It’s my life and I’ll end it when I want to

Both of my parents died slow, horrible deaths. I won’t forget what those two strong, vibrant individuals became in old age and sickness: their fragility, their mental confusion, their physical agony and, above all, their unmitigated emotional distress. There are few things worse than seeing a frail old man or woman screaming and crying in pain and longing for death.

I recall one day near the end when my father, who had cancer, asked me for his morphine tablets. I knew what he wanted to do with them and if I’d had them I would have given them to him so he could have peace at last. But my mother had hidden them and was administering them strictly according to the doctor’s instructions.

Fourteen years after he died, I gave up my job to care for my mother for the last 18 months of her life and entered what was a living hell for both of us. Three years after her death, I barely remember the proper mother I had known and loved but the bed-ridden, irrational, incontinent tyrant she became visits me frequently in my dreams turning them into nightmares.

I don’t want to go through the drawn-out, agonising and undignified process of dying that each of my parents went through. I don’t want to put anyone through what I and a couple of others went through in caring for my mother. As it’s my life, I should be free to decide when I’m done with it, right?

Right according to the majority of the British public but wrong according to an alliance of individuals and organisations, some religious, some not.

Sanctimonious thoughts

Earlier this year, broadcaster Muriel Gray took the opportunity to demonstrate how a secular Thought For the Day can be every bit as platitudinous as the religious equivalent.

Life is a most precious phenomenon and should be preserved whenever possible. I don’t wish to live in a society pressuring me to take my own life should I begin to suffer. I want to be able to cry out ‘I want to die!’, but not mean it. I don’t wish to be regarded as selfish, a burden on my relatives should I fall into their care, neither do I wish to deprive my family of the opportunity to care for me, an honour I’ve cherished when nursing people I’ve loved and lost. When in pain or distress I will crave comfort and love, not execution.

Obviously, as an argument this has more holes than a Swiss Cheese but, to be fair, Muriel wasn’t really trying to make an argument. She was simply using an opportunity handed to her on a plate to speak uninterrupted and unchallenged about what she wants or, rather, what she thinks she would want if she were dying a slow painful death. The arguments in favour of a change of law, the sufferings of the likes of Diane Petty, Nigel Pratten, Sue Lawson or countless others could be safely ignored. And they were.

Similarly, Melanie Phillips, in a typically neurotic response to comments by philosopher Baroness Mary Warnock (comments that Phillips unashamedly misrepresents), writes sanctimoniously of  “the deep satisfaction from bringing comfort to those who are helpless or who are so poignantly leaving us.”

I’d hazard a guess that neither Muriel Gray nor Melanie Phillips have experienced putting their lives on hold and trying every single thing they can think of to “bring comfort” to a dying relative, only to find that nothing works and that one’s failure to provide the impossible serves only to aggravate the patient’s distress who then takes it out on the carer.  Phillips says, helpfully:

Sufferers and relatives should be helped through the provision of better treatments and improvements in care.

Oh, fuck off! My mother could have afforded the best care in the world but she refused it. If I end up like her or my Dad, you can be sure that I won’t refuse it but that doesn’t mean I won’t find life unbearable and want to end it. Maybe I will, maybe I won’t but the choice should be mine.

British Medical Association

I’m not concerned here about religious objections to voluntary euthanasia but Muriel Gray’s suggestion that society would pressure her to end her life is one that resonates with those who don’t necessarily share these religious objections.

The British Medical Association (BMA) has a clear policy opposing euthanasia, arguing in a discussion paper on its website that,

killing is intrinsically wrong, alien to the ethos of medicine and potentially diminishes societies that permit it as a solution for social problems

Let’s not mince words. If killing were to be used as a solution for social problems, society wouldn’t just be diminished, it would be barbaric. As nobody is proposing that killing be used as a solution for social problems, this argument can be disregarded. If, however, it is suggested that society might be diminished simply by allowing terminally ill people the choice to end their lives at a time of their choosing, this raises the question of what ‘diminishes’ actually means. I understand it to mean becoming less civilized and less humane. But however it is understood, I’d like to know if the BMA considers Switzerland, the Netherlands and the state of Oregan to be diminished societies? If so, how? From where I’m sitting, societies in those countries that permit voluntary euthanasia seem more humane. They are therefore enhanced, rather than diminished.

The essence of the BMA’s case against euthanasia is the same as Muriel Gray’s: if people who want to end their lives are given the right to do so, there will inevitably be pressure on many more people to end their lives even if they don’t want to and some of these people will give in to that pressure. This argument needs to be taken seriously because it is standing in the way of what should, in my view, be a fundamental human right to self-determination.

According to the BMA, there are three potential sources of pressure:

The first is “within the NHS where resources are limited”. Is the suggestion here that pressure will come from NHS staff themselves who, mindful of the limited resources at their disposal and under pressure from NHS managers, will be employing their best bedside manner to assure patients that topping themselves would be a very honourable and unselfish thing to do? Because, if not, then where exactly is this pressure going to come from?

The second source is “within society where the inarticulate tend to be marginalised”. This sounds important but I don’t know what it means. The inarticulate may be marginalised but what has this got to do with voluntary euthanasia? Provided rigid legal safeguards are in place, if people do not express a wish to end their lives, then their lives will not be ended.

The third source is “emotional, psychological and financial tensions in personal relationships”. No problem understanding — or agreeing with — this one. However, to me this again flags up the importance of having rigorous legal safeguards. It doesn’t tell me that people should be denied that freedom of choice because of the possibility of some hypothetical familial pressure in a situation that we haven’t even tested yet.

One more argument, if I can call it that, from the BMA:

Once established as an option, the BMA also considers that it would be difficult to restrict euthanasia to those who ask for it.

Really? Why?

The BMA paper is full of unsupported opinion and, given the weight that the BMA inevitably carries in this debate, this paucity of presentation is disappointing…or gratifying, depending on one’s perspective.

One more quote from the paper before I leave it alone:

Doctors have a duty to avoid harming people.

Personal experience leads me to conclude that this ‘harm’ that doctors have a duty to avoid needs clearer definition. The advice doctors gave to my frail 83 year old mother to have an operation was definitely harmful and probably shortened her life. As a result, my mother’s life was stripped of any quality and the rest of her days were spent in pain and misery. She was anorexic and gradually became so weak she couldn’t turn over in bed, never mind get up from it.  She eventually died of septicemia from her bedsores.

I believe that if she had been properly and carefully assessed prior to the operation, the possibility that it might turn out that way would have been foreseen and explained to her, in which case I think she would have refused the operation and just focussed on enjoying whatever time she had left. But – hey! – without the operation, she might have died the next day of a heart attack, so presumably the doctor who talked her into it has a clear conscience that he avoided harm.

I realise that’s a personal anecdote that brings nothing to the table but neither do vague, unqualified statements about what doctors duties are, so excuse me for taking them with a pinch of salt.

Dissident doctor

Happily, not all doctors agree with the BMA’s policy. On BBC TV’s The One Show yesterday, GP Dr Sarah Jarvis rhapsodised about the British system of palliative care, asserting that we are world leaders in it and the envy of everyone else. But she opined that for a very few people even the best possible care, be it physical or spiritual, would never be enough. She mentioned that in the four years that physician-assisted suicide has been available to the three million-strong population of Oregan, fewer than a hundred people have availed themselves of the facility. The figure for the Netherlands is much higher and I suspect that religious faith, or lack of same, has a bearing on these figures. In any event, “an important part of our job is to help people to die well,” says Dr Jarvis.

Jarvis appeared on the programme with John Humphrys to promote their new book on this very subject. Humphrys suggested that, because UK citizens can travel to Switzerland to die at the Dignitas premises and because no relatives of the 100 or so known Britons who have died at Dignitas have been prosecuted so far, there is a feeling that the system sort of works and there’s no need to change our laws.

I’m not sure if anyone really does feel this way but, as Humphrys pointed out, the ‘system’ such as it is at present restricts the freedom of choice to those who can afford it, leaving those who can’t to endure unimaginable suffering. Dr Anne Turner was comfortably off and could probably afford the best palliative care money could buy. She had adult children who loved her and tried to dissuade her. But she knew exactly what she was in for if she chose life, so she chose death.

Disability rights

Can the same be said of 23-year-old Daniel James, the youngest British ‘suicide tourist’? Daniel became paralysed from the chest down after a rugby accident and reportedly made three suicide attempts before travelling to Switzerland for a physician-assisted suicide in September 2008 — a mere 18 months after his accident. Daniel didn’t have a terminal illness though we are told that “he had no hand function, but constant pain in all of his fingers. He was incontinent, suffered uncontrollable spasms in his legs and upper body and needed 24-hour care.”

He evidently believed that he would never adapt to a life so different from the one he’d been leading. Dr Peter Saunders of the Care Not Killing Alliance, which campaigns against assisted suicide said,

It is most unfortunate that he fell into the hands of Dignitas when he did. He was still very much in the acute stage of loss and he was also almost certainly profoundly depressed. It is a terrible tragedy.

I’m inclined to agree and I don’t mean to imply any criticism of his parents with whom, as the mother of two fit, active children of a similar age, I empathise strongly. A tragedy it certainly was but I don’t think I would have done any differently. I don’t know what steps were taken to try to help Daniel face his predicament and whether these were exhaustive and I do realise that there are massively complex ethical issues raised here. There are countless examples of people who have suffered catastrophic injuries as Daniel did but who have nevertheless valued their lives enough to keep going. There are also many who have chosen to do the same as Daniel and to give up on life. I wouldn’t care to speculate on why some choose life and some choose death but it is clearly an important topic for research and social care policy. It goes without saying that we should be aiming to be world leaders not only in palliative care but in supporting people in coming to terms with disability and helping them to live independently and well. But for some, it will never be enough. I know that because they are saying so themselves and I don’t pretend to know better than they do.

Aware that the Disability Rights Movement is associated with opposition to voluntary euthanasia, I looked on the web for views from people involved in the movement. Daniel James said he didn’t want to live a “second-hand existence”, a remark that typifies the kind of attitudes that disability rights activists are struggling against and which partly inform their opposition to voluntary euthanasia. Here are a few quotes:

Over the past decade or so attacks on disabled peoples equal right to life has increased through the rise of the assisted dying and eugenics movement. This is because non disabled people see their lives are more valuable than those who are disabled.

says the British Council of Disabled People

It seems obvious to both of us that the devaluation of people with disabilities is at the center of the rhetoric and logic used by proponents of  “death with dignity,”

said an American blogger from the Not Dead Yet Campaign

We believe:

it is NOT about self-determination;

it is NOT about physical pain;

it is NOT about the cancer patient.

We believe it is about fear. It is about prejudice. It is about negative perception of a characteristic,

said a Canadian scientist and advisor to the Council of Canadians with Disabilities.

Put like that it sounds quite unhinged but there is a serious question here of whether allowing people like Daniel James the right to a physician-assisted suicide does devalue people with disabilities and what the implications of this might be. An equally serious question is about the implications of denying people with disabilities a physician-assisted suicide if such were to be permitted for able-bodied people.

Like Daniel James, Andrew Batavia became quadriplegic after an accident 18 years ago when he was 16. Now a researcher and attorney who studies health care and disability policy, he has this to say,

My most important objective has been to gain the fullest possible control over my life. This goal is not very different from that of many nondisabled people, but it is somewhat more difficult to achieve for people with no voluntary use of their arms, hands, and legs. Through advanced education and professional endeavors, I have been able to obtain substantial control of my life and, consequently, substantial satisfaction and happiness.

Unfortunately, many disabled people have not had these opportunities, and some live unhappy lives in which they have (or at least believe they have) little or no control…The ability to choose whether to commit suicide-to implement the decision to continue or discontinue life-constitutes the ultimate manifestation of control over one’s life. People who believe they have no control over the fundamental decision to live cannot claim to have autonomy over their lives.

In reality, the prohibition against voluntary euthanasia in our society is based primarily on social paternalism. People with terminal illnesses or severe disabilities are considered by society incapable of making a rational decision to die. Yet, in truth, most disabled people are at least as capable as nondisabled people of making such decisions and, in the interest of self-determination, should be allowed to do so. As a person with a disability, I resent the prospect of physicians, judges, or public officials making decisions about me that are inherently personal and that fundamentally affect my life.

Source: A Disability Rights-Independent Living Perspective on Euthanasia

This is the argument I find most compelling at the moment and it’s one I don’t see the disability rights movement addressing. Flatly denying that it’s about self-determination and insisting that it’s about prejudice against people with disabilities doesn’t get us any further towards a humane solution and makes those promulgating this line sound paranoid and incapable of empathising with the sufferings of others who don’t happen to like their lives as much as they do.

Indeed, that’s pretty much the impression I get of the whole anti-voluntary euthanasia alliance.  I find the lack of human empathy and the determination to deny others a choice that they think they would never choose themselves disturbing but I am reassured by the warmth and understanding shown by the majority of the British people to those who are in this terrible predicament and to their families.

Right to die

I urge those good people to visit the excellent websites of Dignity in Dying and Friends at the End for more information and the chance to get involved in this humane and worthwhile campaign.

I’ll let Dr Adams, a Parkinson’s Disease sufferer now in his eighties, have the last word.

I do not wish to impose my views on others, but am most unhappy about others imposing their religion on me.  Many in my position fear the nursing home more than they fear death, and opinion polls suggest that 80% of Britons favour legalising assisted dying for the terminally ill.  The time has come to pass appropriate legislation.

23.7.09 Edited to add a link to this informative blog I found:

Assisted-Suicide Blog

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