Intensive caring offers a way of addressing suffering designed to better meet the needs of patients and families.
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SPECIAL REPORT: DEATH & DYING
Patients approaching death experience many losses, including losing a sense of self.1 This is perhaps one of the most substantive existential challenges dying patients face, as they find the essence of who they are—along with who they were or who they want to be—under assault. This notion of disintegration2 or fractured sense of personhood3 often lies at the heart of human suffering, which Eric Cassell, MD, MACP, defined as a person’s severe distress at a threat to their personal integrity. Although suffering can often lead to feelings of hopelessness and therapeutic nihilism4 for patients and health care professionals, it is important for those of us who care for the dying to understand the nature of suffering and how to be most responsive and therapeutically effective.
Tenets of Intensive Caring
Table. Elements of Intensive Caring5
An approach coined intensive caring offers an empirically informed way of responding to suffering, which can be used to guide clinical practice (see Table).5 The first tenet of intensive caring is nonabandonment. Health care professionals are inclined to withdraw from clinical encounters they anticipate will leave them feeling ineffective or therapeutically impotent. There is good evidence that abandonment renders patients more vulnerable to desire for death and even overt suicidality.6,7 This affirms the assertion by Dame Cicely Saunders, founder of the modern hospice movement, that “suffering is intolerable when nobody cares.”8 Nonabandonment assures patients they will be accompanied, no matter what course their illness follows, until the end.
A steadfast connection with patients goes hand in hand with the next tenet of intensive caring: taking an interest in who they are as individuals. Doing so affirms that they are more than their illness and that who they are as individuals is recognized and appreciated. This aligns with the work of Robert Butler, MD, and his research on reminiscence in older adults.9 Engaging individuals in telling their stories and allowing them to give voice to what matters to them provides benefits in multiple ways. It demonstrates another person values them and cares about their unique history and perspective; it affirms, despite their despair, that someone sees them as having continued worth; it fulfills possible generativity needs, knowing another person will carry their memory into a future of which they will not be a part10; it gives them a safe and reflective space to integrate and share their life story within a cohesive and meaningful narrative. According to Erik H. Erikson, failure to achieve this late-life developmental goal is a harbinger of despair.11
Placing personhood on the clinical radar can be achieved in multiple ways, including by using the Patient Dignity Question (PDQ), which asks, “What do I need to know about you as a person to take the best care of you possible?”12 Multiple studies in various practice settings (eg, palliative care, patient oncology, rural hospice) demonstrate the utility of this approach and how summaries of these short conversations, when placed on the patient’s chart, enhance a sense of empathy, respect, and connectedness between patients and their health care professionals, correlating with enhanced job satisfaction for those who avail themselves of these summaries focused on personhood.12-14 The PDQ appears to be highly valued by patients and families, and helps health care professionals clarify goals of care.13
Sidney Zisook, MD
Treating Prolonged Grief Disorder: Innovations and Future Directions
Daniella Spencer-Laitt, MA; Henry A. Willis, PhD; Natalia Skritskaya, PhD; M. Katherine Shear, MD
Guidelines for Supporting the Dying and Their Families
Ken Druck, PhD
CME: End-of-Life Care for Patients With Psychiatric Disorders
Joel Yager, MD; Jonathan Treem, MD; and Thomas B. Strouse, MD
The next tenet of intensive caring is holding or containing hope.5 Suffering casts a long and menacing shadow. Being caught within that darkness can render health care professionals hopeless and unable to see viable therapeutic pathways forward. Holding or containing hope means appreciating what is still possible for patients and their families and helping them realize that potential. Those possibilities span vigorous pursual of symptom management; enabling families to spend time together; facilitating meaningful conversations, such as expressing feelings of love, gratitude, regret, or remorse; and seeking reconciliation, forgiveness, or saying goodbye. These are among myriad ways patients and families prepare themselves and each other for impending separation by death.15 Just as health care professionals help families follow a path of least regret, they also enable patients to model how to die. In doing so, patients create a lasting imprint, shaping the way those who bear witness will one day face the inevitability of their own death.16
Some elements of intensive caring are not reliant on what one does or says to patients. For instance, dignity-affirming tone and therapeutic presence describe ways of manifesting certain characteristics to convey deep and steadfast caring. These include being compassionate, empathic, respectful, nonjudgmental, genuine, trustworthy, fully present, valuing the intrinsic worth of the patient, mindful of boundaries, and emotionally resilient.17 Words frequently fall short in response to suffering, which is why individuals struggle to come up with “the right thing to say.” Embodying a dignity-affirming tone conveys the appropriate sentiment without having to utter a single word.
The final tenet of intensive caring is therapeutic humility, which recognizes dimensions of human suffering whose remedy exceeds our grasp. This means shifting from a traditional medical paradigm—primarily focused on examining, diagnosing, and fixing—to a more holistic one that relinquishes the need to fix while affirming our commitment to presence, holding hope, and affirming patients’ worth as persons. Therapeutic humility also means accepting uncertainty because the patient’s course and how intensive caring might bend the arc of suffering are unknowable. This tenet requires trust in the process and mindfulness of its potential to deliver suffering patients and families to a better place.
Concluding Thoughts
Life often reveals elements of human experience that defy notions of being fixed. Intensive caring offers a way of addressing suffering designed to better meet the needs of patients and families. It also invites those who practice medicine to revisit how they approach suffering. By expanding their therapeutic repertoire and redefining expectations, intensive caring allows health care professionals to embrace their traditional role as healers.
Dr Chochinov is a distinguished professor of psychiatry at the University of Manitoba and senior scientist at CancerCare Manitoba Research Institute. He is the only psychiatrist in Canada designated a Soros Faculty Scholar, Project on Death in America, and is cofounder of the Canadian Virtual Hospice. He is an officer in the Order of Canada and an inductee in the Canadian Medical Hall of Fame.
References
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8. Cicely Saunders quotes. AZ Quotes. Accessed June 24, 2024. https://www.azquotes.com/author/20332-Cicely_Saunders
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10. Chochinov HM. Dignity Therapy: Final Words for Final Days. Oxford University Press; 2012.
11. Erikson EH. The Life Cycle Completed. W.W. Norton & Company; 1982.
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13. Hadler RA, Goldshore M, Rosa WE, Nelson J. “What do I need to know about you?”: the Patient Dignity Question, age, and proximity to death among patients with cancer. Support Care Cancer. 2022;30(6):5175-5186.
14. McDermott P. Patient Dignity Question: Feasible, dignity-conserving intervention in a rural hospice. Can Fam Physician. 2019;65(11):812-819.
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17. Chochinov HM, McClement SE, Hack TF, et al. Health care provider communication: an empirical model of therapeutic effectiveness. Cancer. 2013;119(9):1706-1713.
