Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts

Abstract

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. “Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care” was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021–2022.

Introduction

Early integrated palliative care for patients living with serious cancer has been associated with improved quality of life, lower symptom burden, and improved psychological outcomes.^1,2 In addition, patients with metastatic lung cancer who received early integrated outpatient palliative care are less likely to receive intravenous chemotherapy in the last two months of life and more likely to have longer hospice stays.³ We believe that the psychological aspects of palliative care may be a key component driving these benefits. In particular, a growing body of evidence suggests that patients and families who receive early integrated palliative care cope differently and that these differences in coping facilitate palliative care's benefits.^4–7

Although many psychodynamic concepts have been explored extensively in the mental health space, we endeavored to apply them specifically to the work of serious illness care. The outpatient palliative care clinic, where more enduring patient–clinician relationships are possible and much essential palliative care research is based, emerged as the most discussed location during our meeting. We hope that the concepts may be widely applicable to other spaces of palliative care provision including the inpatient unit and home or community-based environment.

We are beginning to understand how clinicians can most effectively support patients' coping. A deeper understanding is critical to inform palliative care education, research, and clinical care. Through the support of The Radcliffe Institute for Advanced Study at Harvard University, we convened an exploratory seminar to investigate how key psychological aspects of early integrated palliative care support patient coping. We also explored the educational and research implications of our discussions (Table 2). Twenty-three experts in palliative care, oncology, psychology, and psychiatry participated in this interactive event (Table 1). Although many of our participants were local to the northeastern United States, we envisioned this event to be a catalyst for further meetings involving scholars and clinicians from a broader national and even international perspective. We were limited by budgetary and logistic concerns during the seminar as it was structured into five sessions over two days.

Table 1.

Participants of the Seminar

Participant	Discipline and expertise	Primary affiliations
Allison J. Applebaum, PhD	Psychiatric oncology, cancer caregivers, meaning-centered psychotherapy	Memorial Sloan Kettering Cancer Center
Tracy Balboni, MD, MPH	Palliative radiation oncology, religion and spirituality, research	Dana-Farber/Brigham and Women's Cancer Center
Susan D. Block, MD	Psychosocial oncology, palliative care, education, research, faculty development, health system change	Harvard Medical School Ariadne Labs Dana-Farber/Brigham and Women's Hospital
Keri O. Brenner, MD, MPA^a	Palliative care, psychiatry, psychotherapy	Stanford University
Margaret Cramer, PhD	Psychoanalysis, education, supervision	Massachusetts General Hospital Harvard Medical School Fielding Graduate University Boston Psychoanalytic Institute
David Doolittle, PsyD	Psychoanalysis, education, supervision	Massachusetts General Hospital Harvard Medical School Massachusetts Institute for Psychoanalysis
Areej El-Jawahri, MD	Oncology, hematologic malignancies, research	Massachusetts General Hospital Harvard Medical School
Matthew S. Ellman, MD	Medical school education	Yale School of Medicine
Linda Emanuel, MD, PhD	Internal medicine, psychoanalysis, existential maturity	Feinberg School of Medicine, Northwestern University
Joseph A. Greer, PhD	Psychiatric oncology, cognitive behavioral therapy, research	Massachusetts General Hospital Harvard Medical School
Vicki A. Jackson, MD MPH^a	Palliative care, research, education	Massachusetts General Hospital Harvard Medical School
Juliet Jacobsen, MD, DPH	Palliative care, communication training and organizational systems, education	Massachusetts General Hospital Harvard Medical School
Alfred Margulies, MD	Psychoanalysis, psychiatry, existential-phenomenological studies, education	Boston Psychoanalytic Institute Cambridge Health Alliance Harvard Medical School
Alexandra Munroe, PhD	Family caregiver, curator, Asia scholar, author focusing on art, culture and global strategy	Guggenheim Museum and Foundation
Jessie Logeman, MD MHSc	Cultural anthropology, internal medicine residency	Massachusetts General Hospital
Simone Rinaldi, MSN	Nursing, palliative care clinic director	Massachusetts General Hospital
Christine Ritchie, MD, MSPH	Geriatrics and palliative care, clinical translational research and aging	University of California San Francisco
Gary Rodin, MD	Psychological dimensions of palliative care, physiatrist and psychoanalyst, research	University of Toronto, Princess Margaret Cancer Centre, Global Institute of Psychosocial, Palliative, and End of Life Care
Leah Rosenberg, MD^a	Palliative care, psychodynamics, education	Massachusetts General Hospital Harvard Medical School
Maria Sirois, PsyD	Existential and positive psychology, mind/body medicine	Independent consultant
Elise Tarbi, PhD, CRNP	Seminar scribe, nursing	University of Pennsylvania
Jennifer Temel, MD	Oncology, research	Massachusetts General Hospital Harvard Medical School

Seminar leader.

Table 2.

Components of the Seminar

Session	Domain	Goals
1	Distress and anxiety with serious illness	Describe the interpersonal aspect of caring for seriously ill patients. Generate hypotheses regarding types of anxiety and distress encountered in palliative care patients. Explore the conceptual bearings and research findings of terror management theory as it relates to existential distress. Consider approaches to patient distress and anxiety that focus on communication nuances, relational attunement, meaning making and legacy work.
2	The holding environment for patients and families	Describe ways the palliative care frame is distinct from traditional psychotherapy and other medical specialties. Consider the ways palliative care creates a unique therapeutic space for patients and families to feel held and contained amid the oscillation of emotions with serious illness. Explore the ways palliative care might facilitate a therapeutic holding environment that supports patients and families finding expression amid ineffable challenges, leading to better psychological integration with life-limiting illness. Consider how therapeutic presence and a “circle of trust” might lead to more adaptive coping.
3	The holding environment for referring clinicians	Consider the ways palliative care might cultivate a therapeutic space for referring providers. Describe the patterns and dynamics between referring providers and palliative care clinicians. Generate a conceptual model of the holding environment as it relates to patients, families, primary providers, palliative care, and a patient's “inner circle.” Describe ways the holding environment can be established within the culture of palliative care, both as a team and individually.
4	Adaptive coping for patients with serious illness	Identify some of the primary psychological skills every palliative care clinicians should acquire. Consider ways effective psychological interventions can be adapted to the palliative care frame. Evaluate divergent concepts and approaches to coping with serious illness. Compare and contrast multiple frameworks for cultivating adaptive coping as a clinician working with seriously ill patients and their families.
5	Implications for clinical delivery, research, and education	Generate possibilities for clinical innovation based on insights from the seminar. Create an education agenda for integrating the seminar's findings into palliative care teaching curriculum. Prioritize research pursuits to advance the inquiries and hypotheses of the seminar. Establish deliverables to best disseminate knowledge from the seminar.

The unique psychological challenge of serious illness

Serious illness often generates intense emotions for which some patients might need specialist help from mental health clinicians. Most often, however, helping patients cope with and integrate these intense emotions fits squarely into the scope of the palliative care clinician. To understand the challenge of serious illness, one psychiatry and palliative care expert commented, “Start with understanding what the patient experiences—loss, uncertainty, dependency, anxiety, grief, and family concerns,” she said, then added that “although such distress is a universal aspect of human life, it holds special relevance for our patients living with serious illness.” For example, patients often struggle with a sense of fragmentation and a lack of continuity with their former healthy self. These losses, and the fear of future losses, can ignite higher levels of distress and anxiety. Such emotions are often overwhelming.

Patients even experience fluctuating feelings about their palliative care experience. In the context of serious illness, it is common for patients to have conflicting internal thoughts about clinicians, particularly regarding their reliance upon them, such as: “I hate that I need to see a palliative care clinician” and “I'm so grateful for my palliative care clinician.”⁸ These complicated feelings arise from the high stakes of the illness and deeply emotional encounters with these clinicians. Seeing the palliative care clinician invokes both real and symbolic reminders of one's mortality.⁹

Aims

The aims of the seminar were (1) to understand the key psychological aspects of palliative care that support adaptive coping in patients and (2) to highlight future clinical, education, and research implications to advance psychologically informed palliative care. What follows is a distillation of the key insights from the seminar as they relate to these two aims.

Understanding key psychological aspects of palliative care that support patients' adaptive coping

Although palliative care is not psychotherapy, it does contain psychological elements. For example, it relies on the relationship between the clinician and the patient and benefits from an empathic connection between them. Clinicians support patients as they grieve for their formerly healthy self. Palliative care clinicians encourage patients to simultaneously hold the opposing ideas of living well while also acknowledging the possibility of dying, and they understand that a patient's baseline coping skills influence their experience of illness. This relationship between the patient and the palliative care clinician can also support the patient's relationship with the oncologist or referring clinician. It can even help the referring clinician to feel more supported in general. Finally, although palliative care clinicians can master the basic psychological concepts to help patients manage their distress, they should also know when to refer patients for specialist mental health care.

Relationships are the therapeutic cornerstone

A psychoanalyst participant emphasized that “relationships matter.” The encounter between a palliative care clinician and patient involves building a relationship that supports the patient who is dealing with serious illness. The multidisciplinary team too is a series of interconnected relationships supporting the patient.

Through their ongoing relationship, the clinician and patient develop a shared understanding of the patient's illness experience. We posit that these relational connections help patients cope more effectively. “Relationships are the arena into which patients' deepest fears and worries can come—when we make it safe. And relationships are the best vehicle for the kind of healing that we are talking about.”

Empathic connection allows for emotional release

Participants suggested that through awareness of psychological needs, empathy, attentiveness, and a nonjudgmental connection from the palliative clinician, patients can begin to identify unmet emotional needs and distressing emotions, leading to better psychological integration.¹⁰

Clinicians support patients as they find ways to recognize these intense emotions and utilize them constructively so patients can remain “whole” or “themselves” amid the intense stressor of life-limiting illness. Over time, palliative care clinicians facilitate a healing alliance between the patient and clinician, where the patient experiences feeling known and understood.

Clinicians support patients through a process of grieving and growth

Serious illness often triggers a series of losses and increasing dependence.¹¹ Palliative care clinicians accompany patients in the process of working through these challenges and provide support for a kind of anticipatory grief work. In turn, this process allows patients to develop more adaptive coping responses, such as meaning making, working on legacy projects, and having important conversations with loved ones.

Palliative care clinicians often begin an initial encounter by asking a patient: “What makes you, you?” or even the more concrete inquiry “How do you spend your time? What do you enjoy when you are feeling like yourself?” By exploring a patient's values and interests, a palliative care clinician can help the patient reimagine what a good or well-spent day would look like in the setting of having a serious illness. Palliative care clinicians support patients through the challenges that illness brings and help them envision remaining engaged in the activities and relationships that matter most. Participants explored the socialization of becoming a patient and how it can often lead individuals away from feeling engaged with the world they knew. A positive psychologist suggested questions that could be woven into the palliative care encounter. First, “Who are you when you are your best or most authentic self?” This could be followed by, “How can you maximize those moments despite the challenge of coping with illness?” These types of questions can be most effective in the outpatient clinic setting.

The dialectic of living well while acknowledging dying is a central theme

One research expert emphasized that it is essential to find ways to support patients in holding these two ideas—living fully while acknowledging dying—during the course of illness.^12–14 Several participants observed that certain patients seem to find meaning, strengthen attachments, heal relationships, tolerate uncertainty, and curate their legacy amid the physical and emotional challenges of serious illness. At the same time, we observe other patients who experience emotional chaos. They seem to be ungrounded and overutilize less adaptive coping strategies, such as denial. The dialectic of living well while acknowledging dying helps patients to balance competing priorities and organize mixed feelings.

Patients' baseline coping strategies strongly impact their illness experience

Several participants also mentioned the importance of considering a patient's attachment style in terms of making sense of their ability to cope with difficulty. If patients offer us a personal history rife with broken and disappointing relationships, this can indicate future interpersonal challenges as they become sicker.

Although most palliative care clinicians are not trained mental health professionals, their therapeutic presence and facility with communication skills optimize patient coping. Clinicians can help the patient “strengthen the muscle” of adaptive coping to encounter the difficult emotional circumstances that can attend progressive serious illness.

One psychologist expert noted, “When you are meeting a patient, there is an ongoing assessment of ‘how has this person lived in this world? Who are they? What is their context? How have they coped with stress and crises in the past?’” Based on this assessment, or formulation, clinicians can identify and support the patient's current coping skills while suggesting new skills that will be necessary as the illness progresses. The expert added, “How are we going to support them so they still feel connected and engaged in this world for as long as possible? The repertoire is going to be expanded over time through that dance of grief and compensation.” Another participant remarked on the importance of multiple coping strategies, “A patient who copes exclusively by running is going to struggle to cope when exercise is no longer possible.”

The clinician–patient relationship needs to be resilient

At times, the palliative clinician may assume or suggest incorrect things about the patient's emotional world. If the clinical relationship is to be therapeutic, clinicians must be able to talk about the moments that miss the mark and seek again to find a safe contained connection. One palliative care physician emphasized that “We [palliative care clinicians] personify loss and grief. The challenge is being able to come back. Not getting fired. As we represent palliative care, and dying and getting sicker, therefore, the challenge is being able to stay in the room and being able to build enough rapport as we personify those deep fears. And the patient is learning to adapt to me and to that idea. That feels like [what happens] in the room.”

Palliative care support extends to referring clinicians

Research has shown that palliative care is associated with better psychological outcomes for patients and families.^1–3 However, it is rarely discussed how palliative care might provide value to referring clinicians. One psychologist expert commented that “empathy and mutual recognition created with the palliative care team can generalize to share the burden and ‘emotional weight’ of these complex and difficult cases.”

Participants described how the presence of palliative care allows referring clinicians to feel more supported as they care for patients with incurable illness. Palliative care's presence allows providers to safely experience the vulnerability and uncertainty of caring for those with serious illness and provides a vital space to process the care of the patient.

Specifically, palliative care's presence can create opportunities for a “second look” by primary clinicians. With a sense of genuine curiosity and exploration, palliative care consultants frequently ask referrers to consider what the prognosis might be or best–worst case scenarios. One psychologist and educator commented that “The concept of a ‘second look’ is an idea that you get fixed at looking at a case in a particular way. The relationship between the palliative care clinician and a referring clinician creates the opportunity for a revised perspective.” This may empower referrers to see patient outcomes in a new light. For example, an oncologist participant recalled a case when the primary team was grappling with the reality that their patient was dying in the intensive care unit. They had hoped the patient would have a more peaceful end of life. When a palliative care clinician observed that the patient's understanding of “doing everything” made dying in the ICU almost inevitable, the oncology team's distress was palpably reduced. Having an extra set of eyes on an emotionally difficult case can provide great benefit to a primary team.

Palliative care supports the relationship between the patient and the referring clinician

Palliative care involvement can also support the relationship between the patient and referring provider. Clinicians do this by creating a supportive and nonjudgmental space for patients to manage the losses that come with serious illness. One psychologist researcher remarked that palliative care interventions can “allow a patient to feel the loss and to process it without filtering any of their concerns. And then, when there is a bit more stability, we can pivot and talk about: ‘well, what do we do now?’ Because they are alive. They are alive with this illness. And so how do they live now with this illness? These are not mutually exclusive conversations. They happen in tandem, and we flow between them.” This “in-between space” holds both the referring provider and palliative clinician in the flow of helping the patient live well while encountering the possibility of dying. This space equips patients with the emotional stability to engage with their primary providers around important treatment decisions.

The mere presence of palliative care clinicians can alter the type of discourse between the referring provider and patient. For example, two oncologist participants noticed that the presence of palliative care in a clinical encounter changes their routine dynamic with a patient and may allow for a different type of conversation with the patient in which emotionally laden topics such as prognosis or goals of care are addressed.

Collaboration with specialist mental health care is essential

The seminar explored the importance of collaboration between palliative care and mental health colleagues. This collaboration is analogous to other generalist–specialist collaborations already well known within medicine. For example, primary care clinicians must master primary management of hypertension yet also discern when it becomes appropriate and necessary to refer a patient with refractory hypertension to a cardiologist for specialized care. Similarly, palliative care clinicians can master the basic psychological concepts necessary to address the high prevalence of distress in seriously ill patients. At the same time, palliative care clinicians should know when a patient needs specialist care. Mental health clinicians are essential for seriously ill patients dealing with comorbid mental illness, active psychiatric symptoms, or poor coping abilities influencing their quality of life or their ability to engage with care.

Highlighting future clinical, education, and research implications

Clinical directions

Palliative care clinicians are already experienced in basic supportive skills such as holding a nonjudgmental stance, active listening, offering warmth, rapport building, showing empathy, and supportive counseling. And yet, our seminar established that there are more psychological aspects that could be incorporated into clinical care.

What we still need is a psychologically informed approach, including principles related to the frame of the relationship and the formulation of the patient, as well as a deeper understanding of psychological concepts such as transference, counter-transference, and attachment theory. A better understanding of these more complex concepts will reinforce palliative care clinicians' skills when cultivating a therapeutic relationship and bolstering adaptive coping. Imbuing palliative care practice with a more explicit psychological orientation would build the clinician's capacities and offer an opportunity for deepened engagement. Participants posited that increasing attention to the psychological complexities of patient care also would lead to more professional satisfaction and reduced burnout.

Educational directions

Palliative care learners at all levels need a toolbox of manageable psychological concepts. Many of our existing interventions, such as serious illness communication guides, already have integrated particular psychological skills—such as engaging with difficult topics, empathic connection, and balancing hope and worry (the dialectic of living well while acknowledging dying).

Participants emphasized that creating a toolbox with defined psychological skills would enable trainees to deepen their encounters and focus their communication techniques based on a more nuanced psychological understanding. We believe that experiential learning should be foundational—involving role play, debriefing, and verbal reflective exercises. We discussed possibilities such as in-services, retreats, intensives, and workshops.

Research directions

Participants identified key areas that would benefit from further investigation. One important area was the development of ways to identify patients who would benefit from subspecialty palliative care or mental health consultation as opposed to general primary palliative care practiced by primary care clinicians, internists, oncologists, and others. A clinician-researcher observed that “there is substantial variation regarding what psychologically-informed palliative care means” and mused that it would be fascinating to know more. Finally, we discussed how a psychologically rich approach may mitigate barriers to palliative care among historically underserved racial and ethnic groups. This approach would heighten awareness of the relationship between clinician and patient, which could foster more trust. It is possible that individuals with chronic mental illness or high levels of religious observance may benefit from a more nuanced approach integrating psychological factors, as these are two groups that often access palliative care and hospice at suboptimal rates.

Next steps: A deeper exploration of the psychological aspects of palliative care through a planned series

During the fall and winter of 2021–2022, selected members of the participant group will publish a series of articles in the Journal of Palliative Medicine dedicated to a fuller exploration of psychologically rich palliative care. As a psychoanalyst participant noted, “Much of the psychological landscape of palliative care is replete with unseen features that nevertheless powerfully shape the paths taken and the decisions made.” The limitations of this initial exploratory seminar include a lack of geographic as well as racial and socioeconomic diversity. The waves of societal change over the past two years have opened our eyes to the necessity and urgency of inclusion. In the future, we will highlight a variety of crucial voices in the discussion and hope that illuminating this landscape will enhance our field and orient us to new and fruitful directions.

Footnotes

Authors' Contributions

All listed authors have made substantial contributions to the conception or design of the study; or the acquisition, analysis, or interpretation of data for the study; drafted the study or revising it critically for important intellectual content; approved the final version to be published; and agreed to be accountable for all aspects of the study in ensuring that questions related to the accuracy or integrity of any part of the study are appropriately investigated and resolved.

Funding Information

This study was funded by an exploratory seminar grant from the Radcliffe Institute for Advanced Study at Harvard University, 2019.

Author Disclosure Statement

No competing financial interests exist.

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