COVID, Elder Justice, and Advance Directives

COVID-19 has forced us to face the fact that in mere days or hours we can go from autonomous, free-acting agents to having strangers become the guardians of our bodies and selves. These strangers may be called upon to judge the value of our lives against those of others as they triage scarce resources or to predict our quality of life against the potential risks and rewards of treatments. The sudden annihilating onset of the disease denies many the chance to choose for themselves how they want to spend their final hours and with whom. It separates patients from loved ones, depriving both sides of mutual comfort, reassurance, and the easing of fears and suffering. ​

The sudden annihilating onset of the disease denies many the chance to choose for themselves how they want to spend their final hours and with whom. It separates patients from loved ones, depriving both sides of mutual comfort, reassurance, and the easing of fears and suffering. ​​

Some think of end of life decisions as the purview of ethicists, lawyers, and faith communities. But it is frontline medical personnel who are often at the scene when decisions need to be made, typically with little or no knowledge of those whose lives (and deaths) are in their hands. These decisions weigh heavily on frontline providers; while accustomed to serving the critically ill, few are prepared for the onslaught of cases this pandemic has engendered.
 
COVID has many people thinking about advance directives like living wills and powers of attorney for health care. These documents memorialize peoples’ choices and wishes about their care and treatment in case they become unable to direct their own care. Advance directives can be as simple as stipulating who we want to make decisions for us or as granular as specifying who we want to have told that we’re sick.

...even the most carefully crafted and reasoned advance directives are useless if first line responders don’t know they exist or if those entrusted to make decisions for the critically ill or dying aren’t notified.

Even in the best of times, the care and treatment that many Americans would choose near the end of life are different from what they receive. Substantial research also reveals ethnic, racial, and economic disparities in who completes advance directives. While some of the difference can be attributed to variations in cultural attitudes and beliefs, lack of access to information and assistance in completing directives is also a significant factor. And, even the most carefully crafted and reasoned advance directives are useless if first line responders don’t know they exist or if those entrusted to make decisions for the critically ill or dying aren’t notified. Although California has a registry of advance directives that allows people to register their information, many are unaware it exists. This includes service providers who work with clients who are low income, cognitively impaired, and those at particularly high risk for COVID and other critical conditions.
 
Protecting the autonomy of the critically ill and dying is core to elder justice. For that reason, CEJC has called for raising awareness about advance directives, ensuring equitable access to them, and help executing them. These were among our top recommendations for California’s Master Plan for Aging (MPA), and we are delighted that they were included among the Elder Justice & Abuse Recommendations (#10) under Goal 4: Economic Security, Safety & Emergency Preparedness.

Lisa Nerenberg

Lisa Nerenberg is CEJC's executive director and author of Elder Justice, Ageism, and Elder Abuse (Springer, 2019).