We need a society which cares, not kills

A quadriplegic who has just published a book on attitudes to euthanasia in the Netherlands and Australia asks whether it should be legalised in a caring society. 
Erik Leipoldt | Jul 14 2010 | comment  

Erik Leipoldt acquired quadriplegia in 1978 after a diving accident. He has just published a book on attitudes of Dutch and Australian people with quadriplegia towards euthanasia. Here he asks whether we really need to legalise euthanasia.

In Australia and other Western countries, suffering is a subjective and private experience leading to the invocation of individual rights to do away with one's life should it become unbearable. The life of a person who suffers is of no consequence to others.

When we look closer, however, we see that this private domain is an illusion. Suffering is not an individual, isolated experience. No one is an autonomous entity. Suffering, and its amelioration, is largely a dynamic process involving others.

Here in Australia, as elsewhere, some press for legislation to provide euthanasia to persons of sound mind in response to “pain, suffering or debilitation” that is judged “considerable” in the presence of a terminal illness. Vague and broad as this description is, it invites anyone with a heart to say “yes, of course we should help”.

But what is suffering? And what is the difference between killing the sufferer and attending to the sufferer's needs?

It is in interactions between people, in injurious events, and in our values and practices that suffering is created and experienced. Pain is experienced differently by people who have good care and by people who feel abandoned. Mental anguish can arise from unresolved conflicts in close relationships, even relationships which are far in the past. Feelings of unbearable dependence or loss of dignity can be provoked by the attitudes of others as well as our own.

Being inherently social, human beings feel best under conditions of positive, caring relationships. For example, in a study that I conducted involving people with quadriplegia in the Netherlands and Australia, it was only those who lacked supportive relationships who wanted euthanasia for themselves.  

This idea of suffering as a social, rather than a purely private, experience can help us decide what we will do about it. The palliative care journey is to address the person's suffering by caring for them. The euthanasia option is to do away with the suffering by killing the sufferer.

A bill presented recently in the parliament of Western Australia, where I live, attempts to accommodate both options. It tries to respect “consumer” rights to choose assisted death while acknowledging the value of palliative care. It attempts to address concerns often raised against state-sanctioned euthanasia by including provisions against profiting from a euthanasia death. It attempts to address concerns about exploitation by ruling out euthanasia for those who feel burdensome and those who are under 21. It attempts to ban euthanasia “tourism”. It involves a multi-tiered application and compliance process.

But experience shows that no safeguards are strong enough to hold out against an inevitable call from the public for a relaxation of the law to cover the “considerable suffering and debilitation” of people in these excluded categories.

In any case, is a doctor really able to assess whether someone wants euthanasia to stop being a burden to others? In the Netherlands safeguards have not stood in the way of, for example, 12-year-olds applying for euthanasia. People who are not terminally ill have ended their lives under euthanasia provisions.

At the same time, people fear slow deaths on machines or after exhausting treatment. And anomalies under the present regime do exist where medical staff actively hasten death illegally. Does that mean we should simply make this legal?

We should really ask, is it responsible to hurry to the legal euthanasia option, before, as a society, we have done everything possible to practice all the care and support that we are capable of. Patently, we are a long way off this point.

We do not live in caring societies. We live in societies where social bonds are fraying. Individual autonomy, contractual relations between rational consumers, and consumerism get in the way of us acting as social, caring, human beings.

Legalising euthanasia fails to address the suffering that underlies patients’ requests for it. Often cited are: dependence on others, pain, and loss of dignity. All of these can be ameliorated through good care. Dependence on others is only undignified in the absence of caring support. Of course there may always be pain that cannot be treated other than by sedation, but extreme cases make bad law. In the end, there are no perfect solutions.

For some euthanasia is compassionate because it avoids situations where people end their own lives. But this is misreading the nature of compassion, as well as being unrealistic. Compassion requires personal engagement with the suffering of another - the “cares” of care – in an imperfect world, something which euthanasia practice does not do. Euthanasia is basically a contractual arrangement between detached individuals, within certain rules, to end a life. It is a technical procedure, not an act of compassion. 

An ethics of care pays attention first of all to the need underlying the request. it accepts responsibility for meeting that need and attends to it competently (Tronto, 1993). It is a participative two-way relationship with, in this case, a terminally ill patient. This care is not paternalistic and involves being with the suffering person, using thoughtful communication, trust, love, respect, and even humour. These help to preserve meaning and purpose in the end stage of life which is often seen as meaningless in our rationalistic world.

Another response is to encourage both options: palliative care and euthanasia. But before we consider giving State sanction to euthanasia let us first become a caring society. We might then find that the question no longer arises. There is a lot of work to be done. At the present, most of us continue to devalue aged, frail, and highly dependent people who embody those parts of the human condition that we do not like. In a utilitarian consumer society, state-sanctioned euthanasia carries risks of serious misuse.

Legislatures should reject legalised euthanasia as an inappropriate route to relief of suffering. But they should also ask questions about their own health care policies and practices as potential contributors to requests for euthanasia. How to treat every life as valuable and deliver excellent care? How to strengthen palliative care?

If we paid attention to human needs at every turn; if we took responsibility for them; if we did so competently and in participation with patients, what would that look like?

The character of a nation is revealed in the way it treats its most vulnerable people. Terminally ill people are highly vulnerable. Rejecting state-sanctioned euthanasia is not insensitive. On the contrary, it should affirm our determination to work towards a caring society.

Leipoldt,  E.A. (2010) Euthanasia and disability perspective. VDM Verlag. Saarbrucken. Germany.
Tronto, J. (1993). Moral boundaries. A political argument for an ethic of care.

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