Choices for Dying

“Having the conversation” — that is, confronting the challenging issues, in this case about dying — is the most helpful approach for people who wish to make choices and create plans for the kind of death they want. But the topic can seem too upsetting or unpleasant to broach with family and friends—and even with personal physicians. After receiving a terminal diagnosis, Colombia health care crusader Tatiana Andia posed the question: “How come we can’t talk about having a dignified death when we talk about the right to health?”

“At the moment in the United States, there are a lot of people rethinking what they want in end-of-life care,” writes New York Times editor John Otis. In a NYT project titled “Let’s Talk about Death”—covering death-related issues and offering answers to FAQs—the question from a reader near the end of his life about “What’s my death going to feel like?” demonstrated to Otis “…how we’ve failed people… that someone [in hospice care] is still not aware of what’s happening in their body.”

Cases of advanced dementia bring up the thorniest death-related questions, even as new tests and research offer hope of forestalling the disease; and as books and movies, such as Still Alice, present positive takes on living with dementia. But for those who have seen someone endure this physically grueling and progressively debilitating disease, more doctors are fielding the question: What can I do to prevent this from happening to me?

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The potential for huge expenses of a long drawn-out death is a major concern for many – with a familiar statistic showing that one half of a person’s lifetime health care costs are commonly incurred in the last year of life. “Dignity in dying” refers to individual choices in the timing and means of one’s death—and is also the name of a clearinghouse of information for terminally ill patients. And the Swiss organization Dignitas offers help in dying for those able to pay for the services and to travel.

For those with a terminal illness, many U.S. states and DC have legalized MAID (medical aid in dying) under specific conditions, notably a physician who certifies that the patient has no more than six months to live. In addition, MAID provisions require that patients be of sufficiently sound mind both to provide explicit verbal consent and to actively participate in their death — along with with medical assistance ranging from drug cocktails that cause rapid death to “comfort” support for VSED, voluntary stopping eating and drinking.

In the case of severe medical conditions and emergencies, Living Wills or Advance Medical Directives cover requests that usually include a DNR (do not resuscitate) and sometimes other specifics such as “Do not insert tube for breathing or food” or “No hospital transfer.” The request to limit in-hospital care can specify a maximum hospital stay and often applies in cases of injuries that require surgery.

Advanced dementia is medically, ethically, and legally in a different category from terminal illnesses and medical emergencies. With VSED, which is the only legal recourse available in the absence of a terminal prognosis, dementia sufferers can become too incapacitated to “actively make that happen,” writes Susan Mann Flanders, a DC-area Episcopal priest, in If I Ever Lose My Mind: Aid in Dying with Advanced Dementia.* “How can self-rule or autonomy be honored if there is no self?”

“We are left with huge questions about what is enough to make life still meaningful and worth living, and who is to be the judge of that,” writes Flanders. She addresses controversial issues such as kinds of suffering people might wish to avoid—expressing her belief that *“Humiliation or indignity [is] not sufficient cause to shorten my life… There is a benefit in going through such things with as much grace as one can muster… the ability to endure hardship may be a character-building strength to be cultivated and admired.”

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In cases of advanced dementia, timing can be complicated: “Five minutes to midnight” refers to the short time frame that can occur between when one might wish to die and yet still has the presence of mind to qualify. While hospice may provide comfort care, Flanders suggests that anyone offering support should consult a lawyer and create a legal document to say something like “I am ending the slow, demeaning dying of [someone] whose life is already over.”

Rather than “do-not” requests, a different approach—in cases of advanced dementia as well as terminal illness and emergencies—instead bases Advance Directives on “what is important to me,” such as recognizing family members. Stories abound, however, of failures to honor Advance Directives by health care personnel as well as by family members, with reasons that range from the unavailability of documents in time to medical conditions like a stroke, where temporary measures could help but end up requiring long-term care.

For me, Flanders’s book addressed—with thoughtfulness, sensitivity, and a lot of useful information—many of the issues that have worried me since I watched my mother-in-law, looking like a hollowed-out ghost, spend years dying with advanced dementia. I disagreed with some of Flanders’s thoughts, such as on humiliation and indignity. But in a recent email to me, Flanders wrote, “I am agreeing with your disagreement. [Since the book’s 2018 publication], I have not seen grace and character-building in late-stage dementia.”

For having the conversation about dying, Flanders mentioned groups she has organized as well as those offered by Death Café. And for writing Advance Directives, I am grateful for my doctor’s suggestion to create a list of what is important — which for me includes physical independence and pain reduction, and, at the top of my requests, remembering the names of my two sons.

*To purchase Flanders's book, contact her directly at susanflanders@earthlink.net.