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.

References
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
.

Dr Erik Leipoldt has long been interested in the environment, bioethical issues and disability. Currently he is working on the idea of disability experience as a guiding story towards...