Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience

Abstract

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

Introduction

Existential awareness provides depth, richness, and meaning to our existence as humans (Table 1). In the dominant biomedical paradigm, tending to this aspect of personhood is often overlooked (Table 1). An exclusively biomedical approach to health care can dilute the humanity of both patients and clinicians. According to psychiatrist Irvin Yalom, “Death is the condition that makes it possible for us to live life in an authentic fashion” (p. 31).¹ This statement reflects a key tenet of existential psychology: Awareness of death is embedded in who we are and this life-death tension has the potential to be both a source of great despair and profound meaning.²

Table 1.

Key Concepts, Definitions, and Illustrative Examples

Concept	Definition	Illustration
Existentialism	Existentialism reflects a deeper understanding of mortality; an increasing appreciation and clarity about the reality and inevitability of death.^18,89,90	A statement from the perspective of a person living with serious illness: “I know people say (…) you could cross the street and be run over by a bus. But you live your life not thinking about it. I have to deal with it. My bus is here. All the time.”⁹¹ (p. 420). First-person accounts of existential experience and care by coauthor Adam Hayden: “Many think, mistakenly, by my judgment, that a life-limiting diagnosis affords an opportunity to sort out priorities and pursue ‘what matters most.’ Throw all caution to the wind and follow those forgotten dreams. For many, physical impairment, cognitive deficit, decreased life expectancy, and financial toxicity limit the pursuit of new or revised priorities and mythologized bucket lists. What is different is the perspective that must be adopted. You still must do the laundry, but you fold the shirts with acute knowledge of your own mortality.”²¹ From the perspective of a care partner this may sound like: “I think…one wants to find good things from all this because otherwise it is too terrible. So when I have to talk about it, I say that I became aware of the fragility of life, I try to draw what I can from this unfortunate situation.”⁹² (p. 1616)
Biomedical Model	The biomedical model prioritizes clinically ascertainable factors in search of diagnosis and treatment, while creating barriers to sharing and documenting individual narrative. Yet, this narrative is a deep-seated component of an individual's identity, and this narrative identity is essential for discovering aspects of care that may not emerge under usual history taking.⁹³	First-person accounts of existential experience and care by coauthor Adam Hayden: “‘I'm his wife, not his therapist.’ My spouse is an inpatient occupational therapist (OT) at our county hospital, a level one trauma center and one of the local teaching hospitals. My spouse has served as a supervisor to many occupational therapy students completing their clinical rotations, and so, visiting me on the locked brain trauma unit at the rehab hospital, she had to find a way to cleave her identity and expertise as an experienced OT from her identity as my loving spouse and mother to our three kids whose husband was just diagnosed with brain cancer.”
Existential Experience	Existential experience can be understood as a continuum, encompassing existential suffering as well as growth, marked by mixed and fluctuating thoughts and feelings. It encompasses the myriad concerns that arise when an individual confronts the boundaries of life and renegotiates their understanding of the self, life, and death.¹⁸ Yalom outlined fundamental existential challenges related to: (1) mortality/finitude, (2) freedom/control, (3) isolation/connection, and (4) meaning/meaninglessness.¹	Statements from individuals with serious illness may reflect ambivalence and dynamic oscillation between extremes: “Days when I've felt that I won't get better; this is totally meaningless, why should I be tortured when I'm not going to get better anyway. Then a couple days go by, and I've started thinking, ‘Well, of course I'm going to get better.’”¹⁹ (p. 272) In conversation, this may look like navigating existential challenges, e.g., questions of isolation and connection: Patient: “You know, I'm, instead of having 20-odd more years here I'm gonna go and be with my father and my younger brother and grandparents and all those people that I love and which is perhaps a little selfish of me, to think that I deserve to stay around longer.”⁵⁷ (p. 9)
Existential Suffering	Existential suffering results from being unable to cope with stressors that challenge fundamental expectations about human life, such as assumptions about freedom and control.¹ It is characterized by distressing thoughts and emotions, including feelings of hopelessness, loss of meaning and dignity, fear of being a burden and dying, or even profound demoralization.³	From the perspective of a care partner this may sound like: “Yeah, when we [realized] that there was nothing to do just wait until [death] […] Everything seemed completely […] I don't know. It's like…why? What's the point? What's the whole point anyway?”⁹² (p. 1616) In conversation, this may look like: Clinician: “What's important to you at this point?” Patient: “I don't know. It sure ain't the value of living.”⁵⁷ (p. 4)
Patient Lifeworld	There are two voices in clinical encounters: the voice of medicine and the voice of the lifeworld, or the individual's everyday experience. The voice of medicine is high-control and seeks to situate the encounter within technical requirements. Often the voice of medicine de-emphasizes patient concerns. The voice of the lifeworld is experiential and concerns everyday life, as experienced through the lens of the world presented to the individual.^94,95	First-person accounts of existential experience and care by coauthor Adam Hayden: “Following an awake craniotomy and surgical resection of my 71 mm medial right parietal lobe primary brain tumor, I became oriented in the neuro-intensive care unit, while nurses scrubbed my body and transferred me from the gurney onto the bed. It's not clear when I realized that the left side of my body was paralyzed, but this was a risk that the surgeon disclosed to me during the awake procedure. Moving my limp left arm with the use of my functional right arm, I greeted the neurosurgeon with distress. Asking me to wiggle the toes on my left foot, seeing at least some movement, he exclaimed, ‘If you can move it, we can get it better!’”
Existential Growth	Existential growth occurs when an individual faces mortality or other fundamental stressors associated with a life-threatening illness and integrates them within the rest of his or her life,¹⁸ and is also described as existential maturity.²⁰ It is characterized by meaning making, appreciation for daily life, increased fulfillment, a sense of connectedness, and moving toward a feeling of wholeness.⁹⁶	First-person accounts of existential experience and care by coauthor Adam Hayden: “I am often asked how I managed to accept my terminal diagnosis. I often reply, ‘You assume that I have?’ But the more authentic response is that by learning to walk again, to bathe independently, to feed myself, to toilet without assistance… by orienting my life toward achieving functional goals, I bracketed the diagnosis and found well-being in the pursuit of healing.”²¹ A statement from the perspective of a person living with serious illness: “Yes, you take charge of it. I think something good can come from this, that I've grown as a person too. I have a completely different awareness now.”⁹⁷ (p. 6) From the perspective of a care partner this may sound like: “Well […] It made me more human in a way […] like a better version of myself […] more compassionate […] [and] sensitive.”⁹² (p. 1617)
Individual and Care Partner Congruity and Incongruity of Experience	Individuals undergoing treatment or experiencing survivorship report the subjective experience of illness differently than care partners. Clinicians must hold space for both the individual with illness and the partner caring with the individual when delivering optimal care, in times where their experiences overlap as well as when they diverge.	First-person accounts of existential experience and care by coauthor Adam Hayden: “I see my spouse experience the symptoms of ‘scanxiety’, a term in the patient population generated to describe the anxiety prior to imaging protocols, more so than I experience. She is more concerned with my independence to stay home alone while she works outside the home and the kids are at school. Her allostatic load⁹⁸ has increased and associated health markers have worsened beyond what I would report for myself. The joke in our home is that, ‘I'm the one with brain cancer but I'm the healthiest one in the house.’ This is a joke only insofar as the individual and caregiver experiences are incongruent in response to serious illness.”

First-person narratives reflect the experience of coauthor Adam Hayden, who is living with brain cancer; other examples stem from the literature.

While we may know that we will die, diagnosis with a serious illness can heighten an individual's sense of fragility about life and the inevitability of death, increasing the urgency to answer pressing questions about existence, such as “Who am I now” and “why am I here?” (p. 606).^3,4 These questions are existential in nature, and many people with serious illness look to their clinical team for help in navigating them.⁵ They often arise during the “2 a.m. moment,” when clinician and patient meet human-to-human in solidarity, amid the competing priorities of clinical care.⁶ How we respond in these formative moments can shape a person's trajectory of living and dying. Supporting existential well-being promotes improved quality of life (QoL).⁷ Existential care is emphasized in the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, spanning psychological/psychiatric and spiritual aspects of care (Domains 3 and 5, respectively), highlighting the breadth and complexity of this experience.⁸ While social workers and chaplains are the identified specialists in these domains and can be looked to for guidance and follow-up care in these areas, the guidelines also outline existential care as a responsibility of all clinicians.⁸

Many PC clinicians face barriers to delivering existential care including difficulty identifying existential needs, and a lack of time and training to address them.^9–11 We provide 10 tips to assist PC clinicians to collaborate as an interdisciplinary team (IDT) to attend to the existential experience of persons with serious illness and their care partners (Table 2).^* We also urge the development and dissemination of systemic approaches to existential care that include integrating existential care knowledge throughout health professional curricula and training, advancing research to understand and attend to existential experience, and shifting institutional culture to recognize existential experiences as a barometer for quality.¹²

Table 2.

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience

Top ten tips
1. Existential needs are common but insufficiently recognized and undertreated.
2. The existential experience exists on a spectrum from suffering to openness and joy—clinicians can foster existential growth along this spectrum.
3. Salient moments during the illness experience can activate existential questions and crises and are important touchpoints for intervention.
4. Whole-person palliative care requires a broad understanding of quality of life, including its existential dimensions.
5. Identifying existential needs is essential to guide prognostic awareness and clinical decision making.
6. Holistic interventions can help clinicians attend to patients' existential experiences and can be integrated throughout all types of clinical care.
7. Clinicians can use existing communication skills to explore the existential experience.
8. Patients benefit from the expertise of all members of the interdisciplinary team when navigating existential experiences.
9. Existential matters are rarely experienced by the individual alone.
10. When we explore our own existential experience, we can find ways to hold space for our own distress (which may also resonate with patients).

Tip 1: Existential Needs Are Common but Insufficiently Recognized and Undertreated

Human beings' awareness of our own vast, fragile, and finite existence can evoke fundamental existential needs (Table 1). Yalom emphasized four key existential challenges related to: (1) mortality/finitude, (2) freedom/control, (3) isolation/connection, and (4) meaning/meaninglessness.¹ To manage these concerns, some depend on cultural worldviews that confer a sense that we are valuable participants in a world of meaning (e.g., belief in an afterlife). Serious illness may threaten to undermine this fabric of meaning, eroding self-esteem and destabilizing close relationships.¹³ Debilitating existential suffering may arise related to the inevitability and uncontrollability of death; responsibility for our choices despite limited freedom by biological, cultural, and historical constraints; feeling isolated and inconsequential in an unfathomably large universe impervious to our concerns; and the prospect that life is rendered devoid of purpose and meaning.¹

Existential suffering is characterized by distressing thoughts and emotions, including feelings of hopelessness, loss of meaning, or profound demoralization (Table 1).³ Between 13% and 18% of people with serious illness experience clinically significant existential suffering that can exacerbate physical symptoms and psychological distress, and prompt a desire for death.^14,15 These existential needs often go under-recognized or unaddressed in a biomedical model where, “the practitioner reconfigures the patient's and family's illness problems as narrow technical issues…” (p. 5).¹⁶ This existential oversight can exacerbate patient suffering.¹⁷ There are various clinician-centered and system-level barriers (e.g., inadequate institutional support/resources) to addressing patients' existential concerns.⁹ Accounting for illness experience amidst the technical characterization urged by the biomedical model is central to existential care.

Tip 2: The Existential Experience Exists on a Spectrum from Suffering to Openness and Joy—Clinicians Can Foster Existential Growth Along This Spectrum

Existential experiences span a broad spectrum, from distressing (e.g., hopelessness, suffering) to neutral (e.g., ambivalence) to enriching (e.g., openness, joy).¹⁸ People experience this spectrum dynamically—oscillating between states or even holding two states simultaneously; this may sound similar to “I'm secure and hopeful and insecure and not hopeful, all at the same time” (p. 273).¹⁹ Understanding the full spectrum of existential experiences and the dynamic way individuals express them promotes existential exploration and opportunities to support existential growth or maturity (Table 1).²⁰

PC clinicians are adept at creating empathic and grounded “transitional spaces” where their patients can safely explore the depths of their fears.²⁰ A strength-based approach—drawing on an individual's inner strengths and outer resources to allow for maximal functioning within limitations—can foster existential growth in these transitional spaces (Table 3).²¹ This approach is especially valuable where the deficit-based biomedical model fails. We can also hold space for dynamic oscillations, and acknowledge suffering while promoting growth, “We want to make sure that we acknowledge your suffering, help you to work with it, and do our best to lessen it when possible. We also want to give you and your family encouragement to enjoy the time that you have and find opportunities for joy, love, and meaning when possible” (p. 1324).²²

Table 3.

Approaches to Support Existential Strengths

Existential strengths (with definition and approach)	Example practices encouraging existential reflection and expression
Meaning: “Understanding and feeling what is truly significant.” (p. 3) Help individuals and care partners find significance through: • Maintaining normalcy • Experiencing sanctuaries (i.e., finding places or activities of comfort where one can seek refuge from daily pressures). • Reassessing importance • Reconstructing a positive self (i.e., recreating a positive understanding of who one is)	• Encourage daily routines. • Establish activities/roles the person with serious illness can still participate in regularly and facilitate the continuation of those. • Help individuals consider spaces or activities where they can seek refuge from daily pressures, such as in nature through gardening or a decorated space in their home. • Ask people about what has been—and what is—most important to them in their lives, what important roles they have held, and what they feel most proud of. • Provide opportunities for individuals to create or assemble items to pass on to significant others, such as a diary, book, collage, or recording.
Connection: The real or imagined existence of shared positive sentiment with others. Connections can build by sharing positive feelings through: • Opening up • Giving/receiving care • Envisioning continuation across generations, a legacy	• Encourage persons with serious illness to share their worries, cherished memories, emotions, and beliefs with those close to them. • Help individuals maintain the ways they provide and receive care, to and from others. • Ask people about the wisdom, lessons, and traditions they hope to impart to future generations.
Agency: “Experiencing a capacity to act.” (p. 6) Individuals and care partners can build agency through: • Maintaining control • Refocusing goals • Continuous adaptation	• Continuously provide a sense of choice in care decisions and planning, which enhances control and responsibility. • Support people with serious illness in exploring past experiences in overcoming adversity. • Help individuals establish realistic, short-term goals. • Assess current, ongoing strengths.
Hope: “Having a positive perspective on the possibilities of the future.” (p. 7) Individuals and care partners can form an optimistic future perspective through: • Setting special targets • Imagining alternate outcomes • Building a collection • Extending wishes	• Identify special targets of significance that individuals with serious illness are looking forward to, for example, a visit from an out-of-town family member or an upcoming birth. • Suggest individuals identify and collect symbols that give them hope—poems, writings, pictures, photographs, and music. • Encourage people to think about and share their wishes about the future for their loved ones.
Faith: “Placing trust in the supernatural and honoring it.” (p. 7) Individuals and care partners can rely on the supernatural through: • Connecting with and adhering to a spiritual or religious tradition • Relating to the goodwill of others	• Invite and honor spiritual or religious traditions. • Support explorations of relating personal relationships, or even relationships to the care professional, as one connected with spirituality or a higher power (e.g., referencing their clinician as an “angel” or “sent by God”).

Adapted from Haufe et al.⁵⁴

Tip 3: Salient Moments During the Illness Experience Can Activate Existential Questions and Crises and Are Important Touchpoints for Intervention

Loss of meaning, disconnection, and lack of desired choices or freedom during salient moments in the illness experience can precipitate existential questioning or crisis. Salient moments may be those that spotlight, or bring attention to, aspects of living with serious illness.²³ For instance, diagnosis with serious illness, when people face their own mortality, can disrupt their sense of time and self.²⁴ Talking about prognosis can raise questions about dying and other existential concerns.²⁵ Also, care transitions, such as hospitalizations or electing hospice, can spotlight the realities of living with advancing disease, such as changes in function and independence.²⁶

Physical, psychological, and existential dimensions of human suffering often overlap. Heavier physical symptom burden is associated with lower existential QoL, demonstrating the need for existential relief when physical suffering intensifies.²⁷ Demoralization, a severe manifestation of existential distress, can coexist with, and be mistaken for, depression.^14,28 However, knowing how to delineate the two can guide appropriate treatment. Demoralization is characterized by profound helplessness or hopelessness resulting from loss of meaning and purpose, while depression is characterized by an inability to experience pleasure.²⁸ Integrating existential distress screening tools (e.g., Psycho-Existential Symptom Assessment Scale [PeSAS]), can be helpful in practice,²⁹ as can listening to cues in regular conversation (see Tip 7). Persons with serious illness can benefit from existential interventions when these touchpoints arise in the care trajectory (see Tip 6).³⁰

Tip 4: Whole-Person PC Requires a Broad Understanding of QoL, Including Its Existential Dimensions

PC clinicians recognize that addressing a person's existential questions and concerns is equally important to addressing physical symptoms.³¹ Holistic existential care includes addressing meaning and purpose, relationships and communication, personal values and autonomy, and spirituality and the human experience. PC clinicians address the existential dimension of QoL to help individuals and care partners find comfort, meaning, and a sense of dignity. We may encourage open and honest communication between patients, their care partners, and clinicians, fostering a sense of connection and understanding. We may attend to patients' spiritual and religious needs and offer support as per their individual beliefs. We may also empower individuals to make care decisions that align with their values and preferences.

While existential suffering is one of the most challenging experiences we can encounter, all PC clinicians can cultivate this skill to accompany people through moments of existential distress. Attending to this suffering requires intensive caring, which includes therapeutic humility and a shift away from the traditional paradigm of examining, diagnosing, and fixing to, instead, focus on the question, “Who is this person?” and attempt to understand the nature of their suffering while providing comfort and genuine accompaniment.^32,33

Tip 5: Identifying Existential Needs Is Essential to Guide Prognostic Awareness and Clinical Decision Making

Typical health care visits are disease, medical, or pragmatically oriented. During a PC encounter, we may ask, “Where are you in all of this” or “what is helping you get through this?” The nature of these questions alerts the individual to the idea that we are asking about the “who” and the “why” of the illness experience, in addition to the “what” and the “how” questions that may shed light on the symptoms or plans for treatment.³ These questions emphasize the person at the center of the clinical scenario, helping PC clinicians to holistically approach prognostic awareness and clinical decision making.

As rapport and connection are built between patient and clinician, these conversations often deepen.³⁴ When exploring a person's prognostic awareness, remember that even a wishful hope to celebrate a family milestone or holiday is not simply a matter of logistics—they may be fundamental to a person's evolving vision for a particular future.³⁵ Planning for the future “isn't just a practical task; it is an existential one” (p. 306).³⁶ We may therefore understand a patient's disagreement with prognostic information not as denial necessarily, but as part of the adaptation to new illness-related and existential realities.³⁷

People with serious illness often reconfigure their hoped-for futures in the context of changing medical realities. This process of creating meaning is an expression of their autonomy as well as cultural, social, and religious or spiritual differences in decision making. Meaning may also be achieved through rejection of these new realities and of PC in general. PC clinicians can hold space for both rejection and acceptance as part of an individual or relational process. When we understand what matters most, we can better frame an individual's medical choices based on their goals and values. We can support people by listening deeply, using silence and empathic presence,³⁸ and allowing each person the time he or she needs to process his or her experiences (see Tip 6 and 7 for additional approaches).

Tip 6: Holistic Interventions Can Help Clinicians Attend to Patients' Existential Experiences and Can Be Integrated Throughout All Types of Clinical Care

Specialized interventions have been developed and tested to support persons with serious illness and care partners navigating existential concerns, such as searching for meaning or understanding death as a part of living.^39–41 Interventions include meaning-centered therapies (i.e., dignity therapy,^42,43 meaning and purpose therapy [MaP],^44,45 managing cancer and living meaningfully [CALM],⁴⁶ and meaning-centered psychotherapy [MCP]),³⁹ narrative therapies and practices (i.e., digital storytelling, life review, and reminiscence therapy),⁴⁷ as well as emerging psychedelic-assisted therapies.^48–52

While many patients and their care partners benefit from these specialized interventions and should be referred as appropriate and available, all PC clinicians can foster existential considerations and strengths in daily encounters. Incorporating spiritual and psychosocial screening questions across PC visits is one method for facilitating attention to existential considerations (e.g., the Patient Dignity Inventory).⁵³ In addition, key existential strengths identified in the literature—meaning, connection, agency, hope, and faith—can guide us to adopt practices that encourage existential expression or reflection (Table 3).⁵⁴ Finally, the act of bearing witness, creating nonjudgmental and psychologically safe spaces for individuals and care partners to share their suffering and experience, and supporting this expression as a natural process is, in and of itself, therapeutic.⁵⁵

Tip 7: Clinicians Can Use Existing Communication Skills to Explore the Existential Experience

Clinicians often express discomfort with understanding and addressing patient and care partner existential concerns.⁹ This can lead to inadvertent neglect of existential experiences, potentially exacerbating suffering. PC clinicians are communication experts with training, experience, and tools to engage in challenging and important conversations. Yet, the overarching health care ecosystem prioritizes the physical and objective over the intangible or subjective.⁵⁶

Communication about existential experiences is present in daily PC conversations.⁵⁷ Overt cues of existential exploration include comments or questions surrounding meaning and purpose (“Why is this happening?”), identity (“He just doesn't seem like himself.”), belonging and isolation (“I'm alone, with no one to talk to.”), and considerations about death and dying (“How is she going to die?”). Cues may also be subtle, with existential hopes and fears intermingled with routine discussion of symptoms, tests, and treatments (e.g., “I hoped it would get better…less pain and things…but that didn't work out yet” p. 2024⁵⁸).

We can leverage existing communication skills to recognize and respond to existential experiences.⁵⁹ This involves first contending with desires to “fix” suffering rather than accompanying our patient's existential distress. Committing to nonabandonment and nonjudgment creates a safe space to explore existential questions that may have no answer.³³ Specific communication techniques include familiar tools (e.g., NURSE mnemonic—Name, Understand, Respect, Support, Explore) when existential concerns arise.⁶⁰ We can probe for existential needs using evidence-based questions such as the Patient Dignity Question, “What do I need to know about you as a person to give you the best care possible?”^61,62 as well as providing the opportunity to expand on what gives people strength and meaning, “What do you enjoy when you are feeling like yourself?”⁶³

Tip 8: Patients Benefit from the Expertise of All Members of the IDT When Navigating Existential Experiences

PC clinicians possess a shared passion toward increasing QoL and reducing suffering for persons with serious illness encountering physical, psychosocial, spiritual, or existential challenges.⁶⁴ While chaplains, social workers, and psychologists report existential care as an integral focus of their specialist roles in PC,^65–67 all PC clinicians have a responsibility to be generalists across domains, attending to and accompanying individuals and their care partners through this facet of their experiences.

The IDT is an essential feature of PC.⁸ Each expert clinician brings skills and perspectives from their specific training, and together, team members partner to address all aspects of PC.⁸ For instance, the bedside nurse might assess existential distress in the early morning hours when the person is processing the serious prognostic news that their oncologist shared earlier in the day. As the nurse provides emotional support and empathic understanding in the context of an acute hospitalization, the nurse's partnership with the PC social worker might leverage both therapeutic interventions and logistical planning from the social worker's lens. In another instance, the outpatient physician seeing a person with strong religious beliefs in a crisis characterized by severe pain and a desire for hastened death might coordinate a visit with the chaplain to ensure the integration of spiritual needs and beliefs into care planning and decision making.

Because collaboration requires problem solving and ideal team configuration,⁶⁸ interprofessional training^69,70 is necessary to understand differences and complementary skills to optimize care for each person with serious illness.⁷¹

For each PC team member or partnering clinician, every touchpoint with a patient requires a person-centered approach.⁷² This approach facilitates honoring how an individual wants to be known and prefers to receive care⁷³ as well as how the dignity of each person can be supported by each of us.⁶¹ Whether IDT members offer dignity therapy⁴³ or five extra minutes of listening in the course of routine care, we cultivate knowledge regarding how a person understands the current situation, to whom the person is connected, and how a person is making sense of serious illness.⁵⁷ The IDT team collaboratively provides a comprehensive assessment assembled with and for each individual.⁸

Tip 9: Existential Matters Are Rarely Experienced by the Individual Alone

With a keen awareness of interpersonal dynamics between individuals and care partners (biological and/or chosen), clinicians are better equipped to attend to the existential experience. We might consider how serious illness alters relationships, potentially surfacing conflict or meaning-making among care partners. Attending to relationships may promote existential growth or maturity, which can be developed, but “formulaic interventions will likely be effective only if they incorporate the person's own experience, needs, and relationships”(p. 326).²⁰ We can recognize that health care structures and processes may ease or hinder relationships important to seriously ill persons (Table 1).^74,75 Acknowledging and intentionally recentering historically disenfranchised relationships (e.g., adolescents' friends, LGBTQIA+ partners) uphold equitable existential care.^76–78

Relationships unite people with shifting priorities. Existential care requires holding space for individual and care partner experiences as they proceed along independent existential trajectories that, while interacting, may differ (Table 1). Comparing individual and care partner accounts often illuminates “…conflicting beliefs … which influences the caregiver's ability to report patient's symptoms” (p. 5036).^79,80 Perspective taking may help both clinicians and care partners consider the illness through another's eyes. As illness progresses, inevitably existentially transforming those it impacts, helping honor present, changing, and future identities can be therapeutic. For example, helping gently commemorate the short life of a dying newborn along with their parents' evolving identities.⁸¹ Clinicians may also guide care partners to reconstruct a cherished relationship with loved ones beyond their ability to eat, to talk, and even after their death.⁸²

Tip 10: When Clinicians Explore Our Own Existential Experience, We Can Find Ways to Hold Space for Our Own Distress (Which May Also Resonate With Patients)

Providing care to individuals facing serious illness regularly places us in close proximity to death, an event that is both normative for all and traumatic for some. Dying frequently involves suffering that can be physical, emotional, psychological, or spiritual. It is challenging to be present with these shared human experiences that we are unable to “fix.” Both over- and under-engagement with suffering can lead to burnout or moral distress.⁸³

Clinical training frequently emphasizes skills such as communication or medication management; the skill of learning to sit with tremendous existential suffering, however, is a practice that can be developed and strengthened over time. This practice can be cultivated in many intentional ways, from regular introspection into one's own lived experience of suffering to engaging in routine acts of self-care. This may take different forms for different clinicians, be it a contemplative practice, psychotherapy, or regular connection with trusted colleagues to share the impact of caring for the dying.⁸⁴ Within a single clinician, our self-care needs may shift or evolve over time, warranting ongoing reassessment. Beyond clinicians' relationship with self, which is so crucial to existential capacity development, health systems must also take accountability for dismantling biomedical structures that obscure the human experience to alleviate clinician distress.

In a broad medical culture that emphasizes fixes, cures, and alterations, the “simple” act of witnessing a patient's experience and empathizing with his or her suffering may, at times, feel frivolous or inconsequential. Ultimately, however, it is an act of great meaning that allows us to compassionately experience humanity more fully and to shepherd the memory of our patients forward. For many, this act is at the core of PC and of what it means to be human.

Conclusion

Existential care is foundational to high-quality PC. The above tips can empower PC clinicians to recognize the full spectrum of existential experience and use existing communication skills and holistic interventions as a dynamic IDT to support persons with serious illness and their care partners. Within attending to existential experiences, there are opportunities for fostering existential growth and maturity, not only for the people we serve but also for ourselves, in the process of providing whole-person PC.

Nevertheless, while this article recognizes PC clinicians as having relevant expertise in supporting patients' existential experience, the systemic barriers we face in providing existential care may leave patients' needs unmet.⁸⁵ While urging systemic change, one tangible daily practice we can engage in to shift institutional culture is to mirror in the electronic health record our commitment to attending to this important domain of care—contributing rich existential details regarding a person's values, meanings, and colorful idiosyncratic narratives throughout the course of care.^86–88 This, and other daily practices of existential care,²¹ provides vital information that can inform decision making and treatment planning, as well as centers new ways of caring that can amplify and spread.

Funding Information

No funding was received for this article.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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