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AT a recent national medical students’ conference in Melbourne I spoke about voluntary assisted dying, describing it as “a process of open discussion about dying”.
I told the conference that an open discussion “allows informed decisions by competent individuals, supported by their doctor with assistance in living so long as the person finds meaning in their life, and the prescription of oral medication, if the person requests it, that the person can take, or not, in their own home, at their own time, surrounded by whomever they choose to share their dying experience and say goodbye”.
I argued for this option on the basis of six medical “givens” about the end of life.
These givens are that:
• Dying may be associated with intolerable suffering that may rise to a crescendo as death approaches
• Some suffering will only end with death
• Doctors have a duty to relieve suffering
• Palliative care cannot relieve all pain and suffering
• Some patients do rationally and persistently request a hastened death
• Doctors have a duty to respect patient autonomy.
What palliative options currently exist for persistent and rational requests for a hastened death in the face of unrelievable and intolerable suffering?
The American Academy of Hospice and Palliative Medicine cited three. The first, refusal of life-prolonging treatment (not an option many patients have); and second; voluntary refusal of food and fluids — may result in slow dying over some days, and there was no mention of palliation of associated suffering.
The third option was the offer of “palliative sedation, even to unconsciousness”. This is a process of titrated medication, controlled by the doctor, not the patient, which again may occur over some days. It is usually associated with withdrawal of fluids.
It is a process that clearly leads to death, albeit slowly. Some palliative physicians have called it “slow euthanasia”.
The slow titration approach to palliative sedation is not based on legal concerns — a doctor providing medication with the intention of relieving pain and suffering, which foreseeably hastens death, has no legal problem. The AMA Code of Ethics supports this approach.
The palliative care problem stems from its philosophy, which states that palliative care neither prolongs dying nor hastens death. The patient may suffer a partial relief of suffering and a slow death to protect the moral interests of the physician. In whose best interests is the doctor acting?
The federal government is seeking submissions on the exposure draft of the Medical Services (Dying with Dignity) Bill 2014, which includes reference to the rights of terminally ill people to seek assistance to end their lives.
However, governments in Australia currently support palliative care, stating that it renders the option of voluntary assisted dying unnecessary.
This ignores a significant problem — the not too occult religious philosophy underpinning palliative care, 60% of which is provided by the Catholic Church in Australia. This, of course, puts much practice in a specific moral and ethical framework, which may be quite contrary to that of those being treated.
Don’t just take my word for it – read the work of UK palliative care consultant Fiona Randall, English sociologist Julia Lawton, University of Queensland associate professor of sociology Alex Broom and Australian palliative care physician Professor Ian Maddocks. All speak of experience from within palliative care.
Many doctors avoid or deny conversations with their patients about dying for a number of reasons. It can be difficult if you are not accustomed to it and some doctors are ignorant, or are in fear, of the law. And some may have a moral difficulty in talking of voluntary assisted dying.
But for many patients, just being able to talk openly about their fears and distress can be therapeutic, and such requests should not be met with a flippant remark such as “don’t worry, I won’t let you suffer”. Just discussing the option of voluntary assisted dying with a patient can have a profound palliative effect.
I can find no logical reason why a person, dying with unrelievable suffering, loss of meaning and control, should, by law, go to the very end of the line. Many patients say that they would like to die at the end of the day, as the sun is setting, rather than go in the dark night.
At the medical students’ conference, I asked these neophyte doctors to compare these two ways of dying for a person who had fulfilled the six medical “givens”.
Would they respect their patient’s autonomy in this circumstance?
Dr Rodney Syme is the vice-president of Dying with Dignity Victoria.
Bravo Dr Syme. This must be made law. Anyone who has sat through palliative care would certainly not want that for themselves or anyone they loved. You are an Angel to listen to the people who are actually dying and give them dignity in death.
I sit with my husband 12 hours every day, watching his suffering, wishing I could help and free him from his pain and anxiety. He never wanted to go to a nursing home, and I promised him that I would never put him in one. His wishes were that we would all go out one night, have a meal, go home, and finalise it all with a glass of whisky. That was to be his wish to end his life when the time was right. That time came almost 3 years ago when he was diagnosed with an incurable illness. No Treatment, No Cure we were told on that terrible day. I was told that he would never be able to come home. When they mentioned a nursing home, we both cried for the whole day. He told the doctors in the hospital that he would take Plan B. When they asked what Plan B was, they were horrified It was his wish, but He was already in the system.It is cruel to keep a person alive against their wishes. Animals, we treat very differently, and when they are ill and suffering, we euthanise them to free them from any pain. Sadly, we make humans suffer.He is unable to talk, can’t move himself (has to be turned every 2 hours), can’t feed himself, is eating very little, and is just wasting away in bed.He can’t see the TV, can’t read a book, and when I leave him at night, I know that he will be just lying in his bed, maybe in pain, maybe suffering an anxiety attack, and this will go unnoticed, because I am his voice, his eyes and his ears. Palliative care know what his wishes are, but it falls on deaf ears. They will not do anything to hasten his final journey, and so I sit here all day, every day, seven days a week,watching him suffer, sometimes in terrible pain. Where is the dignity in that? We need to get the laws changed, and respect a persons wishes.
My “Dad” is dead. The jovial, chatty, happy little man who never sat for more than 5 minutes is dead. Once always busy doing “something”, his hands now lay like wounded pigeons in his lap – where the nurse put them. An occasional “twitch” but nothing more. Staring into space.
What remains is a shell, a corpse of the life he once led. No longer speaks, no longer can sit unassisted – let alone get up & walk. Hour after hour, day after day, just fed an ongoing stream of pills and medications, just to keep this shell alive. I call him “my father” for medical purposes – but I no longer know that man.
I’ve already said my goodbyes – whilst he was alive – whilst he knew who I was.
This “shell” is now carted from a bed to a chair and back again, is now fed pureed foods, no longer the steaks he used to enjoy.
Yes, I’d have him euthanised in a minute. I’ve so many times thought about going into his room and pumping him so full of insulin that he goes into a diabetic coma and stops finally breathing.
Sweet blessed release for a shell that doesn’t know it’s time to stop.
There is NO dignity in keeping him alive – only daily torture for keeping him prisoner in his own useless shell.
Speaking of abuse, is not the worst form of abuse to insist that a person continue to suffer, to lose her dignity, her control, her personhood when a peaceful, dignified death could be an option? Or, to drag out the suffering with terminal sedation or not eating and drinking? If people don’t like what Dr. Nitschke is doing, i.e., providing information to people so they can have the peace of mind knowing that they can take matters into their own hands when their suffering become unbearable and die with some dignity left — then pass a law, as Dr. Syme suggests. If doctors don’t want to do this then what is left but to rely on do-it-yourself methods? Or have a few courageous doctors openly decalare that they are breaking an unjust law to provide a legitimate medical solution to a problem that no longer has a cure, just a peaceful death? If religious people don’t want to do it this way that there’s option — don’t make the rest of us suffer!
It is vital in dialogues as this that Dr Symes declares his worldview. His discussion on matters of respecting patient autonomy, his preference for assisted death and his premise that death solves the problem of intolerable suffering belies a more fundamental philosophical position that requires clarification and merits further discussion.
I’d be grateful if he can kindly respond to the following questions:
1. What is your ultimate explanation for all biological life?
2. What assurance can you provide that the slippery slope phenomenon will not occur with the introduction of euthanasia*? (*i.e. where the aim is active measure(s) to shorten life for the sole purpose of relieving suffering)
3. Do objective moral values exist? These are moral values which are universally and unchangeably true, valid and binding regardless of history, tradition, social trends or personal beliefs. Examples of objective moral values include moral virtues (e.g. the golden rule, empathy, compassion) and moral transgressions (e.g. rape, torture, child abuse)
4. Are human beings composed of body and soul or are we basically matter? (i.e. entirely accountable on the basis of physics, chemistry and neurophysiology)
In anticipation of your reply, thank you.
I am puzzled by Bob’s comment ”physical pain can always be relieved, if needs be by terminal sedation”. What is the difference between ”terminal sedation” and assisted dying, and why would doing it slowly be better? (I am referring here to the process at the end of life – not to assisting suicide in people who are not already dying).
Dr Syme ,as he always does,based his whole argument on autonomy of the patients and their assumed rationality ,unaffected by any other issues,at the end of their lives.Yes,it is very true that doctors need to respect the autonomy of our patients but not in the void.
There are other principles that underpin our every interaction with patients which equally must be considered because if we behave according to only one of these principles it is highly probable that we will be acting unethically in interactions with patients.
Beneficence-what possible legislative safeguards could there possibly be that ensured each patient had received the best of palliative care,was certainly not depressed,etc.,etc.?The different worrying scenarios are too numerous to possibly mention.
Non-maleficence-How could it ever be certain that killing that patient at that particular time in their life was not harmful to them? They certainly could not complain afterwards.
Justice-It is highly likely,if not certain,that euthanasia legislation would impact on our community in many ways.The medical profession and the trust our patients place in it would change dramatically.The value of life would be diminished in our community and by our doctors and it would be much easier to excuse the early intervention to euthanise.(Doctors in The Netherlands have euthanised a depressed young man recently).
Euthanasia legislation would be a path to truly intolerable pain in our community.
As a Catholic, I am repeatedly puzzled by why seemingly non-religious people raise the question of religion in matters such as this. Of course Catholic hospitals have their own ethical framework just as Dr Syme has his. Their ethics happen to be different but Catholic hospitals are always happy to discuss such issues in perfectly secular terms.
Anyone who suicides presumably finds life intolerable, at least at that point in their life. So it seems that Dr Syme is advocating legalization of suicide. That could have life and death repercussions for a lot of people, especially mood-labile teenagers.
As for ‘titrated medication’, if the patient is relieved of pain, then the titration has reached its end point and the medication is reduced or stopped. That’s palliation. Dr Syme confuses this with euthanasia in which the intention is that the patient will die. In that case, if the patient does not die, the dose of medication is increased until the end point is reached, namely death.
The problem with medical euthanasia is in its implementation. Are we to have specialist euthanatologists, or is every GP to be trained, the way we were all trained to do normal vaginal deliveries, where each medical student at Sydney Uni was required to deliver 4 babies? Nancy Crick suicided believing herself to be a cancer sufferer, when she was in fact a cancer survivor. Perhaps a team of nutritionists and gastroenterologists could have restored her to good health, rather than the euthanasia advocates who equipped her for suicide. The euthanatology specialist has only one string to his bow.
What would be the CME/ Medical indemnity/ registration requirement for a GP practising euthanasia – minimum of x per year, or a percentage kill/palliation ratio for all cancer patients? How would we validate whether an individual doctor’s counselling process was adequate? How would we ascertain if a doctor was executing ‘difficult’ patients? Would Medicare simply investigate the top 5% of billers, as they do for other item numbers? Would Dr Shipman go unnoticed, if he had forged consent forms on file for every euthanasia patient?
Would governments, desperate for budget savings, implement a cheapest generic treatment policy, as they have for drugs and prostheses? What is the cheapest treatment for a pensioner with an incurable cancer/ AIDS/ arthritis/ schizophrenia/ general debility like Nancy Crick? A rational treasurer might just add a little phrase to Dr Syme’s: “I can find no logical reason why a person, dying with unrelievable suffering, loss of meaning and control, should, by law, be funded by the taxpayer to go to the very end of the line”?
Dr Syme strives for the sympathy vote by using the emotive word ‘intolerable’. Unrelieved suffering is a sign of inadequate palliative care, and physical pain can always be relieved, if needs be by terminal sedation. The AMA, BMA and WMA all remain opposed to deliberate lethal doses for the good reason that the availability of this option would endanger the lives of our disabled and weak and vulnerable patients.
The recent activities of ex-Dr Philip Nitschke should serve to highlight the danger that if we create a window in our law of homicide to allow lethal doses, zealots like him who believe in the right to choose will proceed to bypass all the alleged safeguards to provide lethal doses on request to anyone, including the troubled teenager.
Becoming providers of death will also change the image of our profession in a very fundamental way. May we have the continuing wisdom to avoid this dangerous path.