covid-19 public health restrictions shouldn’t mean dying alone

by barbara pesut, university of british columbia

one of the most heartbreaking aspects of the covid-19 physical distancing has been accounts of people dying alone in hospital or in long-term care facilities .

these incidents have not only devastated family members but also disturbed many people with the sense that something has gone wrong with how our society cares for aging or vulnerable people and responds to illness and and dying.

on may 19, the canadian hospice palliative care association (chpca) launched a campaign called “saying goodbye” that calls on health authorities to “ implement a more compassionate approach to end-of-life visitations across canada during the covid-19 pandemic .” the chpca says that “while certain provinces have taken steps to relax visitation protocols for end-of-life situations, many hospitals and long-term care homes still do not allow family access, even with personal protective equipment (ppe).”

dying in long-term care

these are described as including but not being limited to “ visits for compassionate care (end of life and critical illness), visits considered paramount to resident care and well-being, such as assistance with feeding or mobility ….”

but there is a great deal of room for interpretation of what constitutes an essential visit .

those in residential or long-term care can be at risk and it is often the vigilance of family members that ensure that these vulnerable persons receive adequate care. a family member who visits regularly is a powerful surveillance system .

palliative care

the office of the seniors advocate british columbia notes that the average length of stay for residents in long-term care is 871 days — less than two-and-a-half years . that means that if following best practices, all people residing in long-term care should receive a palliative approach to care .

the world health organization defines hospice and palliative care as “… an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness .” it seeks to prevent and relieve “suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

of note in this definition highlighting “patients and their families” is that palliative care seeks to address people holistically as individuals in relationships .

although most canadians wish to die at home , circumstances often lead to an institutional death. long-term care has increasingly become a site for palliative care . wishes for care are obtained upon admission and the supportive principles of palliative care are applied to ensure that people in care enjoy the highest quality of life possible for the limited time they have left.

community vs. individual

in times of pandemic, ethical decision-making tends to emphasize the good of the community over the good of the individual .

“ a society has a right to protect itself from harm, real or threatened. the government is justified in intervening and possibly impinging on the rights of individuals to protect the community from harm .”

harm-reduction approach

those we love are an integral part of our dying journey. so much so that a recent court case in the united kingdom concluded that patients have a fundamental right to be with their family at the time of death .

we have come to know of the value of harm reduction primarily from people who are vulnerable because of addictions .

until a vaccine is found, covid-19 is here to stay — but these precious lives are not. giving people permission to be together at the end of their lives will take some ingenuity and money. but it’s the right thing to do.
barbara pesut, professor, school of nursing, university of british columbia