Issue 11 / 31 March 2014

SHOULD we have the right to end our lives at a time and in a way of our own choosing, and what role might the medical profession play if we did?

I wrote recently in this blog about a philosophical argument that sees no valid ethical distinction between allowing someone to die by withdrawing medical treatment and actively killing them.

In countries like Australia, where both euthanasia and assisted suicide are illegal, medical guidelines and the law take a different view.

Earlier this month, the NSW Supreme Court ruled that a patient’s decision to refuse medical treatment could not be considered suicide, “even in the knowledge of certain death”.

The ruling related to a young man, known to the court as JS, who had quadriplegia from age 7 years and was seeking to have his mechanical ventilation turned off on his 28th birthday so that he could die.

JS had described his deteriorating medical condition as “intolerable”. Doctors said all reasonable treatment avenues had been exhausted for his autonomic dysreflexia associated with episodes of acute respiratory distress.

The local health district operating the hospital where he was an inpatient sought the court declaration to ensure staff would be acting within the law if they complied with their patient’s wishes.

The court heard that late last year, JS was the author of a letter to his doctors, nurses and other carers addressing “a very difficult and upsetting topic”, which he had thought about for some months.

“As you know, over the past two years, my body has begun to deteriorate rapidly and because of this I have also begun losing my quality of life”, the letter said.

“There have always been difficulties and compromises that I have met, but now that degeneration is outpacing the counter measures … it is my wish that the life sustaining mechanical ventilation which has kept me alive for the last nineteen years be ceased soon at an agreed time and place. Please give me the control over the care that I receive that every other patient is afforded, and I know is my right.”

Although JS wished to have the ventilator turned off on his birthday, the court heard he was prepared to delay if necessary to ensure his organs could be donated. Fairfax Media reported that he died soon after his birthday and his wish to donate his organs went ahead.

This young man was able to choose to end a life that had become intolerable to him because he was dependent on mechanical ventilation to stay alive.

Euthanasia advocates might argue he should have been able to make that decision regardless of whether he was able to breathe independently or not.

I say “might” because not all euthanasia advocates believe the same things.

I recently chaired a session at Adelaide Writers’ Week with long-time campaigner Dr Philip Nitschke, who goes further than most in arguing the case for legal change in this area.

“I believe that every rational adult should have access to a reliable, peaceful and lethal pill that one keeps at home,” he writes in his recent memoir, Damned if I Do.

As he made clear in Adelaide, he believes each individual should have the right to make this decision , without needing the approval of the medical profession or courts.

It’s a controversial view and Dr Nitschke has frequently come under attack for espousing it. He is currently facing several challenges to his medical registration and has been criticised from within and without the euthanasia movement.

Opponents of legal euthanasia often make the “slippery slope” argument. If you allow it in the most clear-cut cases — terminally ill people whose discomfort cannot be relieved, for example — you will soon find it being extended into more murkier situations.

There’s no doubt that the potential for abuse is there and that laws can have unexpected consequences, but does that justify not even attempting to find a way through?

I don’t know the answers, but I do know that if I ever have to face a similar situation to that of JS, I would want to be able to decide my fate — whether I could breathe on my own or not.

 

Jane McCredie is a Sydney-based science and medicine writer.

11 thoughts on “Jane McCredie: A personal choice

  1. Johnny Khoury says:

    Jane – N

    ext time you speak to Dr Nitschke, ask him if he wouldn’t mind trying out one of those “reliable, peaceful, lethal” pills.

  2. Richard Middleton says:

    @JJ.. 

    Not a very helpful comment and I would suggest, indicates you have never listened to Dr. Nitschke.

    IMHO, Dr. Nitschke is quite right. Unfortunately, all this talk about our various rights or not, has confused the situation. There is only one real right of any sentient being and that is to chose how and when it dies. All else is secondary. There are the needs of course, food and water, shelter and warmth.  All other “rights” we assign to ourselves after these “needs” are met are in fact merely “wants”.

    The confusion has allowed a great many parties with various (often self) interests, to insert themselves into the discussion. It is not for some self indulgent pious person espousing their personal religious fantasies to tell others what to do.

    The safeguards are really quite simple.

    All that is required is to determine that the person who wishes to die is able to make the rationale decision, unimpaired or influenced by any condition, including depression, that is amenable to sufficient improvement and is not under duress or coercion.

    Widespread adoption of this simple process will be the difficulty, particularly, as demonstrated by JJ above, there are those who either do not, can not or will not, understand what others are saying, doing or feeling.

    There is an empathy gap, filled with too much dogma.

  3. Max Kamien says:

    There are strong parallels between the controversies about abortion in the 1960s and voluntary euthanasia in the 2000’s. In both cases the law has lagged behind public opinion and caused suffering to Australian citizens. In both situations there was a courageous champion who fought to right a grievous wrong. The first champion was Dr Bertram Barney Wainer, an Australian hero of the highest order. He took on the Victorian police, the Catholic Church and the Australian Medical Association. They used their power and influence to try to destroy him.

    Forty years on, Australian women can make their own decisions and the horrors of backyard abortions have ceased.

    Some 80% of the population are reported to be in favour of voluntary euthanasia for people with intolerable lives either from pain or disability.

    The champion for these patients is Dr Philip Nitschke.  One day he too will be ranked alongside Dr Bertie Wainer as a true Australian reforming hero. His detractors, opponents, and would-be destroyers are also from the Catholic Church, a small number of medical practitioners and a host of insecure and fence sitting politicians. Voluntary euthanasia is legal in a few Western countries so it is likely that public opinion will cause Australia to follow.

    Currently, the 20% tail wags the rest of the dog. In the not too distant future, the dog and its owner will be able to leave the tail to its own painful and undignified devices. That is when the patients who have trusted me to help them and whom I have so miserably failed, will stop asking me: “Why can’t I die (a peaceful death) like my dog?”

  4. Peter Bradley says:

    I totally agree with Richard and Max above.  I could not say it better.  Having watched my own morther die miserably of ca bowel, where she was so wasted I could not recognise my own mother.  I even resorted to putting her glasses on her unconscious face to see if that could make me recognise her and feel more connected there at the end.  Even then, she passed away in the middle of the night alone, while I grabbed a short rest.

    It occurred to me then most clearly that there are two aspects to this whole issue.  One has been alluded to – we can treat our sufferring pets better than we can ourselves.    Palliative care is great…but when all dignity is lost and that’s worse than pain….

    But also the question of timing.  Especially now, with the trend for families to be scattered round the world.  My son and family are in London, for example.  How much nicer would it be, if, knowing one’s days are definitely numbered, one could be able to settle on a ‘deathday’, as a celebration of one’s life – we had no control over our birthday, after all.  Then family and friends could gather from wherever, everyone say what they wanted to say, then wave goodbye as one flicked the switch – pressed the button or key – whatever, and the funeral could be held promptly soon after.  Loved ones could then depart, having been able to feel they were part of an memorable experience, and able to say those things regrettably previously left unsaid, rather than just getting there for the funeral and robbed of that opportunity forever.  I think that would be really civilised.

  5. John buchanan says:

    The heading “A personal choice” implies that no-one else is affected by a change to the law to permit euthanasia (homicide by agreement).

    Elder abuse is a well recognised phenomenon now, and in the situation where a vulnerable ill person is taking decisions about these issues, they are clearly open to inappropriate influence from uncaring (and possibly greedy) relatives, and one would have to include some medical and nursing practitioners. 

    If we think further about unintended consequences it would not be very long before bureaucrats would be calling for terminally ill patients to have their lives terminated because they were blocking beds. 

    So we must recognise that a law change to permit “homicide by consent” is not just a personal matter, but involves a wide number of people in the community, and there is a need to evaluate whether that is in the common good.

  6. Geoffrey Chu says:

    Is there is an ethical difference in ending one’s own life by: A) refusing or B) withdrawing life-saving treatment or C) introducing an intervention? Our response will influence whether we sanction euthanasia or not. Euthanasia is an equivocal term. Most agree with the right to A). Stance on B) depends partly on clinical context as per comments in your last blog Drawing the line. Generally B) is less contentious than C). Quality of life & intolerable suffering are subjective & are ultimate determinants for most.

    To appreciate diversity of views, it’s helpful to contrast Naturalism with Theism by examining: i) purpose of life (PL), ii) role of medicine, iii) moral values & duties (MVD) & ontology, iv) life after death.

    NATURALISM: i) Subjective. No ultimate purpose. ii) To restore health, extend life or palliate guided by naturalist PL. iii) Product of sociobiological evolution. Objective MVD do not exist. iv) No after-life.

    THEISM: i) Love God & each other, ii) Same goals as Naturalism but guided by theistic PL. iii) Objective MVD exist by virtue of God’s character. iv) After-life exists.

    Your stance on right of self-determination (i.e. time & mode of death) therefore depends on your worldview. Validity of your stance is governed by the truth of your worldview. Critics are rightly concerned that the slippery slope is not only logically consistent with Naturalism but to be expected. On the other hand, if Theism is true, there’s more to it than mere existential considerations of Naturalism. In the final analysis, examining the rational basis of differing worldviews is key to understanding the logical consequences of adopting one view over the other.

  7. Dr Kevin B ORR says:

    There is another group of patients not included in the above discussion – complete aments. They just lie there gazing into space, can’t move, can’t communicate, can’t recognise loved ones, just a living body and no brain. They cannot give permission for anything. Maybe they don’t suffer either but surely they are a prime case for a merciful and quick end a bit like “water rats'” suggestion on 1/4.. KBO

     

  8. Mark Smith says:

    Wainer and Nitschke heroes? Hardly likely, try Bernard Nathanson who came to recognise the horror of abortion and Mother Teresa who provided practical assistance to the dying instead.

  9. Geoffrey Chu says:

    KBO raises an important issue. Does a being such as an anencephalic which lacks sentience, intellectual activity, intentionality and inability to exercise libertarian free-will warrant “a merciful and quick end”? This would appear to be a logical contradiction because such a being would have no awareness of self nor of the surrounding world. Suffering, mercy or experiencing the passage of time is meaningless to such a being.

    
More importantly, what constitutes the moral worth of humans? On Naturalism, humans are not objectively and inherently more valuable than any other creature or substance in the cosmos. Any moral worth that humans ascribe to themselves is arbitrary. On Christian Theism, the moral worth of humans is by virtue that they are creatures of God. They possess inalienable rights because they have intrinsic moral worth which is externally conferred, independent of human opinion and tradition.

    
Do aments qualify as human beings? Which ones and if so on what basis? Congenital aments, acquired aments (e.g. trauma, disease), potentially temporary aments (e.g. vegetative states, anaesthetised individuals) or premature aments (e.g. embryos, foetuses)? On Naturalism, it is arbitrary and hence changeable, being dependent upon operational definition of what is deemed to be a human being. On Christian Theism, moral worth is by virtue of being a human creature period. It is unchangeable because God’s character is unchangeable.

    In either case, for those who are incapable of deciding for themselves, deliberations regarding life-saving therapy, withholding or withdrawing therapy or actively hastening death, are left to legal guardians who are informed by their worldview.

  10. Tony Krins says:

    LET ME DIE WELL.

    When the end is finally nigh

    And it is clear I’m going to die,

    When only suffering is my due

    And all my options Oh, so few,

    Give to me my rightful power

    To choose the means and choose the hour.

     

    To block my personal wishes then,

    With narrow rules of callous men,

    Whose bigotry does clearly show,

    Is cruelty, as we do know.

    Give back the basic right to die

    The kindest death that money can buy.

                                                                                     Tony Krins

     

  11. Geoffrey Chu says:

    Down with Bigotry’s (DWB) moving poem is noted. Without negating the existential issues of suffering that DWB has raised, there are broader considerations which are equally weighty that DWB has not discussed.

    Reiterating previous considerations, withholding or withdrawing life-sustaining therapy in the approrpriate clinical context is relatively uncontroversial. The introduction of an active intervention for the sole or major reason of promoting death is another matter.

    If DWB is to make a rational persuasive case (rather than just an emotional appeal), DWB needs to clarify the following:

      1. What means of death is DWB advocating?

      2. The slippery slope phenemonon and implications for the much broader population has not been addressed

      3. What argument does DWB present for the premise that after-life does not exist and hence there could be no possibility of suffering after death?

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