James Mellett describes the importance of re-conceptualizing a good death for those with COVID-19.
In their recent CMAJ article, palliative care physicians, Drs. Amit Arya, Sandy Buchmann, Bruno Gagnon, and James Downar, describe how the current COVID-19 pandemic necessitates the provision of high-quality palliative care, while at the same time creating numerous challenges for doing so. They note how pandemic measures aimed at containing the virus’s spread challenge palliative care by limiting how and where a patient dies. They remark that patients with COVID-19 may be unable to transfer to specialized palliative care units, and that infection control measures may prevent patients from dying in the presence of loved ones and caregivers, contributing to patients feeling socially separated at the end of life.
These infection control measures challenge the ability of healthcare workers to provide, and patients to experience, a good death and dying experience. Conventional approaches for the care of patients at the end of life, such as hospice care and medical assistance in dying, aim to provide patients and their families with a good death. These approaches allow patients and their families to construct a narrative of their death and dying process that empowers, comforts, and prepares patients and their families, and helps families with the grieving process. In hospice care, the good death narrative involves the patient journeying towards death either at their home or in a warm, home-like residential hospice facility, in the presence of their family and hospice caregivers, and with their symptoms well-managed. Patient dignity and choice are emphasized, and the care provided is personalized to the choices and values of the patient. With medical assistance in dying, the patient takes control of the circumstances of their dying process and dies in accordance with their preferences, values, and choices.
Infection control measures in response to the COVID-19 pandemic prevent patients with the virus and their families from creating these narratives. Patients at the end of life who have COVID-19 now face a reality of dying in acute hospital wards, physically separated from relatives, and only able to interact with staff or select family members donning personal protective equipment. This is a jarring change from conventional societal perspectives on what it means to die well.
While medication helps with physical symptoms, the approach to palliative care for patients with COVID-19 must be grounded in a re-conceptualization of what it means to die well. A new narrative must be created that includes alternative death and dying practices that are mindful of infection control, while also creating a comforting death and dying process for patients and their families. Using examples of the alternate practices suggested by Drs. Arya, Buchmann, Gagnon, and Downar, we can see how such a narrative might look. When a patient’s prognosis deteriorates or the goals of care for a patient shift to comfort care, the patient should be moved to a peaceful setting. Efforts should be made to let select family members safely visit (if there is sufficient personal protective equipment available), and electronic communication should be used to connect the patient with their family and friends. Spiritual care and social workers should visit the patient to address the patient’s psychosocial needs. Should the patient have uncontrollable symptoms, palliative sedation should be offered to help the patient rest comfortably.
Following a patient’s death, alternative funerary and bereavement practices need to be considered given the infection risk posed by in-person funerals or the potential strain on funerary and coroner services (which has been reported in cities with high numbers of deaths from COVID-19). Australian journalist Lisa Cox has written about families using technology to conduct funerals online. Similar practices will help in completing the narrative of a good death with COVID-19.
The creation of a new narrative could provide a level of structure and comfort for patients and families, improving their end-of-life and grieving experience. However, the benefits of this new narrative may extend to staff as well. Narratives of a good death provide solace to healthcare staff who are tasked with caring for patients at the end of life and their families. The current absence of these narratives, as well as a growing number of patients at the end of life with COVID-19, could create a great deal of emotional and moral distress for staff. A new narrative of what it means to die well from COVID-19 could provide healthcare workers with structure, comfort, and familiarity in these difficult times. Following the COVID-19 pandemic, this narrative could provide a guide on high quality end-of-life care for those who are unable to complete more conventional good death narratives. For example, the increased use of technology could be used to help connect those with family members who are unable to visit in person, and finding quiet and calm spaces in acute care units could provide a peaceful end-of-life setting for those who cannot be transferred to hospice.
James Mellett is a graduate student at McGill University’s Biomedical Ethics Unit and a research trainee at the Palliative Care McGill network. @mellett_james