1/2 test results may generate specific emotional reactions, such as anxiety or sadness, rather than have an adverse effect on overall psychological functioning.8-14 Compared to women who did not carry a deleterious BRCA1/2 mutation, BRCA1/2 mutation carriers reported significantly greater levels of genetic testing-specific distress in a recent study.15

While there is an abundance of data on the clinical, psychological, and familial impact of genetic counseling and testing for inherited breast cancer risk, culture is increasingly being recognized as an important factor in cancer genetics research. Culture is defined as a framework of beliefs and values that shape behavior and influence the way in which information about illness is interpreted and used to make healthcare decisions.16 Recent reviews have recommended increased consideration of cultural characteristics in cancer prevention and control research,16,17 and several studies have explored how cultural factors influence outcomes within cancer genetics studies (ie, genetic testing decisions, responses to genetic risk information).

While there is an increasing emphasis on distinguishing the contributions of underlying beliefs and values that are derived from one’s cultural worldview (racial or ethnic differences in cancer prevention and control behaviors)18 data are limited on the influence of specific cultural beliefs and values on genetic counseling and testing outcomes. For this reason, this review focuses on empirical research that has addressed how cultural factors such as ethnic background influence (A) the prevalence of genetic risk factors; (B) interest in genetic testing; and (C) responses to education and counseling about hereditary breast cancer and genetic testing. A review of how ethnic background has influenced these outcomes is informative for identifying areas that should be addressed in future cancer genetics research.

Research is now being conducted to identify susceptibility genes that confer an increased risk of developing other forms of cancer (eg, prostate cancer susceptibility genes)19,20 and investigators are now exploring interest in genetic testing21-24 for these forms of hereditary cancer.

This review is designed to identify underlying themes and issues related to cultural influences in cancer genetics research. Because increased attention is being directed towards reducing or eliminating racial and ethnic disparities in cancer morbidity and mortality,25,26 articles that address ethnic group differences among African-American and White women are the focus of this article.

 

Ethnic Differences in Cancer Risk

A substantial amount of research has demonstrated that ethnic background is an important factor in breast cancer risk and survival. For example, while breast cancer incidence rates are greater among White women than among women from other racial and ethnic groups (ie, African American, Hispanic, Asian), African-American women are at increased risk for developing early onset disease, have higher rates of advanced-stage breast cancer, and show reduced rates of breast cancer survival.27-30

Recent work suggests that ethnic differences in breast cancer risk may also be due to variations in genetic risk factors.31 For example, although BRCA1/2 mutations account for only about 5% to 10% of all breast cancer cases,32,33 the prevalence of three founder BRCA1/2 mutations (185delAG, 5382insC in BRCA1 and 617delT in BRCA2) is about 2.5% among women of Ashkenazi Jewish background.1,34 Specific BRCA1/2 mutations have also been identified among other ethnic groups, including Icelanders (999del5 in BRCA2), Norwegians (1136insA in BRCA1), and African Americans (M1775R, 1832del5, and 5296del4 in BRCA1).31 Furthermore, data from recent epidemiological studies suggest that the prevalence of deleterious BRCA1/2 mutations ranges between 12% to 21% among clinic-based samples of African-American women who have a personal and family history of breast and/or ovarian cancer.35 While our understanding of BRCA1/2 mutations among African Americans is increasing, efforts to further understand the penetrance of BRCA1/2 mutations among this population may be limited because of reduced participation in cancer genetics research.

 

Interest in Genetic Risk Assessment and Testing

Several studies have shown that women in the general population and those who have a family history of breast cancer report a high level of interest in genetic testing for inherited breast cancer risk.36-38 However, these studies were conducted before predictive testing was available, and findings from these studies were based on data collected from samples of women who had a low or moderate risk of having a BRCA1/2 gene alteration. However, one of the first studies to report actual rates of test acceptance found that only 43% of high-risk individuals identified from a hereditary breast cancer registry received BRCA1/2 test results.14 While this study suggested that rates of genetic test acceptance may be lower than anticipated among high-risk individuals, a recent study found that 82% of high-risk probands (ie, the first index case affected with breast and/or ovarian cancer to have genetic testing) ascertained from breast cancer clinics utilized genetic testing and received BRCA1/2 test results.39 However, a limitation of these studies is that the findings are based on samples that were ethnically homogenous. A study by Schwartz and colleagues39 found that rates of genetic test acceptance did not differ among African-American and White women; however, African-American women made up only 5% of the study sample.

Previous research has shown that African-American women are significantly less likely to participate in an education session about hereditary breast cancer and genetic testing compared to White women.40 Even though African-American women reported significantly greater expectations about the positive outcomes of genetic testing than White women,41 only 49% of African-American women participated in a pretest education session about hereditary breast cancer and genetic testing compared to 68% of white women.40

While greater levels of cancer-specific distress may be a barrier to participating in education and counseling programs designed to provide information about hereditary cancer and genetic testing among African-American women,40 it is possible that reduced participation in education programs that were conducted before actual testing was available may underestimate interest in testing among African Americans at high risk for having a BRCA1/2 gene alteration.

A recent study found that 82% of African Americans at high risk for having a BRCA1/2 gene alteration reported that they would definitely have genetic testing.42 However, our preliminary findings suggest that rates of participation in genetic risk assessment and testing may be lower among high-risk African-American women. Only about 60% of African-American women who had a family history of breast and/or ovarian cancer that was suggestive of inherited breast cancer susceptibility participated in genetic risk assessment and received BRCA1/2 test results.43 The small number of studies that have focused on genetic counseling and testing specifically among African Americans is a significant limitation in our ability to understand the psychological and behavioral impact of genetic counseling and testing for inherited breast cancer risk among this population. However, we can anticipate these potential effects based on data from studies that have evaluated responses to breast cancer risk counseling and education.

 

Responses to Risk Education and Counseling

Previous research has shown that African-American women may have different needs and preferences for information about inherited cancer risk. For example, when compared to White women, African-American women were less knowledgeable about breast cancer genetics (ie, transmission of inherited cancer susceptibility).41,44 Although there were no differences among African-American and White women in terms of overall perceptions of the limitations and risks of testing in one study,4 more recent work has demonstrated that African-American women have greater concerns about the limitations and risks of genetic testing.44 However, African-American women were significantly more concerned about their ability to handle the emotional impact of genetic testing results compared to White women in both studies.41,44

Only a few studies have evaluated ethnic differences in the impact of education about hereditary breast cancer and genetic testing. For example, African-American women who participated in an education program about hereditary breast cancer and genetic testing reported significantly greater genetic testing intentions and were more likely to provide a blood sample for storage and possible future testing following an education and counseling intervention about hereditary breast cancer compared to African-American women who received an education-only intervention.40

Although this study was conducted before predictive testing for BRCA1/2 mutations was available and participants were women who had a low-to-moderate risk of having a BRCA1/2 gene alteration, the effects of the education and counseling intervention were only observed among African-American women. There were no differences in genetic testing intentions or provision of a blood sample among white women who received the education and counseling intervention compared to white women who received the education-only intervention.40 However, printed educational materials that were designed to provide information about hereditary breast cancer, BRCA1/2 genes in the Ashkenazi Jewish population, and information about the benefits, limitations, and risks of genetic testing, led to greater perceptions of the limitations and risks of genetic testing, increased levels of knowledge about breast cancer genetics, and decreased genetic testing intentions among Ashkenazi Jewish women at low risk for having a BRCA1/2 gene alteration.45

While the specific mechanisms that contribute to differences in responses to education about hereditary breast cancer and genetic testing among African-American women and Ashkenazi Jewish women are unclear, it is possible that education and counseling provide in-person increased motivations to have genetic testing among African-Americans because they had a high level of trust in the nurse educator who delivered the intervention.40 The education and counseling sessions for the majority of the African-American participants were completed by an African American nurse educator.46 Emphasis on interpersonal relationships is a key component of African-American culture, and it is possible that women were able to identify more strongly with the African-American nurse during the education session. This process may have contributed to increased genetic testing motivations.

Previous research has shown that ethnic identity or the level of affiliation with one’s ethnic or racial group is associated with responses to breast cancer risk education and counseling. Improvements in risk comprehension and reductions in cancer-related distress were associated with higher levels of African-American ethnic identity among women who participated in a breast cancer risk education program that was delivered in a group format.47 The process of identifying with women who are of the same ethnic background may be one mechanism through which African-American women comprehend cancer risk information. However, it is also likely that the specific beliefs and values related to interpersonal relationships, temporal orientation, and religion and spirituality that are highly endorsed within one’s cultural worldview also have a direct influence on responses to risk information and counseling provided within genetic counseling and testing settings.48

 

Cultural Considerations in Genetic Counseling for BRCA1/2 Mutations

In most clinical research settings, predictive genetic testing for BRCA1/2 mutations is offered to individuals who have a minimum 10% to 20% prior probability of having a deleterious BRCA1/2 mutation.49 It is standard practice to provide pretest education about hereditary breast cancer, the probability of having a BRCA1/2 gene alteration, and information about the benefits, limitations, and risk of genetic testing in order to facilitate informed decision-making about genetic testing.49,50 Post-test counseling is also provided to improve adjustment to BRCA1/2 test results and enhance informed decisions about cancer prevention, surveillance, and treatment.49,50

While provision of risk information is one of the key aspects of genetic assessment and counseling, temporal orientation may influence the salience of risk information. Temporal orientation is described as the level of cognitive involvement within past, present, and future dimensions, and greater levels of future temporal orientation have been associated with improved psychological functioning following traumatic events.51 It is possible that cancer risk estimates may be more meaningful among individuals with a future temporal orientation because they increase perceptions of control. However, among individuals with a present or past temporal orientation, estimates of genetic probability and disease risk may be less meaningful because there is little focus on the immediate situation.48

Previous research conducted among African Americans and Whites affected with hypertension has shown that individuals who had a present temporal orientation reported lower perceptions of the efficacy of disease prevention and control, as well as lower perceptions of susceptibility to the consequences of uncontrolled hypertension.52 In this study, as well as in studies conducted among individuals from the general population, African Americans were significantly more likely than Whites to have a present temporal orientation.52,53

Previous studies have shown that greater levels of spiritual faith were associated with lower rates of test acceptance in a prior study by Schwartz and colleagues.39 However, religious and spiritual beliefs may play a significant role in coping with genetic risk information among African-American women. Spirituality and religion are critical aspects of African-American culture,46 and previous research has shown that African-American women affected with breast cancer were more likely than white women to use religious coping strategies and resources to adjust to their breast cancer diagnosis and treatment.54 Religious coping strategies may also be used by African-American women to cope with genetic risk information. However, the psychological impact of genetic testing for BRCA1/2 mutations among African-American women and the effectiveness of religious coping strategies has not been evaluated among high-risk African-American women who have received BRCA1/2 test results.

 

Conclusion

Genetic counseling and testing for BRCA1/2 mutations is increasingly being integrated into the clinical management of individuals who have a family history of disease that is suggestive of inherited cancer susceptibility. A substantial amount of research has been conducted to understand the clinical, psychological, and familial impact of genetic testing for BRCA1/2 mutations. While few studies have addressed these outcomes among ethnically diverse populations, our knowledge about the prevalence of BRCA1/2 genes among these populations is increasing. For example, recent studies have shown that the prevalence of BRCA1/2 susceptibility genes is 12% to 21% among African-American hereditary breast cancer families. This finding provides support for the need for future studies designed to clarify the penetrance of BRCA1/2 mutations among this population. However, this review has demonstrated that reduced participation of African Americans in cancer genetics research is consistent. This is likely to be a significant limitation of future cancer genetics research, and increased culturally sensitive community outreach efforts may be needed to educate lay audiences about the availability of genetic counseling and testing or to recruit African Americans into cancer genetics research protocols.

This review has also demonstrated that ethnic background influences responses to information about hereditary breast cancer and genetic testing. However, the mechanisms that contribute to ethnic differences in responses to education about hereditary breast cancer are not clear. Additional research is needed to evaluate the influence of specific cultural beliefs and values on psychological and behavioral responses to genetic counseling and testing.   PP

 

References

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3. Easton DF, Ford D, Bishop DT. Breast and ovarian cancer incidence in BRCA1mutation carriers. Am J Hum Genet. 1995;56:265-271.
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17. Johnson KRS. Ethnocultural influences in cancer. J Clin Psychol Med Settings. 1998;5:357-364.
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19. Rebbeck TR, Walker AH, Zeigler-Johnson C, et al. Association of HPC2/ELAC2 genotypes and prostate cancer. Am J Hum Genet. 2000;67:1014-1019.
20. Tavtigian SV, Simard J, Teng DH, et al. A candidate prostate cancer susceptibility gene at chromosome 17p. Nat Genet. 2001;27:172-180.
21. Doukas DJ, Fetters MD, Coyne JC, McCullough LB. How men view genetic testing for prostate cancer risk: findings from focus groups. Clin Genet. 2000;58:169-176.
22. Myers RE, Hyslop T, Jennings-Dozier K, et al. Intention to be tested for prostate cancer risk among African-American men. Cancer Epidemiol Biomarkers Prev. 2000;9:1323-1328.
23. Miesfeldt S, Jones SM, Cohn W, et al. Men’s attitudes regarding genetic testing for hereditary prostate cancer risk. Urology. 2000;55:46-50.
24. Bratt O, Bamber JE, Emanuelsson M, et al. Risk perception, screening practice and interest in genetic testing among unaffected men in families with hereditary prostate cancer. Eur J Cancer. 2000;36:235-241.
25. National Cancer Institute. The NCI Strategic Plan to Reduce Health Disparities. Bethesda, Md: National Institutes of Health; 1999.
26. Committee on Cancer Research among Minorities and the Medically Underserved, Institute of Medicine. The Unequal Burden of Cancer: An Assessment of NIH Research and Progress for Ethnic Minorities and the Medically Underserved. Washington, DC: National Academy Press; 1999.
27. Ries LA, Wingo PA, Miller DS, et al. The annual report to the nation on the status of cancer, 1973-1997, with a special section on colorectal cancer. Cancer. 2000;88:2398-2424.
28. Yood MU, Johnson CC, Blount A, et al. Race and differences in breast cancer survival in a managed care population. J Natl Cancer Inst. 1999;91:1487-1491.
29. Cancer Facts and Figures: 2001. Atlanta, Ga: National Cancer Society; 2001.
30. Wojcik BE, Spinks MK, Optenberg SA. Breast carcinoma survival analysis for African American and white women in an equal-access health care system. Cancer. 1998;82:1310-1318.
31. Neuhausen SL. Ethnic differences in cancer risk resulting from genetic variation. Cancer. 1999;86(suppl 11):1755-1762.
32. Miki Y, Swensen J, Shattuck-Eidens D, et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science. 1994;266:66-71.
33. Wooster R, Bignell G, Lancaster J, et al. Identification of the breast cancer susceptibility gene BRCA2. Nature. 1995;378:789-792.
34. Roa BB, Boyd AA, Volcik K, Richards CS. Ashkenazi Jewish population frequencies for common mutations in BRCA1 and BRCA2. Nat Genet. 1996;14:185-187.
35. Gao Q, Tomlinson G, Das S, et al. Prevalence of BRCA1 and BRCA2 mutations among clinic-based African American families with breast cancer. Hum Genet. 2000;107:186-191.
36. Chaliki H, Loader S, Levenkron JC, Logan-Young W, Hall WJ, Rowley PT. Women’s receptivity to testing for a genetic susceptibility to breast cancer. Am J Pub Health. 1995;85:1133-1135.
37. Lerman C, Daly M, Masny A, Balshem A. Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol. 1994;12:843-850.
38. Tambor ES, Rimer BK, Strigo TS. Genetic testing for breast cancer susceptibility: awareness and interest among women in the general population. Am J Med Genet. 1997;68:43-49.
39. Schwartz M, Hughes C, Roth J, et al. Spiritual faith and genetic testing decisions among high-risk breast cancer probands. Cancer Epidemiol Biomarkers Prev. 2000;9:381-385.
40. Lerman C, Hughes C, Benkendorf JL, et al. Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiol Biomarkers Prev. 1999;8:361-367.
41. Hughes C, Gomez-Caminero A, Benkendorf J, et al. Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns. 1997;32:51-62.
42. Kinney AY, Croyle RT, Dudley WN, Bailey CA, Pelias MK, Neuhausen SL. Knowledge, attitudes, and interest in breast-ovarian cancer gene testing: a survey of a large African-American kindred with a BRCA1 mutation. Prev Med. 2001;33:543-551.
43. Hughes C, Fasaye GA, LaSalle VH, Finch C. Sociocultural influences on participation in genetic risk assessment and testing among African American women. 2002. Paper presented at: the 6th International Symposium on Predictive Oncology and Intervention Strategies; February 2002; Paris, France.
44. Donovan KA, Tucker DC. Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. J Behav Med. 2000;23:15-36.
45. Schwartz MD, Benkendorf J, Lerman C, Isaacs C, Ryan-Robertson A, Johnson L. Impact of educational print materials on knowledge, attitudes, and interest in BRCA1/BRCA2: testing among Ashkenazi Jewish women. Cancer. 2001;92:932-940.
46. Jackson AP, Sears SJ. Implications of an Afrocentric worldview in reducing stress for African American women. J Counsel Devel. 1992;71:184-190.
47. Bowen DJ, Christensen CL, Powers D, Graves DR, Anderson CAM. Effects of counseling and ethnic identity on perceived risk and cancer worry in African American women. J Clin Psychol Med Settings. 1998;5:365-379.
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52. Brown CM, Segal R. Ethnic differences in temporal orientation and its implications for hypertension management. J Health Soc Behav. 1996;37:350-361.
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Dr. Esplen is a scientist at the National Cancer Institute of Canada. She is also head of the Program of Psychosocial and Psychotherapy Research in Cancer Genetics in the Department of Psychiatry at Mount Sinai Hospital in Toronto, Canada, and assistant professor in the Departments of Psychiatry and Nursing at the University of Toronto.

Dr. Hunter is head of the Psychosomatics Program in the Department of Psychiatry and director of psychosocial oncology in the Marvelle Koffler Breast Centre, both at Mount Sinai Hospital.

Acknowledgments: The authors wish to thank to Ms. Kate Butler, the project coordinator of this study and all the women who participated in the study groups. This work was supported by Canadian Breast Cancer Research Initiative grant #9684 and by a career scientist award from the National Cancer Institute of Canada granted to Dr. Esplen.


 

Abstract

The literature suggests that women with a family history of breast cancer have high perceptions of their personal risk for breast cancer, which can often promote emotional distress such as anxiety, depression, and grief.

Objective: This paper reports on loss and grief in  31 women who participated in a study of a supportive-expressive group intervention for women with a family history of breast cancer (at least one first-degree relative with breast cancer). The literature on grief is reviewed.

Method: The women participated in a pilot study of a 12-session, 6-month supportive-expressive group intervention designed for this population. Pre- and post-group psychological measures were given, including a standardized measure of grief.

Results: The amount of loss that these women had experienced was significant: 30 out of 31 women described losing a loved one, this loss was due to breast cancer in 21 cases. In 19 cases the loss was of a mother. A baseline measure of grief prior to the group intervention demonstrated an intensity and pattern congruent with unresolved or acute grief. There was a statistically significant reduction in grief from pre- to post-intervention.

Conclusions: The findings described in this paper support the theoretical and clinical observations reported in the literature on loss and grief in women with a family history of breast cancer and have relevance for future interventions for this population of women.

 

Introduction

Breast cancer has an impact on the whole family. The descriptions in the literature of first-degree relatives of women with breast cancer1-7 indicate increased levels of perceived risk for breast cancer, anxiety, depression, and grief. High levels of intrusion and distress have been found to impede counseling interventions geared toward improving accurate risk perceptions for breast cancer,3-5 which may be associated with both lack of compliance with screening recommendations such as mammography or with excessive breast self-examination (BSE) or other screening activities.4

During the risk counseling process a woman observes patterns in her family through the presentation of a genogram, which includes the number of diagnoses, the closeness of the diagnosed relatives to herself, and the number of deaths due to cancer in her family.8 A woman receives an “estimate” of her personal risk of breast cancer based on family history and, in some cases where patterns indicate a possible genetic mutation of BRCA1 or BRCA2, may be offered genetic testing.8

It is often the case that a woman feels very aware of her own risk for breast cancer due to her experience of close family members dealing with the disease. Many women in this circumstance have lost family members to cancer and participated in caring for the female relative with breast cancer. Such events can result in the loss of normal childhood or adolescent experiences.1,2 Furthermore, the literature suggests that the risk counseling process generates an additional sense of loss, underlining an “impaired invulnerability” as women observe and contemplate their own family history. This may be experienced as a loss of confidence around their present and future health.6,9,10

This paper reviews the relevant literature on grief, presents a clinical example relating the impact of loss and grief for women with a family history of breast cancer, and reports on the quantitative grief data from a study9,10 investigating the impact of a group support intervention.

 

Literature Review

Although there is little empirical evidence for grief amongst women with a family history of breast cancer, some studies have looked at the broader psychological impact on women who have experienced breast cancer in their families. Wellisch and colleagues1,2,11 studied daughters of women diagnosed with breast cancer and found that daughters who were adults at the time of their mothers’ diagnoses had the least adjustment problems, those who were children at that time had moderate adjustment problems, and those who were adolescents had the greatest overall general adjustment difficulties. In addition, the subgroup of daughters with deceased mothers had greater adjustment problems. Furthermore, Wellisch and colleagues found that the only independent variable (from a potential pool of fourteen independent predictor variables) that predicted nonresolution of feelings about the mother’s breast cancer was the alteration of long-range life plans due to the mother’s illness.1,2,11 These included such changes as altering school or marriage plans, or not moving because of the mother’s illness.11,12
 

Wellisch and colleagues1,11 have speculated that difficulties associated with the insufficient resolution of the premature loss of a mother at an early life stage contributes to the later problems encountered by women with a family history of breast cancer. Thus the presence of grief as a significant factor seems likely in this population. The long-term consequences of maternal loss are difficult to ascertain because they are contingent on several mediating variables.13 However, multiple ramifications such as additional domestic responsibilities, the temporary psychological loss of the surviving parent, the permanent loss of the family unit, and the potential financial burdens, are possible.2,14 Consequences such as these are reported by women who have experienced the death of their mother from breast cancer, as shown by the case example discussed later in this article.
 

Other historical writings also address the issue of grief and loss. The phenomenon of grief was first described psychologically by Freud,15,16 who referred to the process of reviewing the internal world after bereavement as “the work of mourning,” or “grief work.” This provided an explanation for the phenomenon termed “obsessional review,” a well-documented component of grief.17,18 Others19,20 have since introduced the notion of grief work being in “stages.”
 

There are many descriptions of abnormal grief classified by terms such as “delayed,” “chronic,” “pathological,” and “morbid.”21-27 Grief has been described as being normal, exaggerated, abbreviated, inhibited, and anticipatory,21,22 and time-limited,28-30 or as a dynamic process “changing over time.”31
 

Individuals can experience aspects of grief and feel as if they have resolved certain issues, such as anger or guilt, only to have them resurface at a later point in time.31,32 Grief is also pervasive in that it can affect every aspect (physical, emotional, spiritual, and social) of the lives of people who experience significant loss.25 For example, characteristics of bereavement such as fatigue, loneliness, anxiety, somatization, guilt, anger, denial, social desirability, and depression have all been investigated in the literature.25-27 Both the “resurfacing” aspect of grief, and its pervasiveness, are pertinent to the experience of women with a family history of breast cancer, who are continually exposed to breast cancer-related activities such as the genetic risk counseling process and breast screening examinations.
 

Studies of life events suggest that the most difficult life-change events are those that require people to undertake a major revision of their assumptions about the world. Such events are lasting in their implications rather than transient and take place over a relatively short period of time, leaving little opportunity for preparation.31 These attributes are also frequently relevant to the experiences of women with a family history of breast cancer.
 

Lerner and Lerner33 suggest that the impact of loss covaries with the extent to which the psychic structures have been internalized and are autonomous from the sustaining object. Given that the lost object served a function for the person, the loss must be resisted (ie, denied) until the function has been replaced. The person may deny the loss in the hope of completing the developmental process of separation and autonomy with the now introjected object. Similarly, Horowitz and colleagues34 suggested that incomplete early separation from the mother figure rendered a person especially prone to pathological grief. Clearly this suggestion is pertinent to women with a family history who lose a mother to breast cancer at a young age.
 

One theoretical model that has been extremely influential is the attachment model of grief originally developed by Bowlby.28,35,36 Bowlby maintained that when close affectional bonds are threatened, powerful attachment behaviors, such as clinging, crying, and angry protest, are activated. The effective mastery of bereavement involves passing through phases of mourning, which include periods of depression. Eventually, individuals enter the final phase in which they are able to break down their attachment to the lost loved one and start to establish new ties to others and a gradual return of former interests.
 

Bowlby28 suggested that the inability to accept and express anger can lead the bereaved individual to remain preoccupied with thought and action directed at the lost object. Striving for the return of the lost object becomes repressed and unconscious. The unconscious yearning and displacement of anger are both understood as attempts at reunion with the lost object.13 Such preoccupation and anger are characteristic of some women with a family history of breast cancer who have sustained distress and anger.
 

The bereaved woman may also identify with the lost object and her family function. Sometimes social or familial pressures determine this proxy response. For example, following the death of a mother, the oldest female child may assume the caretaking role with the younger siblings—a type of event frequently described by women with a family history of breast cancer.
 

 

Indicators of Pathologic Grief

Indicators of a pathologic grief reaction may be characterized by excessive anger, guilt, self-blame, or depression.31 Changes in behavior may include avoiding reminders of the loss event or avoiding/forbidding references to the death within their family or social network.13,31,37,38 Additionally, when an individual cannot speak of the deceased without experiencing intense and immediate grief, even if many years have passed since the loss, pathological grief should be considered.37,38
 

Risk factors associated with loss and difficulties in adjustment or unresolved grief include the nature of the loss (ie, parental loss versus extended family member or child loss), availability of social support, developmental level of the surviving individual, open permission to mourn, and personality style (eg, being the “strong one” in the family).13,31,38
 

 

Method

The study was designed to develop, describe, and complete pilot testing of a supportive-expressive group therapy for women with a family history of breast cancer. This article reports on pre- and post-intervention results of the grief measure. All women were recruited from two risk-counseling clinics for breast cancer and met the following inclusion criteria: age 18–65 years, having an “inaccurate” personal risk perception for breast cancer that was, on average, double that of the objective risk estimate given in the counseling session, at least one first-degree relative with breast cancer, and fluency in English.
 

Following a description of study procedures, written informed consent was obtained and the women attended a supportive-expressive group intervention. A battery of standardized psychosocial measures, which included a measure of grief, were given pregroup at 8 weeks, at 6 months (postintervention), and at 1 year.
 

 

The Supportive-Expressive Group-Therapy Intervention

The grief literature suggests that factors such as emotional support, protection through the period of helplessness, and assistance in discovering new models of the world appropriate to the emergent situation, are required for successful change around grief processes.31 Supportive-expressive group therapy originated from an existential therapy background39-41 and incorporates many of these features.
 

The intervention consisted of eight weekly sessions (intensive phase), followed by four monthly booster sessions for a total of 12 group sessions (90 minutes each) over 6 months. The group incorporated supportive-expressive principles outlined by Spiegel and colleagues39-41 and was adapted for women with a family history of breast cancer.9,10 Supportive expressive group therapy uses techniques to encourage individuals to directly and openly express their thoughts and feelings in a nonthreatening, nonjudgmental and safe environment. The goals of supportive-expressive group therapy include the facilitation of mutual support, emotional expressiveness, improving family and social support, expanding the repertoire of coping skills, and detoxifying the threat of developing breast cancer.39-41 These components are described in detail elsewhere.9,10,39-41 On two occasions an “expert,” such as a genetics counselor or a medical oncologist, attended the group to answer the questions of the group participants. An active component of the intervention involved having two women included in the group who had been diagnosed with breast cancer at least 1 year ago. This feature of the intervention was planned to facilitate an opportunity for women at risk to explore any fears or questions with those women who had experienced and survived breast cancer.
 

Study Sample

A sample of 31 women with at least one first-degree relative with breast cancer attended the group sessions. Demographics are presented in the Table.

 

Reports of Loss

In addition to the general demographics, information on prior losses was obtained through self-reports and as part of the Texas Revised Inventory of Grief (TRIG). Of the 31 women, 30 reported “losing someone close to them” (97%), 21 (70%) reported having lost a close relative to breast cancer, 19 reported having lost a mother, and two indicated the loss of a sister. Of the total sample, 66% reported that the loss they indicated as the focus to complete the TRIG was a “relationship closer than any or most relationships they have had with other people either before or since.” In addition, 59% of the deaths associated with the reported losses occurred more than 10 years ago. Of those women who lost mothers, the mean age of the mothers at the time of death was 51.7 years of age (standard deviation [SD]=16.2) with a range of 32-–91 years of age. The mean age of the daughters at the time of death of a mother was 25.6 years (SD=14.6), ranging from 9–58 years of age. Thus, in this sample, 65% of the mothers died prior to reaching age 50 years and 71% of the daughters were under 25 years of age at the time of their mothers’ deaths.
 

Instrumentation

To measure grief, the TRIG, a standardized measure of grief with good psychometric properties such as α coefficients of 0.87 and 0.89 for past and present factors, respectively, was utilized.42 The tool is used to measure grief as a “present emotion of longing, as an adjustment to a past life event with several stages, as a medical psychology outcome, and as a personal experience.”42 The TRIG was developed using factor analysis and consists of a two-factor Likert-type measure of grief following bereavement. It is an easily administered self-report assessment and permits evaluation of the extent and nature of an individual’s personal reaction to bereavement. Intensity of individual or group means of grief reactions can be compared to normative means and ranges at each of four time intervals following the loss: within the first year, at 1–5 years, at 5–10 years, and after more than 10 years. In addition, the TRIG contains a set of clinical demographic questions such as, “How close were you to the person who died?”
 

The two grief factors are part I: Past Behavior and part II: Present Feelings. The Past Behavior subscale contains eight items which ask the subject to “think back to the time the person died,” provides content on a variety of life events that might have been disrupted by grief, and summarizes one’s initial adjustment to the death of a loved one. The Present Feelings subscale includes 13 items focusing on current feelings associated with the deceased, such as “I still want to cry when I think about the person who died.”42
 

Analysis

Descriptive statistics were calculated on the demographic variables and for the TRIG. In addition, paired t-tests were completed on the TRIG between pre- and post-intervention time points.
 

Results

The intervention had a significant impact on a battery of measures which included instruments of risk comprehension, psychosocial functioning, breast cancer risk factors knowledge level, and promoted screening adherence. These results are provided in detail in a previous report.9,10
 

The results of the TRIG are presented in the Figure. The “Past Behavior” mean of 22.9 (SD=7.2) at baseline is significantly higher than published norms, indicating considerable grief and significant disruption at the time of the prior loss.42 As one would expect, this subscale did not change over the course of the intervention because the subscale aims to capture the amount of disruption “at the time of the loss.” The “Present Feelings” pre-group mean of 36.3 (SD=11.9) represents a significant amount of grief and is in the upper quarter percentile for norms, (taking into consideration the amount of time since the losses occurred). In addition, the pattern of the two subscales measured before the intervention is congruent with a pattern of unresolved or acute grief.42

 

At 6 months following the complete intervention (intensive and booster phase) there was a statistically significant decrease in the “Present Feelings” mean score (P=.034). In examining the change in grief scores, for those who lost a close relative to breast cancer, the majority, (11 out of 19, SD=57.9%) of the study participants scored an average reduction of 5.7 points (or half an SD) on the Present Feelings subscale, indicating a moderate effect size in reducing the intensity of grief. The following case example will illuminate the clinically significant grief processing that occurred for many women in the program.
 

Case Example

“Ms. B” is in her mid-forties and came to the group expressing marked fear and anger, particularly towards the medical system. She had participated in caring for her mother until she died when Ms. B was 19 years of age. She became tearful particularly when describing her mother’s surgery, suggesting that her mother had been “butchered” and left with “horrible scarring.” She was immensely afraid of breast cancer and felt she would not accept chemotherapy or radiation treatment if she were herself diagnosed with breast cancer. She had chosen not to marry and had not had children. She was driven to obtain any information on diet and exercise or genetics that could assist in reducing her sense of risk. She was fearful to even identify a risk level for herself, stating that “it is just a number… and anything can come along and boost the risk up.” She also believed that if she stated what she felt her true risk was, “It may cause breast cancer to happen.” She was interested in genetic testing, but frequently inquired about whether or not there was some psychological test that could indicate whether or not she could handle the news.
 

Ms. B was amazed at the level of grief that she expressed in the group, believing that she had finished grieving more than 20 years ago. In the group she heard stories with themes of anger at the medical profession that echoed her own experience of her mother’s death. In particular, she had fearful images involving surgical procedures and treatments associated with breast cancer; she also suffered intense memories of concerning caring for her very ill mother. The women in the group shared their own losses with Ms. B and she was able over time to express her emotional reactions as well as gain a more accurate and balanced view concerning her own life, medical options, and health behaviors. Through the support, vicarious learning, and modeling in the group, she became able to relate to the loss of her mother in a less intense manner. In particular, she expressed feeling grateful for the closeness and caregiving experience she had experienced through the time of her mother’s illness. She was able to integrate the loss in a fashion that permitted her to separate her mother’s experience from her own.
 

By the end of the group, Ms. B was also able to identify differences in the medical system, such as treatment options and health preventive measures that could allow her to live her life currently with less hypervigilance. She developed the view that even if diagnosed with breast cancer, she could survive. In addition, she also discussed the loss of her mother more openly with her sister—her main link to her family—and developed a greater understanding of their unique and different reactions to their loss, which had been a factor in her experiencing a sense of isolation.
 

 

Discussion

These interesting pilot data add to the theoretical and clinical literature describing women with a family history of breast cancer who have experienced the loss of a significant other. The baseline demographic items suggest that the women who participated in the group intervention had undergone significant loss, particularly in relation to cancer, and in many cases at a young age. The baseline TRIG scores suggest that the losses occurred frequently during childhood or adolescence and indicates that there was considerable disruption and emotional impact during the acute bereavement period. These women experienced the loss of their mothers at a time when they were highly active in family roles. The fact that the mothers were young, on average, at the time of their deaths may have contributed to the sense of injustice and the notion, held by many group participants, that the death was highly premature. The women in this study may be similar to the sample described in Wellisch’s earlier study on daughters of mothers with breast cancer.1,2,11
 

The “Present Feelings” level further supports the hypothesis that women in this population have to contend with significant bereavement as the mean indicates a high level of grief. The elevated “Present Feelings” scores are remarkable, given that the average time since the occurrence of the loss was more than 10 years prior to measurement. The other baseline psychosocial measures (10) indicate that there was also a significant amount of other kinds of distress among these women, which is consistent with previous reports.43 For example, 37% of the women in the study exhibited depression in a clinical range for the CES-D and there were elevated levels of Intrusion and Avoidance as measured by the Impact of Event Scale.9,10
 

The “Present Feelings” mean and average change scores demonstrated a statistically and clinically significant reduction in current grief intensity following completion of the intervention, for the majority of participants. This finding is clinically significant given the magnitude of change and the fact that the grief processing and resolution occurred more than 10 years after the actual loss. It is also in contrast with an earlier report of a 6-week structured group intervention that failed to significantly alter a measure of grief in a similar sample of women.44 The grief experience, specifically when combined with high levels of intrusion or depression, may play a role in the inability of short-term or information-oriented interventions to modify inaccurate risk perceptions as has been noted in the literature.3,10
 

These findings suggest that women who have undergone significant prior losses may require intervention beyond individual risk counseling or a short-term psychoeducational intervention. Optimal interventions should aim to address the expression of grief and the emotions associated with earlier (and in some cases an ongoing) sense of loss.13,37,38 The supportive-expressive group is an ideal intervention in this regard, given its focus on emotional expression over a period of time with therapists skilled in eliciting and managing affect and through the facilitation of mutual support and the examination of existential themes.9,10 The vicarious learning and modeling that occurs throughout the group experience addresses these themes optimally. In fact, the group did “feel,” in many ways, like a bereavement or grief group to the therapists, particularly during the early sessions.
 

In considering the case, Ms. B was seeking risk counseling and the exploration, expression, and resulting discharge of affect that occurred in the group therapy may have permitted her to resolve her loss issues and allow for a more direct examination of information. By the end of the group intervention she was able to more readily integrate and process the complex risk information. She also exhibited more optimal coping in dealing with her breast cancer risk and even demonstrated a sense that she may not develop breast cancer or at least could survive it.
 

Limitations

This pilot study utilized a small sample and self-report measures, and therefore, these findings must be interpreted with caution. In addition, all the women were recruited through risk counseling clinics and this may limit the generalizability of the study. Despite these limitations, the data contribute to the empirical literature of women who have suffered losses to breast cancer and who present at risk clinics. These women may require additional intervention beyond that of standard care in order to address their concerns, modify risk comprehension, and facilitate coping. More definitive conclusions could be drawn from a prospective randomized controlled trial that is currently being conducted by our group.
 

Conclusion

This article reports on grief data from a pilot study of women with a family history of breast cancer, participating in a supportive-expressive group intervention. The sample suffered a significant amount of loss and exhibited high levels of grief, supporting theoretical and clinical observations in the literature. The supportive-expressive intervention appeared to alter the experience of grief, in a direction congruent with the resolution of acute grief. Supportive-expressive group therapy may be particularly relevant for women who have suffered severe loss due to breast cancer. These findings have implications for future descriptive research and intervention studies for women with a family history of breast cancer.   PP
 

References

1.    Wellisch DK, Gritz ER, Schain W, Wang HJ, Siau J. Psychological functioning of daughters of breast cancer patients: Part I: daughters and comparison subjects. Psychosomatics. 1991;32:324-336.
2.    Wellisch DK, Gritz ER, Schain W, Wang HJ, Siau J. Psychological functioning of daughters of breast cancer patients: Part II: characterizing the distressed daughter of the breast cancer patient. Psychosomatics. 1992;33:171-179.
3.    Lerman C, Lustbader E, Rimer B, et al. Effects of individualized breast cancer risk counseling: a randomized trial. J Natl Cancer Inst. 1995;87:286-292.
4.    Kelly, P. High risk women: breast cancer concerns and health practices. Front Radiat Ther Oncol. 1983;17:11-15.
5.    Kelly PT. Counseling persons with family histories of cancer. In: Newell GR, ed. Cancer Prevention in Clinical Medicine. New York, NY: Raven Press; 1983.
6.    Kelly PT. Understanding Breast Cancer Risk. Philadelphia, PA: Temple University Press; 1991.
7.     Kash KM, Holland JC, Halper MS, et al. Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst. 1992;84:24-30.
8.    Kash K, Lerman C. Psychological, social, and ethical issues in gene testing. In: Holland J, ed. Psycho-Oncology. Oxford University Press: New York, NY; 1998:196-207.
9.    Esplen MJ, Toner B, Hunter J, Glendon G, Butler K, Field B. A group therapy approach to facilitate integration of risk information for women at risk for breast cancer. Can J Psychiatry. 1998;43:375-380.
10.    Esplen MJ, Toner B, Hunter J, et al. A supportive-expressive group intervention for women with a family history of breast cancer: results of a phase II study. Psychooncology. 2000;9:243-252.
11.    Wellisch DK, Schain W, Gritz ER, Wang HJ. Psychological functioning of daughters of breast cancer patients: Part III: Experiences and perceptions of daughters related to mother’s breast cancer. Psychooncology. 1996;5:271-281.
12. Wellisch DK, Hoffman A, Goldman S, Hammerstein J, Klein K, Bell M. Depression and anxiety symptoms in women at high risk for breast cancer: pilot study of a group intervention. Am J Psychiatry. 1999;156:1644-1645.
13.    Piper WE, McCallum M, Azim HF. Adaptation to Loss Through Short-term Group Psychotherapy. New York, NY: Guilford Press; 1992.
14.    Krupnick JL, Solomon F. Death of a parent or siblind druing childhood. In: Bloom-Feshback J, Bloom-Feshback S and Associates, eds. The Psychology of Separation and Loss. San Francisco, CA: Jossey-Bass; 1987:345-371.
15. Freud S. Instincts and Their Vicissitudes in Collected Papers. New York, NY: Basic Books; 1915.
16.    Freud S. Mourning and melancholia. In: J. Strachey, ed. The Standard Edition of the Complete Psychological Works of Sigmund Freud. Vol. 14. London, UK: Hogarth Press; 1957:239-260.
17. Glick I, Weiss R, Parkes C. The First Year of Bereavement. New York, NY: John Wiley and Sons; 1974.
18.    Eliot, T. The bereaved family. Ann Am Acad Polit Soc Sci. 1932;160:184-190.
19.    Fulconer D. The adjustive behavior of some recently bereaved spouses. Unpublished doctoral dissertation. Evanston, Il: Northwestern University; 1942.
20.    Kubler-Ross E. On Death and Dying. New York, NY: Macmillan; 1969.
21.    Averill J. Grief: its nature and significance. Psychol Bull. 1968;70:721-748.
22.    Bonanno GA, Kaltman S. The varieties of grief experience. Clin Psychol Rev. 2001;21:705-734.
23.    Clark M. Healthy and unhealthy grief behaviors. Occupational Health Nursing. 1984;12:633-635.
24.    Jacob SR. An analysis of the concept of grief. J Adv Nur. 1993;18:1787-1794.
25. Katz S, Florain V. A comprehensive theoretical model of psychological reaction to loss. Int J Psychiatry. 1986-87;16:325-345.
26. Prigerson HG, Shear MK, Frank E, et al. Traumatic grief: a case of loss-induced trauma. Am J Psychiatry. 1997;154:1003-1009 .
27. Lindemann E. Symptomatology and management of acute grief. Am J Psychiatry. 1944;101:141-148.
28.    Bowlby J. Attachment and Loss in Loss, Sadness, and Depression. New York, NY: Basic Books; 1980.
29.    Parkes C, Weiss R. Recovery From Bereavement. New York, NY: Basic Books; 1983.
30.    Cowles KV, Rodgers BL. The concept of grief: a foundation for nursing research and practice. Res Nurs Health. 1991;14:119-127. Review.
31.    Parkes CM. Bereavement as a psychosocial transition: processes of adaptation to change in death, dying and bereavement. In: Dickenson D, Johnson M, eds. Death, Dying and Bereavement. London UK: Sage Publications; 1993.
32. Rigdon IS, Clayton BC, Dimond M. Toward a theory of helpfulness for the elderly bereaved: an invitation to a new life. ANS Adv Nurs Sci. 1987;9:32-43.
33. Lerner HD, Lerner PM. Separation, depression, and object loss: Indications for narcissism and object relations. In: Bloom-Feshback J, Bloom-Feshback S, et al, eds. The Psychology of Separation and Loss. San Francisco, CA: Jossey-Bass; 1987:375-395.
34. Horowitz MJ, Wilner N, Marmar C, Krupnick J. Pathological grief and the activation of latent self-images. Am J Psychiatry. 1980;137;1157-1162.
35.    Bowlby J. Process of mourning. Intl J Psychoanalysis. 1961;42:319-320.
36.    Bowlby J. Attachment and Loss in Attachment, Vol. 9. London, UK: Hogarth Press; 1982.
37.    Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner. New York, NY: Springer; 1982.
38.    Krupnick J. Bereavement During Childhood and Adolescence. In: Osterwies M, Solomon F, Green M, eds. Bereavement: Reactions, Consequences, and Care. Washington, DC: National Academy of Sciences Press; 1984.
39.    Spiegel D, Bloom J, Kraemer H, Gottheil E. The beneficial effects of psychosocial treatment on survival of metastatic breast cancer patients: a randomized outcome study. Lancet. 1989;10:888-891.
40.    Spiegel D, Spira J. Supportive-Expressive Group Therapy: Treatment Manual of Psychosocial Intervention for Women With Recurrent Breast Cancer. Psychosocial Treatment Laboratory Breast Cancer Intervention Project. Palo Alto, Calif: Stanford University School of Medicine; 1991.
41.    Speigel D, Morrow GR, Classen C, et al. Group psychotherapy for recently diagnosed breast cancer patients: a multicenter feasibility study. Psychooncology. 1999;6:482-493.
42.    Faschingbauer TR. The Texas Revised Inventory of Grief Manual. Houston. TX: Honeycomb Publishing Co.; 1981.
43.    Wellisch DK, Lindberg N. A psychological profile of depressed and nondepressed women at high risk for breast cancer. Psychosomatics. 2001;42:330-336.
44.    Wellisch D, Hoffman S, Goldman S, Love S. A group intervention for women at high risk for breast cancer. Psychooncology. 1998;7(suppl):272.

Dr. Meyer is associate in psychiatry at both Beth Israel Deaconess Medical Center and the Program in Psychiatry and the Law at Massachusetts Mental Health Center, and assistant clinical professor of psychiatry at Harvard Medical School, all in Boston, MA.

Acknowledgments: The author would like to thank Dr. Robert Simon for his comments and encouragement and Noreen O’Connor for her editorial assistance. The author reports no financial, academic, or other
support of this work.


 

Abstract

Neither mental illness nor its treatment is clearly separable into either medical and nonmedical components or on the basis of the different mental health disciplines.  Mental health care with multiple clinicians requires the resolution of inherent clinical and professional ambiguities.  Effective clinical care and risk management requires clarification of the individual and interprofessional duties and effective communication between clinicians.  Patient assessment for anticipatable therapeutic problems with multiclinician therapies can help assure therapeutic efficacy and lower clinician liability risks.

 

Introduction

In the current psychiatric world, split treatment has become a fixed part of the landscape. Whether the treatment is termed “split,” “collaborative,” “combined,” “coordinated,” “divided,” or simply “med backup,” the names for this mental healthcare paradigm underscore the ambivalence with which it is often viewed by clinicians.1 At the heart of this ambivalence are the clinical and professional conflicts that pose potential impediments both for quality clinical care and effective risk management. Split treatment is a part of the wider concept of mental health care provided by more than one clinician and across professional divides. Clinicians who practice split treatment must decide how the general conflicts inherent in this treatment paradigm apply to the mental health care of the individual patient under consideration. Only then can the clinician determine whether split treatment is an acceptable clinical option.

 

Potential Benefits and Problems Associated With Split Treatment

In communities that have a shortage of psychiatrists, split treatment increases patient access to psychopharmacology. For patients with mental disorders that call for multimodal treatment unavailable through a single clinician, split treatment may be the only pragmatic method. Furthermore, some patients feel that split treatment maximizes their choices as healthcare consumers by providing access to the greatest range of mental health treatments and treatment providers.

Physicians are familiar with the concept of delegating a portion of medical care and responsibility to another professional colleague.2,3 Practitioners are expected to confine their practice and responsibility to their individual area of expertise. In most medical settings this concept is supported by the separability of the patient’s illness into component parts that roughly correspond to the expertise of the clinician. In the diabetic patient, the endocrinologist attends to the patient’s insulin levels, the neurologist to the patient’s neuropathy, the ophthalmologist to the patient’s retina, and the nephrologist to the patient’s renal function. The primary care physician has the job of holding the clinical center.

However, mental illness is not similarly divisible. Neither mental illness nor its treatment is clearly separable into medical and nonmedical components or on the basis of the different mental health disciplines.4 While prescription refills are clearly medical, drug compliance is not. Though many drug side effects may be purely medical, a patient with mania secondary to antidepressant treatment requires both medical and psychotherapeutic intervention. Also, a depressed patient whose depression has worsened or who has become actively suicidal requires both medical and therapeutic intervention. Added to the difficulty of parsing out which clinician should be responsible for which aspect of the patient’s care is the fact that the split treatment fraction of the mental health treatment population is the sickest.

We know that a team of two or more clinicians requires more administration and communication than a single-clinician practice. Clinicians comprising a treatment team have less authority individually than if each were to conduct the therapy alone. The question of authority is further complicated by the frequent absence of an internal hierarchy or reporting relationship for the split-treatment team.

Psychiatrists and their mental health colleagues who practice split treatment are faced with clarifying their respective and shared clinical duties with the most severely mentally ill, with an illness that does not lend itself to being divisible along professional lines, and within a team that may lack a formal hierarchy and reporting structure. Another level of complexity may be introduced by the presence or absence of formal policies from a clinic or hospital.

Added to the clinical and professional ambiguities of split treatment is the concern that split treatment may increase liability exposure for the psychiatrist.5 Psychiatrists who participate in split treatment have the potential to see greater numbers of more severely ill patients than they could if they were singly responsible for all facets of the patient’s psychiatric care. Patients in split treatment often have more serious or treatment-resistant mental illnesses.  These two factors taken together would seem to confer a greater exposure to negative clinical outcomes compared to a psychiatrist who does not deal with split treatment.

 

Clinical and Risk Management With Multiple Mental Health Clinicians

Mental illness and treatment are not separable into respective professional specialties. Therefore, a psychiatrist and psychotherapist must create a treatment plan in which each clinician can answer the following questions:
• What is my clinical competence and duty to the patient?
• What is my relative clinical autonomy?
• What are the areas of clinician interdependence?
• Is there any specific agency or legal statute that has bearing on the treatment being offered to the patient?

Answers to these questions should incorporate available guidance from published reviews,4,6-8 professional ethical standards,2 and, where available, legal decisions or statutes pertaining to psychiatric practice.

Psychiatrists are always responsible for determining the scope of the psychiatric examinations that they perform. Patients, collaborating clinicians, and healthcare agencies may each have their own reasons to circumscribe initial clinical contacts. However, a psychiatrist cannot delegate the responsibility for that decision to anyone.2 It is unethical to medicate a patient whom the psychiatrist has not directly examined.9,10 There may be patients with whom a more circumscribed examination is clinically justified; a psychiatrist can weigh the immediate clinical benefits against the risks of not discovering what he/she may never have the opportunity to know or ask.

The clinical agency within which a mental health treatment has occurred, such as a hospital or clinic, can also have enormous impact on the liability risks for clinicians who are collaboratively providing mental health treatment. Agencies typically have policies that affect the professional credentialing, supervision, quality assurance, standard clinical assessment, and emergency clinical assessment for the care of patients. Violation of the agency’s accepted protocol is disastrous for risk management. In view of this, policies should not set unrealistically high standards that in practice cannot be followed.11

 

The Consultation

Perhaps the most narrowly delimited request for interprofessional collaboration is a psychiatric consultation. In this case, the patient is being treated by a therapist who is qualified through training, experience, and independent licensure. The psychiatrist is responsible for making a clinical assessment, collecting an adequate clinical database, and forming and communicating a professional opinion to both therapist and patient.

The psychiatrist should believe that the therapist is capable of handling the patient’s treatment. Psychiatrists should not perform consultations for therapists who do not have the necessary training, experience, and license, even if this conflicts with a patient’s choice of provider (eg, alternative therapy). It is unethical for any physician to participate in treatment with a clinician whom he or she believes to be unfit to manage a patient.12

Importantly, the psychiatric consultant does not assume any ongoing care for the patient or supervision of the treatment. The consultant’s only authority is over the opinion offered, and not whether its recommendations are followed. Both patient and therapist need to understand that the consultation does not represent continuing participation in the patient’s care. A consultation is the least ambiguous collaboration between clinicians because there are no shared clinical duties. A consultation is a time-limited event, not an indeterminate clinical process.

 

Ongoing Collaboration Between Independently-Licensed Clinicians

The most common form of split treatment is a collaboration involving “a mutually shared responsibility for the patient’s care.”2 As in a consultation, the psychiatrist should have a basis to believe that the nonphysician therapist is qualified by training, experience, and licensor to make the anticipated clinical judgments and interventions. Both clinicians have a responsibility to ask for and provide this professional information. It is also advisable for both clinicians to verify that each has adequate malpractice insurance. In the event of a bad clinical outcome and one underinsured or uninsured colleague, a liability action will seek the deeper pocket.

The two clinicians must agree upon the basics of the patient’s diagnosis, the anticipated therapies, and the risks that derive from the patient’s diagnosis and treatment. The major sources of clinical risk—suicide, violence, other types of impulsivity, worsening of the patient’s clinical condition, diagnostic uncertainty, and deterioration of the relationship with the patient—should be discussed to anticipate what response, if necessary, would be initiated and by whom.

Several of these issues have been the subject of excellent reviews.13-15 It is important to remember that risk assessment is an ongoing process concurrent with clinical care. It is not a one-time event. Most patients in split treatment have diagnostic factors that increase their statistical risk of suicide. Some of these patients have multiple risk factors such as a diagnosis of an affective or psychotic disorder and concurrent chronic pain, substance abuse, or history of (self) destructive behavior. Feelings of paranoia, humiliation, anxiety, or agitation are emotional springboards to behavioral enactment for patients already at risk.

Assessment of psychological and environmental mitigators of risk are equally important. Patients can be asked to articulate what events or relationships they view as important positive factors or attachments in their future. These factors can help a patient persevere through a serious illness. They can also be reassessed during the progress of  the treatment to clarify whether they still retain the same positive meaning for the patient.

Many clinicians will indicate that their patient has “contracted for safety”; sometimes the patient has already signed an actual document. Contracting for safety evokes the concept of a legally-binding agreement or promise between patient and clinician, and offers a false sense of security to both individuals. A patient may have believed what he/she signed, only to not believe it after leaving the doctor’s office. A patient’s belief that he/she is safe is simply one factor of, and not a substitute for, risk assessment.

Risk assessment involves a judgment of the patient’s vulnerability at the time of the examination and a hypothesis about the patient’s anticipated level of function in the immediate and intermediate future. In formulating the hypothesis, the clinician needs to evaluate the patient’s capacity to self-monitor and  communicate information to treating clinicians. Initiating this discussion can begin with asking the patient, “How would you know if things were getting worse?”

Most worrisome are historically impulsive patients with little capacity to notice whether they are deteriorating and those who are psychologically inhibited or unmotivated to collaborate with others about their distress. Risk management for these patients involves helping them foster conscious awareness of high-risk situations, premonitory signs of deterioration, and potential ameliorating responses. As an interim measure, clinicians may find it helpful to articulate concretized potential indicators of psychological deterioration and then construct a series of predetermined responses for the patient.

Certain issues of risk management are unique to split treatment. Both clinicians need to be aware that they have independent and interdependent duties for ongoing risk assessment. Psychotherapists will have more frequent opportunities. Psychiatrists and psychotherapists will be privy to different types of information from the same patient, partly based on the different relationships and partly on the different focus of inquiry for psychopharmacology and psychotherapy. Both therapists have the responsibility for sufficient direct examination of the patient consistent with the patient’s clinical status. Both therapists have a responsibility to let the other clinician know about any substantive change in the patient and/or treatment.

Clinicians should verify with each other their customary practices for emergency coverage during and after office hours and on weekends, holidays, and vacations. Both clinicians can increase their clinical efficacy and risk management by clearly showing the other clinician that they are easily accessible and want to be contacted for significant developments. Successful split treatment involves the development of a responsive system for sharing information. Clarity is the best counterweight to destabilizing clinical and interprofessional ambiguities.

 

When Split Treatment May Not Be Appropriate

Split treatment is not for every patient. Methods of clinical risk management notwithstanding, part of good clinical practice and good clinical risk management involves patient selection. Therapists who participate in split treatment can review the kinds of clinical issues that may make an alternative treatment modality preferable for a particular patient’s care. Some patients with severe character pathology are especially intolerant of strong or ambivalent emotions. Their capacity for projection, splitting, and projective identification may be unwittingly fostered by having two therapists between whom they can parse out polarized but unintegrated pieces of their experience. Patients with this sort of character problem will be better served with a single individual who possesses the right composite of therapeutic skills. The same can be said of patients who have had a history of strong negative transference reactions.

Rapid-cycling bipolar patients may pose a particular strain for split treatment due to the expectable reassessments and interventions that the two therapists will need to discuss and implement. The split-treatment team may find itself unduly burdened having to allocate large amounts of unreimbursed time for interprofessional communication. Split treatment of bipolar depression may pose some of the same risks because many of the drug treatments involve the risk of the patient switching over into mania.

Other clinical issues can increase the amount of patient oversight and discussion, thereby increasing the burden to the split-treatment clinicians. Treatment resistance, dual diagnosis, multiple or off-label drug regimens, or a history of impulse disorder could be relative contraindications to split treatment.

All psychopharmacology involves psychotherapy. A patient’s feelings of transference do not observe the professional division of duties that a psychiatrist and psychotherapist may have constructed in a split treatment. Psychiatrists who are acting as psychopharmacologists can anticipate that their short sessions with a patient will be sufficient for the development, but not the analysis of transferential feelings. The short sessions can also be an unintended problematic repository for a patient’s splitting off a part of the polarized ambivalent feelings that have developed in a psychotherapy relationship.

The psychiatrist in a split treatment team can be prepared to make comments that can identify and clarify the appearance of transference as a segue to referring the material to the psychotherapist, where it can be more fully explored. Patients who have a history of intensely ambivalent or mercurial transference relationships may not be appropriate for split treatment. These patients, in the midst of experiencing intensely positive or negative feelings toward a healthcare provider, may unwittingly play one clinician against the other to the detriment of their own care.

Psychiatrists may find it useful to ask patients about their experiences in other treatment relationships to anticipate some psychological responses to the current treatment. Patients who have felt shame or anger in response to feeling dependent may view taking medication and having a medication doctor as a similar narcissistic wound. Patients who have a history of idealizing important relationships may bring that same capacity to their experience of psychotropic drugs and having a psychopharmacologist.

Managed care organizations regulate access to treatment benefits. Treatment authorization and appeals processes represent additional unreimbursed administrative requirements for clinicians in a split treatment team who may already feel overextended by the time required for interprofessional collaboration about the patient. Notwithstanding these burdens, clinicians continue to have a duty to the patient’s welfare independent of the actions of a managed care organization.16 In the face of treatment authorization denials and in the absence of being able to make alternative fee arrangements, the clinician must make a good faith effort to arrange for other affordable mental health care for the patient.

 

When Split Treatment Does Not Work

Sometimes a split treatment proves unworkable. For example, the match between the two clinicians is poor, the patient’s illness is too thorny, the two clinicians have diagnostic or therapeutic differences that cause strategic conflicts in patient management, or the patient’s relationship with one of the clinicians has deteriorated.17,18

Clinicians should not be bound to a treatment that no longer meets their own standard of care regardless of whether or not the treatment conforms to the standards of some practitioners in the community. A clinician should respectfully resign from the treatment in a time frame that allows the patient and the other clinician to make appropriate arrangements. The patient’s best interests should guide which clinical misgivings or disagreements between clinicians are disclosed directly to the patient.8

Patients may want to change their therapist or psychopharmacologist during the course of their treatment. While the patient has that right, patients may be unaware that the remaining treating clinician cannot automatically agree to work with whomever the patient has chosen. The remaining clinician has the right and the responsibility to make an informed choice regarding whether or not the successor clinician will be acceptable in the newly configured split-treatment team.

 

Supervisory Collaboration Between Clinicians With Dependent Licensure

In some settings a psychiatrist may collaborate with another mental health professional who is licensed to work only with concurrent psychiatric supervision. A psychiatrist who supervises a psychiatric resident, medical student, or a psychology or social work trainee is working with a colleague whose license for clinical activity legally requires the participation of the psychiatrist. For some clinicians with dependent licensure (eg, a clinical nurse specialist), the type and frequency of psychiatric supervision may be specified by law.

In the case of concurrent care of a patient with a mental health professional trainee, the psychiatrist delegates and supervises in accordance with the abilities of the trainee. The psychiatrist retains some responsibility for the patient’s care, including that portion that was delegated. In one of the most famous malpractice suits in psychiatry, Tarasoff v Regents of California,19 the attorney for Tarasoff commented thus:

It is my view that if (the supervisor of the clinic) had personally examined the patient Poddar and made an independent decision that the patient Poddar was not dangerous to himself or his victim—Titiana Tarasoff—there would be no cause of action based upon foreseeability. However, (the supervisor) never saw the patient Poddar and ignored the medical records developed by his staff.

A similar sentiment was articulated in the sentinel case Cohen v New York,20 in which an inpatient under the care of a psychiatric resident left the unit and committed suicide. The court commented:

The treating physician did not, at this point in his medical career, possess the requisite skill or trained psychiatric judgment to, essentially unsupervised, provide ordinary and reasonable care to this decedent. There was not one but many errors of judgment made by a doctor not qualified in an unsupervised status to make a judgment; made by those in a supervisory capacity; and all made without careful examination.

Psychiatrists who supervise mental health clinicians with dependent licenses can assign their colleague a clinical task in the patient’s treatment, but they cannot assign the responsibility for the supervisory decisions. Those supervisory decisions should be informed by the training, experience, and individual competence of the trainee and by the clinical difficulties of the patient and the treatment.

 

Educational Supervision of Independently Licensed Clinicians

Psychiatrists who supervise the work of clinicians who are licensed for independent clinical activity have a reduced responsibility for the clinical work they are supervising. Often in mental health, the term “supervision” indicates an educational activity that does not include managerial authority for oversight, direction, and control of those being supervised. A psychiatrist who educationally supervises an adequately trained, independently-licensed clinician can reasonably expect that the therapist, not the educational supervisor, is the ultimate decision maker regarding the patient’s treatment.

In reviewing a complaint of negligent supervision in a claim brought by a patient against her therapist’s supervisor (Schrader v Kohout),21 the court focused on whether a doctor-patient relationship legally existed, commenting, “There could be no liability of malpractice in the absence of physician-patient relationship.” The court noted the following facts about the treatment and its supervision:  the patient and supervisor had never met; the supervisor had been paid by the therapist and not by the patient; the therapist testified that she had made all the treatment decisions; the supervisor had no access to the patient or the patient’s records; and the therapist controlled the flow of clinical information to the supervisor. The court found that there was no physician-patient relationship between the patient and the therapist’s supervisor and thus decided for the supervisor and against the patient.21

The court’s view of this legal question might not have been the same in a somewhat different clinical setting. The supervisor and therapist in Schrader v Kohout were in private practice. Had they both worked for the same outpatient clinic, the supervisor might have had authority to direct the therapy and access to both the patient and her records. Furthermore, if the supervisor were reimbursed by the clinic from funds the patient had paid for her treatment, the supervision might be legally viewed as a part of the treatment. Psychiatrists who supervise should consider these factors as they assess their liability exposure for activities that they may view as educational rather than clinical.

 

Promoting Interprofessional Clarity and Cooperation

Mental health treatments involving more than one clinician present enormous opportunities for clinical ambiguity and professional misalignment. Comprehensive assessment at the initiation of a split treatment can protect against many downstream clinical and liability risks. The depth of assessment of a colleague’s skills depends on the type of treatment collaboration, the responsibility that one clinician has for the other’s activities, and on the patient. Assessment can be difficult in the absence of reviewing a colleague’s actual work. However, some easily accessible information can aid in the assessment of a colleague’s skills:
• Is the colleague able to clearly represent the clinical data?
• Is the history coherent?
• Can the colleague reconstruct what was directly heard and observed in the office?
• Having been able to represent the clinical data, can the colleague make interpretive hypotheses based on that information?
• Has a phenomenologic diagnosis been made?
• Has a psychodynamic formulation been made?
• Can the colleague identify and understand transference and countertransference as it may manifest itself with the individual patient?
• Has the patient’s treatment and an overview of therapeutic interventions been formulated?

The answers to these questions can often be derived from initial discussions about the patient and can help guide any type of interprofessional collaboration.

Once the initial evaluation of a patient is complete, the greatest enemies of effective interprofessional collaboration may be clinician anxiety and shame and the resultant chilling of effective comminution. All clinicians worry that clinical uncertainty may lead to a loss of clinical authority and professional reputation. Discussion between colleagues of a patient’s negative transference or a therapist’s countertransference frequently raises concerns of revealing too much about one’s own psyche and of being pathologized by the collaborating clinician.22 Members of a split-treatment team can help counter these risks by making themselves easily available to colleagues and creating a climate where clinical uncertainty can be disclosed and discussed.

Clinicians who communicate an attitude of interest and shame-free tolerance toward their colleague’s uncertainty will foster the kind of open communication of new clinical data that is essential to a good working relationship. Clinicians should actively resolve clinical uncertainty or developing interprofessional conflicts. These conflicts are sometimes mistakenly deferred to a later time when it is hoped that the colleagues might have more of a professional working alliance. True alliances may evolve over time if founded on a working relationship that  can contain and resolve interprofessional clinical conflicts rather than avoid them.

 

Conclusion

In 2002, mental health clinicians have increasingly sophisticated interventions to treat mental illness. Mental health care that requires coordination of multiple clinicians is being promoted by a variety of forces: consumer choice advocates, public health services, and managed care organizations. Such coordinated care may offer more treatment combinations. Whether or not these combinations ultimately provide clinical and financial benefits, mental health care with more than one clinician has inherent clinical and administrative ambiguities. Those ambiguities need to be considered in light of the individual patient’s needs to clarify whether coordinated mental health care with multiple clinicians will pose insurmountable or soluble clinical and risk management dilemmas.   PP

 

References

1.    Goldberg RS, Riba M, Tasman A. Psychiatrist’s attitudes towards prescribing medication for patients treated by nonmedical psychotherapists. Hosp Community Psychiatry. 1991;42:276-280.
2.    Guidelines for psychiatrists in consultative, supervisory or collaborative relationships with nonmedical therapists. Am J Psychiatry. 1980;137:1489-1491.
3.    American College of Physicians. Ethics manual. Fourth edition. Ann Intern Med. 1998;128:576-594.
4.    Meyer DJ, Simon RI. Split treatment: clarity between psychiatrists and psychotherapists. Part 1. Psychiatr Ann. 1999;29:241-245.
5.    Macbeth JE. Legal aspects of split treatment: how to audit and manage risk. Psychiatr Ann. 2001;31:605-610.
6.    Appelbaum PS. General guidelines for psychiatrists who prescribe medication for patients treated by nonmedical psychotherapists. Hosp Community Psychiatry. 1991;42:281-282.
7.    Sederer LI, Ellison J, Keyes C. Guidelines for prescribing psychiatrists in consultative, collaborative and supervisory relationships. Psychiatr  Serv. 1998;49:1197-1202.
8.    Meyer DJ, Simon RI. Split treatment: clarity between psychiatrists and psychotherapists. Part 2. Psychiatr Ann. 1999;29:327-332.
9.    American Psychiatric Association. The Principles of Medical Ethics With Annotations Especially Applicable to Psychiatry. Washington DC: American Psychiatric Association Press; 1998.
10.    APA condemns Kaiser prescribing policy. APA Press Release No. 0012. April 14, 2000.
11. Meyer, D. The psychiatrist as supervisor: risk management issues. Rx for Risk. 1997;3:1-8.
12. Council on Ethical and Judicial Affairs. Code of Medical Ethics. 1998-1999 ed. Chicago, Ill: American Medical Association; 1999.
13. Simon, RI. Taking the “sue” out of suicide: a forensic psychiatrist’s perspective. Psychiatr Ann. 2000;30:399-407.
14.    Jacobs DG, Brewer M, Klein-Benheim M. Guide to Suicide Assessment and Intervention. San Francisco, CA: Josey-Bass; 1999.
15. Miller MC. A model for the assessment of violence. Harvard Rev Psychiatry. 2000;7:299-304.
16. Wickline v State, 192 Cal App3d 1630, 239 Cal Rptr 810 323 (1986).
17.    Ellison J, Smith J. Intertherapist conflict in combined treatment. In: Ellison J, ed. The Psychotherapist’s Guide to Pharmacotherapy. Chicago, Ill: Year Book Medical Publishers; 1989:96-115.
18. Busch FN, Gould E. Treatment by a psychotherapist and a psychopharmacologist: transference and countertransference issues. Hosp Community Psychiatry. 1993;44:772-774.
19.    Slovenko R. Legal issues in psychotherapy supervision. In: Hess AK, ed. Psychotherapy Supervision: Theory Research and Practice. New York, NY: John Wiley & Sons; 1980:468.
20. Cohen v State, 51 AD2d 494, 382 NYS2d 128 (1976).
21. Schrader v Kohout, 522 Ga App 134, SE2d 19 (1999).
22. Jacobs D, David P, Meyer D. The Supervisory Encounter. New Haven, Conn: Yale University Press; 1995.

Dr. Goldwater is a psychiatrist in private practice in Boston, MA.

Acknowledgments: The author reports no financial, academic, or other support of this work.


 

Abstract

In the managed care era, the physician-patient relationship is clearly under distorting economic pressures. Greater awareness of relational factors can aid physicians in forming solid relationships despite those constraints and can provide compassion as well as achieve liability prevention through understanding the broader dynamics of intimate relationships.

 

Introduction

The ancient and honorable doctor-patient dyad has by now thoroughly dissolved into algorithms of medical economic data. Washed away as well in the data stream is the distinction between the two complementary elements of health “care”: treatment and healing.

Treatment refers to the application of technique; healing refers to a body’s reparative responses to illness or injury. Many assume and a lot of evidence supports the notion that patient-physician psychology affects healing, at least indirectly, by fostering a patient’s willing cooperation with treatment. However, managed medicine allots precious few moments in which to establish a physician-patient alliance sufficient to support healing. Therefore, the medical new world order may be said to manage “health” or “health treatment” rather than health “care.”

The physician-patient alliance is also, and not coincidentally, the best protection for conscientious practitioners against the frivolous perception of malpractice. Patients may easily feel alienated from physicians who seem uninterested in them and unmoved by their plights. Some of these patients may be moved to file lawsuits in order to reclaim the human recognition of which they feel deprived by managed medicine. As Alan Stone1 wrote:

By bringing competitive market forces into medicine, managed care has demonstrated that the right financial incentives can reverse a century of rising professional standards and make health care just another mean and lean downsizing industry…. Market forces have inevitably had a devastating impact on traditional medical ethics, which is rooted in the doctor-patient relationship…. Patients cannot sue a [managed care] plan for damages even if its protocols, restrictions, and incentives clearly caused them harm. They can still sue doctors and hospitals, but not the [managed care] organizations….

Economists think this is just fine. A healthcare economist, while a psychotherapy patient, reminded a colleague several years ago of the conventional wisdom that underlies managed medicine: “The traditional physician does not really treat patients. We can show statistically that what physicians do is determined more by the effect of treatment on physician income than by what might actually treat an illness. Anyway, in general, it is the prevention of illness in the population, and not the medical treatment of individuals, which mostly improves overall life expectancy.”

To reconcile our sense of physician role with the forces of medical economics and to protect ourselves as best we can from the impatient, litigating mind, we must face a conceptual as well as a practical problem. Economic models cannot account for or describe an alliance such as that between the physician and the patient, because economic transactions are at best zero-sum. As a result, economic transactions are intrinsically adversarial.

Newtonian laws describe the dynamics of motion as actions and reactions, or equal and opposite exchanges. These actions and reactions balance each other so that overall there is no net change. In perfectly Newtonian style, microeconomics describes fair exchanges of goods and services for money. Just as in the interaction of bodies in motion, in an economic transaction there can be no net change. One gains only as the other loses. Hence, economic modeling, inherently, can only promote adversary psychology and not alliance psychology. In zero-sum transactions, therefore, there can be no “alliance” in which both parties may gain or conspire together against an outside force, such as an illness.

When physicians are employees of “macro” economic corporations, the situation is worse for alliance psychology than is “zero-sum.” Working for a corporation, a physician employee’s duty is first fiscal—to create “surplus value” that may pass along the corporate, alimentary canal toward the coupon clips of shareholders. The ethics of personal treatment must yield to the necessity of profitability.

To promote the physician-patient alliance as necessary for both proper care and litigation prevention, we must encourage new thinking.

First, we shall briefly recount the foundational mythology of the physician as healer. Then, we shall present a model of the stages of identification between physician and patient, which are the same as may describe the development of any intimate relationship. These stages will imply steps physicians may take to enhance their perception as compassionate healers. Finally, we shall consider how the mathematical abstractions of medical economics may be transformed, at least metaphorically, so that they may take the need for healing into account.

 

The Physician as Healer

The association of treatment and healing appears in the relationship between Asclepius and Chiron, which represents the mythic basis of Western medicine.2

In Greek myth, Asclepius was the first physician. His familiar symbol is the caduceus, an insignia in which a snake coils around a staff. Asclepius was a son of the god Apollo; Apollo rescued Asclepius from his unfaithful mother’s womb as she lay on her funeral pyre and gave the infant to the centaur Chiron, who taught Asclepius the skills of medicine. These skills included the ability to revive the dead—an art which Asclepius practiced with notable success. Hades, god of the underworld, complained to the chief god, Zeus, about this feat. Zeus, fearing that the practice of resurrection would upset world order (Asclepius was acting without managed care authorization), killed Asclepius with a lightning bolt.

A rarity among the nasty lot of centaurs, Chiron was a compassionate and loving individual; a veritable male mothering figure. Among the immortal Chiron’s other wards were the classic heroes Achilles and Jason.

Herakles (Hercules), in a battle with centaurs, accidentally but painfully and incurably wounded Chiron with an arrow. To end his eternal pain, Chiron gave away his immortality and exchanged places in the underworld with Prometheus, the divine, prime benefactor of humanity in Greek myth.

The story of Chiron and Asclepius leads us meaningfully to the story of Prometheus, a son of Zeus but a representation of human individuality.

Prometheus, as mentioned, was the chief benefactor of humanity in Greek mythology. In some stories, Prometheus actually creates humanity. He was a trickster who outwitted Zeus and stole fire from the gods to bestow upon humans. In response, Zeus punished Prometheus horribly. Eventually, Herakles rescued Prometheus from Hades by offering the suffering Chiron to Zeus in his place.

Taking Prometheus as one punished for the “original sin” of individuality, which means using one’s wits against authority, the stories of Chiron, Asclepius, and Prometheus prefigure the founding story of Christianity. The suffering Chiron redeems humanity from death by giving up his immortality in favor of Prometheus. Chiron suffered and died for our sins, redeeming humanity from hell.

These stories also hint at a modern psychology of medical healing consistent with our larger culture, as if to suggest that every physician needs to be like what some would call “Doctor Jesus.” Without the sense that a physician, to some extent, can share one’s suffering, even the ability to raise the dead is insufficient health care.

However, a culture of compassion cannot easily arise in a managed treatment environment. The managed care organization cannot represent itself as the wounded healer, despite any advertising campaign. Most concretely, and especially because patients cannot sue them, managed care corporations cannot be vulnerable to patients.

The following sections present a brief course in psychology as it applies to the physician-patient relationship.

 

The Developmental Psychology of Physician-Patient Relationships

The single characteristic word without which there is no such thing as psychology is identification. Most fundamentally, identification refers to the assignment of what one perceives to a category or type. Thus, one may identify a flying object as a bird, or an antique chair as a Louis XIVth. In psychology, one identifies types of other people as distinct from oneself by the roles they play in one’s mind—starting with “mother,” and moving on to “father,” “sibling,” and “physician”—and maybe also on to such prejudicial types as “villain,” “terrorist,” “blond,” or “queer.” As one matures, one moves from “identifying others as,” to “identifying with others as.” A sense of mature, healthy self arises from the sum of the roles one plays for those others with whom one identifies.

However, in social terms, “self and other” are often indistinguishable from “innocent versus guilty,” as though some people may be guilty simply of being different from oneself or of not being “like us.” It is interesting to note that to “categorize” derives from the Greek root word “kategoria,” meaning “accuse”; the Hebrew root “KTG” also means “accuse.”

The identification of others as types of people different from oneself thus likely precedes the development of identification with others as fellow members of the same category or type. Eventually, one may grow to realize that one is a person, and that one’s parents are also people, but likely not more quickly than parents may realize that their children are distinct and separate people from themselves.

 

“Stages” of Healing

I propose that there are four developmental stages of psychological identification leading to the separation of a child from his or her family as a whole, intact being, as which one may identify with others as beings very much like oneself. I find these stages more or less in operation over the course of any intimate or loving relationship, and I refer to them as I explain marital difficulties to couples whom I treat in psychotherapy. The four stages are:
Idealization (how an infant perceives a mothering parent, and the parent’s total power to gratify or destroy);
Mirroring (by age 2 years, how a small child must perceive his or her parents, as they may actually relate and respond to the child with compassionate understanding);
Internalization (by age 3 years, as a child starts to retrieve the idealized and mirroring attributions from one’s parents and works to internalize them to be able to perform these functions for oneself);
Separation (by age 6 years, as a child goes off to school, beginning to function as oneself).

The four stages repeat themselves with the onset of puberty and adolescence, and several times subsequently over the life cycle. Healing seems to develop within the physician-patient dyad in just this sequence.

First, just as a small infant must idealize parents, a patient must have “faith in” or otherwise “idealize” his or her caretakers. Physicians may “idealize” themselves in simple ways—for example, by wearing white coats, hanging credentials discretely on their office walls, and perhaps by occasionally clucking wisely. Regardless of such made-for-television role playing, a physician must attract confidence in and respect for his or her competence and good intentions. Sufficiently idealized figures may impart a mighty placebo effect: they can make one “feel better” simply by being present at the bedside.

Mirroring exists when a subject sees him or herself reflected back in another’s understanding; mirroring makes one feel that he/she exists within the consciousness of the “mirroring object.” By age 2 years, every child requires such mirroring because of the newly discovered power to displease parents during potty training. The subjective patient develops in the dyadic relationship with the idealized physician only as the physician “object” can “mirror” the patient, which means the physician must deal well with what the patient may feel upset about.

Thus, in the second stage of healing, patients and their families will need physicians to help them comprehend and accept what is happening. A physician must not fail to communicate a sympathetic understanding of the patient’s condition and experience.

In wholesome childhood development, a child internalizes both the idealized and mirroring images of the parents in the creation of an “ego,” or stable point of view. By internalizing functions formerly attributed to the parents, a child comes to be able to idealize, understand, and accept oneself.

In the third stage of identification as it applies to “healing,” a patient must be able to “internalize” his or her caretakers as ideal (providing treatment) and mirroring (providing compassion) so that the fourth stage of psychological “separation” from treatment may occur. The fourth stage implies the developing capacity to survive both the illness and the treatment, with minimal posttraumatic disruption.

In the first idealized stage of identification, caretakers are perceived as omnipotent, as “above” oneself. In the second stage, caretakers are perceived as suffering servants, as “below” oneself. This distinction exists in traditional societies as the difference between “fathering” and “mothering,” and in traditional medicine as the rank distinction between physician and nurse. In today’s medicine, the functions of various practitioners are more ambiguous. In the absence of the traditional reassurance of clear roles as related to clear ranks, especially with the reduction of “physician” to “provider,” careful attention must be paid to how one interacts with the patient, less the patient be reduced to merely a “client” or a “customer.”

In developmental psychodynamic psychology, the inability to unify “idealized” and “mirroring” figures accounts for a multitude of sins, including the psychopathology of many mental and personality disorders.

However, it is the failure to mirror which most of all accounts for the psychology of many malpractice suits, and not so much the disappointment in idealization one would expect as a consequence of presumed incompetence. The natural history of any intimate relationship (including marriage) will pass through the four stages of identification. It is predictable that any important relationship will begin with idealization and pass on to the need for mirroring once the “honeymoon” of idealization is over. Unless the relationship with a patient includes adequate mirroring, the inevitable fall of the physician from the pedestal due to his or her crumbling feet of clay will be truly shattering.

For internalization to take place in the healing process, and for separation to take place from the healing process, physicians and other caretakers must be able to play the compassionate “healing” role. The patient must not simply imagine or infer a physician’s compassion. The physician must feel it and know how to convey that feeling to the patient.

 

Conveying Identification

How can the physician convey his/her “identification” to the patient? What can one do with moments to spend? The four stages of identification may suggest specific salutary actions.

The physician must be able to be idealized, meaning that he or she must appear prepared, calm, organized, methodical, and knowledgeable.

At the risk of being simplistic, I suggest first that a physician review a patient’s chart—and pause long enough to allow the chart information to settle in the brain—before entering the examining room. One must not appear rushed. By not needing to refer to the chart during the examination to recall information such as the patient’s name, a physician will demonstrate simple courtesy and, more importantly, will model internalization. The physician will have “internalized” the patient sufficiently for him/her to be perceived as mirroring the patient; the physician will appear “to care.”

The physician must actively demonstrate mirroring; the physician must convey interest in the patient’s fears and hopes. One must ask the patient what he or she may fear, and demonstrate foreknowledge of what the patient may expect. A physician must provide reasonable access to follow-up conversations (eg, via telephone or e-mail).

Avoid relying on general questions such as, “Anything else I should know?” Be sure to find something important about which to ask follow-up questions. Ask the patient to refine or go deeper into a matter that he/she has brought up. Running down a list of symptoms does not necessarily demonstrate interest in the patient.

The physician must support internalization, which includes taking the time to discuss how a patient may follow his/her treatment instructions. Leave nothing about treatment to the patient’s imagination. Follow-up appointments during which the physician exhibits recollection of the patient are very important. Signs of internalization predict a wholesome separation from treatment, rather than a resentful and disappointed abandonment.

Among the signs of internalization leading to a successful separation from treatment is sticking to a regimen. Are prescriptions filled? Is diet improved? What are a patient’s supports? Does the course of illness threaten the well-being of a spouse?

 

Conclusion: A Lesson in Compassion From Modern Physics

I offer these stages of identification in the healing relationship specifically to argue for attention to patient care in a manner not to be dismissed as sentimentality. Were there time and space, I would continue this argument into the very nature of scientific perception.

I can say no more than this. It is widely understood that the quantum physicists of the early 20th century revised the notion of scientific objectivity, which previously theorized an absolute distinction between an observer and what could be observed. The new physicists realized the importance of the fact that nothing can be measured without affecting what is measured. While the amount of air released from a tire to measure its pressure does not importantly alter the remaining pressure in the tire, observing an object on an atomic scale or smaller does radically affect it. As a result, for example, one cannot measure both the position and the momentum of an atomic object at the same instant. Insofar as an object has position, it is a discrete particle fixed in time and space at the instant of its observation. However, insofar as an object has momentum, it is in motion, and so cannot have any specific position—as though it were a wave.

So, objects on the atomic scale as “wholes” must be perceived not as made up of objective properties existing all at the same moment, but as made up of complementary properties impossible to measure simultaneously. The resulting picture at any given moment of any atomic or subatomic object as a whole resolves only into a blur of uncertainty.

This 20th century “Uncertainty Principle” explains the world as we must participate in it producing paradoxes as we go, rather than as we may “objectively” observe it. The statistical mathematics of the Uncertainty Principle measures exactly how uncertain one may be in a given situation.

Observations on the atomic scale, therefore, reveal the wave-particle duality of matter and energy, in which entities sometimes seem to behave as discontinuous particles, and at other times as continuous waves. However, the larger the scale of the observation, the more the behavior of objects of matter is particle-like, and the less such behavior is wave-like. By the time an object reaches the size of a golf ball, there are no discernible wave properties, except as a ball may seem to move out of the way as one swings at it with a club.

Physical and social scientists mostly perform macroscopic, objective studies, summing the interactions of hosts of presumptive particles, which may just as well be either molecules of air, or human voters or consumers. We physicians work more as molecules within the population balloon than as social scientists measuring overall effects from outside of the balloon. Operating as we do at the atomic scale of human intimacy, as far as the economists looking at us are concerned, we physicians and patients exist in the difficult to imagine domain of wave-particle complementarity.

Healing and treatment are the complementary aspects of health care at the physician-patient micro level.  Treatment phenomena, all of which may be described as provider-consumer interactions, may very well add up to follow macroscopic, economic laws. In such interactions, there is no qualitative difference between the parties—provider and consumer are simply interchangeable particles. However, in our roles of physician and patient, we constitute wave phenomena—which amount to nothing that is measurable as they fold into the big picture.

It is only the failure of these relations as they come back to haunt us quantitatively in malpractice suits which directs our attention to these issues. It is as though our collective “wave phenomena” are offended because they are ignored, and strike back with a vengeance.

Understanding healing and treatment as a kind of wave and particle duality, perhaps we “can get some respect” from those economic scientists who would relegate our human relations to the dust bin of mythology, as well as from those business people who are alarmed at malpractice costs. Shame on us for needing to attend to elementary human relations only because “it costs us.”  Nevertheless, I hope that presenting a picture of the “stages of identification” may assist the discussion of these relations in an “objective” manner.   PP

 

References

1.    Stone AA. Managed care: the iceberg and Titanic. Harv Ment Health Lett. 1998;15(1):4-6.
2.    Greece: Myth and Logic. In: Grimal P, ed; Beadsworth P, trans. Larousse World Mythology. Secaucus, NJ: Chartwell Books, Inc; 1965:124-141.

Dr. Simon is clinical professor of psychiatry and director of the Program in Psychiatry and Law at Georgetown University School of Medicine in Washington, DC.

Acknowledgments: The author reports no financial, academic, or other support of this work.


 

Abstract

The standard of care requires that psychiatrists adequately assess patients at suicidal risk. An exception to the standard of care for performing adequate suicide risk assessments does not exist for the clinician practicing in managed care settings. However, it is often more difficult for the clinician to perform systematic suicide risk assessments due to a high volume of patients and limited time and treatment resources. Data-based adequacy of the clinician’s evaluation of suicide risk in the managed care setting depends on a number of factors. These include completing a formal suicide risk assessment, weighing suicide risk factors, obtaining information from collateral sources, assessing the working alliance between the patient and the clinician, and close collaboration with the treatment team in inpatient settings.

 

Introduction

In managed care settings, only the sickest patients are admitted to inpatient psychiatric units. These patients usually have a primary diagnosis of schizophrenia, major affective disorder, or a severe personality disorder with prior hospital admissions. Many of these patients have comorbid substance-related disorders. Most of the patients are at heightened risk of suicide. In outpatient settings, patients at suicide risk may be seen by clinicians in split treatment situations or for a few brief, authorized visits. In the managed care era, all but those patients at highest risk of suicide are treated as outpatients.

Predicting which patients will commit suicide is an impossible task.1 No professional standard of care exists for the prediction of who will commit suicide. Nevertheless, the clinician has a professional and legal duty to perform an adequate assessment of the patient at risk for suicide.2 A variety of suicide risk assessment methods are available.3-7 No model of suicide risk assessment has been empirically tested for reliability and validity.8 Clinicians are free to construct and use their own comprehensive risk assessment methods based on their training, clinical experience, and the pertinent psychiatric literature.

Clinicians’ suicide risk assessments range on a continuum from merely asking patients if they are suicidal to performing formal, systematic suicide risk assessments. Especially in managed care settings, the former is much more common because of the large volume of patients treated. Nonetheless, clinicians continue to have a professional, ethical, and legal duty to provide adequate care to their patients regardless of managed care restrictions and protocols.9 In managed care settings, clinicians need to gather information about patients quickly and accurately. By accessing multiple informational sources, the clinician can be confident that suicide risk assessment rests upon a firm factual foundation.

 

The Adequacy of Suicide Risk Assessment

In managed care settings, clinicians often practice under conditions of too little time and too little information. The liability risk of the clinician is high if insufficient information is gathered and the patient subsequently attempts or commits suicide. Errors of fact, rather than errors of judgment, greatly increase a clinician’s liability exposure. The clinician cannot make sound judgments in the absence of essential facts. If the clinician gathers sufficient information upon which to base an adequate suicide risk assessment but makes an error in judgment that harms the patient, it is less likely that a lawsuit will succeed against the clinician. Errors alone do not constitute malpractice. The clinician is not held legally responsible for mistakes provided due care was used in making clinical decisions.10

Since the standard of care is the assessment of suicide risk rather than prediction, the clinician’s confidence in the adequacy of the suicide risk assessment is paramount. Systematic suicide risk assessment is ultimately a data-informed clinical judgment. There is a direct correlation between the database upon which the risk assessment is conducted and the level of adequacy to which it can be ascribed. A convergence of confirmatory data from a number of sources acts as an adequacy indicator. The adequacy level of the clinician’s suicide risk assessment is dependent upon whether sufficient, reliable information has been gathered to support a systematic analysis of suicide risk.

Suicide risk assessment has been analogized to weather forecasting.11,12 Weather forecasters make probability predictions based on available data and computer models. For example, a weather forecast may predict “a chance of rain tomorrow.” Forecasters try to achieve additional accuracy by expressing the chance of rain as a percentage, such as 30% or 70%. Forecasters may add a numerical confidence factor to their predictions expressed on a scale of 1–10, 10 being the most confident. The confidence in any weather forecast is diminished by time. For example, the forecaster’s confidence is much greater for 24-hour predictions than for 3–5 day forecasts.

Though lacking probability and computer models, the clinician’s confidence in suicide risk assessment similarly depends upon the timeliness, sufficiency, and reliability of the data obtained and evaluated. If the clinician only asks a patient if he or she has suicidal ideation, intent, or a plan, the confidence in such an assessment must be necessarily low. When the clinician performs a systematic suicide risk assessment that accesses multiple data sources, confidence should be greater that the assessment identifies the patient’s level of risk. Like weather forecasts, frequent updates keep the suicide risk assessment current and maintain confidence in the assessment.

 

Suicide Risk Assessment—A Medical Necessity

Formal Suicide Risk Assessment

The purpose of suicide risk assessment is to identify modifiable suicide risk factors and to inform the clinician about the patient’s safety and treatment needs. Especially in managed care settings, the rapid identification of a patient’s treatable suicide risk factors and safety requirements is of critical importance. Suicide risk assessment is first an essential clinical tool that informs treatment, and only secondarily a risk management technique.

As noted previously, suicide risk assessments range from the clinically naive to the clinically sophisticated. On one end of the spectrum, just getting a perfunctory “yes” or “no” answer to the question, “Are you suicidal?” is an inadequate assessment. A layman can just as easily ask that question. On the other end, a systematic suicide risk assessment provides a higher degree of confidence that important sources of clinical information are not overlooked in the overall evaluation of the patient. The formal suicide risk assessment can be thought of as a data-gathering engine. Both risk and protective factors are considered in the overall determination of suicide risk. An adequate suicide risk assessment reliably informs treatment and management.

In a formal suicide risk assessment, clinical, interpersonal, situational, statistical, and individual risk and protective factors are assessed.8 Careful weighing of risk and protective factors as low, moderate, or high according to the patient’s clinical presentation provides additional confidence in the adequacy of the suicide risk assessment. Evaluating suicide risk factors without also considering protective factors diminishes clinical confidence, since that is only half of the suicide risk assessment. Further, differentiating overall suicide risk as low, moderate, or high provides for more clinical precision in determining the patient’s safety needs (eg, suicide precautions: 5-, 10-, or 15-minute check-ups or one-on-one supervision). In addition, a formal suicide risk assessment permits the clinician and utilization reviewer to provide managed care organizations (MCOs) with credible data needed for the decision to admit a patient and to determine the length of stay and appropriateness of discharge.

Risk factors can also be evaluated using a variety of data parameters that enhance suicide risk assessment.13 As noted, the patient at suicide risk can be assessed on a facilitating-protective axis. A patient who is assessed at moderate risk when considering only suicide risk factors may have an overall low suicide risk assessment when protective factors such as positive interpersonal relationships and work satisfaction are present.

Other parameters that enhance suicide risk assessment include necessary and sufficient (individual and situational) and acute and chronic risk factors. Suicides generally occur when both necessary (depression) and sufficient (perturbation) factors are present.14,15 For example, a patient with major depression who also experiences an important personal or occupational loss has both necessary and sufficient suicide risk factors. Short-term and long-term risk factors are frequently observed in patients with comorbid Axis I and Axis II disorders. Discerning acute from chronic suicide risk factors focuses clinical attention on treating and modifying acute suicide risk factors, especially with limited outpatient visits or brief hospital stays.

A major resistance to performing formal suicide risk assessment is the perception that it is an onerous and time-consuming task—it is neither. A formal suicide risk assessment is an integral part of the mental status examination performed at admission or initial intake in outpatient settings. Documentation of the suicide risk assessment takes just a few minutes. The initial suicide risk assessment needs to be systematic. Subsequent suicide risk assessments can focus primarily on the patient’s acute risk factors that have required hospitalization or outpatient treatment. Current protective factors are also assessed. Chronic suicide risk factors such as prior attempts, family history of suicide, and demographic factors are identified during the initial suicide risk assessment. Given brief lengths of stay and limited outpatient visits, the ongoing systematic assessment of acute suicide risk factors and the patient’s response to treatment and management become the center of clinical attention.

In managed care settings, much reliance is placed on no-harm or “suicide prevention” contracts because of the volume and rapid turnover of patients. A no-harm contract is inherently unreliable with a new and unknown patient. Even with known patients, no-harm contracts should not be allowed to create a false sense of confidence. There is no evidence that no-harm contracts diminish the risk of suicide; they merely create an illusion of safety. No-harm contracts often diminish the perception of suicide risk without changing the reality of risk. No-harm contracts are actually most useful when patients reject them; the clinician is not deceived by disingenuous assent. No-harm contracts that take the place of performing a systematic suicide risk assessment prematurely cut off the essential task of data gathering.16

The usefulness of the suicide risk assessment is further strengthened when it is conducted as a process rather than as an event. Suicide risk assessment is a “here and now” assessment that time rapidly attenuates.8 Suicide risk assessment as a process continues to incorporate changing clinical data about the patient as well as additional information obtained from the patient’s family or other sources. Suicide risk assessments should always be documented.

MCOs, of necessity, require that suicide risk assessment be a process. In inpatient settings, the hospital utilization reviewer is queried by MCOs regularly about a patient’s level of suicide risk. Hospital length-of-stay determinations are based on the clinician’s assessment of the patient’s suicide risk. Some MCOs contact the utilization reviewer daily. The absence of continuing suicide risk assessments leaves the utilization reviewer unable to respond to the MCO’s questions about a patient’s level of suicide risk. Premature termination of the patient’s insurance benefits may result.

 

Suicide Risk Factors

Suicide risk factors can be divided into three groups: long-term, short- term, and individual. Long-term suicide risk factors are derived from community-based psychological autopsies and the retrospective study of completed suicide by psychiatric patients.17 Long-term suicide risk factors for patients with major affective disorder are significantly associated with completed suicides 2–10 years following assessment.18

Short-term suicide risk factors are derived from prospective studies of completed suicides in patients with major affective disorders.18 Short-term suicide risk factors are statistically significant within 1 year of assessment. They are predominantly anxiety based, usually severe, and often treatable.19 Short-term risk factors include panic attacks, psychic anxiety, loss of pleasure and interest, alcohol abuse, depressive turmoil, diminished concentration, and global insomnia.18 Identification of modifiable risk factors that can quickly lower suicide risk provides important data for patient care in all managed care settings. Many patients admitted to psychiatric units experience acute, severe anxiety that drives suicidal impulses. Recognition and treatment of anxiety symptoms often diminishes suicide risk and promotes rapid stabilization of the patient.

Patient availability and accessibility to guns significantly increases near-term suicide risk. The clinician must determine if guns are accessible to the patient. The patient may deny that availability and access to guns exists. Family members or others who live with the patient should be asked if guns are present in the home. Locking up or hiding guns is insufficient. Patients who are intent on killing themselves manage to find ways of gaining access to guns that are hidden or locked away. Guns must be removed from the home and stored in a safe place. The recent purchase of a handgun, especially by a female patient, should alert the clinician that the patient is at very high risk for suicide.

General suicide risk factors derived from retrospective studies have a high base rate of occurrence in depressed patients who do not commit suicide (high sensitivity, low specificity).20 Suicide risk factors unique to the individual are often the most reliable in suicide risk assessment. Clinicians who have treated patients over an extended period of time usually are able to recognize the recurrence of suicidal patterns. Patients vary greatly in the way that they manifest their suicidal patterns. Some patients display unique, even idiosyncratic symptoms not described in the professional literature, such as sleepwalking, stuttering, or compulsive whistling that presage suicidal behavior. Other patients may experience more conventional patterns, such as suicidal ideation, within a few hours or days following the onset of early morning awakening.

In the managed care era, due to split-treatments, brief outpatient and partial hospitalization visits, short hospital lengths of stay, and rapid patient turnovers, the emergence of unique, individual suicide risk factors are not usually recognized by clinicians. Collateral sources of information from family or friends may provide this vital data.

 

Collateral Sources of Information

Given the short length of hospital stays for patients (often 3–5 days), the psychiatrist may have insufficient patient information to conduct an initial, systematic suicide risk assessment. Information from other sources must be obtained quickly and reliably. Prior hospitalization records should be obtained and reviewed. A faxed discharge summary should be obtained or a phone call made to prior treaters after proper authorization by the patient or substitute decision-maker. Sending an authorization by mail and waiting for the records to arrive is futile. The patient will have been discharged long before the records arrive.

Prior records are usually very informative. For example, the psychiatrist may learn that during prior hospitalizations the patient secreted potentially lethal instruments or cheeked medication. The psychiatrist may discover that the patient accepted voluntary hospitalization after being confronted with the prospect of involuntary hospitalization, only to sign out against medical advice shortly thereafter. This kind of information is especially important when the patient is being treated by the clinician for the first time.

Family members are often a very important source of information for suicide risk assessment. Fawcett and colleagues18 discovered that approximately 25% of patients at suicide risk do not admit to being suicidal. However, in most cases the patient had communicated suicidal ideation or intent to family members. Some patients will admit suicidal thoughts or intentions in the emergency room and be certified by an MCO for admission but deny suicidal ideation once in the psychiatric unit. Patients who deny suicide risk usually do not meet managed care criteria for hospital admission. Regrettably, clinicians may exaggerate suicide risk to ensure admission.

The confidence that the clinician places on information from family members is contingent. Information from family members or friends may be unreliable due to denial, shame, or ambivalence toward the patient, or due to mental illness in family informants. Social workers are valuable members of the treatment team who can provide in-depth family evaluations and access collateral sources of important information about the patient.

A patient’s family or friends may provide vital information that the patient will not or cannot give. For example, the patient may deny or minimize their abuse of alcohol or street drugs. However, the family may reveal that the patient has an extensive history of abuse related to depression and suicide attempts. Obtaining information about the patient’s truthfulness and impulsivity provides additional important data. However, family or friends may not be available immediately or at all. When suicide risk assessment is a process rather than an event, new information that becomes available both clinically and from other sources can be incorporated into ongoing suicide risk assessments. Although the patient may not consent, the clinician may need to talk with the patient’s family members if a suicide crisis develops.2

 

The Therapeutic Alliance

The therapeutic alliance between the clinician and the patient affirms the willingness of each party to work together for the benefit of the patient’s treatment.21 If a solid working alliance exists, the patient usually cooperates with the clinician in disclosing suicide risk. However, the therapeutic alliance may vary considerably between outpatient visits or during inpatient treatment sessions because of instability and volatility of the patient’s condition. There are patients who have maintained a solid therapeutic alliance only to kill themselves between outpatient visits or inpatient sessions. A sustaining therapeutic alliance was present during the last session but was overcome by a downturn in the patient’s clinical condition.

In managed care settings, the time spent by the clinician with the patient is often insufficient to develop and sustain a therapeutic alliance. The frustration and distraction felt by both the therapist and the patient over managed care limitations on treatment and administrative “red tape” can disrupt the working alliance. The clinician’s confidence that the patient has provided reliable information about suicide risk is uncertain. On the inpatient unit, the psychiatrist can obtain information about patients at suicide risk by working closely with the treatment team. The treatment team has “a thousand eyes.” Members of the team are continually observing and working with the patient. The psychiatrist’s visits with the patient are often relatively brief. Daily careful review of the patient’s chart invariably provides a treasure trove of clinical information recorded by the treatment team.

 

Miraculous Cures and Other Fictions

Certain anomalous clinical practices arise when clinicians attempt to “game” managed care policies and procedures. For example, additional hospital days are authorized by MCOs based on the clinician’s assessment of a continuing high level of patient suicide risk. Nonetheless, if the MCO determines that the patient can be treated in a partial hospitalization program or as an outpatient, authorization for additional hospital stay is denied. Faced with denial of patient insurance coverage, the patient may be declared “miraculously cured” by the clinician and discharged.

In the managed care era, a heightened risk of patient suicide arises from premature discharge.8 Uncertainty about the number of additional outpatient treatment or hospital days that the MCO may approve often destabilizes patients by disrupting a therapeutic termination and discharge process. Suicide risk assessment may help prevent a premature discharge that is likely doomed to fail. Formal suicide risk assessment provides a solid basis for appealing denial of benefits when patients remain at high suicide risk. If the appeal fails, the patient may still require additional hospital treatment. Although the quality of care may be negatively influenced by the MCO’s restriction of services, clinicians continue to have a professional and legal duty to provide competent care to their patients while still in crisis.13

Formal suicide risk assessment gives the clinician confidence that a realistic evaluation of a patient’s suicide risk has been performed. “Gaming” the MCO becomes unnecessary. Exaggerating the severity of the patient’s condition to qualify for MCO approval exposes the clinician to increased liability risk when the “miraculously cured” patient is prematurely discharged and then attempts or commits suicide.

A related conundrum arises if a psychiatrist issues a therapeutic pass to assess the patient’s ability to function outside the hospital.22 Writing an order for any kind of pass raises a red flag for MCOs. MCOs have greatly restricted the use of this important assessment and treatment intervention. Once a therapeutic pass is issued, the MCO may deny further hospital benefits based on the presumption that the patient is ready for discharge. Careful suicide risk assessment before issuing a pass and upon the patient’s return from the pass is essential in preventing a premature discharge. The patient may return from a pass in worse clinical condition than when he or she left the hospital.

By the time the patient appears ready for a pass, the clinician usually knows more about him or her. The clinician has had time to collect sufficient information from a variety of sources upon which to conduct an adequate suicide risk assessment. Unfortunately, psychiatrists are very reluctant to issue patient passes that may lead to the MCO denying further benefits. If the pass does not go well, a formal suicide risk assessment can support both the clinician and utilization reviewer’s attempts to obtain authorization for additional hospital days.

Finally, upon inpatient admission patients at suicide risk usually are placed on safety precautions. Most of these patients want to smoke. In some psychiatric units patients must leave the unit to smoke, which requires that they be taken off suicide precautions in order to receive a staff-accompanied off-unit pass. They may refuse nicotine gum, patches, or inhalers. In order to smoke, patients frequently deny suicidal ideation even though they remain at heightened risk. Patients can mount considerable pressure on the clinical staff to be allowed to smoke, even threatening to leave if their requests are denied. If not in the unit, the psychiatrist is contacted, informed of the patient’s demand to smoke, and told that the patient denies suicidal thoughts. Based on that phone call, the patient may be allowed to leave the unit to smoke. A suicide risk assessment should be performed by the clinician before such changes are made in a patient’s safety requirements. When safety precautions are prematurely discontinued, the MCO may determine that the patient is not at suicide risk and deny further benefits.

Patients who manipulatively declare that they are “suicidal” can test a clinician’s equanimity. This situation frequently arises in emergency rooms with individuals who want to gain admission to the hospital but are not felt to be at substantial suicide risk. Similarly, at the time of discharge, patients may claim that they are suicidal in order to avoid discharge. Some manipulative individuals have learned that the magic words, “I am suicidal” can lead to hospital admission or a forestalling of discharge. Clinicians frequently feel helpless, manipulated, and frustrated by this declaration, but nevertheless may passively acquiesce. Confronted with this situation, some clinicians feel that they cannot confidently assess a patient’s potential for self-harm, and the patient is admitted. Also, the ever-present fear of being sued if the patient is not admitted and commits suicide induces feelings of helplessness that can make the clinician yield to the patient’s manipulation.

Clinicians need not be held hostage by questionable threats of suicide. A data-based formal suicide risk assessment is the best antidote. Suicide risk assessment can provide the clinical confidence that replaces paralyzing doubt. Clinicians will not be held legally responsible for adverse outcomes such as patient suicide if reasonable suicide risk assessments are conducted and documented. However, psychiatrists will be held liable for malpractice if they breach the duty to exercise that degree of skill and care ordinarily employed in similar circumstances by other psychiatrists.23 Failure to adequately assess patients at risk of suicide is a deviation from the standard of care.

 

Avoiding Inadequate Assessment

As with weather forecasting, the clinician can determine the confidence he or she should place on the adequacy of the suicide risk assessment based on the data-gathering process that forms the foundation for the patient evaluation. Determining the clinician’s level of confidence in the patient data is essential for the treatment and management of those at suicide risk. The accompanying Table contains a suicide risk assessment data checklist that can be used by clinicians. The standard of care requires that the clinician gather sufficient information upon which to base an adequate suicide risk assessment. The checklist can alert the clinician to deficiencies in the data collection.

 

A formal assessment itself is the impetus to gather information about a patient’s level of suicide risk. The therapeutic alliance, though extremely important as a conduit of information about the patient’s mental state, can be absent, limited, or variable. The formal checklist reminds the clinician to consider multiple data sources that create the foundational basis for the overall evaluation of the patient’s suicide risk and the continuing suicide risk assessment process.

 

Clinical Vignette

A 42-year-old single man is admitted to a psychiatric unit from the hospital emergency room after threatening to jump off a building. The patient is extremely depressed and suspicious. He seems to be responding to auditory hallucinations. The patient provides minimal history. He is a first-time admission who is unknown to the psychiatrist and the hospital staff. Next of kin live in another state. The patient says he has not seen his parents and sister for over 5 years. The psychiatrist makes a preliminary diagnosis of major depression with psychotic features. The patient denies suicidal ideation, intent, plan, or prior attempts. A formal suicide risk assessment is not performed. He is placed on 15-minute suicide precautions. The treatment team notes that the patient is seclusive. He is found positioning himself by the exit door. Staff considers the patient to be an elopement risk. Agitation manifested by constant pacing is observed. The patient is prescribed a benzodiazepine with marked decrease in pacing.

The vignette is illustrative of a typical first-time admission from the emergency room of a general hospital to a psychiatric inpatient unit. Although a rudimentary suicide risk assessment is performed, considerable data are available for a more thorough suicide risk assessment, such as diagnosis and behavioral information including agitation, seclusiveness, auditory hallucinations, and an absent therapeutic alliance with staff.

A quick glance at the suicide risk assessment data checklist can remind the staff that much more information is needed. In the vignette, little confidence should be placed on the initial suicide risk assessment. As a result, suicide risk precautions must remain high. The first 24 hours following admission are critical for evaluation of suicide risk and safety management. As hospitalization continues, the treatment team learns more about the patient. The social worker usually contacts collateral information sources. More clinical data about the patient become available for a formal suicide risk assessment, especially when considering discharge.

In the vignette, the initial denial of suicidal ideation, intent, or plan by a seriously depressed, suspicious patient provides an inadequate and misleading suicide risk assessment. In the managed care era, the suicide risk assessment data checklist may help clinicians counteract this data deficiency.

 

Conclusion

Professional standards do not exist for the prediction of suicide. The standard of care does require that psychiatrists adequately assess patients at risk. An exception to the standard of care does not exist for the clinician practicing in a managed care setting. However, it is often more difficult for the clinician to perform systematic suicide risk assessments due to limited time and treatment resources. Also, with shortened hospital lengths of stay, the responsibility for treating an acutely ill patient shifts to partial hospitalization programs and other outpatient settings, where adequate suicide risk assessment continues to be just as important.

The adequate assessment of the patient at suicide risk requires the presence of reliable, timely information. A suicide risk assessment is only as useful as the information it is based upon. Data-based adequacy of the clinician’s evaluation in the managed care setting depends on a number of factors. These include weighing suicide risk factors, obtaining information from collateral sources, assessing the working alliance between the patient and the clinician, and close collaboration with the treatment team in inpatient settings. Data-based suicide risk assessment increases the clinician’s confidence in both treatment interventions and the safety management of patients at risk.   PP

 

References

1.    Pokorny AD. Prediction of suicide in psychiatric patients: report of a prospective study. Arch Gen Psychiatry. 1983;40:249-257.
2.    Simon RI. The suicidal patient: accepting patient risk and therapist anxiety. In: Lifson LE, Simo RI, eds. The Mental Health Practitioner and the Law: A Comprehensive Handbook. Cambridge, MA: Harvard University Press; 1998.
3.    Simon RI. Concise Guide to Psychiatry and Law for Clinicians. 3rd ed. Washington, DC: American Psychiatric Press; 2001.
4.    Jacobs DG, Brewer M, Klein-Benheim M. Suicide assessment: an overview and recommended protocol. In: Jacobs DG, ed. Guide to Suicide Assessment and Intervention. San Francisco, CA: Jossey-Bass; 1999.
5.    Maris RW, Berman AL, Maltsberger JT, et al. Assessment and Prediction of Suicide. New York, NY: Guilford Press; 1992.
6.    Chiles JH, Strohsall K. The Suicidal Patient: Principles of Assessment, Treatment and Case Management. Washington, DC: American Psychiatric Association; 1995.
7.    Clark DC, Fawcett J. An empirically-based model of suicide risk assessment of patients with affective disorders. In: Jacobs DG, ed. Suicide and Clinical Practice. Washington, DC: American Psychiatric Association; 1993.
8.    Simon RI. Psychiatrists awake! Suicide risk assessments are all about a good night’s sleep. Psychiatr Ann. 1998;28:479-485.
9.    Simon RI. Psychiatrists’ duties in discharging sicker and potentially violent inpatients in the managed care era. Psychiatr Serv. 1998;49:62-67.
10.    Macbeth JE, Wheeler AM, Sither JW, et al. Legal and Risk Management Issues in the Practice of Psychiatry. Washington, DC: Psychiatrist’s Publishing Group; 1994.
11.    Simon RI. Clinical Psychiatry and the Law. 2nd ed. Washington, DC: American Psychiatric Press; 1992.
12.    Monahan J, Steadman HJ. Violent storms and violent people: how meteorology can inform risk communication in mental health law. Am J Psychol. 1996;51:931-938.
13.    Simon RI: Taking the “sue” out of suicide: a forensic psychiatrist’s perspective. Psychiatr Ann. 2000;30:399-407.
14.    Schneidman ES. Definition of Suicide. New York, NY: Wiley; 1985.
15.    Goodwin FK, Runck BL. Suicide intervention: integration of psychosocial, clinical, and biomedical traditions. In: Jacobs DG, ed. Suicide and Clinical Practice. Washington, DC: American Psychiatric Association; 1992.
16.    Simon RI. The suicide prevention contract: clinical, legal and risk management issues. J Am Acad Psychiatry Law. 1999;27:445-450.
17.    Fawcett J, Clark DC, Busch K. Assessing and treating the patient at risk for suicide. Psychiatr Ann. 1993;23:244-255.
18.    Fawcett J, Scheftner WA, Fogg L, et al. Time-related predictors of suicide in major affective disorder. Am J Psychiatry. 1990;147:1189-1194.
19.    Fawcett J. Profiles of completed suicides. In: Jacobs DG, ed. Guide to Suicide Assessment and Intervention. San Francisco, CA: Jossey-Bass; 1999.
20.    Murphy GE. On suicide prediction and prevention. Arch Gen Psychiatry. 1983;40:343-344.
21.    Karasu TB. Psychoanalysis and psychoanalytic psychotherapy. In: Kaplan HI, Sadock BJ, eds. Comprehensive Textbook of Psychiatry. Vol 2. Baltimore, MD: Williams & Wilkins; 1989:1442-1461.
22.    Simon RI. Discharging sicker, potentially violent psychiatric inpatients in the managed care era: standard of care and risk management. Psychiatr Ann. 1997;27:726-733.
23.  Stepakoff v Kantar, 473 NE2d 1131, 1134 (Mass 1985).

Dr. Strasburger is assistant clinical professor of psychiatry at Harvard Medical School in Boston, MA, and attending psychiatrist at McLean Hospital in Belmont, MA.

Acknowledgments: The author reports no financial, academic, or other support of this work.


 

Abstract

Boundaries are defined as the structures and limits of psychiatric treatment which enable treatment to proceed. Boundary keeping is an essential aspect of medical and psychiatric treatment—a process which protects the patient and informs the clinician. Boundary crossings occur from time to time and, if properly attended to, can further the treatment. However, if not dealt with effectively, boundary crossings can become boundary violations—a destructive form of unethical behavior on the part of the clinician. This article will discuss various forms of boundary crossings and violations and offer suggestions for risk management through preventive measures.

 

Introduction

The concepts of boundaries and boundary keeping have attracted attention in recent years, partly as a result of media focus and partly as the result of a series of malpractice awards for purely emotional damages.1 Yet, this awareness needs to be renewed and deepened with respect to training about boundary issues (D Norris, MD, TG Gutheil, MD, LH Strasburger, MD, unpublished data, 2002).2 The clinical concept of boundaries makes possible the professional work of medical practice and psychotherapy, permitting them to flourish. The handling of boundary issues is as important to therapeutic technique as it is to risk management.

Understanding the concepts of boundaries and boundary keeping is central for medical practice, psychotherapeutic technique, and risk management.

 

Boundaries Defined

One can think of a treatment boundary as a spatial metaphor describing the interpersonal frame defining the edge of appropriate behavior in the therapeutic relationship. The metaphor “Good fences make good neighbors,” expressed in Robert Frost’s poem “Mending Wall,”3 is a good example.

In our work as psychiatrists, boundaries constrain the doctor in order to enable treatment. This constraint on the clinician imposed by boundaries contains and protects the patient, the clinician, and the therapeutic frame. Once the structure of treatment is established and the limits are formed, the process of human interaction can carry the treatment forward. Boundaries outline the stage on which the drama of clinical interaction can be played out. However, where the boundaries are breached or nonexistent there is no theater because the patient does not experience the safety and freedom to conduct an inner exploration.

The conscious application of a clear sense of boundaries should be thought of as a technique to enable and enhance treatment rather than merely as ethical protection for the patient or legal protection for the treating clinician. Keeping boundaries thoughtfully and carefully allows the clinician to experience situations redolent with the patient’s issues in the immediate present of the consulting room. These encounters can be discussed in therapy in terms of their meaning to the patient; it is just this discussion that preserves the therapeutic force of the doctor-patient relationship.

The issue of boundary keeping is a significant one whether the treating clinician is engaged in dynamic psychotherapy, general medicine, behavioral treatment, or psychopharmacology. All areas of medicine will be involved in a power imbalance with the patient and may be the object of magical wishes and attributions. Any doctor or clinician has an ethical responsibility to act in the patient’s interest and not to exploit a vulnerable patient for personal gain.

Although not every physician practices Freudian psychotherapy, Freud’s ethical principle of abstinence is the paradigm case for the theory and analysis presented here, and the ethical principles apply to all. According to Freud’s principle of abstinence, the clinician must refrain from improper gratification of himself from the medical relationship. No matter how “creative” his approach, the doctor must stick to business, remaining in role and at task.

Patients who are trusting (sometimes excessively) and frequently regressed often do not act self-protectively. Expecting to receive help, these patients assume they can let their guard down, creating vulnerability. Compounding this is an immediate power imbalance in the relationship in which the treating clinician has education, experience, status, and authority. For example, doctors in our society can ask almost any imaginable question, no matter how personal, to a patient. To someone who is unhappy or in trouble, the treating clinician appears to be a strong, successful person who has all the answers. The asymmetry exists even when one is treating a peer (ie, a fellow clinician).

Medical treatment is a system in which mere knowledge of the process confers power. Through experience, the clinician knows what to expect and has the power to influence the patient’s development in many ways. He can confer a sense of personal value simply through his paying attention, inspire emotional attachments, persuade the patient to do what is best for himself, and, alternatively, create confusion and conflict.4

Intimacy and the intensity of strong feelings in the clinical relationship may foster regressive longings, needs, and fantasies for both clinician and patient while weakening the good judgment required for self-control. When a patient’s infantile yearnings are revived, they often take the form of sexualized dependent striving. If the patient or treating clinician confuses these with adult sexuality, “familiarity breeds attempt” (SJ Welpton, MSW, oral communication, 1982). Patients more likely to exhibit this dynamic are those with borderline personality disorder5 or those who may have been previously abused “sitting ducks.”

 

Boundary Crossings

A lot of concern about professional boundaries has emerged because of the wish to prevent mild, nonsexual transgressions leading to frank sexual exploitation of patients. Sex with patients is a boundary violation; one would think that this hardly needs saying, yet it continues to occur and typically begins with minor boundary crossings.4

Boundary crossings are benign interactions which vary from traditional medical interactions but do not harm the patient. When doctor and patient are able to discuss these interactions and they are not part of a repetitive pattern, they may improve the relationship and advance the treatment. What seems to be a minor boundary crossing might be therapeutically beneficial (if properly handled), neutral (innocuous), or a boundary violation (improper, possibly dangerous in itself and possibly leading to more serious violations). Of course, a crossing that is not itself an unethical boundary violation may still be harmful to both the patient and treatment depending on the patient’s sensitivities and the doctor’s skill in handling them.

Answering two important questions can determine whether an interaction is a boundary crossing or a boundary violation: (A) Is this action a part of the professional role? and (B) Can the interaction be discussed? Consider some examples: a patient is unavoidably late after tending to a sick child and the doctor allows the appointment to extend beyond its usual limit; a patient stumbles upon leaving the office, falls to the floor, and the doctor helps the patient up making sure he/she is not hurt; a patient announces that his/her son has just died and the doctor accepts the patient’s tearful embrace. Each of these interactions represents a boundary crossing but probably not a boundary violation. Flexibility, human responsiveness, and warmth are still professional.

Other situations that rub the edge of boundaries include chance encounters, use of first names, and a variety of contact possibilities. It is a small world, and one may easily encounter a patient at the movies, in a museum, or at a party. It would be rude not to say hello, but ill-advised to get into an extended conversation. The significant risk of boundary violation here would be breaking confidentiality through openly acknowledging treatment. For chance encounters, a humane response is indicated.

The use of first names can become a boundary issue. How should the patient be addressed? To many patients, the use of first names is a familiarity that is expected because we live in an informal society. To some, the use of first names by a doctor feels condescending and infantilizing or overly familiar. Asking how someone wants to be addressed turns the issue into one of proper respect, though explicit permission does not always resolve the issue. The doctor must always use clinical judgment. A patient may beg to be called by a first name yet be unable to handle the intimacy which is engendered. A similar issue forms around what the patient calls the doctor.

Context frequently determines whether behavior is a boundary crossing or a boundary violation. For example, a doctor who gives a patient a ride home in a blizzard might be judged differently depending on whether public transportation was still running, whether the patient felt coerced by the doctor to accept the ride, and whether the doctor also gave the patient rides in mild weather. Assessment of the propriety and therapeutic appropriateness of this gesture also depends on the doctor’s conduct in the course of the ride (maintaining professional bearing, avoiding undue familiarity, not conducting therapy in the car) and whether the doctor explored the unusual encounter with the patient in a subsequent session. The latter brings the encounter into the context and boundaries of treatment, restoring the boundaries that have been breached.

Physicians almost always see their patients when hospitalized, but a psychotherapist deciding whether to call or visit an ill patient in a general hospital has to use careful clinical judgment. The benefits would have to be weighed against the patient feeling exposed or intruded upon. The context might depend on the patient’s history, the seriousness of the illness, the nature of the therapeutic alliance, and the patient’s preferences. Frank discussion clarifying the issue with the patient would be of considerable assistance.

The type of treatment is a factor in considering the appropriateness of professional behavior. Case management and most medical treatments are more (figuratively) hands-on than traditional psychodynamic psychotherapy. It might be entirely appropriate outreach for a case manager to render practical assistance to patients, arrange appointments, encourage socialization, set up transportation, or engage with families. For example, drug and alcohol counselors may attend Alcoholics Anonymous meetings with their counselees, a game of catch with a latency boy might be an important approach to forming an engagement and therapeutic alliance, a behavioral doctor might assist an agoraphobic patient in going to a shopping mall to overcome his fear, or a child custody evaluation might involve a home meeting. Each of these situations could be regarded either as a boundary violation or acceptable behavior depending on context or type of treatment. Different kinds of treatment have different boundaries, so that what might be a boundary violation in psychodynamic therapy would not even be a crossing in another context.

Self-disclosure, albeit a common precursor in cases of therapist-patient sexual exploitation, can be a means of adapting the frame to connect with the patient.6 With some patients who have difficulty talking, and particularly with adolescents, one might want to discuss sports or movies as a way of engaging the patient in the treatment process. In the course of this discussion a doctor may reveal a great deal about personal interests and activities. The boundary issue is not whether the treating clinician self-discloses, since people self-disclose whenever they open their mouths. The vital question is what is disclosed and for what purpose? When a doctor burdens a patient with his own problems, self-disclosure has gone too far. To establish alliance, what does the patient need? What withholding will the patient tolerate? Whether a clinician’s self-disclosure is a boundary crossing or a boundary violation may be subjectively determined by the patient’s needs. 

It is important that the clinician not misinterpret the concept of boundaries as prohibiting frank clinical inquiry about emotionally charged issues. One must take a sexual history from a patient, explore a patient’s fantasy life, and understand erotic or sexual transference feelings that can attach to any doctor. Anxiety about sexual boundary violations should not lead to avoiding discussions of a sexual nature with patients. In the clinical setting, open discussion should be the rule of thumb. Context and type of treatment are crucial determinates.

 

Boundary Violations

Boundary violations represent a failure to define and carry out the interaction as professional, not personal, social, or sexual. Boundary violations that stop far short of sex can still compromise treatment; they comprise many of the problematic interactions which precede frank sexual encounters.7 While boundary violations do not, in and of themselves, prove sexual misconduct, it is worth noting that juries give more credence to allegations of sexual misconduct where other boundary violations have occurred. The argument has been that where there is smoke, there must be fire.

The following examples of nonsexual boundary violations are taken from consultations with a series of over 125 clinician-patient sexual abuse cases: the patient runs seemingly inconsequential errands for the doctor which include mailing letters, returning library books, picking up the clinician’s laundry and groceries, doing household chores, and picking up the doctor’s children after school. In other cases, patients have been engaged to do the doctor’s professional billing, secretarial work, and to write academic papers for publication under the doctor’s name.

The list of inappropriate behaviors include going to lunch, dinner, movies, or family parties with patients and escorting patient to professional functions. In one case, a patient was made head secretary for the Department of Psychiatry which her doctor chaired. Dubious financial transactions have included charging purchases on a patient’s credit card, selling a boat to the patient, borrowing money from a patient’s retirement funds, and using “insider” investment information gained from the patient.

Sexual exploitation of patients does not usually begin de novo. The usual pattern is a gradual blurring of boundaries. In a typical scenario, the action begins with small and seemingly inconsequential behaviors such as extending sessions beyond scheduled time, excessive telephone conversations, or inappropriate self-disclosure leading to role reversal where the sessions begin to serve as “therapy for the therapist.” Perhaps gifts are exchanged or the doctor begins to direct work or life choices for the patient. In an early court case of “undue familiarity,” the patient was invited to the therapist’s home and asked to participate in parties, skating, and nude swimming. The judge ruled that the behavior would have been equally egregious if it had consisted of ballroom dancing and swimming with suits on.8

 

Patient Consequences

Harms to the patient, although common and (both clinically and legally) reasonably foreseeable, are not universal and vary in severity depending on the patient as well as the nature of the offense. The damage does not necessarily take the form of dramatic personal trauma. That happens in some cases of sexual transgression, but in a larger set of cases, sexual or nonsexual, there is first an undermining of treatment. If the relationship is sufficiently compromised by inappropriate personal and social communications, meetings, gifts, and the like, the doctor will no longer be able to serve in a professional role and minister to the patient’s health. These are substantial losses. Even where transgressions are nonsexual and relatively innocuous, they set up a “special” role for the patient. The “special” relationship may be initially gratifying, feeding the patient’s self-esteem. However, when it accelerates and finally crashes, the “cessation trauma”9,10 can be devastating.

Patients may not immediately recognize when they have been abused and exploited, especially when there has been no overt sexual relationship.  When there has been a sexual relationship, the effects have been well documented.11 The patient is caught in a deep ambivalence toward the doctor, wishing to escape from a destructive process but fearing separation. The patient’s guilt and sense of having caused the doctor’s behavior is similar to that experienced by incest victims. Often, patients develop a sense of pervasive isolation and feelings of emptiness and confusion which affect their ability to relate to others. Their ability to trust is severely compromised.

Victims fluctuate between rage and despair but are often unable to talk about the source of their rage.  Suicidal risk increases and cognitive deficits such as inattention, intrusive thoughts, flashbacks, and nightmares are common. Simple daily tasks may seem impossible to perform. A variety of diagnoses afflict these victims, including posttraumatic stress disorder, major depression, anxiety states and panic disorder, eating disorders, and drug and alcohol abuse. Also, personality disorders which had lain dormant may become aggravated. It is abundantly clear that no inappropriate bodily violation can be called “treatment.”

 

Liability

The clinician who has committed serious boundary violations faces real trouble in terms of liability. The professional damage often falls under five major areas of concern: 
(1) Civil lawsuits may be filed against the doctor and the institution in which the boundary violations occurred. Allegations may include negligent hiring, negligent supervision, and negligent retention; 
(2) Complaints may be registered with the clinician’s licensing board, resulting in suspension or revocation of professional license;
(3) In many states there are criminal penalties for sexual boundary violations;
(4) The clinician’s professional society may sanction him for ethics violations; 
(5) The lingering pain of bad judgment and the loss of professional respect endures long beyond the incidents and sanctions themselves.

 

Warning Signs

How can physicians help themselves and their colleagues manage the boundary risks inherent in interactions with patients? Monitoring one’s own behavior and reviewing the slippages with colleagues and supervisors is an ongoing task which is essential for treating clinicians. The following self-examination indices are behaviors which should raise red flags and trigger self-reflection:12,13 
• Recurrent erotic feelings about patients;
• Being lax about late-fee payment;
• Attempting to impress a patient;
• Tardiness in starting appointments;
• Allowing appointments to run overtime;
• Gossiping about a patient with colleagues;
• Frequent drowsiness during appoint-ments
• Encouraging overdependence;
• Excessive fear about a patient’s leaving treatment;
• Asking patients to do favors;
• A need to argue a point with a patient;
• Unnecessary or intrusive self-disclosures;
• Having appointments outside the office.

Epstein and Simon’s Exploitation Index13 also contains valuable questions that clinicians can ask themselves in order to forewarn against incipient boundary violations. The index includes searching questions such as:
• Do you find the chronic silence or tardiness of a patient a satisfying way of getting paid for doing
nothing?
• Do you accept gifts or bequests from patients?
• Do you disclose sensational aspects of your patient’s life to others?
• Do you recommend treatment procedures or referrals that you do not believe to be necessarily in your patient’s best interests, but that may be to your direct or indirect financial benefit?
• Do you find yourself trying to influence your patients to support political causes or positions in which you have a personal interest?
 • Do you find it painfully difficult to agree to a patient’s desire to cut down on the frequency of appointments, or to work on termination?

Similar self-examination questions can be found in Pilette, Berck, and Achber’s Nursing Boundary Index.14
 

Prevention

The best prevention against boundary violations are (1) having a satisfying personal life and (2) remaining in role and at task. Anyone who works with others in a helping capacity needs to be able to distinguish between normal human feelings and unethical acts. Are you ever attracted to clients? Of course you are.  The problem arises when one either acts on the feelings or allows too much energy to be drained by the feelings so that professional effectiveness declines.
 

Responses to Provocation

Provocative gestures, overtures, and leading questions from patients require a response. First, acknowledge your feelings to yourself. If needed, get supervision aimed at helping to understand your feelings evoked by the provocation. Confide in your peers, supervisor, or a professional consultant. One can deal with these feelings with help from colleagues or a therapist, learn to set them aside, and formulate strategies to deal with the provocative behavior. Such confidences to peers effectively remove the option to act out one’s impulses.  Establish a record of your having addressed the situation in an ethical, professional manner. Above all, never worry alone. Do not make the client’s problems your own; overidentification impairs judgment. Do not make your problems the clients’ problems; they have all they need. Do not share your sexual interests with patients. Nothing should be done when alone with a patient that could not be reported to a colleague or supervisor.
 

Seductive patients are testing limits. Recognize the line between compassion and passion. Set limits but do not be rejecting. Do express nonsexual caring, the basis of empathy. The patient should not have to act out to obtain warmth and caring, but one need not answer personal questions. Become adept with boundary-keeping responses. For example the patient’s question, “Are you married?” may be answered with a response such as, “What if I am and what if I am not?” Explore whether the question is related to treatment or an invasion of privacy. Clarify and emphasize that a personal relationship cannot be negotiated. “What is going on here?” and “That is not what we are here for” can be appropriate responses.
 

Try not to refer out—the patient does not need abandonment added to other problems. When the trainee or doctor says, “I am falling in love with the client” rather than referring the patient out, the supervisor should explore what is interfering with professional performance. Where referring the patient out is inevitable, accept responsibility for being unable to provide support and allow time to process the termination.  With regard to follow-up care of former clients, the client should be able to return to a professional relationship. 
 

Building Awareness

Trainees, staff, and patients all need education about maintaining boundaries. Staff meetings that focus on personal feelings and issues of boundary violations combat isolation. An open sharing of feelings about patients among staff is helpful. Personal feelings about patients are normal and inevitable and need not be repressed, denied, or explained away. Staff must learn to experience, identify, tolerate, and use their responsive feelings toward patients.
 

Educating patients is an important step that should not be forgotten.  Patients need to know that strong feelings are likely to develop toward clinical staff, that these feelings are normal and natural, and that discussing them is likely to be helpful. Teaching about the limits of acceptable behavior can be done by example, like responding to patient invitations or gifts with, “Let us discuss it.”
 

Supervisors must recognize that when staff is having difficulty or not having needs met, guidance is essential.  Reaching out for help is a healthy sign, and staff seeking supervision should be praised, not pathologized. Clinical supervisors should be good role models who offer examples of appropriate behavior. Supervision should not just take place during a crisis when there is a suspicion of wrongdoing, but on an ongoing basis. Everyday vigilance keeps individuals and organizations out of trouble.  
 

Conclusion

To come full circle, recall that a boundary is a protective, containing structure that enables clinical work.  Boundary crossings may be beneficial if dealt with properly. Boundary violations are destructive because they do direct harm to patients, and they divert and prevent good treatment. In Frost’s poem “Mending Wall,”4 he and his neighbor go out and pile stones to build a wall. In our work, the maintenance of boundaries is a one-person job—it is always and solely the responsibility of the professional. Still, the ultimate principle is clear: good boundaries make good treatment.   PP

References

1.    Gutheil TG, Gabbard GO. The concept of boundaries in clinical practice. Am J Psychiatry. 1993;150:188-196.
2.    Gutheil TG, Gabbard GO. Misuses and misunderstandings of boundary theory in clinical and regulatory settings. Am J Psychiatry. 1998:155;409-414.
3.    Robert Frost. Complete Poems of Robert Frost. New York, NY: Henry Holt Co.; 1949:47.
4.    Simon RI. Sexual exploitation of patients: how it begins before it happens. Psychiatric Annals. 1989;19:104-112.
5. Gutheil TG. Borderline personality disorder, boundary violations and patient-therapist sex: medicolegal pitfalls. Am J Psychiatry. 1989;146:511-602.
6.    Psychopathology Committee of the Group for the Advancement of Psychiatry. Reexamination of therapist self-disclosure. Psychiatr Serv. 2001;52:1489-1493.
7.    Strasburger LH, Jorgenson L, Sutherland P. The prevention of psychotherapist sexual misconduct: avoiding the slippery slope. Am J Psychotherapy. 1992;46:544-555.
8.    Landau v. Werner. 105 Sol. J. 527 (Cal 1961).
9.    Gutheil TG, Gabbard GO. Obstacles to the dynamic understanding of therapist-patient sexual relations. Am J Psychotherapy. 1992;46:515-667.
10. Gutheil TG. Patients involved in sexual misconduct with therapists: is a victim profile possible? Psychiatric Annals. 1991;21:661-667.
11. Epstein RS. Keeping Boundaries. Washington DC: American Psychiatric Press; 1994.
12.    Menninger K, Holzman P. Theory of Psychoanalytic Technique. 2nd ed. New York, NY: Basic Books; 1973.
13. Epstein RS, Simon RI. The Exploitation Index: An early warning indicator of boundary violations in psychotherapy. Bull Menninger Clin. 1990;54:450-465.
14. Pilette PC, Berck CB, Achber LC. Therapeutic Management of Helping Boundaries. J Psychosoc Nurs Ment Health Serv. 1995;33:40-47.

Dr. Bursztajn is associate clinical professor of psychiatry and Mr. Brodsky is senior research associate, both in the Department of Psychiatry at Harvard Medical School in Boston, MA.

Acknowledgments: The authors thank A. Stone Freedberg, MD, Patricia M.L. Illingworth, PhD, JD, and members of the Program in Psychiatry and the Law at Harvard Medical School, Massachusetts Mental Health Center, for their helpful dialogue. The authors report no financial, academic, or other support of this work.


 

Abstract

How does managed care contribute to the psychiatric hazards of medical illness? How can primary care physicians and psychiatrists (as treaters or consultants) recognize and manage the clinical dynamics that result, together with their liability implications? For patients in managed healthcare settings, a latent subjective sense of captivity triggered by care restrictions can exacerbate feelings of helplessness and hopelessness brought on by the threat of serious illness. This sense of captivity can also intensify the patient’s feelings of alienation and betrayal when managed care constrains patient-physician decision making. These emotional dynamics, together with the rigid, defensive reactions to which physicians sometimes fall prey in the face of managed care’s restrictions on professional autonomy, can compromise the patient-physician relationship and the quality of clinical care while heightening liability risk. In the extreme, some patients will experience the escalating distress characteristic of posttraumatic stress disorder. Clinicians can prevent this emerging form of iatrogenesis by using such strategies as crisis anticipation and preparedness, intervention, and damage control, with the goals of enhancing the patient’s decision-making capacity and recovering a sense of choice in the patient-physician relationship. The introductory, ongoing, and termination phases of the treatment alliance are analyzed as focal points for particular clinical interventions.

 

Introduction

There has been a growing recognition of the influence of managed health care on the doctor-patient relationship,1 including the forcing of primary care physicians into an alienating, ethically ambiguous, and clinically conflicting “gatekeeper” role.2,3 While financial constraints have always been a factor in clinical cases, one major consequence of managed care practices has been a concern as to the lack of meaningful healthcare choices for both doctors and patients. In this atmosphere, patients and their physicians—who face the threat or actuality of a major illness—may experience heightened feelings of helplessness and hopelessness, especially when healthcare benefits are denied. More dangerous still, some patients and physicians come to distrust each other, as when patients feel that physicians are not advocating for them, and when physicians feel that patients are “shooting the messenger” (ie, blaming the physician for managed care-initiated restrictions). In this atmosphere, physicians often avoid consideration of treatment alternatives they view as likely to be denied by a managed care reviewer, or feel compelled to focus on the catastrophic possibility in the differential diagnosis to obtain otherwise denied benefits.4 The final stage of this downward spiral of the physician-patient relationship can be a kind of mutual resignation, where the patient leaves with silent resentment while the physician acquiesces in the silence of a de facto gag clause.

The sense of virtual clinical captivity that patients and physicians can experience in the face of benefit denial need not be taken as a fait accompli. By becoming aware of the dynamics and dilemmas of the physician-patient relationship under managed care, treating physicians can create greater freedom for their patients and themselves to work together effectively. Useful clinical interventions can be implemented to recover a sense of choice in the doctor-patient relationship, while decreasing liability risk, by effectively anticipating, preparing for, identifying, and responding to the distress that is likely to accompany managed care restriction of clinical care.

There are compelling clinical and ethical considerations favoring a proactive stance by physicians who are aware of potential negative managed care influences on their patients. Given that helplessness and hopelessness have been documented to be predictors of negative patient outcomes (eg, in breast cancer),5 the undermining of the clinical process and the resulting loss of trust also undermine the potential for healing relationships and, in turn, the likelihood of positive health outcomes. Physicians who work to reverse this process are not just protecting themselves from liability, but also providing quality care by protecting patients from the consequences of helplessness, hopelessness, and distrust.

Although specialized consultation (eg, psychiatric) can be helpful in the face of a denial of healthcare benefits, it is important that primary care physicians have the tools and perspectives needed both to advocate for the patient and to support the patient when individually indicated benefits are deemed not “medically necessary.”6 An understanding of the dynamics of the physician-patient relationship in the managed care context can be helpful in adapting one’s clinical skills to the task of supporting the patient’s capacity for choice, hope, and trust.

 

Patient Dynamics: “Virtual Captivity”

Even as the prevalence of mental health problems such as mood and anxiety symptoms in primary care settings has come to be recognized,7 the cost containment strategies of managed health care have been found to inhibit the recognition and treatment of psychiatric disorders in medical treatment settings.8 Not only has a diagnosis of depression been found to be associated with patient dissatisfaction with medical care,9 but patients with high levels of depressive symptoms are less likely than the general population to act on their dissatisfaction by switching health plans.10 At the same time, the inability to choose one’s personal physician has been found to be a major determinant of patient dissatisfaction with their healthcare plan.11 The existing pool of trapped, frustrated, disillusioned patients also represents a potential tinderbox of litigation in the wake of tragic outcomes associated with managed care-influenced restrictions on effective treatment—in particular, restrictions on the building of therapeutic alliances in the doctor-patient relationship.

Serious illness that threatens an individual’s bodily or psychological integrity already poses a threat to a person’s sense of autonomy and control. Serious illness can heighten dependency while bringing with it feelings of helplessness, hopelessness, and distrust associated with depression. When faced first with a lack of choice of a provider, and then with restriction or even denial of care, the vulnerable patient, already feeling like a prisoner of the threat of serious illness, may now also begin to feel like a lonely captive of the healthcare system. This trapped, “nowhere to turn” feeling may persist after the illness is treated or even cured, as the patient, once burned by the denial of anticipated care or by worry over the prospect of such a denial, may come to think, “What if I get sick again? What care will I receive?” At the extreme, the patient may begin to experience, subtly but significantly, the emotional traumas associated with abandonment12 and captivity.13

Clinically, such experiences can generate cognitive distortions driven by anxiety—and depression—that may impair the patient’s capacity to temper realism with the hope necessary to tolerate uncertainty and to choose wisely from available alternatives.4,14 Moreover, the prospects for a supportive patient-physician alliance are undermined when the physician is seen by the patient as either untrustworthy or largely powerless to implement his or her own clinical recommendations and protect patient choices due to managed care pressure. The patient’s perception of physician trustworthiness may suffer, for example, when managed care drug formularies restrict the physician from prescribing a medication of choice. Even a trusting relationship, especially when it is founded on blind optimism,  can be destroyed by adversity together with perceived abandonment. As the patient’s distrust increases, responses can include such modes as “fight” (litigate), “flight” (drop out of treatment), or “freeze” (become numb, passive, demoralized, and unable to act effectively in the interest of one’s own health care). The resulting anxiety and depression can lead to a greater likelihood of dissatisfaction with medical care9 and to an impaired capacity to act on that dissatisfaction by changing health plans.10

 

Physician Dynamics: “False Necessity”

The human tendency toward resignation or self-deception and denial of what is too painful to see is not limited to patients. Often, the treating physician may not have freely chosen to be part of a particular managed care organization (MCO) nor to treat a particular patient, except as the best of a set of undesirable choices or the lesser of necessary evils. The physician is also likely to have experienced a substantial reduction of economic and professional autonomy in the shift to managed care. Like the patient, the physician may have few options and insufficient time to recognize, reflect upon, process, and put into perspective the feelings engendered by the managed healthcare context. Under any circumstances physicians are likely to react to a patient’s rejection by withdrawing emotionally from the patient. This reaction is especially likely, however, if the physician faces one frustrated, recalcitrant patient after another in a time-pressured managed care setting. At the same time, from the patient’s perspective, emotional withdrawal by a hurried and frustrated physician can easily be experienced as indifference to the patient’s suffering and a perceived abandonment.

Physicians are far from immune to the contagion of pessimism that can sweep through an institutional atmosphere, as in end-of-life care. Physicians who risk being penalized for caring for patients when, in the judgment of an anonymous third-party reviewer, there is no medical necessity to do so, are more likely to succumb to institutional pressures. Careful “not to raise the patient’s expectations” by effectively disclosing all possible options and advocating for the patient’s right to the best available care, they “hang crepe”15 as a prelude to premature discharge. In the extreme, some clinicians will automatically advise the patient and their family that only low-cost palliative measures be taken, not mentioning the more costly, intensive alternatives that may hold out a slim but real hope for the patient.

Such an atmosphere increases the risk that patients and families will give up prematurely while clinicians who are too distracted or time-squeezed to do the hard work of eliciting the patient’s and family’s deeper intentions go through the motions of obtaining informed consent.16,17 At the same time, some physicians react to their loss of autonomy and choice by making a premature cognitive commitment to diagnostic and treatment decision strategies designed to avoid punitive profiling practices. For example, a physician who is concerned about being identified as readily willing to hospitalize a patient for observation and evaluation will tend to avoid the risk of being deselected by the MCO. This avoidance can manifest itself in the doctor-patient encounter as a fixed, overly rigid stance or a reluctance to present alternatives to the patient other than the treatment least likely to engender MCO scrutiny. Such an attitude interferes with the informed-consent process vital to clinical care, and is often a pivot point in liability.

Of course, some denials of benefits by MCOs do represent a genuine effort to weed out unnecessary treatments and excessive costs. Nonetheless, other treatments that are medically appropriate (in that they are effective relative to individual patient values) come to be discounted as medically unnecessary by reference to an interpretation of “medical necessity” that is insensitive to individual patient values18 as well as to broader health-related social values.19

Medically appropriate care is care that is indicated based on the doctor-patient dialogue as informed by scientific research and accepted practice. Ideally, medically appropriate care considers the whole patient.20 By contrast, the term “medically necessary,” as used by third-party reviewers, is a misapplication of triage principles from military and disaster medicine to individual patients.21 Even treating physicians, when compelled to be time-pressured and hyper cost-conscious (as in many fixed-fee per subscriber capitated systems), tend to narrow their focus to overly concrete, readily measurable “necessary” benefits. Easily overlooked in such calculations are the costs of incomplete treatment22 to a patient’s freedom to live in the least restricted manner, as well as the biopsychosocial benefits of treatment that considers the patient’s overall well-being and level of independent and interdependent functioning.

Excessive reliance on managed care-driven “practice guidelines,” in the guise of being evidence-based, is also used to justify a denial of care. Such guidelines are often very selective as to the evidence they cite, as in the paucity of studies with outcome measures that reflect quality-of-life issues or the widespread neglect of many well-grounded outcome studies showing the efficacy of mental health treatment for patients with many medical and surgical conditions. In any case, decision making for patients in the aggregate is no substitute for individualized clinical decision making.

 

Prevention and Management of “Managed Care Side Effects”

Whether or not in conjunction with specialized consultation, a variety of clinical tools are available for prevention and management of the increasing iatrogenic harms experienced as side effects of managed care. To begin with, it is helpful for the treating clinician to keep in mind the complex interactions between medical and psychiatric disorders that are often obscured by various managed care influences, such as the lack of time to take a careful history that is objective and empathic. Although psychiatric consultation or referral is helpful in cases that present special difficulties, it is now less accessible than ever given the restrictions of managed health care.7

Thus, diagnostically, it is now more important than ever for treating physicians to be aware of psychiatric comorbidity within both acute and chronic physical illness. Patient suffering accompanying physical illness can present as depression, “sick role” adaptation, chronic pain, exacerbation of substance abuse or dependence, obsessive or dissociative reactions, and conversion reactions. In a person who has had a life-threatening illness, such suffering can sometimes rise to the level of disorders in the posttraumatic stress disorder (PTSD) spectrum.23

The flip side of the tendency to overlook psychiatric disorders exacerbated by managed care is the tendency to use psychiatric disorders as convenient labels to rationalize the denial of medical care and to neglect the existential dimensions of the patient’s suffering. Thus, it is important not to write off patients in panic as simply hypochondriacal because of time pressure associated with managed care. If a person presents with symptoms similar to those that marked a previous life-threatening illness, the physician first rules out a recurrence of that illness. When there has been a recurrence, any posttraumatic sequelae need to be attended to, even in the face of managed care constraints. These sequelae may include symptoms of depression, demoralization, dissociation, flashbacks (eg, “Oh my God, it is happening again!”), and an increased risk of panic and suicide. It is helpful for physicians to keep in mind that a patient who suffers from PTSD (or other emotional vulnerabilities) is especially susceptible to an exacerbation or recurrence of symptoms.

Even if a recurrence of the illness has been ruled out, the illness may have left a vulnerability in that the emotional memory of its painful and frightening initial presentation may be reactivated simply by the recurrence of general symptoms. There is the possibility of life-threatening complications for the patient, such as depression, panic disorder, and suicide or “suicide equivalents.” The latter may include self-medication of panic by excessive drinking or medication overdoses, or counterphobic risk-taking such as driving under the influence of alcohol. With the threat of illness recurrence, the feeling of being alone and the lack of choice in the managed care situation can increase the likelihood of such self-destructive reactions. The patient’s anxiety may also be amplified by acute somatic symptoms associated with vulnerable body image areas.24

Even when practicing in a time- and resource-restricted environment, with access to psychiatric consultation severely limited for patient and physician alike, treating physicians can be alert to make emotional contact with patients. Physicians can create provisional alliances even when they do not have the usual time and ongoing involvement required for sustained alliance building or for providing psychotherapy per se.25 In creating such alliances, it is important to convey certain understandings and attitudes, as delineated here, in whatever wording comes naturally to the individual physician.

 

Remedies for Each Phase of an Evolving Relationship

In the introductory phase of the relationship, the physician can make contact with the patient while observing the patient for indications of a potential (or hidden) but deep sense of helplessness and hopelessness which accompanies the experience of captivity.13 At the same time, it is helpful to initiate a meaningful dialogue as a first step toward creating a therapeutic alliance and detoxifying feelings of aloneness and abandonment. This step can include engaging in an informed-consent process (not merely a pro forma litany of risks and benefits).4,14 Such a process needs to address clinical and economic risks and potential ethical and role conflicts that might be engendered when a clinician is a dual agent (eg, both a “gatekeeper” and the primary care treating clinician in a capitated system).26 By the same token, the clinician can tactfully but effectively disclose all substantial treatment alternatives, including those not covered by the patient’s health plan.

These disclosures can enable the patient and physician to decide together how to respond to economic restrictions on treatment without the patient being overwhelmed by anxiety and pessimism. Likewise, if it is reasonably foreseeable at the outset that continuity of care will be interrupted by changes in the patient’s insurance coverage, then reminding the patient of how helpful it can be to keep abreast of possible insurance changes will be part of the economic informed-consent process. In our experience, patients can sometimes influence employers’ choice of insurance providers and managed healthcare packages. Subsequently, if a change in coverage is threatened, the physician can support the patient by actively inquiring about how any prospective benefit changes might affect continuity of care.

Given the distrust of physicians engendered by managed care policies,27,28 it is important to sensitively inform the patient of economic considerations such as provider profiling, managed care guidelines, and capitation contracts that may affect the quality of care that the patient receives. Openly acknowledging such dilemmas can enhance the possibilities for a therapeutic alliance. To provide for continuity in sharing uncertainty, it is helpful to articulate questions left open to be addressed in future visits, and to anticipate which questions may arise before the next visit. Such open communication is vital despite the fact that the “gag clauses”29 eliminated as explicit provisions in physician contracts with MCOs may still be implicitly enforced through healthcare provider profiling, economic deselection, and other often hidden rules and procedures.

In the ongoing care phase, the physician can implement treatment with as much continuity and mutual planning as possible while continuing to respond to managed care treatment restrictions in light of the patient’s evolving attitudes and preferences and changing clinical status. Treatment can proceed in a manner that respects the patient’s best interests, including autonomy interests, without being overwhelmed by considerations such as how this will affect the physician’s profile. The physician who needs or wants to apply practice guidelines, as noted above, is also faced with translating what any diagnostic or therapeutic option actually means for this particular patient given the patient’s life history and individual values.

In the event of a denial of benefits, every effort must be made to continue the relationship and avoid abandonment. While the denial of some benefits can reduce the quality of other benefits and the clinical care that the patient receives, it need not result in a catastrophic end to the doctor-patient relationship. For example, even when indicated hospitalization is denied, the physician can work with the patient on an appeal and remain available to help the patient consider the life choices that chronic illness periodically poses.

By working throughout the benefit denial and appeal processes to maintain as much patient confidentiality as possible under the circumstances, the physician can avoid feeling pressured into establishing “secret” manipulative agreements with the patient. An example of such an agreement is selecting, for billing purposes, differential diagnoses that increase the likelihood of receiving managed care benefits. Physicians who feel that their only recourse is to “spin”30 or lie for their patients31 are often expressing the underlying helplessness and hopelessness that they themselves feel. Such secrecy and misalliance based on deceiving the MCO can all too readily undermine the trust necessary for the doctor-patient relationship to be open and healing. The patient may ask, “If my doctor is willing to lie for me, might he/she also be willing to lie to me?” Moreover, a relationship built around secrecy and deception rather than confidentiality and open commitment is vulnerable to a sudden, panicked withdrawal by a guilt-ridden physician, culminating in abandonment.

The termination phase is critically important in any clinical relationship in which an emotional bond has been formed. Prior to the patient’s transferring to another care provider, it is helpful to consider what choices the physician and patient have made together, what other choices they might have made, and how managed care pressures may have influenced those decisions. The physician whose contract is terminated by an MCO can inform the patient of the MCO’s action and coordinate the transfer of care while supporting a patient’s choice to take steps to oppose involuntary termination. If involuntary termination is brought about because the patient’s employer has changed its health plan, the physician can attend actively to both the practical and emotional aspects of termination. The physician need not allow his or her own feelings of anger and frustration toward the MCO to become displaced onto the patient, leading to abandonment via failure to inform patients of the foreseeable consequences of “involuntary” abrupt termination. When the process of saying goodbye is properly attended to, even an involuntary termination can be borne without sliding into an abyss of abandonment and paralysis.

 

Conclusion

We have offered guidelines for prevention and management of observable clinical harms resulting from managed care’s control of choices made by patients and physicians, including anticipated and actual benefit denial and restrictions on care. Medical outcomes are affected not only by the quality of technical care given, but also by the process of care, including patient participation in decision making.32 Denial of choice reduces quality of care in that the patient loses both the psychological benefits of exercising choice and the medical benefits of individualized treatment. Moreover, irrespective of the structure of healthcare delivery, the physician retains a primary duty to advocate for the patient’s interests, including the right to make informed choices based on effective disclosure of treatment options.3 A considered clinical response to managed care constraints can help physicians fulfill this ethical duty to provide effective and compassionate care.

As risk management, attention to the clinical process can also help prevent malpractice liability in the event of a tragic outcome. Both bad medical outcomes, reasonably attributable to MCO-initiated distractions from a clinical focus on the patient’s best interests, and bad feelings arising from managed care restrictions on patient autonomy tend to feed malpractice risk.1 Moreover, attention to the clinical process allows physicians and patients to initiate, proceed with, and terminate relationships appropriately even when each phase of the relationship is subject to substantial external control.

Although clinical intervention is no substitute for instituting fundamental changes in healthcare financing and regulation of third-party control, even today the ethically sensitive primary care physician or psychiatrist practicing in a marketplace dominated by managed care need not feel too overwhelmed to practice effectively on the individual doctor-patient level. By identifying and then preventing or alleviating the negative biopsychosocial side effects of the restriction of available patient choices, a substantial reduction in the clinical complications and liability risks of MCO control and denial of patient choice and care can be achieved.   PP

 

References

1.    Bursztajn HJ, Brodsky A. A new resource for managing malpractice risks in managed care. Arch Intern Med. 1996;156:2057-2063.
2.    Bodenheimer T, Lo B, Casalino L. Primary care physicians should be coordinators, not gatekeepers. JAMA. 1999;281:2045-2049.
3.    Council on Ethical and Judicial Affairs, American Medical Association. Ethical issues in managed care. JAMA. 1995;273:330-335.
4.    Bursztajn HJ, Feinbloom RI, Hamm RM, Brodsky A. Medical Choices, Medical Chances: How Patients, Families, and Physicians Can Cope With Uncertainty. New York, NY: Routledge, Chapman, Hall; 1990.
5.    Watson M, Haviland JS, Greer S, Davidson J, Bliss JM. Influence of psychological response on survival in breast cancer: a population-based cohort study. Lancet. 1999;354:1331-1336.
6.    Levinson W, Gorawara-Bhat R, Dueck R, et al. Resolving disagreements in the patient-physician relationship: tools for improving communication in managed care. JAMA. 1999;282:1477-1483.
7.    Nease DE Jr., Volk RJ, Cass AR. Investigation of a severity-based classification of mood and anxiety symptoms in primary care patients. J Am Board Fam Pract. 1999;12(1):21-31.
8.    Horn SD. Overcoming obstacles to effective treatment: use of clinical practice improvement methodology. J Clin Psychiatry. 1997;58(suppl 1):15-19.
9.    Wyshak G, Barsky A. Satisfaction with and effectiveness of medical care in relation to anxiety and depression: patient and physician ratings compared. Gen Hosp Psychiatry. 1995;17:108-114.
10.    Druss B, Schlesinger M, Thomas T, Allen H. Depressive symptoms and plan switching under managed care. Am J Psychiatry. 1999;156:697-701.
11.    Schmittdiel J, Selby JV, Grumbach K, Quesenberry CP Jr. Choice of a personal physician and patient satisfaction in a health maintenance organization. JAMA. 1997;278:1596-1599.
12.    Pollock GH. Abandonment. In: Rothstein A, ed. The Reconstruction of Trauma: Its Significance in Clinical Work. Madison, Conn: International Universities Press; 1986:105-120.
13.    Bursztajn HJ, Brodsky A. Captive patients, captive doctors: clinical dilemmas and interventions in caring for patients in managed health care. Gen Hosp Psychiatry. 1999;21:239-248.
14.    Gutheil TG, Bursztajn HJ, Brodsky A. Malpractice prevention through the sharing of uncertainty: informed consent and the therapeutic alliance. N Engl J Med. 1984;311:49-51.
15.    Siegler M. Pascal’s wager and the hanging of crepe. N Engl J Med. 1975;293:853-857.
16.    Curtis JR, Rubenfeld GD. Aggressive medical care at the end of life: does capitated reimbursement encourage the right care for the wrong reason? JAMA. 1997;278:1025-1026.
17.    Bursztajn HJ, Brodsky A. Authenticity and autonomy in the managed-care era: forensic psychiatric perspectives. J Clin Ethics. 1994;5:237-242.
18.    Rosenbaum S, Frankford DM, Moore B, Borzi P. Who should determine when health care is medically necessary? N Engl J Med. 1999;340:229-232.
19.    Emanuel EJ, Emanuel LL. Four models of
the physician-patient relationship. JAMA. 1992;267:2221-2226.
20.    Tucker JB. Modification of attitudes to influence survival from breast cancer. Lancet. 1999;354:1320.
21.    Bursztajn HJ, Gutheil TG, Brodsky A. Ethics and the triage model in managed care hospital psychiatry. Psychiatr Times. 1998;15(9):33-40.
22.    Simon G, Ormel J, VonKorff M, Barlow W. Health care costs associated with depressive and anxiety disorders in primary care. Am J Psychiatry. 1995;152:352-357.
23.    Green BL, Epstein SA, Krupnick JL, Rowland JH. Trauma and medical illness: assessing trauma-related disorders in medical settings. In: Wilson JP, Keane TM, eds. Assessing Psychological Trauma and PTSD. New York, NY: Guilford Press; 1997:160-191.
24.    Meissner WW. The self and the body. I. The body self and the body image. Psychoanalysis and Contemporary Thought. 1997;20:419-448.
25.    Meissner WW. The Therapeutic Alliance. New Haven, CT: Yale University Press; 1996.
26.    Miller TE, Sage WM. Disclosing physician financial incentives. JAMA. 1999;281:1424-1430.
27.    Hillman AL. Mediators of patient trust. JAMA. 1998;280:1703-1704.
28.    Grumbach K, Selby JV, Damberg C, et al. Resolving the gatekeeper conundrum: what patients value in primary care and referrals to specialists. JAMA. 1999;282:261-266.
29.    Brody H, Bonham VL Jr. Gag rules and trade secrets in managed care contracts. Arch Intern Med. 1997;157:2037-2043.
30.    Illingworth PML. Bluffing, puffing and spinning in managed care. J Med Philosophy. 2000;25(1):62-76.
31.    Freeman VG, Rathore SS, Weinfurt KP, Schulman KA, Sulmasy DP. Lying for patients: physician deception of third-party payers. Arch Intern Med. 1999;159:2263-2270.
32.    Safran DG, Taira DA, Rogers WH, Kosinski M, Ware JE, Tarlov AR. Linking primary care performance to outcomes of care. J Fam Pract. 1998;47:213-220.

Dr. Hembree is assistant professor of psychology at the University of Pennsylvania Center for the Treatment and Study of Anxiety in Philadelphia.

Acknowledgments: Preparation of this manuscript was supported by National Institute of Mental Health Grant #MH42178.


 

Abstract

This article provides a brief summary of theory underlying trauma-focused psychotherapy for posttraumatic stress disorder (PTSD), with emphasis on emotional processing theory and cognitive theory. Psychosocial approaches to the treatment of PTSD that have received the strongest empirical support are cognitive-behavioral interventions, including prolonged exposure therapy, cognitive therapy, and stress-inoculation training. Eye movement desensitization and reprocessing has also received empirical support. Each of these treatment interventions is described and selected controlled studies supporting their efficacy are reviewed.

 

Introduction

Among the psychosocial approaches to the treatment of posttraumatic stress disorder (PTSD), cognitive-behavioral interventions have been the most widely studied and have received strong empirical support. Experts have frequently recommended cognitive-behavioral treatment (CBT) as a first-line intervention for chronic PTSD.1 Accordingly, the psychosocial treatments discussed in this article are limited to CBT approaches and include exposure therapy, cognitive therapy, stress-inoculation training (SIT), and eye movement desensitization and reprocessing (EMDR). Each of these treatment interventions will be described and selected controlled studies supporting their efficacy will be reviewed.

These empirically supported approaches to the treatment of chronic PTSD, although differing in methods of intervention, are similar in their conceptualizations of the impact of trauma and in their objectives for alleviating the resulting sequelae. Thus, a brief summary of the theoretical base of current trauma-focused therapies is provided, with particular emphasis on emotional processing theory2,3 and cognitive theory.4-6

 

Theoretical Foundations

According to Foa and colleagues,7,8 the presence of PTSD reflects impairment in the emotional processing of a traumatic event, resulting in the formation of a trauma memory containing elements of pathological fear. In their treatise on emotional processing theory, Foa and Kozak2 described the pathological fear that is characteristic of anxiety disorders as disruptively intense, resistant to modification, and associated with unrealistic elements and excessive responses. Foa and Kozak2 suggested that treatment must correct the pathological elements of the fear memory by activating or accessing that memory and providing new information that is incompatible with the existing pathological or unrealistic elements.

According to the emotional processing theory of PTSD, the common tactic of avoiding trauma-related memories and cues interferes with the processing of the traumatic event and natural recovery. Avoidance helps in the short-term by reducing anxiety, but also maintains trauma-related symptoms by preventing the survivor from emotionally processing, organizing, and integrating the traumatic experience. The erroneous cognitions and irrational fear associated with the trauma memory are also maintained.

Indeed, most current theories of PTSD emphasize the important role of pathological cognitions in the development and persistence of posttrauma sequelae.4,8 Foa and colleagues8 suggested that a trauma memory associated with PTSD is distinguished from a normal trauma memory by the presence of pathological stimuli associations as well as inaccurate evaluations of danger (eg, a woman assaulted by a bearded man while out late one evening begins to associate assault with bearded men and nighttime. Thus, she believes that bearded men and being out after dark are dangerous).

Ehlers and Clark4 emphasized that individuals with persistent PTSD view the traumatic event and associated information as currently threatening, and thus experience an enduring sense of danger. In their view, one of the core cognitive distortions underlying PTSD is the interpretation of the reexperiencing symptoms of PTSD as currently threatening.

 

Cognitive-Behavioral Interventions

When PTSD was first classified as an anxiety disorder in the Diagnostic and Statistical Manual of Mental Disorders, Third Edition9 it was viewed by cognitive-behavioral clinicians as a complex phobia best conceptualized within the conditioning model of fear and avoidance. This led some researchers to employ exposure procedures that had been found successful with phobias. Participants in these early exposure therapy studies were most commonly male Vietnam veterans.10 Simultaneously, the observation that PTSD patients exhibit symptoms of general anxiety led other researchers to employ anxiety management programs for PTSD (eg, SIT).11,12 Participants in these programs were often female (sexual and nonsexual) assault victims. More recent outcome studies for PTSD have examined the efficacy of cognitive therapy, combinations of exposure and cognitive therapy, and EMDR. Recent studies have also included patients with traumatic experiences other than combat or violent assault in adulthood (eg, motor vehicle accidents, natural disasters, and childhood sexual abuse).

 

Exposure Therapy

The long-standing notion that psychotherapeutic treatment of trauma should include some form of disclosure or confrontation with the traumatic event13 is central to exposure therapy for PTSD. In exposure therapy, patients are encouraged to confront the feared and avoided memories and situations via two main procedures: imaginal and in vivo exposure.

In imaginal exposure (ie, trauma recounting), the patient is asked to vividly imagine the traumatic event and describe it aloud, along with the thoughts and feelings that occurred during the event. In vivo exposure involves systematic and gradual confrontation with safe but avoided situations, places, or activities that will trigger trauma-related fear and anxiety. In both imaginal and in vivo exposure procedures, the aim is to have the patient engage in the exposure repeatedly and remain in contact with the anxiety-provoking memory or situation until their anxiety declines (ie, habituates) significantly.

One example is a woman who was struck at high speed by another car after 25 years of driving without any serious incidents. Her physical injuries healed well, but she had frequent nightmares about the trauma and became quite fearful of driving or riding in cars. Soon she feared being in public in general and stopped going to work or leaving home unless absolutely necessary. This avoidance reduced her distress in the short-term but also maintained her fear by preventing her from learning that she could safely ride in or drive cars again. Avoidance also prevented her from achieving a realistic perspective about the traumatic event. During exposure therapy, the woman was asked to repeatedly recall the memory of the accident and recount what happened during and in the immediate aftermath of it. While initially feeling anxious and distressed as she repeatedly relived the memory of this accident, her anxiety decreased as she learned that it was not dangerous to think or talk about the accident and that doing so helped her make sense of what happened. Similarly, the woman was asked to engage in in vivo exposure by gradually confronting the situations she had been avoiding, such as riding in cars, driving, and being in public places.

As in imaginal exposure, this confrontation with safe or low-risk yet avoided situations typically causes an initial increase in anxiety and distress, which declines with repeated practice. These confrontations with traumatic memories and external cues provide opportunities for corrective information to be integrated into the trauma memory, thus lessening the fear associated with it.

How does exposure to trauma memories and cues help to modify trauma-related cognitions? How does exposure lead to improvement in PTSD?

First, discussing and recounting the traumatic event with a supportive and knowledgeable therapist helps the patient realize that thinking about the trauma is not dangerous. Second, repeated imaginal reliving of the trauma and in vivo exposure facilitates reduction of the anxiety associated with the trauma memory. The patient learns that anxiety itself is not dangerous and will eventually decrease without avoidance or escape. Third, focusing on the trauma memory and engaging in in vivo exposure decreases the generalization of fear and avoidance by helping the patient differentiate the traumatic event from other situations. Rather than viewing the entire world as dangerous, the patient comes to realize that the traumatic event was an isolated incident. Fourth, confronting rather than avoiding trauma-related fears and memories helps change the PTSD sufferer’s view that their symptoms mean they are incompetent and weak. Exposure facilitates the development of a strong sense of mastery and counters the victim’s self-perception as incompetent.

 

Stress Inoculation Training

Anxiety management approaches were commonly utilized in early research on female rape and crime victims. One such approach is SIT,11 which provides coping skills or techniques that the patient can use to manage and reduce anxiety as it occurs. Veronen and Kilpatrick12 adapted Meichenbaum’s SIT program specifically for use with female assault survivors. They posited that during a traumatic event, emotional, cognitive, and behavioral fear responses are evoked by the experience or threat of physical injury, pain, or death. These responses are mediated by cognitive appraisal and attribution.

Through classical conditioning, neutral stimuli (eg, places, people, hair color, time of day) become associated with trauma-related unconditioned stimuli (eg, weapons, pain, injury) and acquire the potential to trigger fear and anxiety. These neutral situations are subsequently avoided or escaped in order to decrease the anxiety they provoke. In turn, the resulting reduction in anxiety reinforces these avoidance responses. For example, a man who is robbed at gunpoint while working in a convenience store develops a fear of customers with the same physical characteristics as the robber, working the shift he was working when the robbery occurred, and shopping in any convenience store himself. Eventually the fear causes the victim to stop working and to avoid contact with others.

An adaptation of SIT was designed by Veronen and Kilpatrick12 to teach rape survivors skills that they can use to manage and decrease rape-related fear and anxiety. Components included education about trauma and PTSD, deep muscle relaxation, breathing exercises, cognitive restructuring (CR), covert modeling, role playing, thought stopping, and guided self-dialogue. Importantly, they explicitly instructed patients to use these skills when confronting situations or activities that triggered rape-related anxiety and fear.

 

Cognitive Therapy

Cognitive theory holds that it is the interpretation of events, rather than events themselves, that lead to specific emotional responses.14,15 Thus, as frequently happens in individuals with PTSD, when benign events are interpreted as threatening, negative emotions such as anxiety, depression, anger, or guilt emerge. The primary goals of cognitive therapy for PTSD are to teach the patient to identify irrational or unhelpful trauma-related beliefs that might influence their interpretation of a situation and lead to intense negative emotion, and to learn to challenge these thoughts or beliefs in a nonemotional, evidence-based manner. In challenging the trauma-related belief or thought, relevant facts that support or do not support the belief are examined and alternative ways of interpreting the elicited situation are considered. The patient learns to weigh the evidence and alternative explanations and subsequently decide whether the belief is helpful and accurately reflects reality. If it does not, the patient generates a modified or more accurate belief to replace it.

Resick and Schnicke16,17 developed the cognitive-processing therapy (CPT) program to specifically address the concerns and symptoms of rape victims with chronic PTSD. This treatment approach is based on the assumption that PTSD results from conflicts between the new information conveyed by a traumatic event and prior schema about the world and the self. Thus, the focus of treatment in CPT is on identifying and modifying these conflicts, termed “stuck points.”17 CPT also focuses on themes typically related to the trauma of rape (eg, safety, trust, power, esteem, and intimacy).6 A written exposure component is designed to encourage expression of affect and to ensure that all the important trauma-related feelings and associated beliefs are elicited.

 

EMDR

EMDR is a more recent therapeutic approach18,19 that has generated interest among trauma therapists and researchers. In EMDR for PTSD, the therapist asks the patient to generate images, thoughts, and feelings about the trauma, to evaluate their affective qualities, and to make alternative cognitive appraisals of the trauma or their behavior during it. At various points in the session (when the patient focuses on the distressing images and thoughts or on the alternative cognition), the therapist elicits rapid saccadic eye movements by instructing patients to visually track a finger rapidly waved back and forth in front of their faces.

Originally, Shapiro18 regarded the saccadic eye movements as essential to the processing of the traumatic memory and proposed that the eye movements in some way override or reverse the neural blockage induced by the traumatic event. However, the assertion that the rapid eye movements play an essential role in treatment response has not been supported by dismantling studies.20-22

 

Treatment Outcome Studies

This section briefly presents results from selected controlled studies of the interventions described above. For comprehensive reviews, see Foa and Rothbaum23 or Rothbaum and colleagues.24

Many well-controlled studies have found exposure therapy to be an effective treatment in reducing PTSD and related pathology such as depression and anxiety. Exposure therapy has shown efficacy in men with combat-related PTSD12,25 and women with assault-related PTSD,26-28 although overall, the latter group shows relatively greater benefit. Working with assault survivors with chronic PTSD, Foa and colleagues27 compared the effects of manualized exposure therapy (prolonged exposure [PE]), SIT, and the combination of PE and SIT (PE/SIT) to a waitlist control group. They found that women treated with either treatment alone or with PE/SIT showed a reduction in PTSD severity and depression, whereas the waitlist group did not show any improvement. Furthermore, exposure alone (PE) was superior to SIT and PE/SIT on several indices of treatment outcome.

In a subsequent study of female assault victims with chronic PTSD, Foa and colleagues29 found that 9 or 12 sessions (determined by rate of improvement in self-reported PTSD symptoms) of exposure alone and exposure with CR effected a large and equal improvement in PTSD and depression symptoms. However, exposure alone emerged as a more efficient program compared to exposure plus CR. Significantly more women in the exposure-alone condition than in the combined condition were able to end therapy at nine sessions by meeting the success criterion of at least 70% improvement in PTSD symptoms.

Resick and Schnicke16 used CPT to treat groups of rape victims. They reported significantly greater reduction in PTSD symptoms and depression following CPT compared to a naturally-occurring waitlist control group. Resick and colleagues28 have recently conducted a large study comparing the efficacy of 12 sessions of individually administered CPT to 9 sessions of PE for rape victims with PTSD. Preliminary results based on 45 participants indicated that both treatments are highly and equally effective.

The generalizability of the findings by Resick and colleagues is strengthened by recent investigations of CBT conducted with individuals in whom PTSD resulted from a variety of traumatic events, including motor vehicle accidents, disasters, and childhood sexual abuse and criminal victimization. Most have produced results similar to those found with female assault victims.

Marks and colleagues30 treated mixed-trauma patients who had chronic PTSD with either exposure alone, CR alone, combined exposure and CR, or relaxation training. They found that exposure, CR, and the combination of exposure and CR were equally effective and were superior to relaxation. Tarrier and colleagues31 compared imaginal exposure (without in vivo) to cognitive therapy in a sample of patients with PTSD mostly due to criminal victimization or motor vehicle accidents. Exposure and cognitive therapies were found to be significantly and equally effective at ameliorating PTSD severity. Echeburua and colleagues32 found that gradual exposure with CR produced more improvement in PTSD, fear, and depression than relaxation training, and this difference was maintained through the 12-month follow-up assessment.

The efficacy of EMDR has been assessed in a number of studies, although many were not well controlled. Generally, outcome studies show that EMDR is effective at reducing PTSD symptoms relative to waitlist controls. In a small but well-controlled study of EMDR for rape victims with PTSD, Rothbaum33 found that 90% of patients receiving four sessions of EMDR (compared to 12% of waitlist patients) no longer met criteria for PTSD, and gains were maintained at 3-month follow-up.

In a similar but much larger study (80 trauma victims, only 46% of whom met criteria for PTSD) using self-report measures, Wilson and colleagues34 also found that three sessions of EMDR significantly reduced PTSD severity, anxiety, and general distress compared to waitlist controls, and treatment gains were maintained at 15-month follow-up.35

Devilly and Spence36 conducted the only published study to date that compared EMDR to a treatment of established efficacy for PTSD, although several more are nearing publication. Patients with PTSD were treated with nine sessions of either EMDR or a CBT package consisting of prolonged imaginal and in vivo exposure, SIT, and cognitive therapy. As assessed by self-report measures, CBT patients showed significantly greater improvement in PTSD than did EMDR patients at both posttreatment and follow-up. Individuals treated with CBT maintained their treatment gains at the follow-up assessment, while individuals treated with EMDR showed relapse on several measures. In addition, EMDR and CBT were rated as equally (“moderately”) distressing and CBT was rated as more credible and generated higher expectancies for change.

Many studies have indicated that prolonged exposure therapy is an effective and efficient treatment for PTSD resulting from a variety of traumas. SIT has been found effective, but the evidence comes exclusively from studies on female assault victims and the generalizability of the results to other populations is unknown. Although relatively fewer studies have been conducted on the efficacy of cognitive therapy for PTSD as compared to exposure therapy, the results indicate that CR and CPT are quite effective. EMDR appears promising, but more well-controlled studies are needed for a firm conclusion. EMDR dismantling studies are fairly consistent in finding that the eye movements and variations on these (flashing lights, finger tapping) are irrelevant to outcome. This has led some to conclude that treatment effects are likely to be nonspecific or due to the imaginal exposure generated by the procedure.37

 

Conclusion

Research on psychosocial treatments for chronic PTSD has clearly demonstrated the efficacy of several CBTs in ameliorating PTSD symptoms, depression, and anxiety. Comparative studies have generally found equivalence in outcome among exposure, cognitive therapy, stress inoculation, and combinations of these interventions. Follow-up evaluations ranging from 3–12 months in the CBT outcome studies indicate that treatment gains are maintained and, in some cases, even increased relative to their level at posttreatment. This is especially true for treatments that include exposure, either alone or in combination. Treatment dropout rates for CBT are relatively low, averaging 14% in 27 psychotherapy studies analyzed in a recent meta-analysis of PTSD treatment outcome trials.38 Thus, it appears that the treatments are generally well tolerated.

Foa and Rothbaum23 suggested that, irrespective of the treatment modality utilized, successful psychotherapy for PTSD must produce changes in the patient’s inaccurate beliefs about the world and him/herself. This view is substantiated by the consistent results of many outcome studies. Although the psychotherapeutic approaches discussed in this article employ different interventions and procedures, they share the common goal of helping the trauma survivor integrate and make sense of the traumatic event while managing significant anxiety. It remains the task of future research efforts to determine if the treatment benefits realized by prolonged exposure therapy are indeed relatively more enduring and efficient.  PP

 

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2.    Foa EB, Kozak MJ. Emotional processing of fear: exposure to corrective information. Psychol Bull. 1986;99:20-35.
3.    Foa EB. Psychological processes related to recovery from a trauma and an effective treatment for PTSD. In: Yehuda R, McFarlane A, eds. Psychobiology of PTSD. New York, NY: New York Academy of Science; 1997:410-424.
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Dr. Foy is professor of psychology in the Graduate School of Education and Psychology at Pepperdine University in Culver City, Calif, and in the Headington Program of International Trauma at Fuller Theological Seminary in Pasadena.

Dr. Eriksson is adjunct assistant professor of psychology in the Headington Program of International Trauma at Fuller Theological Seminary.

Ms. Larson is a doctoral student in clinical psychology in the Headington Program of International Trauma at Fuller Theological Seminary.

Acknowledgments: The authors report no financial, academic, or other support of this work. 


 

Abstract

Why should primary care physicians (PCPs) learn about psychological trauma in children? PCPs are often the first nonfamily members to be told about recent traumatic experiences of young patients exposed to life-threatening events. Thus, it is important that they learn how to assess posttraumatic stress disorder (PTSD). Recent studies of PTSD epidemiology in children and adolescents show that the disorder is prevalent among youths exposed to such traumas as childhood physical and sexual abuse and deadly community violence perpetrated by peers. Natural disasters and motor vehicle accidents pose threats to youths as well as adults. In children, life-threatening experiences and symptomatic reactions vary with developmental stage. This article reviews the traumas, predictable reactions, screening methods, likely comorbid conditions, and available treatments from infancy through adolescence. The information is intended to help PCPs identify and manage the clinical needs of trauma-exposed young patients.

 

Introduction

Posttraumatic stress disorder (PTSD) always begins with exposure to an identifiable life-threatening event or series of events. The disorder is unique because the diagnosis is made only when “normal” reactions to trauma (eg, patterns of intrusive thoughts, avoidance of reminders, and hyperarousal) have persisted beyond the predetermined diagnostic time frame of 30 days.

Even though PTSD was introduced into psychiatric nomenclature more than 20 years ago, only recently has etiologic research been published identifying the range of traumatic events for children and the implicated risk factors.1 These studies address five types of traumas:? childhood physical and sexual abuse, natural disasters, motor vehicle accidents, war, and community violence.2 Most recently, child PTSD studies identified a sixth type of trauma—witnessing domestic violence.3 Accordingly, it is important to provide updated information about psychological trauma so that primary care physicians (PCPs) are better able to recognize mental health needs of young patients exposed to traumatic events.

What do we know about the epidemiology of PTSD in children and adolescents? Like adults, children who are exposed to life-threatening events encounter risk for developing PTSD. Among youths exposed to the same trauma, girls may be more likely to develop PTSD (with higher symptom severity) than boys. Children of both sexes are susceptible to increased risk when their parents exhibit adverse posttrauma reactions.2 In studies where different ethnic groups are represented, ethnicity does not consistently emerge as a risk factor. However, living in poverty in crowded, inner-city environments poses additional risk for trauma exposure and PTSD regardless of ethnicity. Although adolescents are at greater risk for exposure to more types of trauma, younger children appear to be more susceptible to the disorder.4

There are developmental considerations for key aspects of childhood PTSD, including risk of exposure to different types of trauma, typical reaction patterns, and available treatments. Accordingly, we present basic information about psychological trauma in children according to four developmental stages: infancy/toddler, preschool, school-age, and adolescence.

 

Life-Threatening Experiences of Childhood

Table 1 presents an overview of the most frequent childhood traumas that meet the life-threat requirement (criterion A1) for PTSD according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition5 (DSM-IV), and the relative risk of exposure for these traumas according to developmental stage. Risk for exposure is directly related to time spent in different environments and the types of traumas possible in those environments. For that reason, very young children are much more likely to be victimized in their own homes by adult caregivers. School-aged children are susceptible in both their homes and in their communities, and adolescents are at higher risk for community-based traumas. Other, less frequent traumas in the United States include dog bites and other animal attacks, kidnapping, severe burns, serious medical illnesses, and war.6

 

Diagnostic/Screening Procedures

A second element in screening for PTSD includes consideration of the child’s subjective, emotional reactions when the trauma occurred (DSM-IV criterion A2).

For infants and preschoolers, extreme dependency, limited language skills, limited perceptive, cognitive, and emotional regulation abilities constrict their perceptions of danger and responses to a trauma. Consequently, the caregiver’s personal response to the trauma and ability to soothe and comfort the young child can greatly influence whether he or she develops PTSD.7 We recommend using alternative diagnostic criteria for children <4 years of age that eliminate the DSM-IV criterion A2 requirement that the child’s response “involved intense fear, helplessness, or horror,” because preverbal children cannot communicate subjective experiences (Table 2).8

Since parental report is a main source of diagnostic information for very young children, systematic parental interviewing is crucial. Screening for PTSD should include a brief review of the child’s developmental history, thorough details of the child’s traumatic experience and immediate reactions, review of the child’s current trauma-related symptoms (onset, frequency, duration, and severity) including any developmental regression or delay, and checking for PTSD symptoms in the parent(s). Observing the toddler’s play for evidence of trauma-related themes and obtaining information from other caregivers (eg, daycare providers) can also be helpful in making a diagnosis.7,8

For preschoolers and school-aged children, the clinical interview will be the primary assessment method. Because talking about their traumatic experiences might be difficult, developing rapport with the child is important before proceeding with the screening interview for PTSD.9 For adolescents and children >8 years of age, there are assessment measures for PTSD based upon either structured diagnostic interview or paper-and-pencil self-report measures.6

 

Core Symptoms andResponses

To better capture symptom expression in children 0–3 years of age, alternative diagnostic criteria have been developed focusing on behavioral symptoms in the three DSM-IV clusters (reexperiencing, avoidance/numbing of responsiveness, increased arousal) and an additional symptom cluster of “new fears and aggression.” Reexperiencing symptoms might include play reenactment of the trauma, while avoidance/numbing might involve developmental regression, particularly in language or toilet training.

New fears and aggression include any new fears of things or situations not obviously related to the trauma (such as separation anxiety or fear of the dark) and/or new aggression.8 Children 4–5 years of age might also display symptoms in these alternative criteria, but “grow into” DSM-IV symptom patterns as they develop.7

School-aged children might exhibit symptoms concordant with DSM-IV patterns of intrusion, avoidance, and hyperarousal. They might have intrusive thoughts during times of quiet or relaxation in response to reminders of the event or in the midst of heightened affective states.9 Nightmares might be generally frightening or have trauma-related content.6 A child’s new fears might be linked to specific reminders of the experience or they might be generalized to other contexts (eg, fear of separation).9,10 Parents and teachers might see traumatic themes in children’s play from early to middle childhood.11

Many school-aged children show obvious avoidance to traumatic reminders, but some children might seem unaffected or uncaring. This apparent lack of affect should not be easily dismissed as a healthy adjustment. Rather, it can represent avoidance or numbing.12 Hyperarousal symptoms are commonly seen in preschool and school-aged children as sleep disturbances, irritability, aggression, and hypervigilance,6 all of which can severely hinder school performance. Adolescents might show a sense of foreshortened future,4 along with other PTSD symptoms that generally follow the pattern outlined in DSM-IV.

 

Comorbidity

Two disorders that might be comorbid with PTSD in infants and preschool children are reactive attachment disorder (RAD) and attention-deficit/hyperactivity disorder (ADHD).6,13 For traumatized infants and preschool children initially presenting with symptoms of either of these disorders, a differential diagnosis of PTSD should be considered and a PTSD screening assessment should be undertaken. The implications of such a differential diagnosis for effective treatment of the child are profound.

Depressive conditions are the most common disorders diagnosed comorbid with PTSD in adolescents and school-aged children, and there is considerable symptom overlap between the two diagnoses.11 The disruptive behavior disorders ADHD, oppositional defiant disorder (ODD), and conduct disorder (CD) are other complex areas for diagnosis.

The hyperarousal of PTSD might compromise a child’s ability to control angry or aggressive responses. Restlessness, concentration problems, and impulsivity can be a type of active avoidance or numbing.6,9 A school-aged child might be anxious about going to school (school phobia), worried about the safety of family and friends (separation anxiety), fearful of specific things (simple phobia), or prone to experiencing panic attacks.6,11 Both children and adolescents might use marijuana, alcohol, or other drugs to relieve discomfort associated with PTSD.

In addition to PTSD-specific reactions, child abuse/neglect has been associated with problems in self-esteem, social skills, cognitive development, adjustment to school, and healthy development.10

 

Treatment

Parental involvement is critical for treatment in young children, both in therapy sessions and in responding helpfully to posttraumatic behaviors at home. Treatment during the first year of life might involve desensitizing the child during caregiving interactions, while older infants and preschoolers can be treated with play techniques.6,14 Cognitive-behavioral therapy (CBT) with parental involvement might be effective for children 4–5 years of age; such treatment was associated with decreased PTSD symptoms in a group of sexually abused preschoolers.6 Direct treatment of the parent(s) might be necessary for the infant or child to be successfully treated.

CBT has the strongest empirical evidence for resolving PTSD symptoms in children and adolescents.6,9 It is considered the first-line approach, involving four basic components: direct therapeutic discussion of the trauma, stress management skills training and utilization, challenge to distorted attributions related to the trauma, and parental education and involvement. Group treatment might also be beneficial for school-aged children and adolescents; didactic materials can help to contain a child’s affect, peers in the group can offer comfort and validation, and telling the trauma story to the group can create a sense of control or distance. Children 6–11 years of age are capable of processing information concretely; thus, group treatment for this age bracket should include a clear structure and planned activities or projects.15

 

Parental Reactions

For infants, preschool, and school-aged children in particular, a parent’s response to the trauma is an important determinant in the development of distress. Also, parental report of a child’s symptoms might be distorted for a variety of reasons. Parents might overemphasize behavioral symptoms and not be aware of the internalized distress,9 they might be distracted by their own reactions,16 or the child might not discuss his/her experiences due to avoidance symptoms or a wish not to upset the parent.6,9

 

Recommendations for Practice

The PCP holds an important role as educator for the family. The respected physician can help normalize psychiatric treatment and provide basic information about typical posttrauma symptoms. The PCP should also provide resources such as brochures, Web site information, or referrals for additional services.12 Referral and resource information can be found at the Web sites listed in Table 3.

When providing medical care for infants and children who have undergone trauma, PCPs should consider the possibility of PTSD and educate parents to keep an eye out for symptoms of PTSD specific to their child’s developmental level.

For infants and preschool children initially presenting with symptoms of RAD or ADHD, a differential or comorbid diagnosis of PTSD should be considered, especially if there is a history of trauma or domestic violence in the family. Infants should be assessed for PTSD using criteria of Scheeringa and colleagues,8 while DSM-IV should be used with children >2 years of age.

Physicians working with school-aged children and adolescents should pay particular attention to “masked” posttrauma symptoms. Absenteeism due to physical complaints might be a way to avoid violence at school, and symptoms of ADHD might represent a posttraumatic response. In addition, the child’s appraisal of an event and perception of threat or loss may influence his or her reactions. An event that might seem minor to an adult might cause an unexpected level of psychological distress in a child.16

When making referrals, PCPs can prepare parents for the reality that optimum treatment might require involvement in their child’s treatment and perhaps treatment for themselves.

 

Conclusion

PCPs need to know the main kinds of life-threatening experiences that children and adolescents are likely to have. They should be willing and able to screen for key symptoms of PTSD in their young patients, educate parents about PTSD in their children, and identify and refer to mental health professionals with specific competencies in diagnosing and treating PTSD in children. The condensed information in this article should enable PCPs to prevent developmental adversities in young patients who have experienced life-threatening events. References for authoritative, peer-reviewed sources that provide more extensive information about PTSD diagnosis and treatment in children and adolescents are useful as well.   PP

 

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