Dr. Nakka is fellow in the Hematology/Oncology Division at Maimonides Medical Center in Brooklyn, New York, Dr. Miller is associate director of Continuing Day Treatment Services in the Department of Psychiatry at Maimonides Medical Center, and Dr. Astrow is director of the Division of Hematology/Medical Oncology, all at Maimonides Cancer Center in Brooklyn.
Disclosures: The authors report no affiliation with or financial interest in any organization that may pose a conflict of interest.
Acknowledgments: The authors wish to express their appreciation to Vijay Nakka, MSEE, for technical support.
Please direct all correspondence to: Alan B. Astrow, MD, Maimonides Cancer Center, 6300 8th Ave, Brooklyn, NY, 11220; Tel: 718-765-2653; Fax: 718-765-2654; E-mail: email@example.com.
• It is necessary to address patients’ psychosocial health to deliver high-quality cancer care.
• Faith and spirituality are important factors in medical decision making, and if physicians do not account for it, the decision-making process may be unsatisfactory.
• Communication skills training is essential for cancer professionals.
Numerous physicians find it difficult to relay emotionally charged diagnostic and prognostic information to patients. Poor communication leads patients to misunderstand the status of their disease and goals of treatment, which can both adversely impact their decision making and reduce their quality of life. Despite advances in medical science and technology, physicians find themselves face-to-face with anxiety, sadness, and human tragedy. Delivering information to patients in an understandable way that displays concern for the patient as a person is a difficult yet required assignment demanding study and practice. Informative and empathic communication of prognostic information contributes to enhanced patient satisfaction. The high prevalence of physician burnout in oncology community is worrisome, as patients often rely heavily on their physicians for empathy and support. Communication skills training allowing oncologists to practice giving emotionally charged information and to explore their responses to human suffering and tragedy may enhance both patient and physician satisfaction. The authors of this article discuss how varied personality and coping styles and spiritual/cultural values, play a role in the patient’s response to a cancer diagnosis. They describe tools and strategies that can equip physicians to incorporate their understanding of the patient as a person into clinical practice.
Discussing cancer diagnosis and communicating with distressed patients are extremely important yet challenging tasks required of the medical profession. The benefits of good communication skills should be well known, but breaking bad news and dealing with human tragedy are never easy, regardless of how skilled one may be. While the natural response to human tragedy is sadness or compassion, another less desirable response is avoidance. Improved communication and a greater degree of connection between the physician and the seriously ill patient may provide the patient with practical knowledge and emotional support needed for informed decision making and the physician with greater work satisfaction and an enhanced sense of meaning and purpose. The authors of this article have reviewed several articles in the medical literature regarding patients’ and physicians’ perspectives on discussing diagnosis and prognosis as well as how a patient’s personality style and any underlying psychiatric illness may affect physicians’ approach to meeting the patients’ information needs. The proposed approach for discussing prognosis is based on negotiation and patient-centered communication as well as the available research on what patients want to know.1,2
The difficulties doctors face when discussing prognosis with their patients include their deciding whether to provide estimates and survival statistics, discussing life expectancy with patients with “poor” prognoses, conveying prognostic information with sensitivity and honesty, deciding whether and how to encourage hope, and meeting the needs of patients from various cultural backgrounds whose prognostic information needs may differ. Clinically, the challenge has been balancing these concerns with the complexities of making prognostic estimates while complying with legal requirements to provide patients with all necessary information. A recent survey3 of 604 Australian cancer physicians found that insufficient time to spend with the patient and patients refusing recommended treatment were perceived by these physicians as the leading barriers to engaging in shared decision-making, while a trusting relationship with the patient was seen as most helpful. Though there is a lack of explicit guidance for clinicians concerning the best way to approach prognostic discussion, an evidence-based literature is underway. Anecdotal reports in the literature document the difficulties that physicians face in this arena. A physician in training, for example, recently described a young patient dying from advanced cancer and the plight of the patient’s father who was distressed about not being told the truth of his son’s impending death.4 She outlines treating physicians’ own fear of death and the “unknown” and, in this case, is critical of physicians’ inability to face the truth.
Communications skills do not automatically improve with increasing physician experience. Formal training in communicating complex and emotionally charged information is needed. Until recently, traditional oncology training programs focused on the skills needed to treat a wide range of cancers but did not prepare oncologists for the responsibility of talking to patients about undesired outcomes. In 1998, at the annual meeting of the American Society of Clinical Oncology (ASCO), among 400 oncologists who attended a session on breaking bad news, 74% indicated that they did not have a specific approach planned for breaking bad news, and >90% felt that the most difficult aspect was handling emotions that arise during the interview.5
The oncology community has responded through workshops, sessions at annual meetings, and innovative communications skills modules incorporated into the curricula of oncology training programs. The strongest evidence for the benefit of communications skills training comes from randomized clinical trials offering face-to-face learning involving communication with the patient or simulated patient coupled with opportunities to practice skills and receive feedback in a learner-focused environment.6,7 A 6-step algorithm for breaking bad news with the acronym SPIKES (setting, perception, invitation, knowledge, emotion, strategy, and summary) has been shown to be easily learned and taught8 and mirrors what patients say they want from their physicians.9,10
SPIKES is a consistent strategy that helps oncologists relate bad news. It encourages them to both assess patient response as it occurs and respond flexibly and constructively. The keys are to allow sufficient time, choose a comfortable setting, minimize distractions and interruptions, avoid jargon and try using the patient’s language, resist the temptation to offer premature reassurance, acknowledge and then validate the patient’s emotional response to bad news, and close with a summary and strategy. This approach will likely leave the patient feeling satisfied and prepared to take the necessary steps following the news.
When the SPIKES strategy was presented at the 1998 ASCO workshop, >99% of the oncologists found it easy to understand and remember.5 At the University of Texas MD Anderson Cancer Center, the SPIKES protocol was used in interactive workshops for oncologists and oncology fellows. As an outcome measure, the researchers used a paper and pencil test before and after the workshop to assess physician confidence in carrying out the various skills associated with SPIKES. They found that SPIKES in combination with experiential techniques (eg, role play) can increase the confidence of faculty and fellows in applying SPIKES.11 Undergraduate teaching experience also showed that the protocol increased medical students’ confidence in formulating a plan for breaking bad news.12 The SPIKES protocol has been tried and accepted in both academic and community settings. It may be a valuable tool for numerous medical specialties.5
Bach and colleagues describe the communication skills program, “Oncotalk,” developed for medical oncology fellows with funding from the National Cancer Institute.13 This program uses educational, evidence-based techniques with content tailored to medical oncology fellows. This structured curriculum includes the SPIKES protocol for breaking bad news, simulated clinical situations, trained actors functioning as patients, and other successful programs. The efficacy of Oncotalk was evaluated by measuring changing observable communication behaviors among participants.8 The primary outcomes were observable participant communication skills. These skills were measured during standardized patient encounters before and after a workshop on bad news and discussing transitions to palliative care. Compared with pre-workshop standardized patient encounters, post-workshop encounters showed that participants acquired a mean of 5.4 bad news skills and a mean of 4.4 transitions skills. This behavioral change leads to increased patient centeredness on the part of the physician and improves patient satisfaction.
Whether training in communication skills enhances professional satisfaction and lessens “burnout” is a ripe area for empirical study. Prevalence of burnout in the oncology community of the United States is >60%. The signs of burn-out are frustration, emotional exhaustion, depersonalization, and a sense of low personal accomplishment, all leading to decreased effectiveness at work.14 Burnout and distress can also lead to cynicism, which undermines physicians’ empathy and their relationships with patients. This erosion of compassion is especially troublesome in the field of oncology, as cancer patients often rely heavily on their physicians for emotional support.15 Recently, various causes for burnout were explored in detail. The prevalence of burnout was approximately 60% in a survey of primarily medical oncologists and hematologists. Number of hours spent on patient care and having colleagues with burnout were among the most critical positive associations with burnout, whereas attendance at educational meetings and number of days away from the office were highly significantly associated with less burnout.16
It is important to understand what makes an oncologist feel successful, what coping strategies help combat burnout, and what adds to the process of renewal. The doctor-patient relationship plays an important role for numerous oncologists in this regard, and communication skills are increasingly recognized for their importance in this arena. Clinical encounters that have shown to be especially stressful for oncologists include breaking bad news, discussing transitions in care, discussing/offering end-of-life care, suggesting participation in investigational studies, disclosing error, suggesting complementary and alternative medicine, addressing spirituality, entering family discussions, and approaching cross-cultural issues.17 Communication skills workshops offer simulated patient encounters wherein physicians can explore their responses to sadness and tragedy in a structured and supportive environment. This might lead to a reduction in oncology physician burnout. One small study supports this hypothesis. In a pilot workshop, medical oncology fellows were invited to present cases including a challenging psychosocial component. The purpose was to highlight both the patients’ psychosocial needs and the fellows’ personal responses to them. The program showed high satisfaction among the participants.18 Additional prospective studies are needed to see if these sorts of programs help in preventing burnout among oncologists in the long run.
Patient’s Perceptions and Preferences
Bad news has a direct impact a patient’s life. Each patient has a unique life history and psychological make-up. Therefore, he or she responds to bad news in a unique manner. Some patients seem to prefer less disclosure or at least a gradual unveiling of troubling prognostic information. Two cases suggesting the range of different perceptions that a medical oncologist must be prepared for are discussed below.
An 86-year-old woman with metastatic cancer of the vulva was referred by her gynecologist for evaluation and treatment recommendations. She underwent initial resection 8 years prior, followed by “re-resection” for disease recurrence 4 years prior, followed by additional surgery and radiation for a new recurrence 1 year prior. When seen at her initial visit to the medical oncologist, she presented with widespread painful abdominal wall skin and subcutaneous metastasis. Her son and daughter accompanied her to the medical oncology consultation and were visibly distressed because of their mother’s suffering. The patient, an intelligent woman living independently, had limited knowledge about the nature of her illness, despite the clearly visible metastases, one of which was open and draining. The son and daughter, also intelligent and concerned about their mother, displayed little understanding regarding their mother’s diagnosis and prognosis, despite her extensive medical history and numerous medical and surgical procedures and visits to physicians. The immediate issues at hand for the oncologist to address at this initial consultation were the patient’s severe pain, her profound psychological distress, and her foul smelling and draining cutaneous ulcer. At the same time, the oncologist needed to explain the diagnosis, prognosis, and reasonable treatment options to a patient and family with whom he had no prior relationship and in whom it appeared that some degree of denial was at play. Where does the physician begin?
A 52-year-old flight attendant had stage-3 ovarian cancer, sub-optimally debulked. She had a good initial response to standard chemotherapy but then had an extensive unresectable intra-abdominal recurrence within 6 months. The disease progressed despite multiple attempts at chemotherapy. Throughout, the patient’s main concern was that she continue working. She expressed a strong desire not to receive treatment that would cause hair loss. She made it clear that she did not want to hear bad news and that she wanted to focus only on the positive. Her sister, who accompanied her to several visits, insisted that the patient not be informed of her grave prognosis. The patient continued to work albeit with occasional absences for treatment and for therapeutic palliative paracentesis. Eventually, her condition worsened; she developed fevers, abdominal bloating, and inability to eat and was hospitalized for terminal care. The patient, though clearly dying, showed no interest in discussing what lay ahead. What is the oncologist’s obligation in this setting?
Empirical studies are beginning to give some evidence-based guidance to these questions. Understanding the patients values appears to help determine how to speak to a patient and what information to provide. Attention to the spiritual needs of patients can be considered an important aspect of health care that is not necessarily based on therapeutic benefit but that instead stems from a commitment to respecting patients as whole people.19 Faith is an important factor in medical decision making and plays an important role in how some patients decide on treatment.20 If physicians do not account for it, the decision-making process may be unsatisfactory to all involved. In a study21 of urban patients’ views about spirituality and health care, patients whose spiritual needs were not met reported lower ratings of quality and satisfaction with care.
Other studies have shown that factors predicting satisfaction among patients included making the environment comfortable, giving the patient adequate time to digest troubling news, and attempting to empathize with the patient’s experiences.9 Patients’ preferences for how they would like to be told news regarding their cancer can be grouped into three categories, namely content (what and how much information is told), facilitation (setting and context variables), and support (emotional support during the interaction). In a study of 351 patients with a variety of cancers, women and patients with higher education had signficantly higher scores on the content scale; women had higher scores on the support scale. In other words, women and patients with more education wanted more detailed information; female patients wanted more emotional support. Younger patients and those with more education had higher scores on the message facilitation scale. Medical variables were not associated with patients’ ratings of the importance of the three categories.10
There is growing evidence that psychological interventions can positively affect quality of life of cancer patients,22 prolong life,23,24 and possibly even affect the immune system.25 Maximizing hope during disclosure of a diagnosis is one way clinicians can contribute to psychological adjustment early in the treatment process. Patients look to their physicians for knowledge, expertise, skill, and human concern. By appearing confident and empathic while still realistic, a physician helps give patients hope. In contrast, being negative and maintaining a distant affect takes hope away.26 In a British survey of 2,331 patients with cancer, 98% indicated that they wished to have “all information” about their cancer.27 A more recent survey of 126 cancer patients found that almost all patients wanted their doctor to be realistic, provide an opportunity to ask questions, and acknowledge them as an individual when discussing prognosis. In addition to physicians’ knowledge on up-to-date treatment about patients’ cancer, they found that “saying that pain will be controlled” is one of the most hope-giving behaviors.28
Depression as a Barrier to Effective Oncologist-Patient Communication
Depression is common in the general population, as well as in adults and children with cancer, frequently coexisting with anxiety and pain. Unsuspected depression and/or anxiety can frustrate the oncologist’s efforts to communicate effectively with patients.29 The Psychosocial Collaborative Oncology Group determined that approximately 47% of hospitalized and ambulatory adult cancer patients had clinically apparent psychiatric disorders and 68% with depressed or anxious mood. A higher percentage of patients with a psychiatric diagnosis experienced significant pain compared to those who did not receive a psychiatric diagnosis.30 Cancer types highly associated with depression include oropharyngeal (22%–57%), pancreatic (33%–50%), breast (1.5%–46%), and lung (11%–44%).29 Depression is less prevalant in patients with cancers, such as colon (13%–25%), gynecologic (12%–23%), and lymphoma (8%–19%).29 It is important to note that the prevalence of depression varies with age, gender, where the individual stands in the course treatment, geographic location,31 and the presence of pain. It is difficult for the clinician to reliably predict the potential for depressed affect in an individual patient. Perhaps a more effective predictor of clinical depression is physical performance as measured by the Karnofsky scale.32 In one study, among patients with a Karnofsky score of ≤40, 77% met the criteria for major depressive disorder (MDD). Of those with scores >60, only 23% met the criteria for MDD.29
In addition, there was variance in screening and referral for depression based on the location. A study reported from New York City33 found that 44% of patients scoring ≥13 on Hospital Anxiety and Depression Scale were referred for evaluation. Another study34 from South Africa found that only 14% of patients identified as depressed had been identified and treated for depression. Pascoe and colleagues34 found that the majority of cancer patients with psychological distress were not receiving counseling or psychological treatment.
Hoffman and Weiner35 described strategies to enhance the oncologists’ ability to detect and diagnose depression in his or her patients. First, oncologists should expand their differential diagnosis of somatic symptoms to include depression. Second, the observatoins of people close to the patient should be obtained. Third, oncologists should follow the patient’s mood longitudinally. Fourth, the patient’s responses should be compared with normative responses. Lastly, the oncologists should be aware of disease phases associated with patient distress. The oncologist is typically under much time pressure during an average visit. If a patient has mild-to-moderate symptoms sugggestive of depression, the oncologist can space his or her evaluation over two meetings (Figure 1).36
Coping Style and Prognostic Disclosure
Personality, spirituality/culture, and adaptation style collectively play a role in the patient’s response to a cancer diagnosis. The physician who knows his or her patient and acknowledges these key variables can most effectively engage in guiding the patient throughout the illness cycle (Figure 2).37,38
To be most thoroughly informed, the physician must begin by examining the building blocks38 informing the patient’s view of himself, others, and the world. These are formed early in childhood, and initially introduced by one’s parents. They are elaborated on through one’s learning and contact with other individuals, including teachers, clergy, friends, and family. With a sense of community and embedded national belief systems, the templates an individual utilizes to interpret events in his or her life are established.
It is essential to elucidate the patient’s spiritual/cultural beliefs with respect to a higher power and death/dying. While physicians are best informed of these by asking the patient formally and directly, informal conversation with and observation of the patient and his or her family are just as useful in informing physicians of the patient’s views.
Watson and Greer37 offer a practical and illuminating way to perceive the manner in which patients approach coping with serious medical conditions. A summary of a sample of those views is illustrated in Table 1,37 where an attempt is made to categorize them as they inform the physician of the patient’s likely adaptation style. Through an elucidation of the patient’s adaptation style, it is possible to anticipate and predict the specific coping strategies most likely to be employed throughout the illness cycle. Numerous studies have examined these coping strategies, concluding that active coping styles are much more effective in minimizing the emotional distress associated with serious medical illnesses.39 Approaching serious illness with a sense of helplessness/hopelessness has yielded depressive disorders while anxious preoccupation is likely to result in anxiety-related illnesses.
Synthesis: The Informed Physician
The physician who utilizes these building blocks develops insight into the patient’s likely adaptation style and is in the best position to establish a treatment approach best suited to his patient. For example, those who believe their fate is in God’s hands and have a fatalistic adaptation approach are less likely to ask questions or seek a great deal of attention/assistance from family/friends. However, those with a more hopeless or preoccupied approach may require the intervention of a psychiatric consult to help them cope with their emotional pain. Overall, the physician is now most thoroughly and appropriately informed with respect to the best manner in which to communicate/intervene with his patient.
Recalling the two case scenarios presented earlier, the emerging evidence base offers practical suggestions. For the 86-year-old woman with advanced vulvar cancer, the key initial issues include ascertaining patient and family’s understanding of the nature of her illness. Given her severe pain and distress at the foul smell of her metastatic lesions, offering a practical strategy to address these would be crucial at an initial visit. Confronting the patient and family’s denial would likely prove counter-productive. At subsequent visits, the physician would want to explore the patient and family’s wishes regarding how they want information to be related, try to get a sense of what the patient’s “coping style” might be and how her spiritual beliefs and values might influence attitudes toward continued treatment, explore the patient’s emotional reaction to the presence of visible and disfiguring metastases and offer empathic support. Once a trusting relationship has been established, the physician could move on to discussion of realistic treatment alternatives, including hospice referral. If there was evidence of underlying depression or anxiety, a psychiatric referral or pharmacologic treatment might be offered.
Regarding the second patient with advanced ovarian cancer who only wanted to hear good news and whose sister insisted that she not be told of her grave prognosis, patients may choose to allow others to be the primary recipients of diagnostic and prognostic information. This patient’s coping style appears to best fit the category of “avoidance/denial,” and attempts to engage in realistic discussion are likely to be rejected by the patient. However, it would be important to explore the patient’s reasons for not wishing to participate in crucial decisions about her care, offer her opportunites over the course of the relationship to change her approach, and explore the sister’s reasons for wishing to keep the patient uninformed. Requests for non-disclosure are common. Table 2 summarizes the priniciples of a suggested approach to such a scenario.40
Communication skills do not necessarily improve solely with years of medical practice.41 In recent years a variety of resources have emerged, highlighting the importance of communication skills training for cancer professionals. Evidence for the efficacy of formal training in communicating diagnosis and prognosis is beginning to emerge. Recognition of co-existing psychiatric illness and elucidation of each patient’s unique coping style may facilitate oncologist-patient communication. Additional studies of the impact of improved communication on patient and professional satisfaction need to be conducted. PP
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