By Dr. Jeff Spiess
In the time it takes you to read this article, some fifty-five people in the United States will die, six of them from COVID-19. The experience of living in the midst of a pandemic provides many lessons, one of which is that each of us is vulnerable to infection, illness, even death. Precautions to minimize our danger and flatten the epidemiological curve are effective but do not eliminate risk in a society that thrives on interaction. People, some of them prominent personages, who ignored or rejected the recommendations have gotten infected and some have died, demonstrating that even the hubris of exceptionalism crumbles in the face of the onslaught.
This experience in twenty-first century America, while unprecedented to most of us, is hardly unique in human history. Consider, for a moment, fifteenth century Europe, a time of international political upheaval produced by the Hundred Years’ War, and of the continent-wide pandemic of the Black Death. People searched for someone or some group to blame for the devastation; they took the few hygienic precautions they understood, and combined them with magical and mystical protections and remedies, but mostly they lived in fear as these unpredictable forces killed them in droves. During this era of confusion and chaos an anonymous treatise appeared entitled Ars Moriendi, the Art of Dying. Part of this pamphlet’s message was, unsurprisingly for the time, that people should focus on the afterlife, cultivate their religious devotion, and adhere to the teachings and practices of the church. But Ars Moriendi also introduced a revolutionary idea, that of dying well, that is, with peace, ease, and dignity, and taught that if we desire to have a good death, whenever it comes, we must actively plan for it.
So, what does it take to prepare to die well? Simply, it requires personal affirmation of the fact of mortality, our own individual death, an acceptance that involves the intellect, emotions, and spirit. The rational part of our selves acquiesces most easily to accomplish the “I should get this done” list: formulating an estate plan, executing advance directive documents, and planning body disposition and even memorial services. So, use this opportunity to review (or execute if you’ve never completed them) your advance directives; there is some state-to-state variability, but every jurisdiction in the United States recognizes the two essential documents, the living will and durable power of attorney for health care.
Your living will is a statement to your physicians outlining what kinds of medical care you would choose or not desire if you are in an irreversible coma or terminally ill and unable to speak for yourself. Typically, people with a living will say that do not want aggressive life support measures like resuscitation, breathing machines, and tube feedings, and do request comfort measures, though yours could instruct exactly the opposite if those are your wishes.
Since the living will comes into effect only under specific circumstances, you also need a durable power of attorney for health care, in which you appoint someone you trust to speak for you in medical matters if you cannot speak for yourself. Make sure the person you name will likely be available and willing to act on your behalf and be sure to talk openly with that person about your values so they can choose best for you. The job of a health care surrogate is to speak for you, not to do what they think they would want.
In addition, many states allow durable and portable physician orders that are particularly beneficial to those with serious or terminal illness. The most common of these is the portable Do Not Resuscitate (DNR) order, that is in effect wherever you are (at least in that state), directing caregivers including EMTs to not initiate CPR when your heart stops, but to allow you to die peacefully. Several states expand this idea with the Physician Orders on Life-Sustaining Treatment (POLST), dictating your choices in several other scenarios. Your doctor or other health care provider is the best resource to investigate and enact these options if they are available in your state.
The novel coronavirus pandemic has added significant complexity to making end-of-life preparations. Dying of COVID-19 in a hospital or other health care facility means, at least for the next several months, that you will be alone, with visitors severely limited. But if you choose to remain at home, you need to know who will take care of you, who is willing to accept the risk of becoming infected themselves. Hospice agencies are tremendous resources for assistance here, particularly with education, medications, supplies including protective equipment, and some hands-on ministrations, but the bulk of the day to day, hour to hour care usually falls to family members. My wife and I, for example, have decided that if either of us gets seriously ill with COVID, we will avoid going to the hospital, stay home, and enroll in hospice, and we each have committed to care for each other should that happen.
Sorting through these issues raised by COVID-19 evokes the deeper levels of facing and accepting our mortality. Our bodies can experience pain, decline, and cessation of function, our minds can observe and plan and assess, but it is our emotions and our spirits that face the implications of our dying. It is a person, not just a body and a brain, who suffers and dies, and only that entire being can experience relief and healing. These require emotional openness, personal grieving, and spiritual exploration.
This whole person encounter with death is neither difficult nor exclusive. It does not require specialized skills or secret knowledge. I wrote the book Dying with Ease as a roadmap through the unfamiliar and often frightening world of dying, especially as it happens in the twenty-first century United States: with data and information, advice and guidance, and opportunities for emotional and spiritual encounters as we face this ultimate human experience.
Dying is probably the most important thing you will ever do, and you only get one chance to do it well. After you are gone, others will talk about you, and a good deal of their conversation will be description and even evaluation of your ending. Most of this will be clichés in attempt to assuage their own fear of death, but these memories are part of the legacy that you will leave. Here is the big print message of COVID-19, of Ars Moriendi, even of the biologic circle of life: Since you are alive, you will die. And, since you are alive, you have an opportunity to make your dying dignified, peaceful, and, yes, easy.
Dr. Jeff Spiess is the author of Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions. He has spent his medical career with people facing serious illness and death, first as an oncologist, then as a hospice physician. He has lectured extensively and has been recognized as a leader in the field of end-of-life care. He has observed, through extensive clinical experience and innumerable conversations with the dying and those caring for and about them, the burden of unnecessary or avoidable suffering and distress engendered by the American tendency to avoid facing death as an inevitable personal reality. His medical practice and writing are informed by his interest in philosophy and theology, and he finds additional insights in depictions of dying in literature, including sacred texts, music, and popular culture. His writing provides information and inspiration, challenging readers to honestly encounter their own mortality to both die better and live more fully.