Sunday 17 January 2016

CHOOSING TO DIE/ CHOOSING TO LIVE

I have just read two articles about euthanasia, specifically , of elderly people self-euthanising, that left me immeasurably sad. Nikki Gemmel tells of her mother, crippled by chronic pain after foot surgery 10 months earlier, who chose to end her life alone; and the other of a suicide pact of two scientists, Pat and Peter Shaw, both 87. In both cases, the fear was of dependence on others, having to be cared for in nursing homes, or being 'in the hands of medicos', losing all autonomy. In the case of the Shaws, Peter was concerned that his mind was not as sharp, while Pat was increasingly frail and had recovered from a broken femur not long before. They had 3 daughters who knew of their plans, which they had discussed for many years, and could do nothing about it, nor did they feel that they should. Their parents had always been rational, intelligent and independent people who had lived a full life, travelled extensively, climbed mountains, skied, hiked, had rich lives appreciating music, theatre, wine etc, and had been generally fit and active. One daughter when interviewed said that she would have wanted the parents of 10 years earlier to stay around; but the parents at the end, no; it would have been too hard for them and too hard for her as well, she admits.
Legally, no other person can be involved in these cases of voluntary self-euthanasia, or suicide, as that make them accessories and thus liable to prosecution. So although the Shaw daughters knew of their parents' decision and when they planned it, they were not culpable in any way; but the police and paramedics still descended on the couple's home and there had to be an investigation. This disturbed what had been a peaceful decision to 'go to sleep and not wake up'. Nikki Gemmel feels that 'If the family cannot by law be involved in the wishes of a person wanting to be euthanised, then you are condemning that person to a monstrously bleak and lonely death. One that I, as the daughter, will never recover from.'
These cases are not identical, and I would say that no two are. One was of a woman racked with pain, addicted to painkillers, doctor shopping for them in fact, whose life had been destroyed essentially by a bad medical decision for which the doctor involved has not been questioned, nor does it seem that there has there been any legal measure taken for compensation or any accusation of negligence, according to the article Ms Gemmel published.
The other, a suicide pact between two rational people who were suffering in their own ways and who decided that life did not offer them enough in order to make them want to live.
In neither case were the people demented, nor did they think they were depressed. In both cases, the people were not religious and did not talk of an afterlife etc. It was about fear of dependence, loss of autonomy, and release from physical pain or frailty.

So why am I so saddened by this? Why am I not hailing Dr Philip Nitschke as the saviour of Mankind? There is a part of me that thinks it is a good thing to be able to legally end one's suffering, and I won't argue against it. My religious beliefs do not allow me to commend it, because it is against the basic tenet of Life being sacrosanct and suicide being a sin, because life is a gift from G-d and it is not for us to make these decisions; but the doctor part of me knows that there is such a thing as unbearable suffering and untreatable pain. The big problem is who gets to decide, and how. A doctor and a psychiatrist? A panel of medicos and ethicists? The patient ? The family? Everyone? Surely it would have to be disinterested experts, for there are many situations where children don't want to keep frail parents alive; they would rather push things along a bit to end their own misery or to get an inheritance. A friend of mine is involved in a case where an adult son, who lives interstate and hasn't visited his elderly mother for 4 years, had his mother evicted from her home where she had been living comfortably with carers (but that was getting expensive), placed in a nursing home, and then attempted to expedite the sale of the home, clearly for his own gain; this sale has been blocked by my friend who is the only person advocating on behalf of this elderly woman, who has been a lifelong friend but has no blood ties to her. Meanwhile, in the nursing home, the previously ambulant woman has been confined to a wheelchair, has developed, terrible eczema,  bedsores- an indication of poor nursing if ever there was- and has slipped into early dementia. The court case is pending, but it is pretty clear that the clock is ticking and it will probably be too late for her no matter what the decision. So I don't think it's a good idea to have family involved in decisions regarding euthanasia, even on the basis of this one case.

So who should decide?  When is a rational, non-depressed person who fears dying without dignity and loss of autonomy, really able to make a sole decision, or a suicide pact? Maybe the pact was the idea of the dominant person in the relationship? Poor pain control, emotional despair, loneliness - no, these things are not 'depression', but quality of life issues; maybe these can be improved.
There is a 'slippery slope' here, and I'm not the first person to say that. But I don't argue that life can become unbearable and people can become fixed on the idea of 'the final exit', the 'big sleep' as the answer to their suffering.

But I have recently lost my father-in-law who passed away on his 93rd birthday after a difficult couple of years of declining health, especially in the last 2 months. His physical dependence was great and his quality of life had plummeted. Yet still, he never ever talked of ending it all. He relished every minute of life, every minute spent with his family; his wife, his children, grandchildren and great grandchildren. Especially his grandchildren, for whom, with his very last breaths, he had advice and expressions of love and support.
He refused to have carers and his wife took on the burden of his care, despite her own health issues. After 63 years of marriage, she wasn't going to allow him to be humiliated by his frailty and loss of physical autonomy, to be handled by strangers.
She made sure he took his meds, she drove him to his appointments with his doctors, was in constant communication with them. When one of his doctors became ill himself, she took him chicken soup and inquired after his health; the doctor later said that it was the only time ever that such a thing had happened. You might call it blurring boundaries, but it was sincere on her part, and it fostered perhaps a more caring relationship that could only benefit my father-in-law; although his own charm was enough to elicit caring from his doctors and nurses, with the increasing frequency of medical events and hospital admissions.

We talk of dying with dignity and think that this can't be done in hospitals 'in the hands of medicos', which had been a great fear expressed by Pat Shaw. Yet my father-in-law passed away peacefully and comfortably in hospital, surrounded by loving family who were all there to witness his last breath. The 'machines that go beep' were all disconnected at this stage and the staff were solicitous and respectful of the family and looked in on them without disturbing the active dying that was taking place.
It was not easy for us, as observers, but the 'medicos' soothed us and explained every step, and we all remained calm; it was a 'good death', and that is a good thing.

So why so different?  I think that my father-in-law, a Holocaust survivor and a religious Jew, who had been through the depths of Hell 70 years earlier, losing all his family but one brother, had a profound respect for and love of Life. He might have been angry at G-d but he also loved G-d and his religion and sought every other way possible to prolong his life; he felt he had so much more to do, and was tying up loose ends and getting his affairs into order for quite a while before. He left written instructions on how he wanted his funeral to be run, and they were followed to the letter; I and many others thought it was the best funeral service we had ever seen. Here was a man who wanted to be in charge! But he never wanted to hasten the inevitable end. He had something to live for. He had meaning in his life. Despite his pain and frailty and the indignities that they entailed, he loved and was loved.
I think of the Shaws, with their wine appreciation and culture and daughters, and wonder; why was this not enough? I can't imagine that there were grandchildren, at least, they are not mentioned. Wouldn't grandchildren have given more meaning to their lives? Wouldn't they want to be around to see them grow (I almost said, to dance at their bar mitzvahs, but whatever the equivalent, to see them graduate school and university and marry)?

We learn that the patriarch Jacob was the one who prayed that death should come slowly; we see for the first time a deathbed scene in the Bible, where he has time to bless his children and grandchildren. What we think of as an awful, protracted dying, can at least at some stage actually be a part of healing for the children, as they farewell the dying one and they witness his passage from life. Those who have lost a parent through trauma, or sudden death, have a harder time adjusting, as a rule.

So why would someone choose life, and others choose death? It isn't just about pain or loss of independence, and it isn't just about being lonely or being loved. It even isn't just about belief in G-d, for there are even those who, despite belief in G-d, cannot overcome their suffering and plead for death. It's certainly not about having had a wonderful easy life, for we all know stories of people who seemingly had everything, charmed lives, yet chose suicide. But my Holocaust survivor father-in-law loved and savoured every moment of life, despite, or perhaps because of what he had suffered.

It is about a belief in Life, and its worth.

I confess that a part of me is conflicted. Morally, I am against euthanasia; but I have seen situations where I could only envy veterinarians who can euthanise beloved pets who are just suffering too much (yet plenty of pet owners decline this service even for their animals, and prefer to take expensive and extreme measures to keep pets alive). And if there can be a case made for euthanasia, then, shouldn't it be legalised so that family can be involved and not blocked out of the process, condemning the patient to a bleak and lonely death?

I don't know the answer. I hope that I can have the courage to choose Life if the choice is given to me.

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