To Accompany, Always: Psychological Elements of Palliative Care for the Dying Patient

Abstract

Palliative care clinicians provide psychological support throughout their patients' journeys with illness. Throughout our series exploring the psychological elements of palliative care (PEPC), we suggested that the quality of care is enhanced when clinicians have a deeper understanding of patients' psychological experience of serious illness. Palliative care clinicians are uniquely poised to offer patients a grounded, boundaried, and uplifting relationship to chart their own course through a life-altering or terminal illness. This final installment of our series on PEPC has two aims. First, to integrate PEPC into a comfort-focused or hospice setting and, second, to demonstrate how the core psychological concepts previously explored in the series manifest during the dying process. These aspects include frame/formulation, attachment, attunement, transference/countertransference, the holding environment, and clinician wellness.

“We are what we are because we have been what we have been.”

—Sigmund Freud¹

Vignette

Gloria is a 54-year-old mother and teacher who has lived for the past 2 years with progressing lung cancer. She is now experiencing significant functional and symptom-related effects on her health. Gloria has shared that her oncologist, Dr. Ko, said that further cancer-directed therapies such as chemotherapy and radiation were unlikely to extend her life or help her feel better and that she should consider enrolling in home hospice. Gloria's palliative care clinician recognizes her declining condition and supports her plans for a transition to hospice care.

Gloria comments, “I just can't wrap my head around it. Have my doctors given up on me? I always thought there would be something else like more chemotherapy or a clinical trial. What does it mean that they don't have anything else to offer me? I can't believe Dr. Ko thinks I need hospice care. I'm not sure I want some stranger sitting on my sofa. I'm not sure I'm comfortable with people in my house.”

Introduction: Psychological Aspects of Dying

What do dying people say matters most? Patients report priorities such as being in the presence of family, finding peace, often with God or spiritual beliefs, and not wanting to be a burden to others.² Although psychological growth is not often mentioned by patients, palliative clinicians witness many dying patients experience transformative personal development.^3–5 Many patients engage in emotional work to find meaning, however, they define it. A growing awareness of the end-of-life prompts reflection as some patients create their own “inner circles” of support, pursue unfinished business, find peace in their religious or spiritual tradition, and reconcile with loved ones and find closure in relationships.^6–8 Some want to maintain a sense of normalcy if possible or prefer a solitary path.⁹ Other patients struggle to cope and adapt, most often using the strategies that reflect the ways in which they lived.

Palliative care and hospice clinicians know that the end-of-life period is as unique to the individual as birth, maturation, senescence, or any other important lifespan transition. Patients can think and plan about how they want these life experiences to be, but ultimately, contend with forces outside of their control. When palliative care clinicians initiate discussions of end-of-life care, the conversation often centers first on the treatment of physical symptoms such as pain, dyspnea, and respiratory secretions. Once patients are more comfortable, they often have more ability to engage with the psychological aspects of dying. The support of a palliative care team has been shown to reduce patient and family emotional distress through symptom management and by strengthening coping.^10–12 Coping by making meaning and narrative during distressing life events has been shown to minimize depressive symptoms and lead to more goal-concordant choices about end-of-life care.^13–15

Palliative care clinicians help patients do this by creating supportive infrastructure around the patient, family, and larger clinical team. When patients know that this extra layer of support exists, they may even find new opportunities.¹⁶ Palliative care and hospice clinicians are analogous to the gardeners of a grassy park: they ensure that the gathering space is clear, safe, and organized, and then the visitors choose whether to sit in quiet contemplation, take a gentle walk, or host a lively cookout. Different patients will find meaning through a vast array of activities, relationships, life choices, and ways of being.

Frame/Formulation: Recognizing the Dying Process

As patients approach the end of life, the frame of care may change dramatically.¹⁷ This typically means refocusing treatment on comfort care and shifting discussions toward existential topics that may feel unfamiliar to patients and families. The differences can be concrete such as no longer attending outpatient clinic appointments or stopping disease-directed medications. Patients ask: “Does stopping chemotherapy mean I won't see my oncology team again?” or “If I do hospice at home, how will I get my medications?” The differences can also be abstract and meaning laden.

For example, the frame shift of enrolling with hospice care often provokes anxiety. Patients ask: “Does hospice mean that my oncologist has given up on me?” or “Am I dying now?” While Gloria's case involves advanced cancer, seriously ill patients with a wide variety of organ failure syndromes and neurodegenerative conditions may have the same questions about hemodialysis or visits to a neurologist. Often, questions that may appear concrete or logistical allude to the change in the frame of treatment. In our example, we use home hospice as the location of care but it is also true that hospital-based palliative care teams care for many patients through the end-of-life period with different frame concerns.

Becoming sicker and approaching end of life often forces a redefinition of the frame. The authors of the REMAP (Reframe, Expect emotion, Map out patient goals, Align with goals, and Propose a plan) communication framework offer the phrase, “We are in a different place now.”¹⁸ Talking transparently about the redefined frame with patients and families ensures that the roles of the team and the goals of treatment are clear. When clinicians directly address the fact that the patient has entered a new phase of the illness, such openness can help people feel supported and assuage anxiety. Clear communication can also facilitate the introduction of new clinicians such as hospice professionals or an inpatient palliative care unit team. Importantly, being clear about a frame shift to end of life does not mean being explicit about the prognosis or saying the word “dying.” This frame shift can occur with nuanced conversation that is calibrated to patients' information preferences.¹⁹

To optimize care, when clinicians realize that a patient is entering the end-of-life period, they can continue to use formulation, or the psychological hypothesis we hold about our patients. A formulation guides us in honoring our patients' values and predicting vulnerabilities during emotionally and logistically challenging moments. Considering our case example, Gloria's palliative care clinician may reflect on what she has learned about Gloria during their time together.

Gloria has done best with frequent reassurances and close contact, expressing fears around becoming a burden to others. With these things in mind, the palliative care clinician may facilitate a “warm hand-off” transition, a phone call or personalized e-mail to the hospice team and suggest that they emphasize how hospice will help Gloria maximize her connection to friends and family. The palliative care clinician can communicate with the hospice team and help ensure a seamless continuation of the patient-centered care, including interpersonal or psychological strategies that have been particularly beneficial.

Attachment: Encountering the Hospice Team

When patients transition to hospice, they face an entirely new set of clinicians with whom they may form relationships. The patient's attachment style, or template for close caregiving relationships formed throughout their lives, often influences interactions with health care clinicians. Earlier in the series, we learned that some individuals tolerate a range of caregiving relationships (secure attachment), while others may struggle to connect (insecure attachment). Within the schema of insecure attachment, some patients avoid too much closeness (dismissive attachment) or become anxious when they perceive too much distance (preoccupied attachment). Some patients have chaotic relationship histories forged in early trauma (fearful-disorganized attachment). These templates may influence the way that patients connect with their hospice clinicians—and what their needs and preferences may be.

Gloria tends toward a preoccupied attachment style; she worries that she will not receive the care she needs when she detects a lack of closeness in her relationships. Using the concept of formulation over the course of their clinical encounters, her palliative care clinician noticed this attachment pattern. Now that Gloria is on the verge of engaging hospice, her palliative care clinician tailors Gloria's medical care to her attachment style. First, her clinician provides reassurance about the reliability of the hospice organization by recounting previous good experiences with staff and the inpatient facility. To further reassure, while in the clinical encounter, clinicians may even look up an organization online (to show the patient what the facilities look like) or call them directly (if additional information is needed about services).

Next, Gloria's clinician provides a concrete reminder of hospice's reliability. After explaining how hospice might help in an emergency, she writes out a specific medical plan for expected complications such as acute shortness of breath. Symbolic objects, in this case a care plan, can support meaningful relationships and are an underutilized tool in end-of-life care.^20,21 Finally, a successful hospice experience for Gloria will require that the hospice is responsive. Hospice is well-suited to this purpose with a phone line to call with problems and clinicians available when needed for home visits. To help Gloria use hospice effectively, her clinician emphasizes these resources and encourages Gloria to use the hospice system for routine and emergent needs, rather than calling the office of her oncologist or primary care clinician, which Gloria has been doing for many years.

Attunement: Cultivating Resonance and Connection

As Gloria enters hospice, it remains crucial for her clinicians to demonstrate clinical attunement.²² Clinical attunement is the clinician's responsiveness to the patient's spoken and unspoken needs, with particular attention to how the patient is coping and the patient's need to make medical decisions. Gloria's oncologist shows attunement when she remembers what day Gloria is scheduled to enroll in hospice and calls to check that the visit went well. Attuning to the specific situation of the patient means that the clinician imagines what the patient may be experiencing, considers her preoccupied attachment style, and offers extra support. Knowing the patient's informational preferences and past reactions can help a clinician attune to the patient's particular circumstances and offer tailored care. Dr. Ko demonstrates her understanding of Gloria's emotions in the face of a significant medical transition and this responsiveness deepens their clinician-patient relationship.

Once patients are enrolled with hospice, clinical attunement helps the patient's new clinicians quickly develop a connected relationship. After hospice enrollment, it is often not feasible for palliative care clinicians to be the primary clinical contact for patients. This is often the case for inpatient clinicians. When this is so, the palliative care clinician demonstrates clinical attunement by noticing how the patient is adjusting to the hospice transition and then offering clinical and emotional support during the transition to encourage the patient to form new relationships with the hospice team. This can be done implicitly. For example, at the end of the visit, a palliative clinician may encourage Gloria to schedule a back-up clinic visit and emphasize that Gloria can cancel if she is doing well with the hospice team.

The palliative care clinician can also explicitly note the end of the clinical relationship by saying good-bye. Attuning to the patient's psychological needs will guide the pace at which the palliative care clinician transitions the primary relationship to the hospice team. Some patients may have great difficulty disconnecting from previous care teams and fully engaging with hospice. Clinicians can scaffold a successful transition by spacing out supportive phone calls, eventually leaving the option of further contact to the patient's discretion. “Remember I am always here if you need me. You have my number. Please don't hesitate to call.”

Transference/Countertransference: Navigating Complex Emotions between Clinicians and Patients

Palliative care clinicians cultivate healthy clinical relationships over the course of a serious illness from diagnosis to the hospice transition.²³ These bonds are built on positive transference, or the set of automatic emotional reactions, between the patient and clinician. Transference specifically applies to the feelings and associations generated by the patient toward the clinician. Countertransference applies to the reciprocal feelings and associations generated by the clinician toward the patient. In both transference and countertransference, the “space between” the two individuals, the interplay of verbal and nonverbal interactions, is critical to the success of the therapeutic relationship, wherein patients will gradually allow themselves to know the clinician and be known in return. Ideally, the trusting bond between clinician and patient can be transferred to the hospice team, who can build on the positive feelings and associations that grew through the palliative care relationship.

Countertransference, our own reactions, inferences, and intuitions about patients, is an important source of clinical information. Meeting patients outside of a psychotherapeutic care setting, palliative care clinicians mostly do not have extensive psychosocial history to inform medical care. To develop some psychological understanding of our patients, we may ask specific questions related to the illness, “How have you been coping with this cancer?” We may even ask about past experiences because they relate to the illness, “How did you cope with difficult situations before this illness?” But we mostly use the textures of day-to-day clinical encounters to understand our patients' psychological makeup.

Countertransference is an important component of this informal psychological information gathering. It can be positive, such as when we greatly enjoy a patient visit, which might give us general information about how that patient experiences day to day relationships, or more specific information about a uniqueness of that clinical relationship (perhaps the patient reminds us of a good friend). Sometimes countertransference is negative. Clinicians may find themselves deviating from usual practice patterns: ending visits abruptly, forgetting to send in prescriptions, or omitting typical parts of the interview.

Countertransference and transference are powerful forces throughout the illness trajectory, including in the hospice transition setting. When encountering them, a psychologically grounded palliative care clinician must contend with their own complex web of feelings related to a particular patient as well as the patient's feelings toward the clinician. In our case example, Gloria is reluctant to trust clinicians and worries that they will let her down when she needs them. Thus, after enrolling in hospice, Gloria shows limited interest in getting to know yet another new medical team and does not return phone calls at times. These are behaviors (psychologically described as an enactment) based in Gloria's transference.

What Gloria's clinicians experience is a sense of disconnection. They feel as if they can never give enough to establish a connection and they find themselves dreading clinical visits. Her assigned nurse often leaves her appointment for the end of the workday, sometimes limiting the duration. This is a behavior, or an enactment, based in the team's countertransference.

Once clinicians identify their feelings of countertransference and related transference from the patient, they can use interdisciplinary team meetings (IDTs), peer consultation, or case supervision as tools for processing the situation, with the goal of remaining engaged even when emotions are intense or complicated.

Holding Environment: Leveraging Support Networks during Dying

Patients with complex psychological profiles like Gloria often trigger conflicting feelings in clinicians. The holding environment can be understood as a relational space to help contain and normalize the extreme, often oscillating, thoughts and feelings experienced by clinicians throughout the illness trajectory, even and maybe especially at the very end of life. The CARES (Changing the dynamic, Accompaniment, Recognizing challenges, Establishing expectations, Sharing a second look) mnemonic developed in an earlier article in this series demonstrated a structured approach to creating a holding environment for clinicians, helps optimize care.²⁴

Changing the dynamic, getting a new perspective by involving a different clinician or doing a joint visit, helps clinicians break out of repetitive or unhelpful behavioral patterns. For example, the nurse's perspective about how Gloria's family could help with medication management helped clinicians disengage with Gloria and create a family system that supported her needs.

Accompaniment, choosing to see challenging patients with a team member, allows for frequent points of team connection and a shared perspective. After visits with Gloria, team members reflected on their experiences of feeling unable to establish a connection and offered each other support. “I could not tell you felt frustrated. I thought you were very kind and caring.”

Recognizing challenges, acknowledging the difficulty of soothing intense emotions that arise at the very end of life such as hopelessness, helplessness, and demoralization, helps clinician build self-efficacy. When faced with difficult to fix patient emotions, clinicians can use self-talk to keep going, “This is a hard case that I cannot fix. I am doing the best I can.”

Establishing expectations, setting attainable clinical goals, helps clinicians maintain a sense of clinical competence, even when the patient's sense of a good outcome differs from what the hospice team thinks might be possible. In Gloria's case, although she was initially reluctant to engage in conversation, the team hoped that with consistency, Gloria might begin to trust them.

Finally, sharing a second look, such as when the team comes together to discuss the case with the hospice medical director, helps clinicians develop confidence about the prognosis and possible complications. In Gloria's case, although her palliative care clinician had given Gloria a medical plan for acute shortness of breath, the hospice team felt she was unlikely to have a dyspnea crisis because her dyspnea was stable over several weeks. Although symptom management plans were in place, the hospice team felt they could offer Gloria reassurance that she was unlikely to need them. Ultimately, the supportive nature of the interdisciplinary team's holding environment can also be felt by the patient and family as they navigate a difficult chapter of life.

Wellness: Finding Sustainable Practice to Support the Next Patient

Taking an active approach to clinician wellness is essential to mitigate the burnout and compassion fatigue experienced by many hospice and palliative medicine teams. Beyond the IDT, there are other psychologically oriented support structures that can be successfully integrated into the hospice setting. Talking to a trusted supervisor or working with a personal psychotherapist to explore complex feelings helps clinicians tend to their wellbeing and continue to grow in insight and reflection. A supervisor or therapist might use strategies based in modalities such as cognitive behavioral therapy. An alternative is peer support, talking things through with colleagues, which has also been shown to be essential to creating a healthy team.²⁵ While many interdisciplinary teams may be focused on patient cases without a space devoted to the clinicians, taking time for reflection helps prioritize clinician wellness and improve patient care by identifying how clinicians' emotions might impact the patient and family experience.

Many IDT meetings also integrate bereavement support for clinicians; for example, reading the names of the deceased patients and inviting clinicians to offer reflections. After a patient dies, many palliative care clinicians include bereavement care as part of standard practice by offering supportive telephone calls, signing a personal card, or attending a funeral if invited. Other hospice best practices include fostering clinical environments based on collaboration and trust, which can be done by maintaining strong administrative support for frontline workers and emphasizing respect for different roles.²⁶

In the IDT following Gloria's death, her hospice nurse took a lead role in debriefing the team. She spoke tearfully about how awake Gloria was, even at the very end, and how Gloria thanked her by looking her straight in the eye and telling her how deeply she appreciated the hospice team. Although it had been difficult to develop a trusting relationship with Gloria, the nurse's reflection helped the team take stock of their support of Gloria and emerge from IDT emotionally prepared once again to thoughtfully encounter seriously ill and dying patients. As psychoanalyst Stephanie Brody puts it, “grief is borne best in the company of others.”²⁷

Concluding Remarks

Throughout this series on the psychological aspects of palliative care, we applied well-known concepts from mental health literature and practice to the unique situation of serious illness care. We followed the illustrative case of Gloria, a complex patient likely to resonate with many experienced hospice and palliative care clinicians. In telling her story, we hope to have shown the ways in which psychological perspective can enhance our work. Our series ends in the IDT meeting room of a community hospice with clinicians offering one another interpersonal support after Gloria's death. Looking back over this eight-paper arc, we invite our colleagues to apply these concepts to challenging patient and family interactions, and perhaps find themselves once again moved by the depth and meaning to be found in the everyday practice of hospice and palliative medicine.

Authors' Contributions

As authors of this article, we understand that this submitted article and its content have not been previously published and the article is not under simultaneous consideration by another journal. We certify that we made substantial contributions to the content of the article, and we have given final approval of the submitted article.

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