As a physician working in hospice, I focused on maximising all the differences good palliative care can and does make to patients, their families and friends. In most cases it was possible to manage a way of dying acceptable to each one.
This involved taking time to listen, to work out what and who were important, to make accurate diagnoses, to deal with pain, nausea, vomiting, anxiety, grief, fear, suffering and complex family dynamics and to make a safe space for addressing whatever needs were still left unmet.
Rarely, sedation was the only way to manage the situation; this is seen, in this context, as symptom control rather than euthanasia.
Now, working outside hospice, I recognise that there are still people who die ‘bad deaths’. The differences between a ‘good death’ and a ‘bad one’ are many. In some cases the suffering is so dreadful, that the individual and or family members are desperate and courageous enough to intervene to end the suffering, adding the fear of a court case.
Consider the big, young, previously fit farmer, dying of motor neurone disease, who tried to kill himself on his mobility scooter. He failed, and added fractured ribs to his problems. Later, immobile, unable to speak or swallow, he was persuaded to accept a PEG, (a feeding tube, directly into his stomach) which neither he nor his wife wanted, but which they felt unable to refuse. This prolonged his suffering for weeks. His widow feels voluntary euthanasia would have been a much better choice.
Consider the man with prostate cancer, who had been in severe pain for months, with painful tumours in many of his bones; who struggled into hospice one day, pleading with us to kill him. We fixed his pain. He changed his mind. We continued to manage his pain and other problems until he died.
The process and objectives in palliative care and voluntary euthanasia are the same, to mitigate suffering, to make the most of each precious life, retain dignity, demonstrate compassion and honour patient autonomy. Advances in medical care mean that many more interventions are possible. Sometimes these are wonderful, life-saving or life preserving. Sometimes, they merely get in the way of someone’s dying and prolong suffering. Sometimes, the owner of the life absolutely wishes to end it. The challenge is to make the best decisions for each of us.
Of course we have concerns about ensuring that any change in current legislation is clear enough to prevent abuse and broad enough to cover the harrowing situations that currently have no legal solution. Wide public debate is necessary. Thirty years ago we were engaged in very similar discussions as we worked to establish hospice/palliative care in NZ.
It is important to note that in societies where aid-in-dying is legal – The Netherlands, Belgium, Switzerland, Luxembourg and the American states of Oregon, Montana and Washington – this change has resulted in improved hospice/palliative care services, and has not resulted in either abuse of the vulnerable, manipulation of the law or an avalanche of cases.
Prof Sam Ahmedzai, Professor of Palliative Medicine, University of Sheffield Medical School talks eloquently, in a letter to the editor of the BMJ (British Medical Journal) about his experience in Oregon. He has radically shifted his position on aid-in-dying, and supports the move to encourage doctors’ professional organisations to take a neutral stance on assisted dying.
“It is patronising to say that a few people should suffer unbearable distress and indignity because palliative care preaches that it values all lives – regardless of how meaningless they have become to their owners. It is inconsistent for Palliative Care to boast how it enables people to face the reality of dying and decide the place of care but then deny choice for timing of death. Moreover it is hypocritical to deny competent patients who are acknowledged to be dying, the right to die in the manner of their choosing, while allowing doctors and nurses to choose when to put them on a so called care pathway, which often entails increasing sedation and withdrawing fluids – unintentionally leading to a protracted form of assisted dying, but one that is medically determined”.
Dr. David Leaf, a lecturer at the University of New South Wales, also in a letter to the editor of the BMJ, reports his research, his conclusion is that “Safe laws are working worldwide”. He also says that “opponents of voluntary euthanasia often muddy the waters with words and concepts that evoke really bad connotations. They are wilful misrepresentations of the facts.”
Dr Phillipa Malpas, University of Auckland, and Helen Yensen, have written a series of carefully researched and well-reasoned articles, which have been published in GreyPower magazine. Their conclusions are the same.
They also point out that: “PAD (physician-assisted dying) is available in NZ, despite the fact that it is illegal. Where PAD remains illegal, there are no safeguards or controls, no accountability, no monitoring or supervision, and no specialised training or su
pport for physicians who assist a patient to die, which may lead to bungled attempts to end a life. The status quo is unsafe, unfair and risky. Keeping PAD illegal will not protect patients from abuse.”
Recent research conducted in NZ (Horizon Research July 2012) explored a wide sample of opinions from patients and families to doctors, nurses and MPs, and confirmed majority support for legislative change. It was found that 16.2% of adults or about 519,740 people currently know someone whose medical or mental condition is making their life unbearable.
The research indicates that five times more adults support than oppose entitling people aged 18+ to apply for medical assistance to end their lives in certain circumstances.
“The purpose of MP Maryan Street’s End of Life Choice Bill is to allow all New Zealand citizens or permanent residents aged 18 years or over to obtain medical assistance to end their life in certain specified circumstances. The request may be made in person or by means of a registered end of life directive.”
This issue is one that will not go away while the suffering continues and people and/or their friends and families are driven to the desperate measures that frequently make headlines.
On a personal level, I, like many New Zealanders, prefer to be able to make my own decisions. The way we choose to live and the way we choose to die are intensely personal choices. I remain committed to good palliative/hospice care and end of life choice, and do not believe that the two concepts need be mutually exclusive. In Belgium the two services have been successfully integrated. And, I absolutely do not want to suffer unbearable distress and indignity when I am dying, simply because someone else says I must.