Current Criteria for Quality of Life Judgments - Expressions of 'Otherness'  

The quality of life criteria currently used in medical ethical decision-making, on the whole, fail to take account of the subjectivity of life quality.  In a recent article in the Journal of the American Medical Association, Thomas Gill and Alvan Feinstein, review current mechanisms for measuring quality of life.  They conclude that because quality of life is a uniquely personal perception, which reflects the way that individual patients feel not only about their health status but also about other aspects of their lives - such as jobs, family, friends, and other life circumstances - most measurements of quality of life seem to aim at the wrong target.  They argue that quality of life can only be suitably measured by determining the opinions of patients and by supplementing (or replacing) the criteria developed by 'experts'.  

Dietrich Bonhoeffer, a German theologian, who witnessed at first hand in Hitler's Nazi Germany the consequences of judging the value of a life, highlighted in his book Ethics, the extremely subjective nature of the application of apparently objective criteria.  He believed that the distinction between life that is worth living and life not worth living was a distinction which must sooner or later destroy itself.  His prediction, sadly, has not yet come true.  In contrast, there is a lively debate raging as to which criteria should be used in determining this very distinction.  Various criteria have been suggested for judging the value of one human life as against another.  Broadly speaking they involve two sets of concerns:

  •          the suffering of the family caring for the person, and

•          the plight of the person him or herself.

  A range of criteria, which relate specifically to the concerns of the person whose life quality is being judged, have been proposed.  They include:  hardship, a meaningless life, pain and suffering, futile treatment, and the possession of 'higher' human characteristics such as rationality and  self-consciousness.   

Upon a simple analysis, many of the arguments in favour of the use of criteria such as these are persuasive.  They use the language of 'compassion' and 'caring' for the individual.  They speak of decisions which are in the 'best interests' of those concerned.  Expressed forcefully, such arguments can actually make one feel guilty for seeking to allow a person, whose life is judged as being of low quality, to live.

  It is important, however, to be aware of our true motivations in seeking to define life qualities.  Our aversion to difference and our desire to cast out from society those who are different may be masked by the language of 'compassion' and 'caring' which punctuates current quality of life criteria. It is much more palatable to our conscience to express more self-seeking motives in altruistic terms of compassion and caring.  However, these hidden motives become apparent when we observe the differential way in which quality of life criteria are applied amongst groups of people.

Concern for the suffering of the family caring for the person is often cited as a reason for not allowing a person to live.  Such concerns are often raised in the case of newborns with disability.  It is interesting to speculate whether our community would be as willing to dispose of healthy newborns on the grounds that their parents do not want them as it is to dispose of babies born with impairment on such grounds.  On this analysis, the life of every orphan would be seen as not worth living.

  Let us look by way of example at one of these criterion - the 'happiness curve' developed by Michael Brandt to judge the life quality of newborns with disability. This curve plots moments of happiness and unhappiness  around an indifference axis.  The shape of the curve would determine whether or not the individual whose quality of life is being judged has, on the whole, a good or bad life.  An inappropriately shaped curve would justify the withholding of basic nourishment from that child with the consequences that she or he would die. 

  The able-bodied and able-minded person, who has not developed any connection with people with disability, is more likely to perceive the life of a person with disability as full of pain and suffering (moments of unhappiness).  Yet happiness and unhappiness are extremely subjective concepts which must differ markedly from person to person.  Happiness is experiential and cannot be evaluated by a set criteria - for example, that the eating of an ice cream yields 10 units of happiness.  To the person who loathes ice cream, the eating of ice cream would yield a negative result on the happiness curve. 

  Even if happiness were quantifiable, such a basis for assessing quality of life fails to come to grasp with the very nature of life itself of which pain and pleasure, whether it be physical, emotional or psychological, are an inextricable part.  Assessed on Brandt's curve, without the cultural bias which values the experiences of the able-bodied and able-minded over others, the greater part of the human race would be candidates for 'treatment to die'.  

In critically and empathetically analyzing quality of life criteria, one must be willing to  take oneself to the contemplation of what is the very essence of life.  One must be willing to align oneself closely enough with the person whose life is being qualified to identify and appreciate his or her inner desires.  We must ask ourselves:  are we really just riding roughshod over that person's innate desire to live? One must ask, and answer, honestly: in whose best interests is that person's death?  Is it indeed more comfortable for us, as a society, not to have to deal with the needs of people with disability?   

Quality or Life - Shifting the Focus

  There is nothing inherently wrong with making judgments about quality of life.  We judge our own life quality constantly, almost always with a view to improving it.  Our reflections on personal and collective life quality motivate most of our actions in the world. We are constantly seeking to make our world different, better, more satisfying.  It is this drive for betterment which feeds the inspiration for personal and social change.

However, in an industrial society which has come to align social progress with material advancement, quality of life has become important in a different context.  Increasingly, we view the world as we view the production line.  On the production line, we discard items of poor quality.  We do not retrieve and repair, but simply discard.  In a throw-away society, we have become more willing to judge quality of human life with a view to disposal rather than improvement.

  When we cease to measure quality of life exclusively in order to improve life, and use quality of life judgments in a mutually exclusive framework - either quality or life - quality of life judgments become powerful social engineering tools which impact markedly upon the lives of individuals and groups of individuals within society.  It is in this context that it becomes important to closely question the way in which we make these quality of life judgments, the values and beliefs which lie hidden in them and the consequences, in terms of potential personal and social cost, of quality of life judgments.   

Undermining Social Equality  

Although our collective social actions may not always reflect it, our Western democratic tradition is based upon what Richard Sherlock, in his book Preserving Life, describes as a belief in the intrinsic worth of each human life, irrespective of the qualities which it manifests.  Others describe this as the principle of social equality.  However, quality or life judgments seriously undermine this principle and thereby threaten the cohesiveness of the society. 

  By making human life conditional upon the attainment of certain characteristics, we are in danger of undermining the finer human expressions which, according to Sarkar, make the difference between a culture and a civilization.  Sarkar defines culture as the collective name of different expressions of human life.  Civilization, on the other hand, is the subtle sense of refinement that we come across in the different expressions of life.  It is this subtle refinement which makes the difference between a 'hard' and a 'soft' society, and which allows our society to evolve and develop more refined ways of interaction.   

Applied in a different context, current quality of life criteria could easily justify the 'merciful' killing of Rwandan refugees.  They are unwanted, they are bound for a life of pain, suffering and hardship.  The same could be said of a child born into a family with a history of child abuse.  But as our collective conscience is raised, we find it more difficult to justify the denial of the common bonds we share with those of different race and colour, or of poor socio-economic status.  We would not propose the mass genocide of Rwandan refugees as a 'solution' to their plight.  Such 'solutions' are not only simplistic, but also undermine the finer human sentiments which build meaning into a society.  To accept simplistic solutions is to somehow give up the struggle to improve the 'lot' of our society.  Yet such 'solutions' are proposed openly and without misgivings in the case of people with disability.  In effect, they absolve both the individual making the judgment and the society as a whole from responsibility for improving the quality of life of the person being assessed  

The fragmentation of our social purview is encouraged by those who, like Peter Singer, seek to highlight differences between people instead of the common connections between them.  According to Singer, "not all members of the species Homo sapiens are persons, and not all persons are members of the species Homo sapiens."  While his efforts to increase our sense of relationship with, and empathy for, all living beings is to be commended, his attempts to draw more distinctions between human beings is disturbing.  

Conclusion  

In considering the maze of ethical issues which confront one in looking at end-of-life questions, there is a desire to find a formula, which when applied, will give a predictable answer.  Quality of life judgments seem to offer the hope of such a formula.  But life is not so linear as we would want it to be and linear analysis brings with it the scope for results which are definitely other than what our hearts tell us is proper.  

Fritjof Capra, in his book, The Turning Point, sums up the intellectual and psychological shortcomings of our Western scientific approach.  He says that:  ". . . our society has consistently favoured the yang over the yin - rational knowledge over intuitive wisdom, science over religion, competition over cooperation, exploitation of natural resources over conservation, and so on.  This emphasis, supported by the patriarchal system and further encouraged by the dominance of sensate culture during the past three centuries, has led to a profound cultural imbalance which lies at the very root of our current crisis - an imbalance in our thoughts and feelings, our values and attitudes, and our social and political structures."  

In seeking a guiding principle, rather than a linear logic, for the resolution of ethical dilemmas, we need to critically analyse the decisions which we take in a value-based framework.  We would do well to embrace the principle of social equality, not only with our rational minds but also with our hearts, as a benchmark against which to judge our decisions.  And therein lies a greater safeguard in medical decision making.  A principle lived and absorbed, a close empathy and identification with the person who is being decided 'about', and a basic respect for the value of their life,  is more likely to result in justice than the application of 'logical' principles which, at times, require us to do intellectual gymnastics in order to fit the logic to the practice.  The criteria used for quality of life judgments fall into his category; they cannot provide us with just results in every instance. Quality of life judgments are a very crude measuring stick upon which to base medical decisions which affect the very opportunity to live of an individual.

  In basing medical decisions on quality of life judgments it is also inevitable, as James Gleik in his book, Chaos:  Making a New Scienc,e acknowledges in relation to attempts to quantify and measure in other contexts, that one kind of information will be lost while another will be brought into high relief.  It may well be that the lost information is that which can least be quantified.  But perhaps it is the finer human sentiments - the sense of connectedness and empathy, of 'right relationships' which we must suppress, for example, to allow ourselves to allow a newborn to die, which really hold the key to the just solution.

  References  

Boddington, P and Podpadec, T "Measuring Quality of Life in Theory and in Practice:  A Dialogue Between Philosophical and Psychological Approaches, (1992) 6(3) Bioethics, pp 201- 217.

Bonhoeffer, D Ethics, 1969, New York:Macmillan.

Capra, F The Turning Point:  Science, Society and the Rising Culture, 1982, London:Wildwood.

Eco, U The Name of the Rose, 1984, London: Picador.

Gleick, J Chaos:  Making a New Science, 1988, London:Sphere Books.

Heshusius, L "Freeing Ourselves from Objectivity:  Managing Subjectivity or Turning Toward a Participatory Mode of Consciousness?" Educational Researcher, vol 23, no 3, April 1994, pp 15-22.

Kohl, M "Voluntary Death and Meaningless Existence" in Kohl (ed) Infanticide and the Value of Life, 1979, Buffalo:  Prometheus Books, pp 210-211.

Perrott, C "The Chaos Theory Story:  Explorations of Implications for Education Research", Australian Educational Researcher, 1992, vol 19, no 3, pp 49-56.

Reich, W "Quality of Life and Defective Newborn Children" in Swinyard (ed), Decision Making and the Defective Newborn, pp 489-511.

Sarkar, P Prout in a Nutshell - Part 7, 1987, Calcutta: AM Publications.

Singer, P Rethinking Life and Death, 1994, Melbourne:Text Publishing Company.

Singer, P "Sanctity of Life or Quality of Life", Paediatrics, vol. 72, July 1983, pp. 128-9.

Sherlock, R Preserving Life:  Public Policy and the Life Not Worth Living, 1987, Chicago: Loyola University Press.

Wolfensberger, W The New Genocide of Handicapped and Afflicted People, 1987, Syracuse, NY:Author.

“Challenges To the Lives of People with Disability”  

Paper Presented at the C.R.U. Lunchtime Seminar Series

November 24, 1995  

Jennifer Fitzgerald 

“A Death of One’s Own”  

A few days ago I read an article by Andrew Solomon in the New Yorker called "A Death of One's Own"[3].   That article disturbed me deeply.  I felt a deep sadness as I read.   In that article, Andrew Solomon described his own role in his mother's suicide.  He described the way in which people are now assisting others to die.  He described two men 'assisting' a friend with AIDS to die.  He described them placing a plastic bag over their friends' head and securing it with an elastic band at the neck after he had taken an overdose of sleeping pills.  This was to ensure that his suicide would be successful.  Andrew Solomon writes,

  "He took his pills, and when he was out cold his two friends secured a bag over his head . . . One of them became frantic, "I can't  deal with this," he said.  "Well, don't quit now,"  said the other.  "We're in this together."  At that point, the dying man suddenly snapped into consciousness.  "Hey, guys, what's going on?" he asked.  They removed the bag and comforted him; he passed out again, the bag was put back over his head, and he suffocated."[4]

  I felt such deep sadness because this article somehow shattered my conceptions of what a loving relationship involved.  Somehow, our value structure has been deeply changed.  An act, which my head and heart tells me is a violence, is now being reinterpreted as an act of love.  Somehow the boundaries of a loving relationship are being transformed enormously.  If someone tells me they love me, I now must question:  do they 'love' me enough to want to kill me?  If they do profess such 'deep love', then I think I might  feel a little more than uneasy within that 'loving union'.

  But there was something else about Andrew Solomon's words which unsettled me deeply.  I saw in his writing a deep struggle of conscience going on.  A struggle to integrate the actions which his intellect and his ideological convictions told him were right with the very deep disquiet within himself which had grown since his participation in his mother's death - something I would call a kind of 'instinctive morality'.   He quotes a woman who has been through this experience.  She says[5], "It is a relationship that is not natural, from which there is no recovery - you scar forever." 

  There was a third thing about this article which disturbed me.  It appeared in the New Yorker.  This tells me that the content of the article has legitimacy and is probably reflective of the dominant value structure of a fairly dominant class grouping - the readers of the New Yorker - who, it is my guess are, on the whole reasonably well-educated, well-resourced, white Americans.

  It is in this ethical climate, which people with disability are living.  In this climate, the lives of people with disability are very vulnerable.

  Queensland Advocacy’s Work

  What is now our bioethics project at Queensland Advocacy Incorporated (QAI), had its beginnings several years ago when people at QAI began talking more about the sources of threats to the lives of people with disability.   We felt this to be an extremely important issue and we wanted to devote more of our time and energy to it.  It took us a few years, but we managed to resource a small project looking at bio-ethical issues and their impact on people with disability.

  For the last 18 months, at QAI, we have been grappling, both individually and collectively, with a range of what are often termed 'bio-ethical issues' - particularly, practices such as selective abortion of a foetus on the basis of impairment, the treatment or non-treatment of newborns with disability, the various shades and grades of euthanasia (for example, active/passive, voluntary/non-voluntary).  We also recognize the very real threat to life from abuse and neglect.   

As you might appreciate these issues are not easy ones to deal with.  I think we have all been challenged by them at QAI.  At times, I feel like I'm wading through mud - and at other times, it just seems so glaringly simple.

  QAI’s Research Project

  Recently, we felt the need to go further in understanding these questions and we are seeking funding for a 2 year research project to look at end-of-life decision-making with respect to people with disability.  It will be a qualitative research project - basically asking many different people for their stories and experiences.

  The project aims to give us an understanding of:

  1.         Current practices with respect to end-of-life decision making in the lives of people with disability.  Just what is happening now in those areas.

  2.         We also want to understand how those decisions are made - who makes them - and most particularly, the value structures which underpin those decisions.  We see that this is very important - for in order to really judge the efficacy of certain practices, it is important to look at, not only their effect, but also their motivation.

  Our hopes for this research are that it will:

  1.         Make a significant contribution to community awareness of the way in which we as a society treat people with disability - particularly in respect of the preservation of their lives.  

2.         Second, it is important for us at QAI to be sure that the advocacy work which we undertake around these issues is informed by the realities which people with disability face.

  Personal Reflections

  Today, I would like to offer to you some personal reflections which have come from writing, thinking, reading and talking about these issues for the last 18 months.

To me, of all human rights abuses, the threat to one's right to live, must feature as one of the most basic abuses. At the most fundamental level, if one's very life is not welcomed by the society into which one is born, it is very difficult to see how one will be treated with respect and dignity throughout one's life.  It is this issue which we are to address today.  It is a very real threat.  Indeed it is more than a threat; it is also a reality.   

Yet, like most abuses involving people with disability, it is largely hidden within our society.  In the past we have hidden it  by doing it behind closed doors - the closed doors of institutions, or the closed doors of the gas chambers in Nazi Germany.  But, more often, we conceal it (and conceal it most effectively) by calling the denial of the right to live other than it is.  So we call it an act of compassion or an act of love.  We conceal it with medical technologies which distance us from the reality of what we are perpetrating.  By sanitizing our acts with medical technologies which many of us associate with health benefit  - medicines prescribed by doctors, or injections normally given to facilitate health - we convince ourselves that we are doing good. (Perhaps that's also why Andrew Solomon's words shocked me so much.  I realized how much I was afflicted by this sanitization of death - the image of someone suffocating one's loved one with a plastic bag jolted me into the reality of what was actually being done.  Pills somehow seem so much more' civilized' - and more distant from the reality of death..  )

  The Threat is Not New

In one sense, this threat to the lives of people with disability is not new.  We have all heard of babes with disability being left on mountainsides and Peter Singer notes a number of cultures in which similar practices are widely accepted[6]. 

This is something which we, as a human society, are very familiar with - the inability to deal with difference and diversity.  The darker side of our human history - through its wars, abuses and atrocities - testifies to the narrow sentiments which have restricted the

  boundaries of our love - we have created boundaries based on geography, on skin colour, on gender . . . . and the list goes on.  This, to my mind, is a matter of a huge collective memory loss.  We have forgotten our commonality - and been dazzled by difference.  

This is the old threat we have long had to deal with.  And, certainly, one that has not gone away.  But threats to the lives of people with disability are also coming from new sources - and these threats are operating at a number of levels.  

The New Threats  

On one level, we might focus upon a number of practices, most of which have their origins within the medical system - for example, selective abortion, non-treatment of newborns with disability, and euthanasia.  At another level, at a deeper level, these practices have their own cause - they are occurring as a result of the confluence of social changes which are, together, rapidly transforming the landscape of our society.   

At this time in our history, we are undergoing immense changes to our value system which have profound implications for the position of people with disability within our society.  At the same time, we are experiencing rapid technological changes which are both shaping, and being shaped by, our value system.  It is these factors which are creating the environment in which those practices mentioned above are finding scope for expression.

  Today, I want to explore those changing value structures. I also want to explore the ways in which some of those values are finding expression in our societal practices which threaten the lives of people with disability.  I want to raise some questions in order that we might be more fully aware of where those value transformations might lead us.  

I think for all of us, this period of time in our history is a very difficult one.  Fritjof Capra described this period in our history as a “crisis of intellectual, moral and spiritual dimensions”[7]. And charting the course through this is very difficult indeed.  

The Age of Ethical Uncertainty  

We are living with ethical uncertainty.  For better or for worse, in the Western world, we are witnessing a breakdown of Judeo-Christian values.  At the same time, the ideological framework which structured the lives of a huge number of the world’s people - Communism - has also crumbled.  Some would argue that we are now experiencing the end of “truth” as we know it[8], an era in which the ground rules are open to complete re-negotiation.  Others might say that we have simply absorbed what we might now term the Capitalist ethic.  The values which previously only defined our economic interactions - emphasis upon individual endeavour and freedom of choice - have now become our ethical code for a whole range of our human interactions.  

The capitalist ethic embraces autonomy and choice as the only universal values in a pluralist society - or, put another way - the only thing upon which we agree in an age of universal disagreement.  I don't find anything inherently wrong with having choice - we all want some degree of control over our lives.  The suppression of human spirit experienced by people living under Communist regimes is testimony to the grave dangers of seeking to turn us into clones of one another.  But, I feel it is also important that we make ourselves aware of the inherent dangers in elevating individualism and 'free choice' to the status of the dominant social value to the exclusion of all others.  It is important that we know what the wholesale acceptance of those values might mean for the cohesion of our society - and particularly, what it might mean for those members of our society whose very life depends, not upon autonomy, but upon community, upon dependence and inter-dependence.

  Autonomy

  I get a lot of my education on public affairs and values from the radio.  The other day, Geraldine Doogue was talking on Life Matters on ABC Radio about parenting.  She said that, for her, the most important goal of parenting was to create an autonomous individual.  I wonder, where does a person with disability, with high support needs, fit into this construction of success.  For myself, I would feel that I have failed my children if they grow up to be autonomous.  I want them to have a fabric of relationships woven around them to protect and nourish them.

  But, 'free choice' is also a slippery thing.  It assumes some sort of state of 'perfect rationality' which, speaking for myself, I would have to say I have experienced extremely rarely, if at all.  Life does not seem to be so clear cut.  For example, I am in the supermarket buying washing powder - exercising my consumer sovereignty of rational free choice.  But, I must question, even in this situation, how free is my choice. My choice is influenced by the advertising I have seen on TV, by the colours on the box, by the amount of money in my purse, even by the fact that my two boys are throwing things at one another in the shopping trolley - and I just want to get home.  So, how free is my choice?

  Then, I ask:  How free is the choice of a woman faced with the 'choice' of selective abortion?  How free is the choice of the parents of a newborn with disability?  How free is the choice of an elderly person who opts for euthanasia because she perceives herself (perhaps subconsciously) to be a burden to her family?  All of our choices are culturally coloured.

  How also, does individual free choice, deal with the complexity of inter-relationship - when my free choice conflicts with someone else's free choice?  Is it the 'free choice' of the one who is strongest which we honour?  Or the weaker?

  The Production Line Ethic

Capitalist ethics also embrace what I would term a 'production line ethic' - of  perfection (with the flip side being rejection), of utility and economic rationality, of control.  In sum, the adoration of what we can see and touch, the material, over those forces which influence our lives but which live in non-physical spaces, the spiritual.  

So, for people with disability this means that when we quality control the human race, it is they who go.  We reject the imperfect from the production line - either by removing it before it emerges through selective abortion - or by discarding it after birth.  

We go on to redefine what is a person so that, according to Singer, those human beings who are not persons, become "morally insignificant"[9] and more able to be disposed of.  

Just as we seek to control the production line, we also seek to control our world.  We want to write our own scripts - with no ad libbing - in order to avoid the discomfort of chance and chaos.  

The Slippery Slope  

Talking about slippery slopes is not very fashionable these days.  In doing so, one is taking the risk of being hailed down as paranoid.  But, to my mind, the slippery slope is very real - and we are already on it.  For example, advocates of voluntary euthanasia who insist, in one forum, that we are only talking about adults who freely and informedly consent, in another forum, argue for non-voluntary euthanasia of those who cannot consent - as a matter of right.

  Andrew Solomon, from whose article I quoted earlier, says that 'euthanasia breeds euthanasia"[10] and notes that 2 of the 4 founders of the Hemlock Society committed suicide - both out of depression and, suspects Solomon, a pre-occupation with death[11]  

Getting Closer to Human Essence  

Professor Wolfensberger, in a recent article, made a comment which I found very insightful..  He says,

"The more closely a discourse deals with human nature and the human conditions, and the closer it comes to the human essence, the less rationally and truthfully will educated, intelligent people (including scientists) deal with it"[12]

The Need for a Wisdom Tradition

  To me, this is the crux of the challenge which we now face.  We have lost our wisdom tradition and, if we are to sort these ethical complexities out, we need to rediscover it.  I suspect that wisdom comes, not from doing deals on Wall Street, but from living close to the essence of life, from treading lightly on the earth and listening to and feeling the pains and cries and tears which emanate from her.   

Vine Deloria writes,  

"The twentieth century has produced a world of conflicting visions, intense emotions, and unpredictable events, and the opportunities for grasping the substance of life have faded as the pace of activity has increased.  Electronic media shuffle us through a myriad of experiences which  would have baffled earlier generations and seem to produce in us a strange isolation from the reality of human history.  Our heroes fade into mere personality, are consumed and forgotten, and we avidly seek more avenues to express our humanity.  Reflection is the most difficult of our activities because we are no longer able to establish relative priorities from the multitude of sensations that engulf us.  Times such as these seem to illuminate the classic expressions of eternal truths and great wisdom comes to stand out in the crowd of ordinary maxims.”[13]

  Just as some believe that the visionaries of the future are to be found on the peripheries of society, I believe that wisdom is also to be found there.  Certainly these peripheries are places I have gone to in order to seek out some threads of thought or principle which might help me weave my way through these ethical dilemmas.  

Black Elk, a holy man of the Native American Sioux Indians, conveyed this message, "You have noticed that the truth comes into this world with two faces.  One is sad with suffering, and the other laughs; but it is the same face, laughing or weeping."[14]  

This desire to root out pain - in the form of age, disability, dependence, etc - and leave only pleasure - seems to me to be seeking to control something we cannot.  According to Black Elk, pain and pleasure are like two sides of one piece of paper.  They cannot be separated.  Try as we may to control it, channel it, tame it, pain just comes.  Our desperate efforts at eliminating pain deny the basic reality of our existence.  And while it is natural, out of love and compassion to try to ameliorate pain and suffering, it is part of life, part of the rules of the game which are apparently not open to negotiation.  But because we want to control it, instead of seeking to lend a hand, we seek to knock the pain (or the person) on the head.  

 Prabhat Rainjan Sarkar, Indian philosopher and mystic, writes, “ . . . all the creatures which have come to live in this world, do not want to leave it - they all want to survive.  Thus we must grant them their right to remain in this world, their right to survive.”[15]

  Elsewhere, he says,  

“In human society, nobody is insignificant, nobody is negligible.  Even the life of a 100 year old lady is valuable.  In the universal society, she is an important member - she is not to be excluded.  We may not be able to make a correct appraisal of her importance and we may wrongly think that she is a burden to society, but this sort of defective thinking displays our ignorance.  There is an historical necessity for everything, but we do not bother to find that historical necessity.  Had we bothered, we could ascertain the historical necessity behind every incident, behind every trough and crest of this universe.

 

If we think deeply and try to trace the significance of different events we shall find that nothing in this universe is useless.  Everything is happening with a definite message for the future, with a great potentiality for the future.  Nothing in this universe is insignificant, nothing is to be belittled.  Atoms and molecules were once considered very small and insignificant, but after the invention of atom bombs people started dreading the same atoms.  No one really knows how much potentiality this or that object has.  One can get an exact idea of the potentiality of something only after a thorough investigation.  In this world, everything comes to fulfil an historical necessity."[16]

  This tells me that when someone tells me they want to die, I ought to ask why, rather than give them a gun or go and fill a prescription a prescription.  To me, there is something important in us, as a society, honouring that most basic instinct - survival.  

Knudston and Suzuki describe the world through the eyes of the Waswanipi people of Canada and find community and interconnectedness, rather than individualism and isolation,  

"In the Waswanipi world, the web of relationships between the myriad beings and forces at play is not mechanical - as is the relationship between the whirling wheels and gnashing metal gears that "animate" a ticking alarm clock.  It is not strictly logical - as is the cool, rational relationship between the lines of a computer program, unerringly incoded in binary digits and computer languages, that "animates" the screen of an office word processor.  Nor is it primarily abstract, intellectual, or theoretical - as are the abstract, lifeless, mathematical and conceptual models constructed by population and systems ecologist as they strive to render more intelligible the wondrous complexities and unities of entire ecosystems . . .

   

The relationships among the countless elements of the Waswanipi cosmos - that breathe life, meaning, and sanctity into it and that grant it lasting coherence - are more fluid, more elusive, more steeped in symbolism than what any of these potent but fragmentary Western images of the natural world is capable of imparting.  Traditional Waswanipi society tends to view the totality of nature through the same lens through which the Waswanipi people view themselves:  the bonds of human kinship."[17]  

So they see an interconnected world of relationship - and not a disparate one of individualism.  

Finally, to Sarkar again,  

"Some people say that disparity is the order of nature, and therefore there must be differences between one group and another, between rich and poor, etc.  However, such a proposition is fundamentally incorrect.  Instead, it is correct to say that diversity is the order of providence.  One must remember that identicality is disowned by nature - nature will not support identicality. . . So diversity is the law of nature and identicality can never be.”[18]

  So, in seeking to make uniform the human race, like the production line, we are in fact, working against the natural ebbs and flows of the universe.

 Ethics is Not Easy - Not Mathematics or Contracts

  Technology is posing for us difficult ethical questions for us as our collective dominion over life and death expands.  But, I don't think we get easy answers in ethics.  Ethics is not mathematics - and neat equations and formulae such as those which some have sought to establish will not provide us with just answers.  Nor do I think that a contractual approach, an approach with which we are increasingly enamoured in the Western world,  - such as living wills - will give us just and humane results.

Rather, I feel it is in the reclaiming of our wisdom tradition and our instinctive morality which we will find the answers to thse difficult questions.  It is also in developing close relationships that protection is more likely to be guaranteed.  For, I feel out of love comes more dependable conclusions.

 Conclusion

  So, in concluding, I would simply like to suggest that perhaps, as we negotiate the exciting, ever changing, expansive post-modern world, we should hold firm on just a few non-negotiables so that we preserve the lives of some people who really matter.

Euthanasia - A Threat to the Lives of People with Disabilities:

A Question of World View  

 Erik Leipoldt  

If I were called on to give one single piece of advice, the one considered most useful for men of our century, I should say this to them:  “For God’s sake pause a moment, think of what you are and what you ought to be - think of the ideal.”[19] 

  "The focus of this legislation is to give those who suffer the right to choose a death with dignity, to bring to an end the torture many endure on their death-bed, and for that to be done legally, without fear of prosecution for those doctors or nurses who may assist a patient in this desire."[20]

"I do not consider it wise either to focus on the issue of decriminalisation or public policy - for the fundamental issue remains whether it is moral, ethical, right, wise, appropriate, fitting for the death of a dying human being to be deliberately accelerated . . . for a very ill person to be killed under some circumstances, as a part of medical practice.”[21]

"We shall not cease from exploration

And the end of all our exploring

Will be to arrive where we started

And know the place for the first time"

                       -   T. S. Eliot[22] ‘Four Quartets’

  Thanks  

I acknowledge and am sincerely grateful for the editing of this article by Jennfer Fitzgerald.                                                                                         E.A.L.

  Introduction

This paper is written to stimulate debate on the contemporary and vitally important issue of euthanasia  It will also explore the potential impact on people with disabilities and upon advocacy for people with disability of euthanasia legislation.

In keeping with beliefs underlying this paper regarding the interconnectedness of us all and the consequent realisation that scientific detachment and objectivity are therefore myths, I briefly present my personal background as author of this paper. It is my belief that doing so will reinforce the impact this paper may make and this is the sole aim of doing so.

I am a married man with one child, who for the past seventeen years has had the condition known as quadriplegia (C 5/6), due to an accident at the age of twenty-four.  I use a wheelchair and need daily assistance in very personal activities such as showering, toileting and dressing.  While in hospital for ten months in 1978, the thought of perhaps being 'better off dead' did cross my mind, but I never actually sought any means to put such thoughts into practice.  I am today glad I never did, unlike some others I have known who did take this course of action.  Contrary to the spinal consultant's prognosis at the time, I consider that my life has been, and is, rich and worth living. It is difficult at times, but essentially this is no different for any of us.

Some proponents of euthanasia argue that euthanasia is appropriate in instances such as such as "quadriplegia where death is not imminent but recovery can be ruled out, and suffering is very severe".[23]  The reader can now appreciate why my explicit subjectivity in this debate is so important - and that anyone's subjectivity is unavoidable!  Some people's appreciation of a life lived with quadriplegia is obviously grossly different from mine.  Can 'quality of life' ever be judged and should it be?

With the passing of the Rights of the Terminally Ill Act 1995 (NT) in the Northern Territory and the consideration by the parliaments of South Australia, Victoria and ACT of various types of euthanasia legislation, it is urgent that the most vulnerable people in this debate are heard and listened to.  This urgency cannot be stressed enough.  In fact it may soon be too late for people with disabilities to make their mark in the face of the Federal Minister for Human Services and Health, which incidentally covers disability, proclaiming the importance of the consistency of euthanasia legislation across States and Territories, as if that was the most important issue to be addressed in relation to euthanasia legislation.  There are no proposals for any mechanisms to monitor the impact of euthanasia legislation on vulnerable people who are older, have a disability or others.

 Definitions  

It is important to be clear about what we mean when we talk about 'euthanasia'.  The word comes from the Greek and literally means 'good death'.  Currently, the term suffers from overuse and is used in different ways by different people in different contexts.  The term is also used to describe differing shades and grades of activities - active voluntary euthanasia, non-voluntary euthanasia, passive euthanasia, involuntary euthanasia, etc.

  In this paper, I rely upon Professor Margaret Somerville's definition of euthanasia,

"An intervention or non-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."[24]

It is important to note that this definition relies on the intent of the act, in order to determine whether it amounts to killing or the provision of good medical or palliative care.  Like Somerville, I will use 'killing' where I refer to the intentional termination of life to avoid the impression that euthanasia is somehow a benign moral advance and to reduce any confusion about the role of palliative care.

  While Professor Somerville's definition does not address the killing of unborn and newborn babies with disabilities, I will nevertheless briefly touch upon this subject.  I appreciate, however, that a full exploration of this topic alone could be the subject of another paper.  

History  

The most recent example of government-sanctioned euthanasia is often quoted as the extermination of non-valued people by the German Nazi Government in the late 1930s and 1940s.   

It is often claimed that this example bears no relationship to the current euthanasia debate  and attributes gross criminal and amoral qualities to those who currently favour euthanasia.  While I have no wish to infer this, I nevertheless believe that this example has very relevant parallels which we should not avoid looking at. It is important to understand that side of human nature which allowed the killing of thousands of humans in recent Western history and to recognize that, in certain social environments, that human tendency can gain large scale expression.  

Pollard briefly describes the history of the Nazi euthanasia programme:[25] In 1895, a book written by Jorst, The Right To Die, was published in Germany.  In 1920, Karl Binding, a lawyer, and Alfred Hoche, a psychiatrist, wrote The Permission To Destroy Life Not Worth Living.[26]  This book led to further discussion which gained further public acceptance and legitimised euthanasia. 

  On request at first, people who were the "useless sick" were killed in German hospitals. Reasons were stated to be "compassion, quality of life and cost containment - much the same as they are today".  Jews were not allowed to use this avenue for euthanasia as it was considered a social advance not worthy of them!  People with intellectual disability or mental illness followed.  Soon after, those with minor defects, people with dementia and war veterans were included, no longer on request.  Thus, people with disabilities were the first to be killed by doctors.  Then in 1939 Hitler authorised 'euthanasia' for wider use, leading to the Holocaust.  

As Pollard notes further[27], what is important to realise is that this 'slippery slope' had been prepared by medical doctors, lawyers and clerics, gaining public acceptance and legitimising later government-sanctioned actions.  Doctors widely participated in this orchestrated killing and even volunteered. 

The Past Into The Present  

Today we hear the same arguments of compassion, quality of life and cost, coupled with the modernistic calls for choice and individual autonomy to decide what to do with one's life.  In the U.K. the practice of killing newborn babies with conditions like spina bifida and hydrocephalus is commonplace in hospitals and there is no reason to assume this situation is any different in Australia[28].  

There is arguably little difference between killing these newborn babies and killing unborn babies before 22 weeks of pregnancy because perhaps they happen to have a different number of chromosomes.  The same value judgements are at play.  However many of us may now have become conditioned to think that a 'foetus' is not a baby, a person possessing life.  The same numbing of our judgements and consciences may happen by referring to newborn babies as 'neonates', robbing them of their ‘personhood’, and consequently making it easier to make clinical decisions about their lives, through giving those decisions an air of professional legitimacy as a medical procedure.   

Government-sanctioned euthanasia in the Netherlands is often held up as an example for others to follow, although interestingly some Australian proponents are now trying to distance themselves from the Dutch model.  A Dutch government-sponsored evaluation of euthanasia practice found more than 1 000 official cases of euthanasia where there was no request for euthanasia by the persons concerned.[29]  In addition, euthanasia is available there to people who may not be terminally ill.  Two such cases reported in the media concerned persons with multiple sclerosis and psychological depression who had determined that their condition caused them more suffering than they could bear.[30]

Genetics  

As a corollary to euthanasia, the mapping of all human genes, the Human Genome Project, is an expression of the same underlying values playing a role in the killing of dying people and its further applications.  

Arguments For And Against Euthanasia  

There are a number of arguments commonly put forward about why euthanasia should be a legal and freely available practice. There is one thing both supporters and opponents of euthanasia have in common and that is that they both argue that what they espouse is in the best interests of the dying or suffering persons and both claim compassion to be their deeper motive.  A true sense of compassion is to be respected.  However, the underlying values and beliefs which play a role in arguments in favour of euthanasia show different motivations - whether consciously applied or not.  

Suffering And Mercy  

People generally suffer much in their dying and they should 'mercifully be helped on their way'.  It is claimed that for various reasons the 'quality of life' at the end of life can be so low that this warrants ending that life.

  Reasons put forward why this should be so include:

  ·        Pain and discomfort become unbearable.

·        Most or many deaths are very painful and uncomfortable experiences.

·        Medical care is focussing on keeping people alive at all costs which causes unnecessary suffering.

·        The final stages of life may reduce a certain dignity, as personal control over very basic personal tasks and processes may be lost.

  Whereas there obviously are people who die in pain and discomfort, palliative care in Australia is said to be able to remove or reduce pain and discomfort to bearable levels[31].  In fact it has been claimed that where unbearable suffering cannot be relieved, this is almost always to blame on bad practice and affects only a very small proportion[32]of those dying while receiving palliative care. 

  In the USA, only 31% of people are only one day before their deaths on any pain medication[33].  Assuming that this is so because most do not need such medication rather than such not being available to them in spite of need, this is contrary to a public perception that death is often, if not always, a 'tortuous' process.  

Pollard and Kubler-Ross[34],  who have each provided palliative care to several thousand people, both claim not to have had any requests from a patient for euthanasia after his or her initial fears had been addressed.  Pollard[35] points to a need for further training in medical schools of doctors in the practice of good palliative care where such care may not be available. He also points out that palliative care is not a field of medicine only a few 'experts' can practice, but to the contrary, comprises skills which are not beyond the local general practitioner[36].  

It is true that medicine can now keep people alive who not so long ago would have had no remedy for their condition, and would have died. (This is of course also one reason why there may now be more people with a disability in our society then ever before).  For example, it is not correct to assume that it is a regular occurrence for comatose people to be hooked up to life supports, prolonging an agonising existence.  Such scenes may be more alive in the public's mind than bear resemblance to reality.  Where these situations do occur decisions can be, and are, made to either not initiate life sustaining treatment or withdraw it in the light of futility of further treatment[37].

  Assumptions about loss of dignity in dying may include needing assistance for very basic human needs, such as assistance with toileting, personal hygiene and care.   Many people with disabilities know how a need for such ongoing assistance affects their lives.  It would be fair to say that, for the great majority, they eventually overcome any feelings of damaged dignity and learn to live with it.  This is not to say that such dependency is always a path paved with roses, it is not.  Dependence however does not in itself necessarily mean a loss of dignity. 

  Many perhaps find it hard to believe that anyone could live under such circumstances, yet many do so with gusto.  We know that the public's assumptions about what it is like to have a disability do not match the reality of the vast majority of people who do live with a disability, including severe disability.  Similarly so, there appears to be a widely held fear of dying based only on assumptions about what dying may actually be like.  In any case it would seem to make more sense to address the sense of loss of dignity than to kill the person to avoid it.  The ways in which assistance is given, judgements and attitutudes by the recipients and givers of care can play important roles in minimising loss of dignity.  

Autonomy and Vulnerability 

  It is often argued by proponents of euthanasia that every person should be able to control all the circumstances of their own lives, including when, where and how they die.  This is related to the concept of ‘personal autonomy’, where one may do as one likes as long as ones actions do not negatively impact on others.

  For example, Dr. Helga Kuhse, Director at the Centre for Bioethics at Monash University, arguing in favour of voluntary euthanasia says that a 'sanctity of life' view is redundant as "only if a

  person's actions cause harm to others is it legitimate for the State to step in and to bring laws that restrict individual liberties"[38].   

However, history shows that voluntary euthanasia may soon become non-voluntary and it is here that the lives of people with disability are particularly at risk.  In this broader context, the acts of one person seeking the freedom to have themselves killed do cause harm to others by creating a social environment in which death is an acceptable treatment for suffering.  We have the Nazi German experience where genocide had its roots in voluntary euthanasia and more recent history in the Netherlands, where yearly, officially 1000 people die as a result of non-voluntary euthanasia[39].  It is not possible to ensure that the individual liberties of those who want to be killed today do not become the obligations and requirements to be killed for others tomorrow.  In other words, the actions of a person requesting euthanasia could certainly lead to causing harm to others. 

  Euthanasia, then, presents a real risk to those for whom society has decided they are of less worth than others, who are costly to keep and who are seen as non-contributory economic agents.  People with disabilities and elderly people are already, almost daily, subtly and unsubtly described as such public liabilities.  Professor Wolfensberger has pointed out the various ways in which people with disabilities have been rejected by our society[40].  He has identified wounds such as rejection, distantiation, loss of control, deviancy making, social- and relationship discontinuity, loss of freely given relationships, relegation to low social status and other[41].

  I support Somers’ argument that a broader community interest is served better by supporting life and opposing deliberate killing than is achieved by promoting the individual ‘right’ to be killed[42].  This is particularly pertinent for those who are already considered as second-class citizen.  It is also pertinent to the whole of society as people with disabilities play an integral role within it.  There is meaning  and purpose to their presence.  Diversity and difference are vital aids to human growth and development.

  As Pollard[43] and Somers[44] point out, it is up to the proponents of euthanasia to demonstrate that enshrining euthanasia in law will not result in perverse applications amply demonstrated as serious problems elsewhere.  So far no adequate safeguards are known to be in place anywhere or to have been proposed by supporters of euthanasia.  

  Quality Of Life  

Dr. Helga Kuhse and Professor Singer both argue that it is not longer valid to apply an inherent sanctity of life principle to all individual human beings.  Singer says that we are no different from animals and once certain indicators of a loss of 'quality of life' exist, the individual loses 'personhood', meaning that person is no longer considered to be a human being[45].

  'Quality of life' is, of course, a most subjective concept.  As we have already seen, some people, who themselves do not have this condition, may consider quadriplegia as unbearable suffering, warranting euthanasia.  Such quality-of-life judgements require decisions to be taken about who is worthy to live and who is not.  Yet, it is not possible to judge what quality of life another person is experiencing and such judgements can at best only ever be approximations of the reality experienced by another. 

  Hardship, a meaningless life, futile treatment, pain and suffering, and the non-possession of 'higher' human characteristics such as rationality and self-consciousness have all been proposed as indicators showing a lesser quality of life.[46]  By such 'indicators', many people with disabilities could be judged as not worthy of life.

  These 'indicators' are most probably among those things people fear most for themselves when they exclaim, "Oh, I would rather be dead than be blind, paralysed, deaf, have muscular dystrophy, Alzheimer's disease”, and so forth.  In our Western society, we would rather take a pill to relieve any symptoms of a disease than look for any causes and attitudes within ourselves and address these.  And when something has outlived its usefulness we simply throw it away.  Instead of dealing with the causes of suffering some would rather anaesthetise themselves (and others) permanently by euthanasia.  Similarly so, it seems, with people who remind us of our own vulnerability and weaknesses.  Under the respectable cloak of compassion we have segregated and congregated them, aborted them, withheld 'life-supports' at birth and now seek to make it lawful to kill them.  In doing so, we merely address the symptoms of our broken community rather than address our own values and attitudes underlying such breakdown. 

  Campion is cited by Somerville as proposing "that part of the problem when we react inappropriately . . . to ill or dying persons, is that we see an example of a life that terrifies us.  We see the patient and ourselves, if we were in the same situation, as unlovable.  This raises fear of abandonment, because in a consumer society we only get what we pay for.  We feel that we need to earn love.  If we cannot earn it we will not be given it.  We will die abandoned and unloved, and we would rather be dead than unloved.  Euthanasia is a way to ensure that we are dead before the abandonment and unloving occurs.  The demand for active euthanasia would be greatly reduced if we could alter this perception that love is very tenuous, that it is conditional and must be deserved"[47]. 

  In contrast it is remarkable therefore that so many people with disabilities who have been abandoned and were unloved have themselves continued to live full lives and give love themselves, including to those who abandoned and segregated them. It is suggested that such lives were achieved in spite of, rather than helped by, our consumer society.

  Wolfensberger points out that wherever there is violence, there is deception and so it may well be that some bio ethicists and policy makers are exploiting human fears of 'the other' and promote a misplaced, public sense of individual autonomy, while pleading compassion.  In reality their quest is open to the criticism that it appears to be one for a less 'flawed' human race and to achieve the means to save health and other care costs so that those who are 'worthy of life' may live well, unencumbered by economically unviable hangers-on. 

  Such objectives are after all perfectly coherent with world-dominant economic-rationalism where everything is judged according to its economic utility.  And economists of such persuasion are driving government policies throughout the Western world, including in Australia, as well as in former Communist countries like China and Russia.  And Australia is heading for increasing integration into the 'international market place'.  As Australia does not want to upset such trading partners, we have now legislated to send back pregnant Chinese refugees to their homeland where we know that if this is a second child or one with 'defects', the mother may be forced to undergo abortion and forced sterilisation.   

Instead of supporting life, euthanasia and related practices by another name, dump people into death.  Quality of life has then become “either quality or life"[48].  

Sanctity of Life

  'Sanctity of life' is a fundamentally different concept from 'quality of life'.  It is the acceptance that life is inherently valuable and has purpose and meaning even if we cannot perceive that meaning ourselves.  Sanctity of life is the life-affirming principle which has underpinned our society for a long time.  Not that everyone has always conducted themselves accordingly but nevertheless it has been our most fundamental moral societal benchmark.  It is about unconditional love and respect for others and ourselves.  Legalising euthanasia would remove that fundamental underpinning and replace it with values which would directly relate usefulness of a life, as seen in the context of our contemporary society, to a right to live.  

For instance, in the UK the Select Committee Review on Euthanasia of the House of Lords in 1994[49] unequivocally rejected any change which would result in the medical profession's prohibition on intentional killing.  They reported that this prohibition is fundamental for our law and social relationships and protects every individual equally.[50].

Rights  

Every person, it is argued, has a right to 'die with dignity'.  As has often been pointed out in this age of 'rights', you cannot create a right by merely asserting it to be there.  It has already been said above that the assertion of a 'right to die' may soon become the obligations and requirements for others.  Older people and people with disabilities may feel obliged to begin a conversation about euthanasia as they perceive themselves as a burden to their families and as of limited use to society.  As the media appear to carry stories mostly in favour of euthanasia stories, it is likely that this is already happening.

Gunning points out that “respect for life is the basis of our legal system.  Speaking of life having lost its dignity endangers the life of every handicapped or incurably ill person.  Since doctors need the confidence of their patients, the physician should never be given the right to kill a patient intentionally”.[51]

Depression

  It is well known that depression often precipitates requests for euthanasia or a wish for suicude.  The depression may result from unbearable circumstances or mental illness.  However, if a 'right to die' were enacted it is likely that depressed people would find it easier to find assistance to die than they would to have their circumstances or illness addressed.  For example, a person in the Netherlands who was not terminally ill, but who had a psychological problem was assisted to die, and the doctor involved, while prosecuted, was not convicted[52]. This was performed as an acceptable implementation of euthanasia.  Instead of addressing the causes, the person is dumped into death.  This is a clear example of  'dying with your rights on'.

  It is noteworthy that among the most outspoken proponents of euthanasia are organisations of people with AIDS/HIV.  They commonly assert compassion and autonomy as their main reasons for doing so.  In Holland in 1989, 11.2% of AIDS patients officially died by active euthanasia[53].  Some put this figure as high as 23%[54].  Somerville points out that this  group belongs to one of the most stigmatised and likely to be abandoned people in the Western world[55].  She states that in our

  consumer society they are not only seen as “useless products” but also as “harmful ones”[56].  It would seem that some AIDS/HIV groups have chosen to address suffering primarily through accelerated death, rather than through palliative care.  One wonders, whether depression about rejection by society and loved ones doesn't play a major role in this approach.  Pollard for instance states that 85% of terminally ill people develop depression.

  Cost Of Care

  It is sometimes argued that it would be  cheaper to kill someone and spend the money saved elsewhere, rather than continue to pay for care and treatment for someone who will die anyway.  The Economic Planning and Advisory Council projected that Australia will not be able to look after its ageing population without radical measures such as euthanasia[57].  Dr. Colin Honey, a Perth ethicist has publicly argued for instance that people aged over seventy years should not necessarily have access to certain medical treatments unless they pay for it[58]. 

  It is not a great leap from rationing arguments for the elderly to similar arguments in respect of people with disabilities, some of whom may already have reduced lifespans.  It does not yet seem to have dawned on these sprightly octogenarians that regularly jump up at euthanasia forums in favour of legal euthanasia, that no one is immune from the possibility of disability at any age or age itself.  This possibility includes their sons, daughters and grandchildren.  Will they perhaps bear the adverse consequences of legalised euthanasia within a concept of ethics of which rationing of services is an exponent, i.e. utilitarianism. 

  Besides, Baillie claims that "palliative care can be delivered equitably and in a cost efficient way, through the strategic resourcing of small palliative care teams to work in the community and in hospitals alongside existing health care teams without duplication[59].  These models already exist and can cover large populations of people in a very cost effective way.

  Financial cost of course is important, as any resources are finite, but as Lickiss says, “The cost to society of keeping some incurable people alive may be very great.  However the disastrous decade of the 80's in which the cost to society of the breakdown of business ethics and moral failures has been so extreme that surely no Western society will look only at dollar cost when assessing the impact of some practices.  It has been well said that the dollar cost to society of moral cripples is greater than the cost to society of all the disabled or incurable people receiving care”[60]

More than anything though the consideration of cost to support life has ultimately more to do with what values and priorities we set as a society, rather than limits of resources.  If one wishes to address the issues of cost, then it would be more appropriate to look at the causes such as the symptom-treating nature of our health care system, which will always, necessarily, be a costly way of treating diseases rather than people.  With overpopulation, a related matter, similarly, we need to look at addressing the causes rather than to kill 'excess' numbers of people.

A Moral Advance For Society?

Euthanasia was, as described above, promoted and seen as a 'moral', merciful advance for society during the early stages of the Nazi German slippery slide.  In the Netherlands Somerville reports, there are claims that the highest terms of praise have been applied to the request to die - this act is ‘brave’, ‘wise’ and ‘progressive’.  All efforts are made to convince people that this is what they ought to do, what society expects of them and what is best for themselves and their families.[61] Calling euthanasia a 'moral advance' could be seen as the deception Wolfensberger refers to as always accompanying violence[62].

 

Morality is, of course, dependent on one’s worldview and accordant beliefs. It is worth noting that the Netherlands is a very secular society and that under these circumstances and an attendant economic-rationalist approach to life, it is not surprising that euthanasia is seen as a moral advance.  From a sanctity of life point of view however it is impossible to see as a moral advance the killing of those who are dying rather than address their suffering.

Doctors As Killers 

If doctors would by law be enabled to perform euthanasia then the traditional role of a doctor as healer would be greatly undermined.  Doctors as killers can never be trusted as healers and to allow this situation to come into existence would be a perversion of the proper aims of medicine[63].  One needs to ask whether euthanasia could be used to cover for poor medical practice and whether the availability of euthanasia could act as a disincentive for improvement of standards of care.[64]

Legalized Euthanasia as a ‘Safeguard’ 

“Euthanasia is already performed regularly, let us legislate to have safeguards against abuse.”   When we hear this kind of statement, we should caution against including palliative care practices which may have the unintended effect of accelerating death.  As already indicated, this is not euthanasia, but good medical practice.

No doubt euthanasia is practiced from time to time by certain doctors.  More recently three doctors in Victoria have come out to say they have committed active euthanasia on persons who had AIDS[65].  The first thing that needs to be said about this argument is that just because something may be happening regularly is not a reason in itself to make it legal.  Robberies, break-ins, murder and rape happen regularly in Australian society.  No one has been proposing that we ought to therefore make these activities legal in order to regulate and monitor them.  The second thing is that to make something legal does not necessarily mean that this makes an activity a morally and ethically correct one. 

We have legislated to prevent people from harming and killing themselves through cigarette smoking.  It is probably indicative of a confused society where we have legislation protecting rights to care and support, legislation which intervenes in people harming themselves, and legislation which seeks to kill people before their time, all at the same time.

In our confused society where politicians are driven by a lowest common denominator of public opinion (as witnessed in the recent New South Wales election where opposing parties outbid each other on who would implement the harshest punishment to criminal offenders), no safeguards in law could ever protect institutionalisation of euthanasia as a right for some to become the obligation for others. 

To date, no credible safeguards have been proposed by the pro-euthanasia lobby, nor have any been shown to have any practical value where attempted. This is amply demonstrated in the Netherlands, where non-voluntary euthanasia is probably practised on thousands annually.  John Fleming for instance has calculated that 55% of the 10,558 cases given in the Remmelink Report, where there was an explicit intention to hasten the end of life by act or by omission ... were cases of non-voluntary euthanasia.[66]  

Fear Of Dying, Palliative Care And Worldviews

  Most people involved in palliative and hospice care emphasise that their practice can alleviate unnecessary suffering, that it is to allow the natural processes of life to run their course and one may learn important lessons in that time.  They are practically unanimous about the fact that if palliative care is of a good standard, no patient will ask for euthanasia.  More often it will be the family, rather than the patient, who asks for euthanasia. 

Dr. Richard Lamerton, a British hospice director says, "If anyone wants euthanasia, he must have pretty poor doctors and nurses. It is not that the question of euthanasia is right or wrong, desirable or repugnant, practical or unworkable.  It is just that it is irrelevant.  We as doctors have a duty so to care for our patients so that they never ask to be killed off. Dying is still a part of living.  In this  period a man may learn some of his life's most important lessons".[67]

 

Palliative care is now said to be of such high quality that no one has to suffer unbearable pain or discomfort.  If a doctor cannot provide this level of care he may be medically and, rather than pursuing euthanasia, better palliative care practices - such as the training of doctors - should be pursued.

 

Dr. Kubler-Ross, who has helped thousands during their dying said, " We are created for a very simple, beautiful and wonderful life.  My greatest wish is that you will start looking at life differently.  If you accept your life as something you were created for, then you will no longer question whose lives should be extended and whose should not.  No one would ask if someone should be given an overdose in order to shorten his or her life.  But dying should never mean having to suffer.  Nowadays medical science is so fantastic that anyone can be kept pain free.  If your dying ones can be kept without pain, dry and nursed with care, and you have the courage to take them all to your homes- I mean all, if possible- then none of them will ask you for an overdose.  Within the last twenty years only one person asked me for an overdose.  I did not understand why and sat down and asked him: "Why will you have it?"  And he revealed to me:  "I don't want to have it. It's my mother.  She cannot take my situation any longer.  That's why I promised her to ask for an injection".  Naturally, we talked to his mother and we could help her.  You must understand that it was not hate which brought her to this desperate point.  It was simply too much for her to endure.  No dying patient is going to ask for an overdose provided he is cared for with love and is helped to finish his unfinished business".[68]

 

Some motivations underlying the lobby for legal euthanasia may be based on an assumption that death is the end of everything; that there is no point in prolonging something considered as futile and that if there are at all any lessons to be learned at death, they are not going to be of use to anyone.  Therefore it is not considered important to 'complete' a life through dying in its own time.  Any distress during this time is therefore also pointless.   The logical continuation of this rationalisation is, of course, that our whole life must therefore be pointless as any learning we do in our lifetime will only be discarded in the big garbage can of death.  This loss of meaning and purpose is no doubt contributing to the high suicide rates in the Western world.  In this context and considering that Australia is said to have the highest suicide rate of young people in the Western world, it is interesting that we now see a wave of euthanasia Bills across Australia.  As a country we must be a very depressed people.

 

A felt separation from any Greater Spirit, Universe, Cosmic Consciousness, God, or whatever you want to call it, is endemic in our Western, materialistic and reductionalist society.  This separation has enabled us to pretend actions can be value-free and God has been replaced by Science. 

Inherent in this is that we consider we should be in control of everything and that we alone give meaning to everything around us.

Therefore, instead of having learning as a main purpose of life, right up to the moment of death, we try to solve our alienation by making material comfort the dominant meaning in life.  If our meaning of life is thus restricted to material well being, euthanasia will seem the logical answer when faced with a situation which cannot be otherwise controlled and which appears as a major threat to our comfort.

Singer[69] argues that the traditional Judeo-Christian approach to life is out of date and that modern life requires different values to be applied to life.  This is the debate of 'sanctity of life' vs. 'quality of life' as briefly explored above.  Charlesworth[70] on the other hand argues that personal autonomy is a Christian Doctrine, suitable for our liberal society.  Modern science[71] however has constructed a new worldview which is different from the current materialistic and utilitarian one.  It has recognized the interconnectedness of everything.  Such a worldview challenges our separate and disconnected interpretation of life and the events which fill our lives.  These scientists also believe that consciousness preceded material evolution, whereas I believe the still widely held existential view is that consciousness arose from material evolution of life.  These findings are strikingly similar to Judeo-Christian and other major religions’ teachings.  If one believes every action and being has meaning and purpose and affects the whole and that a consciousness underlies a physical manifestation of our world, we have a very different paradigm to the one euthanasia is founded on.  To see meaning in life, and death, is to lead a healthy life.  This also applies to a society and its beliefs.[72]

The different Worldviews have a profound effect on one’s attitudes towards life.  It appears that it is not the Judeo-Christian and other major world religious views which are out of date but the views of those bio-ethicists who are still holding to a reductionist and material worldview in spite of scientific developments over the last century. 

Whatever one’s personal beliefs in this area are, the facts about dying are often very different from the myths held by proponents of euthanasia.  It may be comforting to reflect on Lamerton's words for those who have lost a sense of meaning in death,

"Distress in the last hour is rare and the fear of it is a morbid twist in our culture.  The idea of suffering may well be projected onto a person by distressed spectators who are in fact dreading their own imminent bereavement.  There is on the contrary

 

 

almost always a rather beautiful giving in.  The person withdraws serenely and willingly, as gently as an ocean liner slips away from the quayside".[73]

Community

Euthanasia is both a sign of a breaking down of society and is in itself destructive of community.  Its underlying values are contrary to the Disability Discrimination Act 1992 (Cth), the Disability Services Act 1986 (Cth), the State complementary legislation and the Commonwealth Disability Strategy.  Legalising euthanasia is directly contrary to wanting people with differences included, protected, participating and empowered within our society.  Instead its utilitarian rationale precludes some unwanted fellow human beings from entering this world, and accelerates the departures of others.  One argument used to defend segregation of people with disabilities is that the community, relatives and friends, cannot or will not extend the love, support and care necessary to live a quality life.  The answer to that has been that we need to transform attitudes and values so that we have a more inclusive community which will welcome people with differences. 

 

This is the ultimate aim of the above mentioned disability legislation and of government funded disability advocacy and services.  Instead of putting people away, let us face the causes of their distress.  We can address these through good palliative care.  Good palliative care is an excellent example of 'community'.  And examples of community have the power to create more community.

 

Scott Peck describes four elements of community: Open and honest communication, accepting differences, dealing with difficult issues, relating to others with love and respect.  On all four counts euthanasia fails these benchmarks of community.  First, there is widespread deception about the real underlying values and motivations for legalizing euthanasia.  Second, the value system behind the legalization of euthanasia does not incorporate a valuing of differences.  Rather, it removes differences from sight through killing those who are different because of old age, disability or disease.  Third, euthanasia is a simplistic response compared to the complex responses needed to address pain, discomfort and maintenance of dignity while living.  Fourth, it can be argued that acting on the perceived  wants of individuals does not necessarily mean that we therefore accord that person love and respect. It can be more difficult and painful to try and understand the distress that underlies the expression of wants and try to address these instead. 

 

It is also clear that the values and practice of palliative and hospice care are in line with Peck's characteristics of community.  Most people would agree that we all need community, relationships and opportunities for learning.  In practice, however, this is perhaps often perceived as too much hard work and we look for an easier way out. Just because there are easier options does not, however, make them the right ones.

 

Somerville asks therefore whether the ‘easier option’ of euthanasia is the "final act of love" or an “isolation ritual . . . expelling undesirable individuals from the collective”.[74]

 

Somerville also says that “we can agree, none of us is pro-suffering and none of us is anti-death when its time has come”.  It is the way we deal with that time when it has come which sets the telling benchmarks for either a civilisation or for a 'brave new world'.[75]

 

 

Implications For People With Disabilities and For Advocacy

 

Euthanasia when not legalised and continuing as a hidden practice means people with disabilities are of course still vulnerable to being killed.  There are anecdotal stories from parents who have taken their children with disabilities to doctors for treatment of non-life threatening conditions and who received strong hints from their doctors that perhaps they could offer death in the name of treatment. 

 

Older people and people with severe disabilities are at risk of receiving less than adequate care and treatment, potentially leading to premature death[76].  Some newborn babies with disabilities are being killed in hospitals now, either through withdrawal of treatment or over-treatment with drugs.  Amniocentesis is really only carried out in order to detect a ‘defective’ baby who can then be aborted.  The Human Genome Project attempts to map all human genes with one of its aims the eradication of diseases and '‘deformities’ in human beings - a ‘cleansing of imperfection’.

 

Illegal euthanasia can at least be addressed through prosecution of its performers and such action would confirm the important ‘sanctity of life’ principle.  Mostly however, we need to realise that the law is not an answer to prevention or practice of euthanasia.  It is a question of 'community building' in our own communities - where we welcome all regardless of differences - which will provide the best safeguards to the right to life and wellbeing for all.  For it is the contemporary breakdown of community which has led to the devaluing of life today.  Legalized euthanasia would vastly worsen the present situation and it is feared that it would eventually lead to killing of unwanted and ‘costly’ human beings, voluntarily or not.

 

Roy and Rapin point out that legislation of euthanasia would be dangerous as it ‘presupposes a world of ideal doctors, hospitals, nurses and families’.  They see we do not live in an ideal world and that central arguments supporting euthanasia rest on five flawed premises:

1.      Euthanasia, once legalised and socially acceptable would remain voluntary and vulnerable and burdensome patients would not be subtly manipulated and pressured to request termination of their lives.

2.      We would continue to resist the extension of euthanasia to those who are irreversibly unable to request or consent to termination of their lives.

 

3.   The legalisation of euthanasia would protect doctors against lawsuits and would minimise the chances of doctors being brought to trial.

4.   With euthanasia legalised, we would remain a caring society, ready in times of budgetary constraints to invest money and resources to develop humanitarian programs of palliative medicine and palliative care.

5.   We could never, as have civilised societies before us, slip into intolerable abuses of legalised euthanasia.[77]

 

Vigorous advocacy is needed to protect the lives of people with disabilities as one vulnerable group.  Lickiss for instance has suggested that the A.M.A. should support registration of personal advocates in patient records or on driver’s licences in circumstances where the patient can no longer make their own judgement.[78]  The task of advocacy however, would be not only to protect, but to draw attention to the necessity of a valued presence of people with disabilities in our society.  This necessity relates to the interdependence and diversity which is so essential for a whole and healthy society.  This advocacy would need to be very mindful of the most pertinent issues for those most vulnerable.

Next to advocacy there is a need for community builders and facilitators of community.  Inclusion of all people in community is inherent in this community building.

Inclusion itself of people with disabilities in school, work, leisure, local neighbourhoods and other forums will lead to better relations and understanding between people, if done carefully and over the longer term.  In real community there is no need for euthanasia because people accept the inherent meaning of every individual's life.  They know and care for each other.  They will extend to those who are dying, the best possible palliative care.

 

Existing legislation, such as the Disability Discrimination Act could be tested to see whether it can protect lives of people with disabilities now subject to killing before and immediately after birth.  In doing so however, caution should be used as legal routes are often not those which create community. 

 

The seriousness of the euthanasia threat to people with disabilities needs to be fully appreciated by their existing advocacy and peak body groups.  They will need to understand that to continue to agree to an agenda of individual autonomy and choice and individual rights may lead to a physically accessible society for those economically productive people with disabilities, but where the ‘non-viable’ will not be supported to live. 

 

Advocacy and change agents will need to focus energy on those issues which are most crucial for those who suffer the greatest neglect and abuse in order to best advocate for the human needs of all people with disabilities.  Such refocussing may be seen by some as too problematic and difficult, or even as unnecessary.  The 'easier' option will still be to merely advocate for the publicly 'prestigious' areas for which one can obtain the kudos.  For there is no doubt about it that it would

take a courageous group to understand and face the cost that would undoubtedly be incurred in taking up the cause of community and inclusion against the ultimate segregation - euthanasia.

About the Authors

 

JENNIFER FITZGERALD was employed as an advocacy worker with Queensland Advocacy Incorporated from 1992 until October 1997.   Jenny’s  work focused on bio-ethical issues as they impact upon people with disability.  She holds a Bachelor of Laws from the University of Queensland and a Bachelor of Economics from the Australian National University.  She is admitted as a Barrister of the Supreme Court of NSW.  Jennifer is the author of Include Me In: Disability, Rights and the Law in Queensland.

ERIK LEIPOLDT is a long time advocate for the rights of people with disability. He is currently Convenor of the Australian Advocacy Network and a member of the Guardianship and Administration Board of Western Australia.  He holds a Bachelor of Social Science (Human Services) and is presently completing his Honours.  Erik has had quadriplegia since 1978.