The right to die: Archbishop Tutu provides guidance on the last medical, legal and ethical frontier

By IAfrica
In South Africa
Jul 14th, 2014
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It is poignant that as Nelson Mandela lay in a “permanent vegetative state” towards the end of his life in June last year, doctors advised his family to turn off his life support machines. It was the ever-progressive and forward-thinking Mandela who had understood the urgency of end-of-life decisions and who in 1998 mandated the Law Commission, chaired then by the late Chief Justice, Ismail Mahomed, to compile the report and draft legislation on the issue.

As Mandela lay on his deathbed, his anguished family clearly grappled with the traumatic decision about what to do. The “Certificate of Urgency”, recommending that life support be switched off, formed part of a legal document dated 26 June and lodged at the Eastern Cape High Court by family members seeking to have the remains of Mandela’s children returned to Qunu from Mvezo where they had been reinterred.

The court document read, “The Mandela family have been advised by the medical practitioners that his life support machine should be switched off. Rather than prolonging his suffering, the Mandela family is exploring this option as a very real probability”.

The timing of Tutu’s statement in support of assisted dying at the weekend is crucial. It comes, as The Observer noted, at the start of “a momentous week in the assisted dying debate [in the UK]. On Friday the House of Lords will witness one of the most significant moments in recent history when peers debate an assisted dying bill proposed by the former lord chancellor, Lord Falconer. A record number of peers – 110 so far – have registered to speak.”

Significantly, in his piece supporting assisted dying also for The Observer, Tutu pointed out that Friday 18 July – when the debate will take place – is Nelson Mandela’s birthday.

Tutu’s moral leadership on the issue will also contribute enormously to deep engagement with the final medical and legal frontier – the right of an individual to choose to die with dignity – a contentious issue internationally.

The Anglican Church in South Africa last debated the issue of euthanasia and assisted dying about 80 years ago. The debate in church circles in the UK has been revived with the former archbishop of Canterbury, Lord George Carey, speaking out in favour of Falconer’s bill while Justin Welby, current archbishop and the head of the Church of England is opposed to it.

Each province of the Anglican Church of South Africa is independent and may take its own position on the matter.

Speaking in her personal capacity and also as a patron of Dignity SA (an NPO formed in 2011), the Reverend Ingrid Andersen of KZN said we needed to thank Tutu for speaking out on a “highly controversial and easily misunderstood topic”.

“This is not just about euthanasia. It is tempting to reduce this issue to a simple one – the headlines say that ‘Tutu is calling for euthanasia’. But what Tutu and Dignity SA are saying is far more challenging and far more complex. They are part of an international groundswell of debate and discussion around these issues. They are asking society to question how we treat the dying process. They are asking us to think about how we want to die, and the role we want the medical profession to play in that process. As a society, we shy away from discussing death. As a result, we are unprepared to deal with important decisions when death happens to us or to those we care for,” Anderson told The Daily Maverick.

Writing in The Observer Bishop Tutu said that as he had grown older he had begun to explore issues of life and death and to question “what it means to be alive. What constitutes quality of life and dignity when dying? These are big, important questions.”

“I have realised that I do not want my life to be prolonged artificially. I think when you need machines to help you breathe, you have to ask questions about the quality of life being experienced and about the way money is being spent. This might be difficult for some people to consider,” wrote Tutu.

Tutu lashed out at President Jacob Zuma and other political leaders for posing for photographs and television cameras with a clearly ill Mandela in April 2013 – two months before he became bedridden.

“What was done to Madiba was disgraceful…You could see Madiba was not fully there. He did not speak. He was not connecting. My friend was no longer himself. It was an affront to his dignity.”

Tutu said he had been particularly touched by the story of a young, 28-year-old Port Elizabeth man, Craig Schonegevel, who “self delivered” on 1 September, 2009 after his request for an assisted suicide with the Swiss organisation, Dignitas – the only one in the world to offer foreign nationals an assisted suicide – had been turned down. Craig had been diagnosed with the extremely variable genetic disorder Neurofibromatosis type 1 (NF1, also known as Von Recklinghausen disease) when he was only a year old.

Craig had imagined his last 24 hours with his parents beside him thus: “A time of total peace with mind and body. Not to have a ‘bedtime’ as such but if any one of the three of us falls into a sleep it would be ok. To keep conversation in line with what our hearts and heads are thinking. To listen to my favourite classical music albums/pieces, whether in the background or other times, as the focus. To look out on nature (the Alps hopefully) or a picturesque view and just hold one another or listen to the music quietly. To just lie down at times holding hands, breathing…To talk of how we will hold each other until we meet again.”

When Dignitas turned down Craig’s request for an assisted suicide he attempted to take his own life on 14 August 2009, swallowing 49 sleeping pills. He miraculously survived and his traumatised parents were left to deal with the aftermath. Craig finally succeeded, ending his life, alone, behind the closed door of his bedroom of his parents’ Port Elizabeth home on 1 September, 2009.

I spent six months reading Craig’s personal diary, letters and emails as well as interviewing all those who orbited this remarkable young man during the last months of his life in preparation for his book, The Last Right – Craig Schonegevel’s Struggle to Live and Die with Dignity (Jacana).

I came to know, love and respect this gentle young man who suffered severe and relentless pain – as well as countless invasive medical procedures and interventions – his entire life. I also came to know his shattered parents, Patsy and Neville, who made the heart-aching decision to support their only son when he made the lucid and informed choice that an assisted suicide was what he wished for himself.

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Photo: Craig Schonegevel shortly before his death (Picture Sandy Coffey).

It was clear during my research that without any protocol or guidelines to deal with a decision by a terminally ill person to end their life, family and friends were deeply traumatised.

“Our legal system denied him and his family this dignity,” Tutu wrote this weekend.

Reverend Ingrid Andersen said that as a priest over the past ten years she had journeyed with dying people who were in distress and agony despite palliative care and “prayed for them to be released from their suffering.”

“The troubling fact is that the medical profession often tries to prolong life at any cost, while this is not always in the best interests of the patient. Our decisions should not be made for us when we are at our most vulnerable. They should not be made by the practitioners of modern medicine who can save lives almost miraculously – but who should also consider if they should always do so. We have the human right to choose how we die – our voices should be heard. It is a moral issue and one of acting out of compassion.”

Professor Willem Landman of the Ethics Institute of South Africa and also one of the founding members of Dignity SA, said that the Department of Health had simply ignored the Bill for the past 15 years.

“We are dealing here with people’s deep-seated beliefs about the value of life and the purpose of suffering. But disagreement cannot simply lead to an ethical stalemate –we need to find common ground in the spirit, values and rights embodied in the Constitution,” said Landman.

In a summary to Report 86 presented to the then Minister of Justice Dullah Omar, the Law Commission stated: “The advances made in medical science and especially the application of medical technology have resulted in patients living longer. For some patients this signifies a welcome prolongation of meaningful life, but for others the result is a poor quality of life which inevitably raises the question whether treatment is a benefit or a burden.”

The Law Commission report suggested the urgency of the issue stating that matters concerning the treatment of terminally ill patients were “at present being dealt with on a fairly ad hoc basis, there is some degree of uncertainty in the minds of the general public and medical personnel about the legal position in this regard. Doctors and families want to act in the best interest of the patient, but are unsure about the scope and content of their obligation to provide care.”

There is an urgent need for clarity, not only on matters of assisted dying, but other legal issues surrounding end-of-life decisions. Current laws do not allow for the enduring power of attorney – something addressed and made clear by the Bill. At present power of attorney ceases to apply when an individual becomes “mentally incompetent”.

At present experts are working on separating Advance Directives (a document stating what action may or may not be taken by medical professions) from the separate matter of assisted dying as referred to in the End of Life Decisions Act.

Further confusion exists as South Africa’s laws are not compatible with the guidelines as set out by the Health Professions Council of SA (HPCSA) which while it finds euthanasia “unacceptable” recommends that “patients be given the opportunity and be encouraged to indicate their wishes regarding further treatment and to place in writing their directives for future care in possible critical circumstances”.

According to the Medical Protection Society while “advance directives” are “ethically acceptable are not currently recognised as legally enforceable instructions in terms of South African law at it is currently not possible to go to court to enforce an advance directive. It is, however, generally accepted as permissible to comply with an advance directive where the patient is in a permanent vegetative state.”

According to the Medical Protection Society “The South African Medical Association (SAMA) as well as the HPCSA have both issued guidance stating that patients have a right to refuse treatment. These guidelines also state that patients who have advance directives in place have constitutional rights to expect their living wills to be hounoured.”

It is thanks to Nelson Mandela that we already have an entire Act drafted and waiting to be debated and enacted. If only someone could find out where it is in the system. And it is thanks to Mandela’s contemporary and good friend Desmond Tutu that this vital debate finally gets the national attention it deserves.

In 1977 American literary essayist Susan Sontag wrote a ground-breaking text titled Illness as Metaphor. In it she reminds us that “illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

What Tutu’s statement at the weekend also forces us to do is begin to speak openly about death, a fate that awaits us all. DM

For information on advanced directives and other matters related to end-of-life decisions visit http://www.dignitysa.org

Photo: Nelson Mandela (R) and Archbishop Desmond Tutu (L) share a laugh during the opening of a Walter and Albertina Sisulu exhibition at the Nelson Mandela Foundation, Johannesburg, South Africa, 12 March 2008.  Archbishop Tutu gave a speech asking the nation to rally together against a backdrop of increasing in-racial clashes and corruption in government.  EPA/KIM LUDBROOK


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