Erik Leipoldt 12^th May, 2001

Short paper adapted from an address at the invitation of the Anglican Social Responsibilities Commission on addressing the questions of "What do you mean by euthanasia" and "What is a good death in your view?"

Thank you for inviting me to speak on the questions of "what do I mean by euthanasia?" and "what is a good death in my view". I am someone who is privileged to have, so far, lived half my life with a fully functioning body and half with one that presents fairly severe limitations. I believe that this experience has helped me in coming to grips with some of the issues we are exploring tonight. Additionally, I am doing a Ph.D. in Human Services at Edith Cowan University on attitudes that people with disabilities have towards euthanasia. In that process I have interviewed, in-depth, some 29 people with quadriplegia and some others, in the Netherlands and in Australia. For the past nine years I have also been a part-time Board Member of the Guardianship & Administration Board and the work on this tribunal has also given me some insights in human suffering and how it is experienced by people who have disabilities and by those around them. I have also had brief experiences in psychiatric nursing and disability services and long-term involvement in disability advocacy. I am married and the father of two children.

What do you mean by euthanasia?‘Euthanasia’ as used in the public debate is often a confused concept even though most people can now confidently say that they know ‘euthanasia’ is Greek for ‘good death’. The term is used to describe many different kinds of interventions, and terminal illness may or may not be a factor in the minds of various people discussing euthanasia.

Yet it is important to be clear about what we talk about. If we include all interventions which may shorten life as euthanasia we would have no lines to draw anywhere about what may or may not be a permissible practice. And if we were not clear about what we mean by euthanasia when we discuss it, the debate around it would be very slippery and any outcomes of it would not necessarily be those we truly need. They may then even cause more harm than good.

It is clearly important therefore to require people to clarify what they mean when they seek to discuss euthanasia. Whenever I need to outline what I mean by euthanasia I have to draw on what different interpretations there are of it. In essence I believe that most often it is understood as an act by another to terminate someone’s life, with the actual intention of killing that person, usually for the stated purpose of relief of suffering.

I will now use Margaret Somerville’s (1993) definition. In doing this I use it to describe what I think euthanasia is or is not. I do not engage in a discussion here of what euthanasia should or should not be but to seek to clarify the uses of the term as a contribution to a broader debate.

EUTHANASIA IS AN INTERVENTION BY ONE PERSON, TO END THE LIFE OF ANOTHER PERSON, WHO IS TERMINALLY ILL, FOR THE PURPOSE OF RELIEVING SUFFERING , WITH THE INTENT OF CAUSING THE DEATH OF THE OTHER PERSON, EXCEPT WHERE THE PRIMARY INTENT IS EITHER TO PROVIDE TREATMENT NECESSARY FOR THE RELIEF OF PAIN OR OTHER SYMPTOMS OF SERIOUS PHYSICAL DISTRESS , OR NON-PROVISION OR WITHDRAWAL OF TREATMENT IS JUSTIFIED, IN PARTICULAR, BECAUSE THERE IS A VALID REFUSAL OF TREATMENT OR THE TREATMENT IS FUTILE.

As Somerville explains, this definition leaves a range of medical interventions outside the scope of euthanasia. Withdrawal, cessation or withholding of treatment and palliative care for instance are not euthanasia. In euthanasia the intention, in addressing suffering, is to kill the person. Whereas there often is a fine line in distinguishing between intentions, she argues that in euthanasia the directly administered substance is the sole cause of death with the clear intention to do so. In withholding or withdrawing treatment it is the actual ailment and the act of withdrawing treatment which kills the patient, while symptoms indicating suffering are being managed as best as possible. She emphasizes the importance of drawing a line perse as the interventions on either side of it are different in nature, not merely in degree. The first seeks to address suffering by killing the person, the second by treating it until treatment is futile and then managing the symptoms of suffering. To be clear: if withholding or withdrawing treatment is done in the face of further possible treatment to cure or relieve pain and discomfort, and without valid refusal of treatment, we may still speak of euthanasia and physician-assisted suicide.

And as someone has pointed out to me to use "primary intent" in this definition in "providing treatment necessary for the relief of pain or other symptoms of distress…" begs the question what the secondary intent might be? If it is to cause death then it may still be euthanasia. A clearer line would be drawn by simply stating that one intends to kill and the other intends to relieve suffering, even if this might mean a shortening of life. This is summed up in the title of a declaration on euthanasia entitled "Always to care, never to kill" (Ramsey Colloquiem, 1992).

Somerville’s definition includes a requirement for terminal illness and a motive of relief of suffering. Both the direct administration of a lethal substance to a person (euthanasia), and the provision of a lethal substance to a person by a medical practitioner (physician-assisted suicide) is covered. However, there are important differences between euthanasia and physician-assisted suicide to note. PAS requires a person who is physically able to take a substance, can be considered a more private act than euthanasia and one which may leave more control in the hands of the person who wants to kill themselves.

Further the definition covers voluntary and non-voluntary euthanasia. Firstly because of the difficulty in establishing true voluntariness and secondly, according to Somerville, to ensure that involuntary euthanasia (defined by her as "euthanasia … without the informed consent of the person subject to it" (p.5)) is recognised as occurring. In the Netherlands, she says, where some 1000 non-voluntary deaths through euthanasia were recognised in the so-called ‘Remmelink Report" (van der Maas et al, 1991), (named after the Committee Chairman investigating the Dutch practice of euthanasia) some doctors thought because euthanasia was implicitly a voluntary act, involuntary interventions to end life did not need to be reported! Therefore ‘competency’ to indicate one’s assisted death is not part of this definition as it does not reflect the practice of euthanasia, at least in the Netherlands, at the time of the "Remmelink Report" of 1991. I believe that a distinction needs to be made between non-voluntary euthanasia, which refers to acts without the consent of the person (as during a coma) and involuntary euthanasia which refers to acts contrary to the wishes of the person. I do not believe Somerville intends to include involuntary euthanasia in the definition.

The definition does not include the role of a medical doctor in effecting the death of the person who receives euthanasia. This role by the medical profession is often taken for granted but why indeed is that? Do we believe doctors are the most suitable people in this and should we consider what impacts there may be on individual doctors who perform euthanasia and on the profession as a whole?

I recognise this definition differs from that in the Netherlands or NT as well-known examples. Different practices occur in the name of ‘euthanasia’ and we have to have regard to them in exploring it.

A condition of terminal illness for instance has never been insisted on in the Netherlands where euthanasia has been legally tolerated for more than 25 years and this is continued in its present euthanasia legislation. Hence suffering outside the scope of terminal illness, including from fear of future deterioration from dementia, psychological distress and ‘tiredness of life’ have been used there as reasons for acts of euthanasia. Various proposals for euthanasia legislation in Australian legislatures have not always insisted on a condition of terminal illness either, although the Northern Territory Act did. Generally, the shortening and avoidance of what is seen as unnecessary suffering appears to be the central concern, whether one is close to death or not. To include terminal illness in the definition is however, reflective of Somerville’s position between "a very liberal pro-euthanasia position and a very stringent pro-life position" (Somerville, 1991, p.14), which she describes as the most honest "in that it best accommodates and even reconciles what we say and what we do".

The most often heard rationales for euthanasia include that since the life to be ended entirely belongs to the person to be killed they have a right to self-determination about when and how their life is ended. It is said to be an individual choice which has no ill-effect on others.

I believe that as our lives, and deaths, are experienced in relational settings that there is no such thing as an individual choice, in this context, without effect on others. I agree with Patricia Mann (1998) that individual agency is made up of desires referring to ourselves; of feelings of responsibility directed to others and; expectations of recognition and reward directed towards others as well as to ourselves. Whether we are fully empowered by having all three depends on our existing power relationships. This means we can only understand agency of any person when we understand their relationship to others. Freedom of interference from others is therefore largely a myth, certainly in circumstances of dying and end-of-life decision making.

As we sit here tonight I believe it is also appropriate to briefly reflect on the thought that euthanasia, and its discussion, is a luxury activity in a world context where most of its people are busy staying alive, being exposed daily to poverty, abuse and violent death. As I will explore in examining what might be a good death, I think that, while perhaps paradoxically, people in the West are not usually involved in a struggle for their survival to that extent, the quest for euthanasia is closely tied to their dominant societal values and the kind of life people in Western countries lead as a result.

Finally, something I will return to later: it has been said that the dying process illuminates parts of our lives and that we may well ask how euthanasia illuminates our lives prior to our deaths (Mann, 1998).What is a good death in your view?

At the outset I must emphasize that I do not consider myself an expert in death and dying. Like many people in our medicalised, technologised western world, I have never witnessed a person dying and even if reincarnation is a concept I have a great deal of sympathy for, I certainly cannot remember any of my own previous experiences of death and dying. So, I am groping in the dark to some extent, relying on what I have heard from others, including the participants in my study and my reading. Since I believe that a good death is closely linked to how we live our lives, I also rely on my own and others’ experiences of life.

I think that where people from different perspectives will agree is that the prospect of our inevitable deaths unite us all. Death is obviously an important part of life. Life and death are intimately connected. For some death is a full stop after which nothingness sets in, for others it is seen as a transition point to further life in some form. None of us can perhaps be absolutely sure about either scenario until it happens but its prospect and its experience can involve suffering.

According to Freud suffering is caused by three factors:

from our body which is doomed to decay and dissolution,

by external threats raging against us,

from our relations with others.

And Freud regarded the last one as the most significant (Loewy & Loewy, 2000).

We can of course do something about some of these but to control all our causes for suffering seems a futile pursuit. So, suffering appears to be part of the nature of our world, something to struggle with.

Of course, fears of death and dying are not the same and it might be hard to say which fear is the greater but both play a role, not only towards the time of death and dying but, perhaps more unconsciously so, also during the course of our lives. I think that many of us have these, or at least some of, the following fears:

Because dying could involve suffering (pain, loss of dignity, increased dependency on others and feeling to be a burden),

Because in dying bodies malfunction, may look less appealing and embarrass us,

Because life under difficult conditions may be prolonged ( e.g. dementia),

Because life under difficult circumstances is extended through intensive medical/technological intervention,

Because death is the possible annihilation of ourselves,

Because of the unknown ahead of us,

Because much of dying and death seem or are uncontrollable processes,

Because of guilt or other unresolved feelings towards ourselves or others,

Because of possible abandonment during the intensive time of dying by others,

Because of losses of relationships and physical enjoyments – and in fact everything they have ever known,

Because dying and death seem as meaningless.

I think that we can also make a distinction between fears of what we believe dying and death will be like and actual fears at various stages during dying, the two of which may not necessarily be related to each other. For instance, many of my research participants said that had they been asked the question, before they acquired quadriplegia, whether they thought they could live a good life under those circumstances, they probably would have expressed the desire to be dead rather than live with such a condition. Only 2 out of the 29 now said their lives were not good lives. The majority described their lives as difficult and full of struggle, but good. What we do about these fears will determine something about the level of wellbeing during our dying but also about wellbeing during our lives. Because if you look at many of these fears they also relate to our lives.

During a workshop on dying for instance where people were asked to list those things that dying people needed, they discovered to their surprise that the entire list also was relevant to what anyone needed at any time during their lives (Reoch, 1997)!

That being well and good, at the same time I think our society does not acknowledge dying and death:

as part of life,

as potentially a time of personal and meaningful growth for ourselves and those around us and;

actually denies it and shuts it away as something unspeakable and awful.

Death and dying have been medicalised and technologised, trivialised in movies and shut out of sight of most of us in institutions such as hospitals and nursing homes. This seems a difficult environment in which to have anything approaching a good death. So it is perhaps no accident that whereas in early Christian times a sudden death was feared, as leaving no time to the socially and spiritually necessary tasks of taking one’s leave, in our times a sudden death is preferred.

And yet, asked for what an ideal death is, many people will answer that it would be one which is to have a short dying process, lucidity, freedom from pain, discomfort or loss of self-worth, and to be surrounded by their loved ones. Whether this is merely a conscious Utopian picture or not, there seems to be a gap between what people desire and what (they think) the reality often is. Hence the demand for euthanasia. It might be worth noting at this point that losing one’s dignity through deterioration of the body and increased dependency on others is usually considered as a bigger fear than the fear of pain while control of pain often does take central stage in discussing euthanasia. Further, it is often claimed by people working in palliative care that most physical pain can be addressed, with around 5% of cases not successful in doing so (Birnie, 1998). This confirms Freud’s view of the main cause of suffering. It has been proposed that the societal quest for euthanasia is related to our suppression of thought and talk about death and that this is one way of talking about them while continuing to suppress our fears about death and dying (Somerville, 1993). Discussion of end-of-life decision-making which focuses on euthanasia also seems to suppress the discussion of our existential fears and the acknowledgement of the roles of dependency and vulnerability in our daily lives, and therefore at the end of life.

Of course no one likes to suffer but in a society where the expectations are that everything will be makeable and curable one day, suffering, and the conditions that are seen as going with that, such as disability and ill-being, is seen as incompatible with a good life and – consequently - as someone’s right not to have it. In view of the obvious nature of the world, i.e. that suffering is an inalienable part of its make-up, this belief does not fit reality. It will obviously lead to further, increased suffering, either projected or real, adding to the rationale for a death under one’s own control, as in euthanasia, as equaling a good death. Treating suffering ultimately by killing the person in addressing the conditions that cause suffering makes a lot of sense in this worldview. In a real sense then we have made our own beds that many now feel we must lie in.

Some fears have possibly always been with people, some are borne from our contemporary values framework.

Our society focuses on health, wealth, physical beauty, intelligence and the pursuit of pleasure as the main reasons for our existence. These values discourage thinking about

- let alone valuing - dependency, vulnerability, illness and disability, conditions quite often connected with dying. This is, by the way, one of the powerful unconscious reasons why so many people with disability and with chronic illness are rejected in our society – because they are direct reminders of our own deep seated fears about bodily and mental deterioration.

In our society people have been reduced to economic entities – producers and consumers. If you cannot be one of those, as few people are close to death, you will not be valued as a human being, and that is real suffering.

The underlying values of this society are to do with personal autonomy, independence, controllability and predictability, and have associated with them faith in techno/medical approaches to life where emphasis is on cure and symptoms being treated with medications and interventions rather than having to address causes. Anything not quantifiable and measurable in this context is not accepted as existing at all. So, for instance, Freud’s third reason for suffering – our relations with others – is not commonly addressed as it is not seen as relevant in dealing with suffering. This is a task not only for our society but also for ourselves. And, after all, who is better equipped to deal with our relations than ourselves. And the task of developing and sustaining good relationships does not begin and end at times of trouble – such as in dying- it is the task of our lives. This leads us to the uncomfortable, some might think insensitive, conclusion that we shape much of our own suffering: by the way we see things, project them or experience them. In looking at what is a good death I hasten to say that this statement is not meant as blaming any victims. This conclusion in no way absolves us, as a society, and as individuals to find the most compassionate and effective ways of lightening suffering, for others and for ourselves. It means instead that we should get busy caring for each other and share any suffering.

Hence a good death in the dominant worldview involves avoiding any condition which violates the values of health, wealth, physical beauty, hedonism and intelligence. So loss of cognition, loss of independence and reliance on others, not being counted as a productive person any longer and perhaps being seen as a physical and financial burden weigh heavily. We would like to die physically beautiful, sudden and in circumstances of our time and choosing. Suffering is seen as unnecessary, serving no purpose and surely avoidable probably through some technological advance, if not now than soon in the future.

But if we really want to be compassionate and effective in addressing suffering we need to simply change our view of life. It is an interdependent world where acknowledgement of our personal dependency and vulnerability, trust in and reliance on others is vital in a context where suffering is universal. Expressions of appropriate individual autonomy and choice have their place in such a framework, but in a more balanced way. We will then be more able to illuminate our lives and consequently, our deaths. Life and death must be seen and treated as one whole if we want to maximise the opportunity of a good death. And I say, maximise – as there are no guarantees about anything in this life. And I believe that a society which bends over backwards to support and care for each other, and not only at time of death but generally during times of dependency and vulnerability, while offering opportunities towards development of the human potential, particularly to love and serve, and so to a meaningful life, will illuminate itself. Fear of dignity and dependency and the development of good relationships can only be addressed during the course of one’s life. As Loewy and Loewy (2000, p. 11.) say: "Why should the end of life in a context in which the fullness of life is so empty (in a society where they see many people as estranged) be suddenly different?" Most of my research participants testified to this when they related how they lived well despite issues of incontinence for instance and dependency on others while it had taken time to get at this point. This pursuit involves others:

I would like to give you some examples where life offers simple opportunities to live a meaningful life. My daughter Sophie, who is, as she likes to say, four and three-quarter years old had not long gone to bed when she suddenly stood next to me again as I was working at my computer. I expressed surprise that she had got up again and wanted to know why. "Well Dad", she said, "whenever you go to the bathroom to wash your hands you put the hand towel on your lap – why do you do that?" I explained that I did that because I did not want to wheel over to the towel rack with wet hands getting my wheels wet as I pushed. "Yes, but why don’t you just ask me to give it to you?" she responded. "Because if I can do some things for myself I like to do them" I said. "Well", she said with passion, "but I want to do that". I understood her need to give and said that in future I would sometimes call her to do that. She nodded and with that she went back to bed. I would rather ‘sacrifice’ a bit of independence and receive her loving attention and teach her the joy of giving then to teach her that offering heartfelt help is not a good thing. Her attitude will do more for a society of people that care for each other and are not unnecessarily hung up on notions of loss of dignity through dependency on others than one which puts an undue emphasis on self-determination and personal independence. This is interdependence in action.

I have another example, this time of how the over-emphasis on personal independence affects us. I have an acquaintance (I’ll call him Ben) who has a similar level of quadriplegia to myself who told me this story. He was wheeling along Hay St. by himself which is quite a chore as the camber on the path means that you continually try to head your chair away from lunging for the gutter. At one point the chair succeeded and he was hanging over what for him was a chasm – one wheel over the edge, three on the path. This was a serious situation as if he did fall he would fly out of his chair and grievously injure himself. As he was hanging there, barely daring to breath for fear of upsetting his balance, the shopping public meandered by without paying him attention, leaving him to exercise his individual right to creative self-expression – or something. After all, he wasn’t harming anyone else! Until after some time a woman stepped off the pavement and in front of him, bent down a little and asked if he was allright. He gasped "pull the chair back on the path", which she then did. Saved! Ben was a victim here of our societal respect for individual rights and as he looked different in his wheelchair to the average walker he is seen as deviant and therefore is hard to approach. Also, he did not call for help as he literally couldn’t, so he was assumed to be allright. The approach of the non-involved minimalist. Why else did no one reach out immediately in what seemed a very obvious situation where someone required help? Another reason could be that people have now become so aware of the ‘individual rights’ of people with disabilities to be independent and autonomous that it works against them as no-one wants to offer assistance only to have their heads bitten off in response. So in that regard some people with disabilities have for themselves, and for others, created their own problems. I must add that this development must be seen in a context where so many people with disabilities were denied even basic levels of autonomy and independence that a certain over reaction on their part should be understood. On the other side of the coin when one has to frequently ask for help and meets resentment the act of asking becomes a burden that negatively affects relations between people and therefore a good life and a good death.

Trust in others and letting go of personal control at times is also vital in the course of living (increasing ones’ opportunity of having a good death). I was on a break in Denmark, in the South West of Western Australia recently where my wife, daughter and I were enjoying a day on the beach. It was a rather steep and rocky path down to the beach but it was the deep loose sand that presented the greatest difficulty for my wife to pull me through in the wheelchair. A small group of able-bodied young men walked by metres away and ignored the struggle we were having. Another man sat in his car not far away and did the same. This was one of the occasions where we did not feel like asking and with frequent breaks we got there under our own steam. At the end of the day we were packing up when a young fisherman came up, offering me a beer. He’d been sitting some way off most of the day, by himself, fishing, and to judge by the redness of his eyes and slurred speech, drinking. Anyway, he proceeded to tell how he had been dropped off by his wife and three young kids to do some thinking. He had a dad who never thought he did anything right and this was getting to him. He worked in Cunderdin on a wheat farm and his kids were his greatest treasure in the world. He asked me about how I got the disability and told me about his brother who had cerebral palsy and who he admired "for lifting his face out of the mud every time he fell over". And so we talked for some time. By the time we went he offered to help and I could tell how he must be a good hand on the farm because the loose sand, drunk as he was, did not stop him at all. When we got to the steep path to go up I said, just take the chair front ways up it (so I could not easily fall out). No, he was going to drag it up while tipping the chair back, and before I could protest, he was doing just that. He said: "you’ll be allright, you got to trust me now!" I replied, "yea why not I’ve known you for more than 10 minutes already". And he got me up there comfortably and safely. I thanked him and we gave each other a hug and off we went. I just thought how even moments of deep relationship – community really- could happen at unexpected times and with unlikely people. And how I could do nothing but trust a drunk at some point and how he got something out of that just as I did. Life was illuminated through the medium of what Darwin called ‘mutual aid’.

Life’s a struggle. And a good death for me is one where a balance has been achieved, or at least has been attempted, between acknowledgement of the imperfect and interdependent nature of myself and the world, and my expectations of life.

To live according to a view of an interdependent world clearly cannot remove all suffering, struggle being part of life, but it would mean a greater likelihood of being supported unconditionally by your loved ones and community and thereby removing some of the suffering associated with our relations to others. And physical and psychological pain would be treated as best as possible in a context where people would have less cause to fear loss of dignity, abandonment and so on or being discarded in the process of removing their suffering.

Is this Utopian codswallop? I think that each individual, even within our contemporary values structure, can try to live their lives to maximise the event of a good death - and that in itself would mean living a good life – not an inconsiderable bonus!. The often simplistic divides that are painted between extreme religious positions and secular ones do not need to exist in the framework I have alluded to. People can try to engage in a life of giving in their relationships whether or not they have a religious belief.

To sum up:

A good death then for me involves understanding my fears, the wider context they operate in, to know that I have done the best I can in my relationships with others, including with God, and that I therefore feel a sense of meaning in my struggle during living and dying and in my death.

I close with a short verse by Rainer Maria Rilke (in Loewy & Loewy, 2000) who said:

Oh Lord, give each their own death

A dying which emerges from a life

Composed of love and meaning and suffering

References:Birnie,L. (1998). A good day to die. Melbourne: The Text Publishing Company.

Loewy, H.L., Loewy,R.S. (2000.). The ethics of terminal care: Orchestrating the end of life. New York: Kluwer Academic/Plenum Publishers.

Mann, P. (1998) Meanings of death. In Battin, M.P., Rhodes, R., Silver.A. (Eds.) Physician assisted suicide: Expanding the debate. London: Routledge.

van der Maas, P.J., van Delden, J.J.M., Pijnenborg, L. (1991). Medische beslissingen rond het levenseinde: Het onderzoek voor de Commissie Onderzoek Medische Praktijk inzake Euthanasie. Rotterdam: Instituut Maatschappelijke Gezondheidszorg, Erasmus Universiteit.