The hour of my death

The issue of euthanasia is in the news again after deaf Belgian twins, who were also going blind, were granted their wish to end their lives.

Below is an article from Health24, which takes a closer look at this issue and whether we have the right to decide the hour of our own death.

John* wants to die. Today. He is wracked by pain and nausea and the only prospect he has is that these will get worse. He has said his goodbyes, sorted out his affairs. His every breath is a torture to himself and those around him. But John's dying wish, that someone ends this misery, will not be granted.

Because life is sacred. So the law says. And the Bible. Anyone helping him escape this hell would be accused of murder. Because euthanasia* is seen as the thin edge of the wedge of people playing God. Because we have to bear our earthly sufferings to the last dregs. Because the Hippocratic Oath states that a physician should "practice and prescribe to the best of his/her ability for the good of the patients, and to try to avoid harming them".

When he needs us most, we abandon Jack to his miserable fate. We wouldn't do that to a dog. So why do we do this to him? And is there an alternative?

Euthanasia** hits the headlines every few years when desperate family members apply to have life-support systems switched off for loved ones who have been in comas for decades. Or to have feeding tubes removed. The stories of Terry Schiavo and Eluana Englaro are typical: there is no chance of recovery, they are deemed to have no quality of life, and their cases reached the higher courts of their respective countries. Schiavo was granted the right to die, and Englaro's eventual death provoked a constitutional crisis in Italy.

The main issues boil down to the following:

  • Does someone have the right to choose death?
  • What are the ethical issues at stake?
  • Can criteria be determined to justify assisted suicide?
  • What does the future hold?

Whose life is it?
"It's mine," says Magda* (74). She has made seven copies of her living will and distributed them to family members, her doctor, her friends and her attorney. In it she clearly states that she is not to be kept alive by machines under any circumstances, and that pain-relieving treatment should not be withheld, even if it should hasten her death.

"To me life has already ended when I have no quality of life left. A life devoid of joy and hope is simply not worth living and I want no part in it. In fact, although it sounds a bit grisly, my ideal end would be an assisted suicide, done while surrounded by friends and family. I really am not afraid to die."

But not everyone agrees that the decision is hers to make.

"Suffering is simply part and parcel of life on earth," says Professor Nico Koopman, theologian from the University of Stellenbosch. "But God is with us in our suffering and we are not alone. The suffering person also has a right to life and through suffering we often grow spiritually. God gives knowledge and insight to medical personnel to relieve people's suffering."

"Naïve, semi-romantic and semi-mystical," is how Professor Anton van Niekerk, professor in philosophy at the University of Stellenbosch, describes the idea that God alone should decide when there is life, and when your time has come.

In many ways, according to Van Niekerk, science has surpassed these perceptions: people are now kept alive artificially by technology, or brought to life by means of new reproductive technologies, both of which were obviously unknown until modern times.

"Thou shalt not kill," says the sixth commandment. And many religious people uphold this as the basis for their beliefs against assisted suicide**. But, points out Michael*, a former Methodist minister, "this does not apply in the case of war, or revenge, the death sentence, or self-defence. The sanctity of life is therefore not absolute in people's eyes."

So people happily do make the decision to end lives in our society – just not always their own.

The ethical issues
It is difficult to establish common ground when it comes to identifying ethical issues surrounding assisted suicide. Is the decision personal or political, or somewhere in between? Or does it depend on the situation in which you find yourself?

"People have been made to fear going to 'hell' if they kill themselves," says Michael. He stresses that there are legal and insurance issues at stake. Many life insurers will not pay out if a person has committed suicide. The taboo around suicide also affects family members, motivating some desperate people to make their deaths look like car or railway accidents.

We're back to the question of who gets to decide to end a life.

Like Magda, Michael feels that choosing death by dignity is a positive and empowering decision made by a dying person who doesn't have many choices left. It’s not an academic discussion to him. Michael helped his father, a retired minister, die. He was suffering from a particularly brutal and debilitating terminal disease. He has always felt that it was the right thing to do.

For others the issue is not merely personal, but forms part of a wider social backdrop.

"We don't take decisions in a vacuum," says Koopman. "The societies in which we live influence our decision-making very greatly.”

There are two central ethical questions, he says:

  • What sort of society do we want to be part of?
  • What sort of people are we?

"We are on dangerous ground when we bow down to the idea that the norm in our society is someone good-looking and young, someone healthy, someone wealthy. A suffering, elderly person has just as much right to life as anyone else does. Where do we draw the line when we want to euthanise people who fall outside of this norm?"

The philosopher sees things in a - well, in a more philosophical way.

"The central moral question is not about the worth of human life, but about the right to choose assisted suicide in a democracy. I think that included in the rights of a democracy, is the right to harm ourselves – to the point of suicide."

However, the fact that we have the right to do something doesn't mean it is always morally right.

This raises the issue that scares people: that assisted suicide might become a way of getting rid of people who have become inconvenient.

Former British Prime Minister Gordon Brown said the Labour government under him would not allow euthanasia in the UK, as it may put pressure on elderly people to end their lives if they felt they were a burden to their relatives. In other words, it would no longer be a right, it would become a duty.

So are there any guidelines or common ground?

Is assisted suicide ever justified?
Unbearable pain. No hope of recovery. Who would not wish for an escape from this? Is common ground not to be found in being humane?

Koopman claims to be sympathetic about people being unable to continue suffering. Suffering should be made as bearable as possible, he says; and he claims to respect those who get to a point where they feel they were not created for this suffering. While the church will not condone active euthanasia, he says that people do have a right to refuse treatment.

He speaks of a continuum here, where active assisted suicide is the one extreme, and the refusal of treatment is the other.

"This is holy ground. Each person must make his/her own decisions here. No one else can do that on their behalf."

There are many ways to end a life: accelerating opioids for pain, forgoing life-sustaining therapy, voluntarily stopping eating and drinking, and terminal sedation in an attempt to respond to unacceptable terminal suffering.

Van Niekerk is very clear in stipulating the criteria for allowing assisted suicide:

  • The patient must be mentally competent at the time they make it clear that’s what they want.
  • The patient must want to die and be in irreversible and unbearable pain.
  • Palliative care no longer is of much help, or the patient is no longer interested in it.
  • The patient must request euthanasia several times, and must have the right to change their mind right up to the end.
  • The patient must preferably do it by themselves.

Magda agrees with most of what Van Niekerk says – except that she wouldn't mind having professional help at the end.

"I see no point in any unnecessary suffering. I want to die when my life no longer has meaning, when I can no longer do any of the things I enjoy, and when I feel I have become a burden to those I love," she says. "I want my end to be painless, and if I cannot bring this about by myself, I will enlist help."

Michael sees things in a similar way: being alive is not merely a biomedical definition. It gets to a point, he says, where we say to ourselves "this is not life: life as I defined it, is over”. He stresses the importance of people stipulating in a living will what the things are that make their lives worthwhile. It makes it easier to make the eventual decision.

This opens a whole new debate on determining quality of life. Just being alive in itself is no longer seen by many people as a reason to continue living. Their lives have to have meaning. But that means different things to different people.

Every day doctors are required to make snap decisions that could mean the difference between life and death. In major urban centres, strict guidelines now exist, but in rural areas of South Africa, a lack of equipment, staff and resources often make it necessary for fairly inexperienced doctors sometimes to make difficult decisions.

"But I have to hand it to them, they really try their best," says a former rural SA doctor, now working in the UK. He may not be named for professional reasons.

"There are criteria that exist when making a decision on which of several patients will be treated if there are four patients who need the intensive care unit, and only two beds available. Age and state of health come into it." It might not be active euthanasia, but it is an extremely difficult decision that could result in death. That is a topic for another article.

He added that when he studied, there was no training given on dealing with the death of patients, breaking the news to relatives, or the issue of dying in general.

Death really is one of the last taboos that exist in our society and this stops us from facing and considering the uncomfortable fact that we are all going to die. Just think of how many people die intestate – not because they want to leave financial chaos in their wake, but because making a will means facing their own mortality.

What the future holds
The separation of the church and the state becomes very clear when courts have to decide about someone's right to die. The Italian government took on the Pope, and granted Eluana Englaro the right to die. But even so, assisted suicide is a long way off from disconnecting feeding tubes gradually, which is what happened in her case.

In developed countries, the trend seems to be moving towards the legalisation of assisted suicide. While many countries have no specific laws governing this, others do. Even so, prosecutions seem to be fairly rare, and if the cases reach court, the sentences are lenient.

The only four places, (according to that today openly and legally, authorise active assistance in dying of patients, are:

  • Oregon (since l997, physician-assisted suicide only);
  • Switzerland (1941, physician and non-physician assisted suicide only);
  • Belgium (2002, permits 'euthanasia' but does not define the method);
  • The Netherlands (voluntary euthanasia and physician-assisted suicide lawful since April 2002 but permitted by the courts since l984).

"In 20 years' time, people are going to be unable to believe that we were so barbaric as not to allow assisted suicide for the terminally ill," says Magda.

Changes to laws usually follow several years in the wake of changing public opinion. It is when something becomes a widespread practice that laws become outdated, and the number of prosecutions drop. There were, for example, very few prosecutions under the Group Areas Act in the year before it disappeared.

But whether society will be able to reach common ground on who gets to make the decision to end a life, and when this might happen, remains to be seen.

And none of this is of any help to John, who wants to die today.

(Susan Erasmus, Health24, updated January 2013)

*Not their real names.

**Some quick definitions of terms from the Merriam-Webster Dictionary:

Euthanasia: the act or practice of killing or permitting the death of hopelessly sick or injured individuals (as persons or domestic animals) in a relatively painless way for reasons of mercy.

Assisted suicide: suicide committed by someone with assistance from another person; especially physician-assisted suicide.

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