Modern technology has kept Ariel Sharon alive in a permanent vegetative state since he went into a coma in 2006. Today, absent a living will and the appointment of a surrogate, Nelson Mandela’s extended family is grappling with difficult end-of-life issues without clear guidance. The fate of these two larger-than-life leaders points out clearly what Y Collaborative wants everyone to realize. The absence of one piece of paper can make all the difference between a peaceful death with dignity and clear direction for family members. With a brief living will: clarity and peace. Without it: indecision and families with no peace.
The following article from The New York Times highlights the challenge.
“For Mandela’s Kin, Laws Offer Scant Guidance on End of Life” –New York Times, July 11, 2013
JOHANNESBURG — The family of Nelson Mandela, who has been lying at the edge of death in a South African hospital for more than a month, may in the days or weeks to come face the same awful decision that has confronted numerous other families in an age of life-sustaining miracle machines — when it is time to say “enough.”
Medical experts in and outside South Africa who are not involved in his care have taken the government’s cryptic statement — that Mr. Mandela is in “critical but stable condition” — to mean that he is being sustained by equipment, which given his advanced age could present his relatives, doctors and the country with a wrenching choice about how long to keep the 94-year-old alive.
Any decision would be made in the glare of an international spotlight and would involve an extended family that has shown itself to be fractious about decisions regarding inheritance, his eventual burial location and his legacy. And they would do so under a set of South African laws and court precedents that leave some unnerving gray areas over who might make the ultimate decision.
In cases where the patient has left a living will or has appointed a surrogate to act on his behalf, the path is clear. But in the absence of a living will, or if no surrogate has been chosen or there is more than one surrogate — like siblings or a sprawling extended family like the one Mr. Mandela has — South Africa’s law is not entirely clear, legal experts here say.
“It is not easy when you are confronted with the internal wrangling within the family that has spilled into the public domain,” said Nomboniso Gasa, a political and cultural analyst in Johannesburg. “Still, despite all the contention and all the fights the Mandelas seem to be having, I think they are quite aware that an end-of-life decision may need to be taken. But the high profile makes it so very difficult.”
This, too, is an age when ventilators and feeding tubes and other high-tech machines can keep people — even those in a permanent vegetative state — alive for months and even years, as in the case of Ariel Sharon, the 84-year-old former Israeli prime minister who has been in a coma since he suffered a devastating stroke in 2006.
Not enough is known about Mr. Mandela’s medical condition to know exactly how his case might fall under South African law, experts in medical legal issues say. A court affidavit filed in June in a dispute within the Mandela family over where the former president might be buried claimed he was in a permanent vegetative state, but both family and medical team members have since denied this.
Indeed, family members and friends who have visited him in recent days say that Mr. Mandela is sometimes awake, smiling, communicating with his eyes, even attempting to talk. President Jacob Zuma, who visited Mr. Mandela as recently as Wednesday, said he was now responding to treatment.
Still, the anti-apartheid leader’s condition is undeniably grave, and there is a great deal of skepticism about what the government and the family are saying about his condition.
“I believe, personally, that there is a lack of honesty in this matter,” said Cheryl Webb, a counselor for the Family Law Clinic in Cape Town who has worked with families in similar situations. “You just get the feeling that the truth is not being told. We have elections coming up soon. There is talk of absolute chaos in the country after Mandela passes away. There are so many factors.”
Such sentiments are not unusual.
“Not long ago, I was told authoritatively, hands on heart, that Mandela had died by people who knew people,” said Bonita Meyersfeld, director of the Center for Applied Legal Studies at the University of the Witwatersrand in Johannesburg. “There is a great deal of misinformation. Nelson Mandela is an icon, but this time he is an icon for misinformation and not being told things.”
The Mail & Guardian, a South African newspaper, has reported that Mr. Mandela does not have a living will. His family has not denied that, although family members have largely declined to provide a detailed accounting of the issues surrounding his illness. Nor is it known whether Mr. Mandela has appointed anyone to act as his surrogate in life-or-death decisions — like his wife, Graça Machel — in the event he is not capable of making them.
The key case in South African law covering such end-of-life issues involved a general practitioner named Frederick Cyril Clarke, who went into the hospital in Natal Province in 1988 for an epidural to ease his chronic pain. He had a heart attack while undergoing the procedure and, by the time he could be resuscitated, was effectively brain-dead.
He was kept alive for four years. But in March 1992, his wife petitioned the courts to end her husband’s life-sustaining treatment. The court agreed, over the objections of the South African government. The doctor had “permanently lost the capacity to induce a physical and mental existence at a level which qualifies as human life,” the court ruled.
And so Dr. Clarke was brought home, where he died on Aug. 14, 1992. It was the first and still the most important court ruling on end-of-life issues in South Africa.
And it was Mr. Mandela himself who, while still president in 1998, appointed the South African Law Reform Commission to compile a report on end-of-life issues. It found numerous gray areas in the law that it recommended be addressed, going so far as to propose a draft law to fill in the blanks.
Such a law was presented before Parliament in 2000, but drew little support and was, as a result, ignored by the Ministry of Health after Mr. Mandela had left office, Willem A. Landman, executive director of the Ethics Institute of South Africa wrote in a 2012 paper called “End-of-Life Decisions, Ethics and the Law.”
Even the passage of the Health Care Act of 2003, which for the first time in South African law provided a definition of death — the cessation of all brain activity— did not clear up those legal issues.
The law does give doctors the ability to remove a patient from life support, even without a family’s consent, if a patient has a living will and if brain activity has ceased, said Pieter Carstens, head of the Department of Public Law at the University of Pretoria and an expert on legal medical issues.
“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,” Mr. Carstens wrote in an e-mail.
“It’s uncharted territory,” agreed Ms. Meyersfeld, of the University of the Witwatersrand.
Sometimes in such highly personal matters in South Africa, there is conflict between what the courts require and what traditional customs prescribe. But in this case, the two worlds agree.
“There is no specific customary law that speaks directly to this,” said Ms. Gasa, the political analyst. “What is sometimes the practice is that the clan gathers and there is a very simple discussion about how their beloved should be eased from suffering.”
If no consensus is possible and the medical team is convinced that lifesaving measures should cease, Mr. Carstens said, he would advise doctors to seek a court order. Whether any medical team would dare to do so in the case of a figure like Mr. Mandela is an open question.
“You want to make sure that everybody is comfortable, that is the goal,” Ms. Gasa said. “But is that possible in this case? That is the question. Can this be done now?”
Sheelagh McNeill contributed reporting from New York.