End-of-Life Lessons for Nelson Mandela's Family -- and Yours
The world is watching the statesman's family agonize over his final days. Don't let it happen to you.
Gary Drevitch is senior Web editor for Next Avenue's Caregiving and Health & Well-Being channels. Follow Gary on Twitter @GaryDrevitch.
Mandela's family now faces the same wrenching end-of-life decisions that challenge millions of others worldwide every year, but in an intense media spotlight and in a country, as The New York Times reports, where legal guidance is unclear.
Private Decisions in the Spotlight
Experts told the Times that South African courts will follow a patient's guidance when there is a living will or when someone has been appointed as a surrogate to make decisions on his or her behalf. It is unknown whether Mandela created such documents — at least one South African newspaper reports that he did not — or named his wife, Graça Machel, as his surrogate. In the absence of such instructions, there may be extended wrangling over end-of-life decisions among a family that has already been riven by other legal disputes.
"Despite all the contention and all the fights the Mandelas seem to be having," Nomboniso Gasa, a political analyst in Johannesburg, told the Times, "I think they are quite aware that an end-of-life decision may need to be taken."
In 1998, then-President Mandela ordered a review of his nation's end-of-life laws. The eventual report found many gray areas and included several specific recommendations to address them. But that advice has gone largely unaddressed by legislators.
(MORE: The Day I Met Nelson Mandela)
A 2003 South African law defines death as the cessation of all brain activity and gives doctors the ability to remove a patient from life support, even without a family's consent. "It becomes problematic if one seeks consensus by way of an entire family if the patient is not brain-dead but in a permanent vegetative state without a living will or other directive," Pieter Carstens, head of the Department of Public Law at the University of Pretoria told the Times in an e-mail.
The experts quoted in the article acknowledged that doctors could conceivably seek a court order to withdraw life support from Mandela, but agreed that in the case of a global icon, such action may be unlikely.
Lessons for Your Family
As Mandela's situation makes clear, one of the most important things we can do for ourselves and our families, at any age, is to ensure that our end-of-life wishes are clear and that they have been rendered in a legally binding way. Only 30 percent of American adults have prepared a living will, committing their wishes to paper with the hope of relieving their next of kin of having to make life-or-death medical decisions. But even those who have done so are discovering that their documents may not be thorough enough to guide loved ones through every possible situation.
(MORE: How Strong Is Your Living Will?)
Medical advances have led to increased diagnostic uncertainty and care dilemmas that families and legal advisers may never have envisioned. For that reason, many families are turning to more flexible alternative documents, like the Five Wishes questionnaire from the website Aging with Dignity, which helps people express a wider range of preferences covering their medical, emotional and spiritual needs.
Others are avoiding living wills altogether, instead relying on simpler documents designating a single health-care agent or proxy. This friend or family member is authorized to make the decisions they believe the patient would make, under the legal doctrine of "substituted judgment." There are pitfalls to this approach as well, though; in a University of Michigan study of 400 hospital patients — some had living wills, some didn't — family members could correctly predict their loved one's care wishes only about 70 percent of the time.
(MORE: Why I Trust a Friend, Not a Relative, With My Life)
Whatever legal form it eventually takes, no one should create an end-of-life document without a frank and open conversation about a topic most of us are inclined to avoid as long as possible. To that end, the Conversation Project, founded by Pulitzer Prize-winning Boston Globe columnist Ellen Goodman, provides families with tools, including a downloadable kit that walks them through key questions from how much they want to know about their condition as they decline to how aggressively they want doctors to treat them and how much latitude they wish to give those making decisions on their behalf.
(MORE: 5 Reasons I Won't Die the Way My Mother Did)
"This conversation is a gift to your family," Goodman says. "We want you to start this conversation with the people you love, either because you may have to make decisions for them or because they may have to make decisions for you. We all know we should be having these conversations now, without waiting for some mysterious time that may well be too late."
For a detailed guide to end-of-life planning, including descriptions of living wills and related documents, tips for conversations with doctors and explanations of typical medical interventions, see How to Help a Loved One With End-of-Life Decisions from the National Institutes of Health's National Institute on Aging.