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MEDICAL practitioners form their opinions based on their clinical teaching, their clinical experience and their knowledge (hopefully) of peer-reviewed literature.
Medical students get no teaching on voluntary assisted dying, and precious little on palliative care; that is to say, about the care of dying and intolerably suffering patients. I doubt they are introduced to the concept of medical suffering.
In practice they confront dying patients with little, if any training, with no idea how to engage in the difficult conversations about end of life, and an inherent fear of the vague and opaque law that controls their actions. They are able to learn more about palliative care if they are interested, but many are probably only too happy to handball such patients to organised palliative care.
I doubt many have the time or the interest to become informed about the voluminous palliative care literature, or the numerous, careful empirical studies of voluntary assisted dying from the Netherlands, Belgium or Oregon.
It is my view that doctors in Australia are poorly informed about voluntary assisted dying, and to a lesser extent, palliative care, and about how to deal with requests for a hastened death.
Professor Stephen Leeder, in an MJA InSight opinion piece titled Dying well, opined that Australia was the second best country in the world in which to die. It was not made clear that this conclusion was based on an assessment by palliative care specialists of their own efforts. It did not describe the results of Australian palliative care as shown in the Palliative Care Outcomes Collaboration – this study revealed that of people in the terminal phase of their dying, 4% had severe pain, 7.5% had other severe physical symptoms (breathlessness, fatigue, nausea) and 3% had severe psychological distress.
Although you will never hear it publicly stated by the palliative care sector, it does provide, when it deems the patient’s symptoms sufficiently refractory, terminal sedation, or “deep continuous sedation” (the European phrase); it prefers the more benign term “palliative sedation”. This involves the gradual, titrated increase, by continuous infusion, of sedatives and analgesics, usually without the provision of food and fluids, until the patient enters a coma and remains so until death occurs.
That such treatment may be necessary at the end of life highlights the fact that some suffering is intolerable and unrelievable, and that some such suffering will only end with death. It is also an indication that doctors have a duty to relieve suffering, and that a necessity to hasten death does occur.
- Related: MJA InSight — Rodney Syme: Dying autonomy
- Related: MJA InSight — Stephen Leeder: Dying well
The incidence of terminal sedation in Australia is unknown, but in Belgium and the Netherlands, where the manner of dying is carefully analysed, it is 12.0% (2013) and 12.3% (2010) respectively among medically certified deaths.
The fundamental differences between palliative sedation and voluntary assisted dying are clear and stark. The decision for terminal sedation and its rate of implementation are controlled by the doctor, and the journey to death is slow and with incremental relief of suffering. Voluntary assisted dying places complete control in the hands of the suffering person (they may decide not to use it). When it occurs using a quick-acting oral barbiturate, gentle sleep occurs in about 3 minutes and a peaceful and dignified death occurs in 10 to 20 minutes; the family can say goodbye and share in a profound moment. Terminal sedation provides a highly doctor-centred death, which is completely medicalised, in contrast to the person- and family-centred voluntary assisted death.
In February 2015, the Supreme Court of Canada determined unanimously that the prohibition of assistance in suicide to persons suffering intolerably was contrary to Canada’s Bill of Rights, and directed the government to legislate to provide that human right. It did so after an exhaustive analysis of practice in other countries, which convinced them that safe practice could occur with appropriate legislation. Numerous parliamentary, provincial, ethical and medical bodies reported on the matter; these have all found that the principles embodied in Dutch and Belgian legislation and practice were safe and appropriate.
The Canadian Medical Association determined that end of life decisions were a matter of conscience between a doctor and his or her patient, and have also developed medical guidelines for safe and ethical practice which are almost identical with Belgian and Dutch practice.
The Australian Medical Association’s ethics committee is reviewing its policy on end of life.
The Royal Australia College of General Practitioners and the Royal Australian and New Zealand College of Psychiatrists have adopted neutral positions in the matter. It is to be hoped, at least out of respect for the autonomy of our patients, that the Australian Medical Association, one of the principal stumbling blocks to change, will see the light and move into the 21st century.
Dr Rodney Syme is a Melbourne urologist who is vice-president of Dying With Dignity Victoria.
As a Palliative Care Social Worker of 14 years I wholeheartedly agree with Michael Barbato’s comments. I have worked in community; hospice and an inpatient Pallliative Care unit. I strongly dispute dr Symes claim that “Terminal sedation provides a highly doctor-centred death, which is completely medicalised, in contrast to the person- and family-centred voluntary assisted death” . In 100% of the patients in whom I have observed when Terminal / palliative sedation has been neccessary, the patients or their Substitute Decision maker, have been fully informed and consulted as to when and if terminal sedatrtion became neccessary this was an option which they wisehd to employ. hence family had tiime to be present, ofetn travellig from distance to be there; the patienet themselves having been informed of the impact of this option have been enabled to say their goodbyes.
I was highly uncomfortable with Dr Symes recent representation on ABC of assisted dying and mis-representation of Palliative Care, it seemed to me that he is replacing the assessment of a whole multi-disciplinary team of specialist Palliative Care professionals with a decision by himself to assist or not to assist.
I agree that an intelligent and nuanced discussion of ‘assisted dying ” is long overdue,, but such a discussion is not furthered by misinformation.
In the unlikely event of someone with porphyria dying a slow death, it is to be hoped that any guideline will include the SAFE/UNSAFE drug lists and consultation with the family to determine NOT to use barbiturates or a final attack of porphyria involving the very symptoms found so unsavoury by onlookers and practioners would be induced or there could be a Paula Allende scenario and coma of long standing.
The primary intention of euthanasia is to actually relieve unbearable and hopeless suffering. The serious play around intention denies the most important person in this process – the patient who at present has the least say in management of their own suffering. How can we, in all compassion and common sense, insist that terminal sedation and starving and dehydrating a patient until death occurs is fine but voluntary euthanasia is not?
Words are important. Dr Symes notes that the palliative care sector provides ‘the gradual titrated increase … of sedatives and analgesics … until death occurs. That such treatment may be necessary … is also an indication that doctors have a duty to relieve suffering, and that a necessity to hasten death does occur.’
This wording may obscure an obvious difference between euthanasia and good palliative care. In euthanasia, if sedatives and analgesics are given and the patient does not die, then the dose is increased until death occurs. In good palliative care, if pain is relieved then no further increase in dose occurs. Obviously, in some such cases, death may also occur. However, the primary intention is relief of pain, not death.
Its illegal to let animals suffer like that. Imagine if we had palliative care for horses injured in a race, or dogs vomiting with end stage renal failure. Why do we treat our fellow human beings so badly? Research from the countries which have already instituted volunatry euthanasia show that it is not abused by people wanting to get rid of other people as the requirements are so strict. Lets just get our great legal and medical minds to draft legislation with the right safeguards and just get on with it.
Suffering around the time of death is often psycho-spiritual and related to the death of self. Significant physical distress does occur amongst those who are dying, but in most cases it’s amenable to standard palliative care measures. When it is not, other options are available including palliative sedation.
Dr Syme paints a dark picture of palliative sedation that is misleading. The decision for palliative sedation is not made by the treating physician, but is one of a number of options given to the patient and family to consider. It is they, not the doctor, who make the final decision.
Patients who choose palliative sedation are nearing the end of life. Food for them is an anathema rather than a necessity. Similarly, parenteral fluids achieve no benefit and more often than not introduce complications that a dying person can do without. Dry mouth may be significant, but the only effective treatment is to moisten the mouth and tongue – something nurses and family do on a regular basis.
Palliative sedation, can if necessary render a patient pain free and sedated within the 3-minute time frame that Dr Syme equates with voluntary assisted dying. The required level of sedation is easier to attain and titrate than with barbiturates and presents the same opportunities for family to say good-bye. If requested, palliative sedation can be administered at home.
By all means let’s engage in frank and honest discussion and avoid misleading information only to further our cause.
I watched my brother with lung cancer suffer a wretched death from vomiting despite the best palliative care!, a neurologist father and myself an anaesthetist. I urge the AMA to align itself with Dr Symes philosophy and allow patients to die with dignity.
Could we have an update on California, where it was reported that physician-assisted suicide was legalised a few months ago ?