Learning About the Importance of Caring in Life Through Death

By Sharon Koehn

This piece is an excerpt from the COVID-19 edition of the GRC News.

Teaching a course on Death and Dying for the Department of Gerontology provides a unique opportunity to reflect on the novel coronavirus (COVID-19) pandemic and our societal responses to it.

Insight 01: History repeats itself and life, death and dying are fundamentally political

During the bubonic plague pandemic, commonly referred to as the Black Death (1348–1350) people received some sage preventive advice—stay at home with doors and windows shut. Other advice was less effective or advisable, such as ‘carry a disinfectant such as camphor, or amber.’ Jews were scapegoated and persecuted; they were accused of poisoning wells. While the rich were able to flee to healthy parts of the countryside, the poor living in crowded conditions in towns, suffered the most. The ensuing social disruption is well documented, but the lessons of history appear to be lost on us.

Almost 700 years later, we are trying to prevent the spread of COVID-19 by staying at home and social distancing. But again, the politicization of this pandemic has exposed inequities. Around the world, diasporic Chinese have been scapegoated and continue to be the target of random attacks in public. Crowded cities, like London in the United Kingdom (UK) and New York in the United States (US), have suffered the highest fatalities.¹ And while the more privileged switch to working remotely from their spacious homes, the poor—who are disproportionately people of colour and/or migrants—continue to provide essential services, processing and selling food, driving cabs, taking care of the elderly for low wages and minimal protection, etc. They are more frequently exposed to the disease and take it home to their families living in close quarters, and they are more likely to die.² The U.K’s Office for National Statistics reports mortality rates twice as high in economically deprived areas (c.44–55 deaths per 100,000), as compared to those least deprived (c.23–25 deaths per 100,000).¹ Similarly, older people living in long-term care homes are ‘prisoners of space’ when they are housed in shared rooms of two to four: in Ontario, for example, residents of long-term care and retirement homes who comprise 1% of the population, yet account for 89% of the total deaths from COVID-19.³

Insight 02: Epidemiology and demography interact and have social origins and consequences

Over the course of the twentieth century, most Canadians experienced increases in their standard of living and access to health care. We also saw advancements in medicine and medical technologies. Perhaps most importantly, public health measures, such as access to clean water, routine vaccinations against infectious diseases, and public and personal sanitation practices became widespread. Prior to these changes, death was often experienced as a relatively sudden event, typically due to infectious diseases, parasites or accidents, that could occur at any age and was witnessed by family members within the home.

By contrast, death for most is now more likely to involve “a long, slow fade” as Gawande⁴ puts it. People typically die at an advanced age from the accumulating effects of one or more chronic conditions, such as heart failure or dementia, and this takes time. Even illnesses previously understood as acute, such as cancer and AIDS, have now been rendered chronic through medical advances. In previously colonized countries, such as Uganda, however, AIDS infections of young adults succeeded in reversing the transition, with life expectancy at birth lower in 2000 than in previous years.⁵ When infectious disease claims the lives of working age adults, family income decreases, grandparents become caregivers, and there may be no-one to provide care for them as they age.

Life expectancy has been rising in Canada and many other countries; however it varies considerably across jurisdictions because it is governed to a great extent by social determinants of health, such as socio-economic status, adequate housing and nutrition, clean water, and access to at least basic health care. In 2018, we were warned that the Ebola virus that was devastating West African countries could become a pandemic, but our confidence in our higher standard of living and more robust health care systems led most of us to turn a blind eye to the problem, even though similar levels of community vulnerability exist on First Nations’ reserves. The extensive reach of COVID-19 has nonetheless shaken our confidence, challenging the notion that we are no longer susceptible to sudden death caused by infectious disease.

Like HIV/AIDS before it, COVID-19 also foregrounds the limits of medicine and technological intervention. Ventilators have been limited in their ability to save lives and some physicians have begun to speculate that they may have even caused more harm than good for some COVID-19 patients. Moreover, their shortage in many countries led to controversies over their rationing in favour of the young. Once again, we are reminded of the importance of preventive public health strategies, such as handwashing and vaccinations. More importantly, we are reminded of the importance of taking the time to care. The staff of one long-term care home in France eliminated the potential for COVID-19 transmission to residents by moving in with them for 47 days. This simple but radical approach to prevention saved lives and sent an important message to the residents: you matter.

Insight 03: When death is hidden, the lives of older people seem to matter less.

In countries like Canada, where the epidemiological and demographic transitions are well established, death has long since been professionalized and sanitized. Gone are the days when people typically died in their homes and families prepared them for burial in simple coffins. Today, the dying are more commonly removed to specialized, sanitized sites, such as hospitals or complex care facilities, where they are enrolled in the professionalized rituals of disciplines such as nursing, medicine, and palliative care.⁶ Deaths are recorded statistically, and the funeral industry has blossomed. In hiding death from the casual public gaze we protect ourselves from the discomfort of accepting our own inevitable demise and feed the societal thirst for eternal youth. The willingness by some politicians and lockdown protesters to accept the deaths of the elderly from COVID-19 as a sacrifice needed to open the economy shines a glaring light on ageism.

Insight 04: Caring about the lives and deaths of the elderly demands their inclusion

The last decade or so has nonetheless been characterized by some resistance to death denial and the exclusion of the elderly. For example, between 2008 and 2018, the rates of death in hospitals fell by 6%, balanced by a corresponding increase in deaths at home or in long-term care.⁷ Concerted efforts are being made to make palliative care available at home, and to adopt a palliative approach in long-term care that places the quality of life of the patient with a life limiting illness, along with their family members at the centre of prevention, assessment and treatment of physical, psychosocial and spiritual pain. By establishing goals of care with patients and families, care homes are seeking to avoid hospital transfers. In all settings, the goal is ensure dignity at the end of life. Persistent problems of availability and access to hospice and palliative care prevent almost half of Canadian palliative care patients from being discharged to home or a hospice setting before they die.⁸

Since 2016, Medical Assistance in Dying (MAID) has been legally available as a choice for people who are ‘suffering intolerably’ with an irremediable condition and are capable of consent. Opinions differ as to whether MAID goes too far or not far enough, with differences by gender, faith and ethnoracial background, but the voices of older adults in this debate are becoming louder. Similarly, the impetus behind changes in the 1990s to Adult Guardianship law and personal planning legislation was a grassroots law reform movement in British Columbia. These reforms gave rise to planning tools such as Advance Directives and Representation Agreements that, in theory at least, allow older adults to state their preferences for care as their health fails.

Why is all this important as we contemplate the disproportionate burden of suffering and death borne by the oldest among us during the COVID-19 pandemic? Without a doubt, there is so much that can be said about the failure of the health care system to meet the needs of older adults, whether they be in care or in need of assistance at home. Yet there are many advocates of promising practices—health and social care providers and decision-makers, academics and most importantly, older adults themselves—who prioritize the needs and wishes of older adults at the end of their lives and situate care as the focus of practice. And it is these practices that we need to build on as we create a better way forward.

References

Please note that some of these sources are provided to illustrate current conversations rather than as credible sources of evidence.

1. Office for National Statistics, UK. Deaths involving COVID-19 by local area and socioeconomic deprivation. Published May 1, 2020. Accessed May 12, 2020. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsinvolvingcovid19bylocalareasanddeprivation/deathsoccurringbetween1marchand17april

2. Nelson SC. Black People Four Times More Likely to Die from Coronavirus Than White People. HuffPost UK. Published online May 7, 2020. Accessed May 8, 2020. https://www.huffingtonpost.co.uk/entry/black-4-times-die-coronavirus-than-white-males_uk_5eb3cc14c5b6526942a25373

3. Richard J. Seniors still hardest hit by COVID-19 pandemic. Toronto Sun. https://torontosun.com/life/relationships/0503-lifenational. Published May 3, 2020. Accessed May 6, 2020.

4. Gawande A. Being Mortal: Medicine and What Matters in the End. Metropolitan Books; 2014.

5. Seale C. Changing patterns of death and dying. Soc Sci Med. 2000;51(6):917-930.

6. Cromby J, Phillips A. Feeling Bodies: Analysing the Unspeakability of Death. In: Carpentier N, Van Brussel L, eds. The Social Construction of Death: Interdisciplinary Perspectives. Palgrave Macmillan; 2014:52-72. https://doi.org/10.1057/9781137391919

7. Statistics Canada, Government of Canada. Deaths, by place of death (hospital or non-hospital). Published May 13, 2020. Accessed May 13, 2020. https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310071501

8. Canadian Institute for Health Information (CIHI). Access to Palliative Care in Canada. Canadian Institute for Health Information (CIHI); 2018:67. https://www.cihi.ca/sites/default/files/document/access-palliative-care-2018-en-web.pdf