Nelson Mandela’s illness illustrates the problem with lack of end-of-life planning

Viji Sundaram | 8/1/2013, 6 a.m.

For weeks now, the media has been pouring out news about former South African President Nelson Mandela’s illness and repeated hospital stays.

Meanwhile, the South African government has been saying for days that Mandela — who turned 95 last week — is in “critical but stable condition,” possibly suggesting he is on life-support machines.

According to South African legal experts, it is very difficult for someone as visible as this global icon to do advance care planning for the end of his life. Yet planning ahead with written forms is just what more and more people will have to do in an era of high-tech medicine and potentially unnatural life prolongation.

No information is currently available as to whether the human rights icon ever wrote a so-called “advance directive,” or chose a health care proxy — someone to make medical decisions for him if he became incapacitated.

Few Americans Have Written Wishes

A large majority of Americans have not written an advance directive or even told a loved one what they do or don’t want done medically at the end of their lives. That’s mostly because they don’t know they can, say experts in palliative care and related hospice care.

Do they want a feeding tube? Do they want to be hooked up to a ventilator? Do they want more surgery, even if the benefits may be questionable?

At a New America Media training program for ethnic media reporters at the Stanford University Medical Center July 11-12, sponsored by the California Health Care Foundation (CHCF), journalists heard from doctors, caregivers, health-care advocates, social workers and chaplains about the availability of palliative care and the importance of letting a friend or family member know the answers to these and related questions well ahead of time. They also learned about forms people can fill out and revise at any time if they changed their minds.

During the educational program, the reporters learned the difference between hospice care and palliative care. Palliative care — which includes hospice — focuses on relieving symptoms related to severe chronic illnesses.

Hospice care is provided in the last six months of terminal illness, when curative medical treatment is no longer beneficial.

“Hospice care and palliative care may be terms many people are not familiar with,” noted Emma Dugas of CHCF, which has developed and funded extensive studies on palliative care.

No Culture Wants Futile Medical Measures

The CHCF survey also shows that a majority of people in all ethnic groups prefer that doctors not take futile, heroic measures to keep them alive. But there was a significant gap between the 75 percent of white non-Latinos who said they do not want such invasive procedures and smaller majorities in other groups (58 percent of African Americans, 60 percent of Latinos and 67 percent of Asian and Pacific Islanders).

Three out of four African Americans surveyed led the other ethnic groups in saying that being “at peace spiritually” in their final days is “extremely important.” Latinos were close behind at 71 percent.