How to get started preparing for the end
By Alison Rooney
After the deaths of two close family members, Alison Anthoine enrolled in a 72-hour course at the New York Open Center in Manhattan on “integrative thanatology,” more commonly known as “the art of dying.”
Learning about thanatology — the scientific study of death and the practices associated with it, including the study of the needs of the terminally ill and their families — alongside chaplains, hospice workers and hospital volunteers, the Cold Spring lawyer hoped to fuse her personal and professional worlds. She decided she would use the training in palliative care and the grieving process and her legal education to educate others and developed what she calls a “death literacy” workshop.
“So much of what is told to us at this crucial time, we don’t understand,” often because the language used by social workers and medical staff is unfamiliar, she says. “My approach is to educate and encourage people in understanding how important it is to have advance-care directives. The [hospital] default is to throw every resource at the patient, whether they want it or not. This robs people of dignity.”
In an advanced-care directive, a person makes provisions for medical decisions in the event that he or she is unable to make them, including whether to end life-sustaining measures. Along with a power of attorney, it provides a blueprint for health care providers and institutions in determining whether and in what circumstances to intervene at the end of life.
Hospitals usually request these documents from patients or their family members as a matter of course, often immediately upon admission. But most Americans don’t have them, leaving the hospital to make critical decisions without guidance.
“Doctors at hospitals are constantly dealing with situations in which people come in without directives, which then causes crises for the patient and their families; it can tear them apart,” she says. “A family member flies in from somewhere, perhaps hasn’t seen the patient or interacted with other family members for some time yet says ‘You can’t do that.’ The best gift you can give to your loved ones is to say what you want.”
In her workshops (one that took place in Cold Spring recently attracted participants aging from their 30s to 70s), Anthoine describes counseling “in a continuum — some people hadn’t begun theirs, others were looking to revise documents already created; it’s important to revisit your document every year or so, as you’ll find your attitude may change.”
When preparing a health care proxy in which you designate someone to make medical decisions should you not be able to communicate, Anthoine advises a step often overlooked. “Talk to the proxy and let them know” you have chosen them, she says. “It’s sort of the last taboo in the U.S.; there’s a real fear about it.”
Educating people about advance directives can help, she notes. In La Crosse, Wisconsin, where in the 1990s only 2 percent of the population had advance directives, a doctor spearheaded a campaign that within two years brought the number to 45 percent. By 1995, 85 percent of people who died in La Crosse County had advance directives and by 2009 the figure had reached 96 percent. At the same time, medical costs associated with patients’ last two years of life declined steeply.
There are many advance-care directive forms available, some more specific than others. Anthoine discourages using the official New York State Advance Care Directive, which she calls “quite unintelligible,” and instead recommends the 6-Steps Living Will, created by a retired clinical psychiatrist at the University of Washington and available free at 6stepslivingwill.org. Directives also can stipulate organ donation wishes and whether a person prefers to die at home or in a hospital.
In addition to the workshops, Anthoine has partnered with a classmate to launch Bevival.com (combining being and revival) to assist with end-of-life decisions. Anthoine is determined to spread the word. “Wherever anyone can organize a space, I’ll do a presentation,” she says. For more information, email firstname.lastname@example.org.