6 August 2013
Nelson Mandela may not be aware of it but he has got us talking about death; something we have never had the courage to do before. This is certainly a discussion he wanted us to have. As President of the country he appointed the South African Law Commission to write a report on end-of life issues, and it was Nelson Mandela himself who tabled this in parliament.
It is reasonable to deduce that he either supported the recommendations of the report or at the very least recognised the need for a discussion on this very complex moral issue.
Since I founded the organisation DignitySA, I have been inundated by dozens of stories similar to the day-by-day accounts we are hearing of Nelson Mandela’s sad end. The most common story I hear is from children describing the humiliating and undignified deaths of their parents or grandparents who begged to die but the family was unable or unwilling to help. Elderly people frequently ask for a guaranteed way to end their lives because they are suffering so much. I recently met a 99-year-old woman who, although not terminally ill, is desperate for her life to end. She said every part of her body was failing, and she was in constant pain and discomfort. When asked if she was looking forward to her 100th birthday celebration with her great grandchildren, she replied, “When you want to die, milestones mean nothing.”
The suicide rate among elderly is three times higher than for persons under 65. There are many reasons why an elderly person may want to end their life, but in many instances I’m sure it is because they want to do it while they are still capable of doing so. There is a tendency to pay little attention to them and to take the attitude that they were going to die anyway. But suicide attempts can go horribly wrong and people can end up in a worse condition. Without the control and guarantee of an assisted suicide, elderly people often resort to means such as stopping to eat, cutting their arteries, hanging themselves or jumping from heights;. These are neither painless nor dignified ways to end life.
Many people have dealt with their loved ones’ death alone and in anguish. Some feel tremendous guilt at having assisted them to die; some feel even greater guilt for having ignored their pleas and prolonged their suffering.
Like so many others I too have a story. At 84, my mother was diagnosed as terminally ill with secondary cancers. She knew the ghastly death that awaited her and decided go on a hunger strike to end her life. If you stop eating there is only one possible outcome – you die. She hand wrote a Living Will requesting those close to her to not force feed her, give her medication or take her to hospital. Because of her very frail state she was certain that she would only live a few days. But even as a medical doctor, she got it wrong: after 5 weeks of drinking only a glass of water each day, she was still alive and was experiencing precisely the ghastly death she went on a hunger strike to avoid. She was unable to move her arms or legs and when I touched her skin it bruised; she was essentially decomposing in her own bed and certainly incapable of ending her life without assistance. I believe any humane person would have done what I did and succumbed to her pleading.
I know there are many people who have had similar experiences to mine, the only difference being that I wrote a book about it. In many ways I feel that my book has become their book, the story they are reluctant or afraid to talk about.
Our society avoids talking about death. We may say whether we want to be buried or cremated or what we want done with our ashes, but we steer clear of the more complex issues, such as what should happen if we are on a life-support machine, or we are terminally ill, or develop Alzheimer’s disease. Openly talking about dying and sharing our stories must help those who are suffering by knowing they are not alone. It will also help prepare each one of us for when we have to face the difficult decisions for ourselves.
But modern society is now embracing issues that have previously been uncomfortable to deal with such as sexuality, gay rights, AIDS, abortion and drug abuse. These are no longer taboo subjects, but are subjects for dinner table conversations and classroom discussions. Such opening up has surely resulted in a better educated and more understanding society. It’s time to open the public’s eyes to the issues surrounding death, and encourage debate for a change in the law.
In countries where the law has changed to allow for assisted deaths, the number of elderly suicides has dropped dramatically; the implication being that because the option of an assisted death is available an elderly person is more likely to hold on to life knowing they have that option rather than to try to end it while they are still capable. I know my mother would never have embarked on her ill-fated hunger strike if she had known she had the option of an assisted death.
Switzerland, The Netherlands, Belgium and Luxembourg now have laws that allow for assisted deaths. In addition, four states in the United States have such laws (Oregon, Washington, Montana and Vermont). The ‘Assisted Dying Bill’ was tabled in the House of Lords in Britain last month. In South Africa, the organisation, DignitySA, is seeking a law to allow for legalised assisted deaths under precisely defined criteria. These criteria are that it is a free choice; they must be of a sane state of mind, terminally ill with a less than six months’ prognosis, and two independent doctors must have confirmed that these conditions have been met.
Some doctors are already helping their patients to die. I think it is generally accepted that this is happening all over the world. These are compassionate doctors who are committing acts of kindness, although under current South African law they are also committing crimes. They shouldn’t have to act outside the law.
I am sure that throughout humankind’s history this has happened. I don’t think it is happening more than in the past; it’s just that today people are more willing to discuss the issues of death and as a result these stories are being heard.
A significant consequence of a change in the aw will be that a terminally ill person can be certain that their doctor will help them to die if they choose it and need assistance. As the law stands at present, a person is gambling with their doctor, not knowing for sure whether they will help or not until the time comes, by which time it is often too late to find a doctor who will.
The issues that the Mandela family now face are far more common than many think. We should be asking the question: what happens when it’s my turn?
Nelson Mandela has opened our eyes to the issues surrounding death and dying. No humane person can be unmoved by the suffering and discord Mr Mandela’s family is now undergoing. I believe such painful family dilemmas could be avoided with clearly defined laws in place.
Will Nelson Mandela’s final days be a call to society to open the debate that he himself wanted us to have?
Sean Davison is on the Executive Committee of DignitySA. You can follow DignitySA on Twitter @DignitySAfrica