Madiba’s illness has to get us talking about issues of death
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, though it 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 he who tabled it in parliament. It is reasonable to conclude that he either supported the recommendations of the report, or at the very least, recognised the need for a discussion on this 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 in hospital. 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 whose family was unable or unwilling to help.
Legally, the matter is straightforward if the person has written a Living Will, or advanced directive assigning medical power of attorney to another person.
A person can state in a Living Will that they do not want to be kept alive by medical intervention. No one can be forced to be treated, even if the treatment is life-supporting. The same principle applies to decisions on behalf of others, although one would need an advance directive indicating that the person would not have wanted such life-support treatment.
If there is a Living Will, regardless of the family’s desire to hold on, the loved one’s decision is what matters most. Freedom of choice is the hallmark of our identity. If a person chooses not to have a long, protracted death, or be sustained by a life support system, their decision should be respected. No matter how painful, it is our duty to honour their wishes.
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 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 a younger person 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 can.
There is a tendency to pay little attention to them and take the attitude that they were going to die anyway, and that the suicides of younger people are more tragic. But suicide attempts can go horribly wrong. Also, without the control and guarantee of an assisted suicide elderly people often resort to means such as stopping eating, cutting arteries, hanging or jumping from heights – not painless or dignified ways to die.
Many have dealt with their loved ones’ death privately, alone and in anguish. Some are feeling tremendous guilt in having assisted them to die; some are feeling 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 Pat was diagnosed as terminally ill with secondary cancers and knew the ghastly death that awaited her. She decided go on a hunger strike to end her life. If you stop eating there is only one possible outcome – you die. She wrote a Living Will by hand, requesting those close to her to not force her to eat, 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 she, a medical doctor, got it wrong. After 5 weeks of drinking only a glass of water a 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 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, the only difference between us 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 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 the 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 us for when we have to face the difficult decisions for ourselves.
Modern society is now embracing issues that have previously been uncomfortable to deal with such as sexuality, gay rights, AIDS, abortion and drug abuse. They are no longer taboo subjects; they are talked about at the dinner table and in class room discussions. This candour has surely resulted in a better educated and more understanding society. It is time to open the public’s eyes to the issues surrounding death, and encourage debate on 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 is 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 try to end it while they are still able.
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 have laws that allow for assisted deaths. In addition, four states in the US 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: that it is the individuals’ free choice, that they must be of a sane state of mind and terminally ill with a prognosis of less than six months, and that two independent doctors have confirmed that these conditions have been met.
Some doctors are already helping their patients to die. 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. This is yet another reason for a law change: they shouldn’t have to act outside the law.
I don’t think it is happening any more now than in the past. It’s just that today people are more willing to discuss death and, as a result more such stories are being heard.
A most significant consequence of a law change is that a terminally ill person can be certain that their doctor will help them to die if they choose to go this route and need assistance. As the law stands, 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 one who will.
The issues that the Mandela family now face are far more common than we imagine. Must it take such a highly esteemed figure to bring them to the fore? Fewer people die peacefully in their sleep than we like to believe. Most of us will have parents and grandparents experience difficult deaths. We should now be asking the question: what happens when it’s my turn?
Mandela has opened our eyes to these issues. No humane person can be unmoved by the suffering and discord his family is undergoing. I believe such painful family dilemmas could be avoided with clearly defined laws in place.
Will Mandela’s final days be a call to society to open the debate that he himself wanted us to have?