Dr. Strada is attending psychologist in the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center and assistant professor of Neurology and Psychiatry at Albert Einstein College of Medicine in New York City. Dr. Sourkes is Kriewall-Haehl Director of Pediatric Palliative Care at the Lucille Packard Children’s Hospital at Stanford and associate professor of Pediatrics and Psychiatry at Stanford School of Medicine in California.
Disclosure: The authors report no affiliation with or financial interest in any organization that may pose a conflict of interest.
Please direct all correspondence to: E. Alessandra Strada, PhD, Attending Psychologist, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, 12 Baird Hall, 1st Avenue and 15th Street, New York, NY 10003; Tel: 212-844-8844; E-mail: AStrada@chpnet.org.
• Psychological and psychiatric care of patients is one of the domains of palliative care.
• The psychological care of palliative care patients and their caregivers presents unique challenges and requires specific skills.
• Psychotherapy is a psychological intervention that can improve coping and minimize suffering for both patients with advanced illness and their caregivers.
• The optimal delivery of psychotherapy in the palliative and end-of-life care setting requires an integrative and flexible framework.
The goal of palliative medicine is to actively treat distressing symptoms that are associated with advanced illness. Pain and other physical symptoms, emotional and spiritual distress, and caregiver burden become the focus of the palliative care team. As a physical illness progresses, patients and their caregivers may experience increasing or continual emotional distress caused by the awareness of a limited prognosis. Psychotherapy is a psychological intervention that can help patients and caregivers improve coping and reduce the suffering resulting from the awareness that death may be near. It can also be used effectively to improve communication between patients and other members of the treatment team. The delivery of psychotherapy in the palliative care setting requires a modification of the traditional outpatient model. This article reviews conceptual and clinical issues related to psychotherapy in the palliative care setting and offers suggestions that can be utilized by clinicians working with palliative care patients and their caregivers. Traditionally, the various schools of psychotherapy have not focused on patients with advanced illness who may be facing death. Palliative care brings unique demands and perspectives to the psychotherapeutic process. This article reviews conceptual and clinical issues that arise in this setting.
Patients with advanced illness will react differently to the progression of illness and the awareness of a limited prognosis. Their psychological adjustment may be affected by a variety of factors. Prior psychiatric illness, history of prior losses, level of social support, spiritual resources, overall symptom burden, and personality characteristics all impact on patients’ well-being.
The last decade has seen a significant growth in the development and application of psychological and psychosocial interventions for patients with advanced illness. These interventions can be delivered to the patients alone, to caregivers alone, or to the family system. The psychological demands and difficulties experienced by patients with advanced illness can change rapidly as a result of the trajectory of illness. As patients may become focused on their caregivers rather than on themselves, the therapist may be required to include the family in the intervention. The setting where patients can receive psychotherapy may also suddenly change, as patients may be suddenly hospitalized for long periods of time and therapy may have to take place in the hospital room. Therapists working in palliative care settings are often required to adopt a flexible and integrative framework, where case conceptualization may require several modifications in the course of the work with the patient.
This article discusses the delivery of psychotherapy in palliative care, emphasizing the unique needs of this clinical setting. The goal of this discussion is to provide primary care physicians (PCPs) with an understanding of issues that may be relevant to their patients with advanced illness. PCPs should be able to identify patients who may benefit from psychotherapeutic interventions, make appropriate referrals to mental health providers, and facilitate continuity of care when patients and families move along the various transitions of care. While empathic communication, reflective listening, and compassionate presence are essential therapeutic qualities that providers should exhibit, the provision of psychotherapy involves the development of a specialized skill set acquired through specialized training. The scope of this article is not to “teach” PCPs how to provide psychotherapy. Rather, it is to review and highlight the uniqueness of palliative care patients and the palliative care setting.
The Palliative Care Setting
The World Health Organization described palliative care as “an approach which improves the quality of life of patients and their families facing life-threatening illness through the prevention, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.”1 Palliative care can be provided in conjunction with curative and life-prolonging treatment in order to minimize side effects. It may also become the main modality of care when patients are no longer receiving active treatment and approach the end of life.2 While palliative care was initially a modality in cancer care, it is increasingly applied to serve the needs of patients with chronic, progressive pulmonary disorders; renal disease; chronic heart failure; and progressive neurologic conditions.3-6 The National Consensus Project for Quality Palliative Care2 identified psychological and psychiatric aspect of care as one of the eight domains of palliative care (Table 1). Providing for the psychological needs of palliative care patients and caregivers represents a unique challenge as they face the difficult reality that their illness cannot be cured, will continue to progress, and will likely cause death. Confronting proximate mortality may represent an extraordinarily difficult scenario. Symptoms of depression, anxiety, and grief reactions can often accompany palliative patients’ clinical presentation.7,8
Quality palliative care requires that psychological distress be actively addressed by the palliative care team. Psychotherapy can be provided in conjunction with psychotropic medications, or alone when medications are contraindicated or patients prefer to address their distress in non-pharmacologic ways. Psychotropic medications can relieve symptoms of anxiety and depression in palliative care patients and their use is reviewed elsewhere.9-11 Psychotherapy can provide a safe and structured space as well as a symbolic container where patients and caregivers can process their feelings about the illness and the possibility of their death. Evidence from the literature shows that psychotherapy can improve symptoms of depression of patients with serious and advanced illness12-15 as well as increase overall coping skills, improve family dynamics, and alleviate suffering.16-23 The delivery of psychotherapy requires a specific theoretical framework and targets patient with or without prior or current psychiatric history and symptoms. The different schools of psychotherapy share the following basic considerations: emphasis on the importance of the therapeutic alliance, a setting where the therapy takes place, an explanatory model for the patient’s symptoms and distress, and a structured set of interventions aimed at resolving psychopathology and improving psychological well-being.24
When patients’ medical care transitions from the curative to the supportive palliative mode, careful assessment will allow PCPs to determine the level of psychological intervention needed. Accurate assessment will reveal the patient’s coping skills, risk level, and willingness to explore emotions elicited by the progression of illness and awareness that death is not only possible, but a likely outcome. As different psychotherapeutic interventions target symptoms to a varying degree, it is important that the intervention offered matches the patient’s level of distress, level of insight, willingness to explore and express emotions, and interpersonal style.25-33
Case Formulation with Palliative Care Patients
The delivery of both short and long-term psychotherapy in the palliative care setting requires a comprehensive case formulation of the underlying causes of the patient’s difficulty.34 This conceptualization provides both theoretical and clinical understanding of the psychological diagnosis and a guide to treatment. Many palliative care patients who receive psychotherapy do not meet criteria for a formal psychiatric diagnosis. Exploration of existential questions related to the meaning of life, meaning of death, hope, and concern about leaving loved ones frequently becomes the focus of psychotherapy.35 Careful conceptualization that can be shared with the treatment team facilitates the implementation of an overall treatment plan that addresses the patient’s goals.
Sim and colleagues36 identified five aspects of case formulations: integrative, explanatory, prescriptive, predictive, and therapist. According to this model, a case formulation highlights and summarizes the most important clinical issues (integrative), helps to understand the development of symptoms in patients and caregivers (explanatory), guides treatment and addresses goal setting and treatment plan (prescriptive), and allows for evaluation and redirection of treatment (predictive). The “therapist” component addresses the nature of the therapeutic relationship. The goal is to identify and address ruptures that may negatively affect the therapeutic alliance, as well as highlight the positive and protective aspect of the relationship.
Adequate case formulation becomes especially important when faced with challenging clinical scenarios. Patients’ and caregivers’ ability to integrate a diagnosis of serious illness is not only a function of intrapersonal and interpersonal factors. Having a sufficient amount of time to adjust to the new circumstances may play an important role in facilitating adaptation allowing the patient to mobilize personal coping skills. Patients who receive an initial diagnosis of advanced disease with a very poor prognosis may require careful and intense management. When faced with the reality of a catastrophic illness that may allow for only a few months of life before decline and death, psychological and psychiatric care must focus on helping patients and caregivers process intense and often intolerable emotional suffering. Evaluation is needed for adequate use of psychotropic medication to address symptoms of anxiety and depression, especially overwhelming fear, panic, difficulty sleeping, and suicidal ideation. Psychological treatment may need to include crisis intervention, cognitive-behavioral approaches to address severe symptoms of anxiety as well as physical symptoms, and family therapy to support caregivers and help maintain adaptive family dynamics. Psychological approaches that include attention to the patient’s spiritual resources and grief therapy may be appropriate. The importance of an integrative theoretical approach becomes especially clear when therapists are working with patients and caregivers whose circumstances challenge their ability to adapt to their medical situation maintaining a sense of meaning and personal integrity. A single therapy session with a patients and a family facing the difficult situation described above often includes several therapeutic approaches (Table 2).36
The Psychotherapy Framework in the Palliative Care Setting
The majority of psychotherapy approaches do not usually allow for modifications of the therapeutic contract that identifies the “patient” at the onset of treatment; individual therapy does not become couples or family therapy. However, providing psychotherapy to palliative care patients often requires the therapist to adopt a more flexible framework. The basic structure of the therapy will often be impacted by the patient’s health status, the patient’s relationship with family and caregivers, and system issues related to the delivery of care. The awareness that advanced illness is likely to result in the patient’s death has the potential to destabilize family dynamics and the equilibrium of relationships37 and may highlight the need to include other family members or caregivers in the session. Patients who are parents may ask the therapist for assistance communicating with children and spouses. The therapist may be asked by the patient to join the family and medical team in discussions regarding goals of care.
A flexible therapeutic contract does not relieve the therapist from the responsibility to adhere to the highest ethical standards possible, including confidentiality.38 However, pertinent information regarding the patient’s adjustment level and emotional functioning that may impact on the overall treatment plan should be shared with other team members. This is especially important as symptoms of depression or anxiety may affect medical treatment and need to be addressed pharmacologically, in conjunction with psychotherapy.
In a traditional outpatient psychotherapy framework, sessions usually occur at the same time on the same day of the week. This structure is based on the belief that having sessions at the appointed time allows for better containment of the psychotherapy process. Additionally, while patients’ lives may often be characterized by significant unpredictability, maintaining a clear structure in psychotherapy allows patient and therapist to create a therapeutic space that is relatively unaffected by outside changes.39 This element, in and of itself, may have a calming influence on the patient and allow for an improved sense of control. While adherence to time is often possible in an outpatient setting, if patients become more debilitated, the appointment time may need to be frequently changed in order to accommodate their needs. Controlling time may become increasingly challenging if the patient’s illness progresses and hospitalizations occur.
However, it is very important that patients not be kept guessing about the availability of their therapists, especially if the emotional environment becomes more ambiguous and fearful.
In a traditional psychotherapy framework, great importance is placed on preserving the therapeutic space, usually the therapist’s office, as free from change and distracting elements as possible. The rationale for this approach can be traced in the history and development of psychoanalysis. The physical space was conceptualized as a symbolic container of the patient’s unconscious and, as such, was supposed to be immutable.
As long as patients are ambulatory and can physically go to the therapist’s office, a certain level of immutability in the physical space can be achieved. As illness progresses and patients spend more time in the hospital, the physical space of the therapy session may change repeatedly. Continuity of treatment takes precedence over immutability of the physical space. The session can take place in the chemotherapy infusion suite, exam room of a palliative care clinic, hospital bedroom, patient’s home, or inpatient hospice setting. The instability of the therapeutic setting can be burdensome for the patient and therapist, especially if privacy becomes an issue. The therapist can facilitate this process by noting that unpredictability of the setting is expected and can be conceptualized as part of the setting itself, while emphasizing the primary importance of the stability of their relationship. Psychotherapy interventions at the bed side can effectively provide patients with needed support40 and may continue until the patient’s death.
As patients’ illness progresses, they may become unable to sustain a customary 50-minute session. Fatigue, pain, and other distressing symptoms often interfere with their ability to concentrate and interact with the therapist. Additionally, as patients enter a terminal state, they may experience physical and psychological withdrawal. Therefore, they may progressively or sometimes suddenly lose interest in the content of the psychotherapy session. Experienced clinical assessment is required to differentiate clinical depression from an adaptive process of progressive withdrawal commonly observed in patients at the end of life. As death becomes closer, patients may notice a change in their ability to engage. They may deny feeling depressed but acknowledge decreased interest in engaging in the outside world, including their loved ones. Asking patients how they feel about their level of disengagement and whether they would like to feel more energetic is also a helpful assessment tool. If patients report that they would like to have more physical and emotional energy to continue to interact with family and other caregivers, consideration should be given to interventions focused on increasing activity levels. Antidepressants or psychostimulants can be used in patients with advanced illness to improve energy levels. These medications are usually selected on the basis of side-effect profiles, drug-drug interaction, and patients’ life expectancy.9,10 If, however, patients report that they feel comfortable with their decreased level of engagement and report being peaceful, the therapist’s interventions may then need to be directed to the patient’s caregivers who may feel hurt by the lack of emotional engagement exhibited by their loved one. A combination of psycho-education and grief therapy may help the family process this significant change in the relationship with the patient.
Therapeutic Process and Content
In psychodynamic-oriented psychotherapy, therapeutic content and process are expected to flow in a relatively unstructured manner, without setting specific time limitation to the organic unfolding of the process. However, advanced illness often creates a heightened sense of awareness of the importance of time both in the therapist and patient. The theme of time itself with associated questions related to the course of the disease may dominate the focus of the sessions. Psychotherapy provides patients with a space where present, past, and future can be perceived separately or in a framework based not only on the “here and now” but on a parallel dimension of intra-psychic reality. In such space, patients can hold both the awareness of probable or imminent death and hope for cure. Patients may need permission to hold both a life narrative and a death narrative and will test the therapist’s experience and personal level of comfort and skill accepting both temporal dimensions. Patients may, during the same psychotherapy session, demonstrate ability to engage in pleasurable activities as well as actively grieve the reality of impending death.
Themes of separation, loss, and grief are also often closely related to the theme of time. As the therapist allows these themes to unfold during the session, following the patient’s lead, there is an opportunity to explore patients’ personal grieving styles and personal history of loss. The balanced combination of supportive psychotherapy, timely interpretation, and careful assessment will allow the therapist to identify patients at risk for the development of complicated grief, major depressive disorder, or anxiety.
In recent years, significant attention has been given to the importance of existential and spiritual themes for the process of making meaning of the experience of illness.41,42 As they are now widely recognized as having a fundamental impact on patients’ adaptation to illness, therapists need to recognize the potential importance of exploring existential and spiritual aspects of the patient’s intra-psychic reality. This can be especially challenging as there is a wide variation in the depth of personal exploration of these matters in patients and therapists.
Psychotherapy for patients with advanced illness necessitates providing a literal and symbolic container where expectations, perceptions, fears, and anxieties can be safely expressed by the patient. However, patients may never utter the word “death.” This should not be necessarily interpreted by the therapist or medical providers as a sign of unhealthy denial or lack of coping. Cultural and religious influences often play a significant role in determining a patient’s level of comfort openly discussing death.43-48 Clearly, a skilled therapist would want to gently explore the patient’s level of awareness and whether decisions about communication regarding the disease are supportive or unsupportive of the patient’s therapeutic process. It should be recognized that patients may exhibit what could be described as self-directed disclosure, or acceptance. In this self-directed process, patients may have an internal and clear awareness of the severity of their prognosis and, at the same time, might decide not to disclose this awareness or share it with family members or staff, including the therapist. Whether this approach is deleterious to the patient’s psychological well being should be object of careful assessment.
The Therapeutic Relationship
In the midst of the illness narrative, the relationship with the therapist should bring a sense of stability and safety in the patient’s life. With illness threatening many aspects of life, including the very sense of body integrity and survival, the stability and predictability of the relationship with the therapist can promote some sense of hope.
In traditional psycho-dynamically oriented psychotherapy, transference is the primary vehicle of communication and exploration between the therapist and the patient and is regarded as not limited by the constraints of real time and space.49 Once conceptualized exclusively as a projection of the patient’s development and ego function, it is now understood as a result not only of the patient’s feelings but also of the therapist’ counter-transference.
The term counter-transference refers to the collection of feelings and emotional reactions evoked in the therapist during the course of the therapeutic relationship. It is the result of the patient’s behavior, the therapist’s past or current situation or, most often, a combination of the three.50 Counter-transference is not limited to the context of psychotherapy but may be experienced by any member of the palliative care team who establishes a relationship with the patient. Therapists are trained to recognize and use counter-transference for the benefit of the patients. Medical providers may also benefit from sharing and processing feelings about their patients with peers. Fear of death and feelings related to loss and bereavement are commonly experienced by patients at various stages of the illness and can often represent most of the content of the session. As a result, the therapist may be vicariously “forced” to develop awareness of personal feelings about mortality and past or current losses. Working with certain patients, or those with certain diagnoses, may be more emotionally challenging than others. The quality and intensity of the emotions developed in the therapist are often modulated by the losses and deaths experienced and the degree to which grief has been processed. If the patient’s illness progresses during the course of therapy, the therapist must be able to discuss the possibility of death, if the patient chooses to do so. The importance of self-assessment for therapists cannot be over-emphasized and remains, in addition to specialized training and experience in palliative and end-of-life care, the main modality to manage potentially disruptive counter-transference. For example, if the patient feels helpless and afraid of dying, the therapist may regress to a helpless position with the patient. The therapist may also engage in anxious avoidance of the patient. At times, the personal reality of the therapist may even mirror the patients’ experience; the therapist may lose a loved one to illness or sudden death, or the therapist may be diagnosed with a life-threatening illness.51 Successful management of this type of counter-transference involves deciding whether to disclose and the extent of the disclosure, as well as handling potential ruptures in the relationship.51,52
The end of therapy is often referred to in the literature as termination. It is a crucial and delicate part of every therapeutic relationship and process. It is a carefully planned process by which therapist and patients review the work done together and acknowledge the completion of that particular therapeutic relationship.
While termination marks the end of a therapeutic segment it does not necessarily mean therapy is complete. The importance of addressing termination in a proactive manner, following clinical and ethical principles, may create significant challenges for the therapist and the patient.53-57
Termination of therapy with a physically healthy patient may allow the therapist to imagine a scenario in which patients continue to live with a higher level of satisfaction. In the palliative care setting, formal termination is a normative part of the process. Therapy may end due to the patient’s death, progressive cognitive decline, enrollment in home-hospice, or transfer to another medical facility. Unplanned interruptions are common in the palliative care setting; therefore, the end of the therapeutic relationship may be unplanned and relatively abrupt. As a result, each therapy session needs to be complete, even though the possibility that it could be the last one may never be openly discussed.
Depending on the health status of the patient and the staging of the disease, saying goodbye can take on different meanings. Psychotherapy interventions based on a time-limited approach may be more likely to offer patient and therapist the opportunity to review the work done and say good-bye, thus openly acknowledging the end of the therapeutic relationship. When psychotherapy is provided within a long-term model, it may start at any point during the course of the patient’s illness and it may continue until the patient’s death.
Issues of counter-transference may have an unexpected and important impact on the therapist’s behavior and emotional responses during the termination phase. The therapist may experience significant grief, sadness, or relief that the therapy is over. However, at the same time the patient may focus on expressing gratitude for the help received and may not want to recognize or acknowledge any further feelings related to loss or sadness. For successful termination it is important that the therapist hold any agenda or expectation lightly and not impose them on the patient. Therapist and patient may be aware and openly acknowledge that the sadness they are experiencing is not only the result of the end of the therapeutic relationship, but also due to the shared awareness that the patient may not likely survive the disease. While the awareness of the progressive decline of the patient’s health may prompt the therapist’s desire to begin saying goodbye to the patient, clinical experience suggests that this process should not be started or imposed on the patient who is not ready or willing to engage in it. If the patient appears unwilling or unable to share any negative emotions related to the end of the relationship, the therapist should respect this choice. Therapists’ inclination to share feelings about the end of the relationship should be subject to careful self-assessment and be avoided if it could emotionally burden the patient. Therapists may occasionally gently raise the issue of separation by saying “I have been thinking about what is would be like for us to say goodbye.” The patient may decide to accept or ignore the invitation and it is essential that the therapist respects the patient’s boundaries. In this context termination—whether due to the end of therapy or to the end of the patient’s life—must follow the same principle of preserving the integrity of patients’ emotional life, safeguarding them from suffering.58-60
The presence of a professionally trained therapist who is an expert in assessment and provision of individualized interventions represents an invaluable asset for palliative care settings. A flexible framework will allow the therapist to adapt the therapeutic model to the changes in setting often imposed by the clinic or hospital environment. The most effective theoretical approach in palliative care is integrative and it allows therapists to adopt several intervention modalities in order to meet the psychological needs of patients and caregivers. As they accompany patients and families during their difficult journey through illness and the dying process, therapists will need to mobilize skills and sensitivity in complex settings that will test their tolerance for ambiguity and their ability to offer predictable, skillful, and compassionate presence. PP
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