What Does Good End-of-Life Care Look Like in a Pandemic?

Abstract

FOR RELATED ARTICLE, SEE PAGE 383 How do we ensure good end-of-life care in a hospital system under strain? For many of us, the COVID-19 pandemic prompted a renewed effort to answer this question. 1 Patients, families, and palliative care clinicians have long advocated that good end-of-life (EOL) care extends beyond pain control and the limitations of nonbeneficial treatments to include psychological, relational, and spiritual support. 2 These aspects of EOL care, such as life completion, attending to relationships, and performance of rituals, were particularly impacted by the COVID-19 pandemic. Visitor restrictions, infection control measures, and staffing shortages all hindered the ability of clinicians to attend to the humanity of dying patients. 3 For many clinicians, inability to adequately attend to the psychosocial and spiritual needs of patients and families during the pandemic led to lasting emotional and moral distress. 4 In this issue of CHEST, Nishimura and colleagues 5 have highlighted the ways in which clinicians circumvented immense challenges to attend to the human and spiritual needs of dying patients and their families during the COVID-19 pandemic. 5 They conducted a qualitative descriptive study of clinicians across multiple hospitals in Japan. Their aim was to understand how clinicians attempted to support patients who died in the hospital, along with their families, during the pandemic. Using purposeful sampling, they interviewed 33 individuals (15 doctors, 18 nurses) from 23 hospitals in 13 geographic regions. Participants were asked to describe the kinds of EOL care they provided to patients and to clarify the meaning and purpose of such care. Using an inductive semantic approach to thematic analysis, they constructed four themes encompassing 51 unique care strategies. These were maintaining relationships with isolated patients; connecting patients and families; shared decision-making in isolation; and creating humanistic episodes at end of life. To maintain relationships with isolated patients, clinicians focused on addressing loneliness and attending to the human aspects of care, such as listening to concerns, playing music, and preventing death alone. To connect patients and families despite visitor restrictions and infection control concerns, clinicians made use of video technology, encouraged families to bring in letters and gifts, and made time for families to speak with loved ones before intubation. To facilitate shared decision-making in isolation, clinicians built trust by listening as families shared their concerns about COVID. They used video technology to help families visualize their loved one’s illness and ICU diaries to reassure families about the extent of care that had been provided for dying patients. Finally, they created humanistic episodes at the end of life and attempted to honor funerary rituals despite infection control measures by helping families place personal items in the body bag with the deceased patient, dressing the body in clothes chosen by family, and using clear body bags, carefully positioned, so that families could view their loved one’s face. Through these acts, hospital physicians and nurses in Japan sought to maintain the traditional rituals necessary for a good death, which would normally be performed at home. One aspect of EOL care that is often overlooked in hospitals, and particularly in the ICU setting, is the importance of bereavement support for families. In this study, ICU diaries were used as a tool to help grieving families achieve closure. ICU diaries have previously been demonstrated to improve mental health outcomes and reduce posttraumatic stress disorder in patients by providing them with a written day-by-day account of their ICU admission created by the health care team. Future work is needed to better understand how ICU diaries might support families at end-of-life, especially in circumstances in which spending time at the bedside may not be possible. 6 Likewise, clinicians should find ways to accommodate and encourage funerary rituals in the inpatient setting. The 3 Wishes Program is one example of an ICU palliative care intervention that continued, despite the pandemic, to fulfill terminal wishes of dying patients and families, including the creation of postmortem keepsakes. 7 Hospitals can, and should, learn from the shared experiences of other health systems to create programs tailored to their patient populations. This study is a valuable exploration of ways to find meaning in EOL care during a pandemic, with lessons that can be extended to all health systems under strain. The authors should be commended for their adherence to qualitative rigor and for completing such an intensive project during a global pandemic. As the authors state, one weakness is the exclusion of clinicians with mental illness or who might have felt distressed when recalling their experiences. These clinicians may have perceived EOL care in a pandemic differently. More generally, the authors focused primarily on clinicians’ descriptions of care rather than how providing EOL care impacted clinicians themselves, which is a topic that deserves further exploration. How the EOL care acts described in this study compared with EOL care in Japanese hospitals pre-pandemic remains unclear. Finally, although this study helps us understand how doctors and nurses perceived EOL care, we do not know how these acts were received by patients and families. To deepen our understanding of what it means to provide good EOL care in a pandemic, we must also seek to understand the perspectives of patient and families on this topic. 8 Although this study is situated within a particular country and cultural context, the importance of maintaining human connection at end of life—for patients, families, and clinicians—is universal. As clinicians, we must continue to reflect on how to provide meaningful EOL care for patients under challenging circumstances. In planning for future pandemics, health systems across the globe must ensure that the humanistic aspects of end-of-life care are maintained through use of innovative technologies and policy commitments that prioritize family visitation and spiritual connection. Funding/Support Dr Schenker is supported by a K24 grant from the 10.13039/100000002 National Institutes of Health (K24AG070285). Dr. Andersen is supported by a T32 grant from the 10.13039/100000002 National Institutes of Health (T32HL007820). Financial/Nonfinancial Disclosures None declared.