Hazel McHaffie

Assisted life or assisted death, that is the question

Dr Ann McPherson was a committed and energetic GP who made a mark in many spheres of her life. But she felt burdened by her powerlessness to help those of her patients who were terminally ill and suffering beyond their endurance. As a consequence she became an ardent campaigner for a change in the law. When she herself developed pancreatic cancer she knew all too well what lay ahead, but in spite of her own troubles she continued her crusade for as long as her strength allowed. When the disease overwhelmed her, she was forced to endure a horrible death – exactly the kind of end she wanted to spare others from.

Her daughter has courageously shared her story in the BMJ this month, and I found it a most eloquent and persuasive one. She spares few details is recounting the horror. This was indeed the kind of distressing death we would all dread.

Photo courtesy of Photolia

Photo courtesy of Photolia

In the same journal at the beginning of July, an editorial called for doctors to stop opposing assisted dying, and rather adopt a position of ‘studied neutrality’ – not apathy, please note, but neutrality – to accommodate the many different points of view doctors hold. The papers include emotional appeals to society to embrace the old and the disabled instead of thinking of killing them; to value choice as an inherent right; to start properly talking about death …

Ultimately however, this is a matter for parliament not doctors, powerful though they may be, to decide. And indeed Lord Falconer’s Bill designed to open the way to a form of assisted suicide in Britain, had it’s first full parliamentary airing last Friday. The House of Lords was packed; over a hundred members queued up to speak; eloquent appeals were heard without interruption. News items, articles, columns, letters – you’d have to be an ostrich to have missed the subject over the last week or two.

So it’s probably not surprising that lots of people have asked me what I think about the subject. In my novels I work hard to give equal weight to all lines of reasoning and not to betray my own opinion. Right to DieNow, six years after the publication of Right to Die (my own book on this subject), it seems expedient to declare my hand. But first I should say that in spite of my close involvement in this area, I can still be persuaded by the strong arguments on both sides. Emotional firsthand stories still grab me by the throat. I am very far from black and white, I still swither. Indeed, as soon as I’ve posted this, I’m sure I shall read or hear something that will make me wonder all over again. I’d welcome any genuine comment which would point up errors in my thinking. Or indeed any other thoughts on this issue which would contribute to healthy, measured debate.

So, where do I stand? First I should state the problem as I see it: intractable pain and suffering, indignity and distress as features of dying or living with degenerative or totally incapacitating diseases. OK, I know the current Bill is addressing only terminal illness (within 6 months of death – a diagnosis that’s impossible to make with certainty, incidentally), but I want to gather in those who have longer-lasting problems too, who in my opinion, often have a stronger case for seeking a way out of their terrible situation. (I’m not operating under the same constraints as Lord Falconer and his cronies.)

I should hasten to reassure you at this point that I have no intention of rehearsing the arguments or regurgitating the emotive phrases wheeled out by both sides in relation to this current Bill; you’ll be as familiar with them (perhaps even wearied of them?) as I. Rather I want to propose a two stage process.

In the first instance, my appeal to parliamentarians would not be to change the law, but to re-allocate resources. What I’m going to say now may sound utopian, but it’s my view that everyone – absolutely everyone – suffering from a terminal or degenerative illness, should have full access to excellent palliative care of the highest order including, where appropriate, proper psychiatric involvement to eliminate treatable problems like depression or anxiety. At the moment this is very far from the case (even though Britain is recognised as a world leader in this field of medicine). Ask yourself: What kind of a society knowingly condemns some of its most vulnerable citizens to a form of torture, when an alternative is available? It seems to me iniquitous that even established successful hospices are reliant on public financial support to keep going. And that only a tiny fraction of patients who desperately need their services get them.

I would maintain that simply being comfortable and being listened to can change one’s whole perspective on life, no matter how short or long that life might be. So, if pain and distress are capable of amelioration, they should be treated swiftly and effectively. What a different scenario we would have from the outset if that were everyone’s right.

Once this first provision is made, there would be a much smaller number of people for whom life is a prospect worse than death: those for whom palliative care does not offer a solution. And I know only too well that not all pain, not all distressing symptoms, can be relieved: it’s naive to think they can. I would keep these remaining cases well away from media scrutiny (with its attendant risks of vitriol and vilification for those at the heart of these situations). Instead I would propose a system whereby cases could be brought to a kind of Ombuds-committee made up of representatives from the main relevant disciplines who could, with compassion, empathy and experience, in private, help all concerned come to a conclusion which would be the optimal one in these circumstances. And to do so with all speed.

The necessity to go through this process would, it seems to me, go some way towards protecting the vulnerable from vultures and undue pressure to act against their own best interests (one of the biggest worries with the Falconer Bill). And to facilitate this it would be hugely advantageous if Advanced Directives were to become the norm: people spelling out their beliefs and wishes clearly and rationally while they are in complete control mentally.

There would still, of course, need to be careful scrutiny of the legal limits and responsibilities. Doctors should not be required to take risks or actions which are against their consciences or without legal backing. Patients should not be obliged to spend their last days, weeks, months or years battling officialdom. Relatives should not be fearful of dire consequences. Adequate legal provision would have to be made. But in my view it is almost impossible for the blunderbuss that is the law to properly take account of the fine nuances involved in these cases on its own, and to create a catch-all law. Furthermore, at the moment I do not think the Falconer Bill is accurately addressing the real dilemma.

All the Bills drafted to date, all the tragic cases paraded for public scrutiny, all theĀ  discussions linked with them, have forced society to address the issues, to look squarely at the problem. And indeed, surveys show that we as a nation are much more sympathetic to the realities faced by these families than we were a decade ago. Now though, we need a mature and measured response that fully takes account of the things we all dread, and moves us to change our ways. To recognise the importance of good palliative care – not only to value it but to put our money where our mouths are. To respond sympathetically to the urgent needs of those people for whom life even with optimal care is intolerable. For those with fierce intractable scruples to ask: what right have I to impose appalling suffering on others who do not share my personal view or scruples?

Shutterstock image

Shutterstock image

Hmmm. I’m feeling rather vulnerable myself stating my views so forthrightly.

What do YOU think?

 

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4 Responses to “Assisted life or assisted death, that is the question”

  • JP says:

    I am actually mostly weary of the emotional, content devoid nature of too much of the debate, for me epitomised by the disabled peer (cue photos in the media to start the emotional manipulation) telling us why she doesn’t want to die. The fact that the proposed Bill would not apply to her as she is not terminally ill doesn’t matter, because that would spoil the headline or soundbite. This is not a discussion that lends itself in any way to soundbites but the current generation of politicians (which is sadly my generation) seems largely unable to engage in a reasoned debate when cheap shots are available. When it comes to a matter of life and death, I think that is unconscionable.

    I am very clear on my view of how I would want to be treated, recognising that this is starting from not even being slightly ill and that the goalposts will inevitably move when it becomes real (see your book Right to Die for more on that, it remains my favourite of your books). I am not willing to endure excessive, unmanageable pain without prospect of respite. Nor am I willing to leave this earth in a way that I would never wish on any other person (or indeed animal, where we seem to have no insurmountable qualms about putting an animal out of suffering when the animal cannot speak for itself). So in a situation in which I were in that much pain or where I found my life intolerable because of an incurable condition, I would want to be able to end my life in a painless way. Cue religious indignation because that would be suicide. So be it. But of course the problem is when you are unable to do that for yourself. Do we really want to continue to hang the threat of prosecution over my loved ones if they want to help me?

    I really struggle with the almost united front presented by so many religious organisations against the proposals. They seem to leave no room for compassion in their pronouncements where I would have thought they could have made some constructive proposals. When it comes to the Christian faiths, I really have to wonder if they have really thought about how Jesus would have approached this question. He seemed to be rather good at finding a way to do the right thing within the confines of the ridiculous religious rules of his time.

    On the second part of your proposal (the first sounds entirely sensible, I have no idea how to cost it!), I would be concerned about the composition of your ombudsman. I would want to ensure that the people on it don’t have trenchant views for or against. So something like a medical ethics committee that hospitals have? Politicians should legislate themselves out of having any responsibilities or rights to intervene in this field to remove any ability to go vote hunting from personal tragedy.

    • Hazel says:

      Thank you, JP, for your thoughtful response.

      The costing of providing palliative care? Less than the cost of a Trident missile, I’m told! And I know which I’d prefer. There are plenty of expenditures that rank below providing a good quality of life for suffering people. If the will were there, the money could be found.

      The composition of the Ombudsman-Committees is indeed a crucial point. They would need to be very carefully selected to ensure an even-handed but informed and sympathetic contribution would be made. Having worked in the field of medical ethics for decades I am fairly confident we know who would fit that brief for our own discipline. I suspect lawyers, doctors, philosophers, etc would be equally aware, so I don’t think it would be impossible to find appropriate individuals. But there would probably need to be an infrastructure to monitor and audit practice.

      I’m pleased to hear you are ‘not even slightly ill’. Long may it continue. We very much need thoughtful compassionate people like you to fight for those whose lives are intolerable.

  • Miriam godfrey says:

    Thank you for this thought provoking blog. I am a nurse working within palliative care in a specialist unit.

    I have thought about what would happen if there was progression to an assisted death bill. As a Christian I feel comfortable with the present status quo, but is that the best for the patients I look after?

    Most patients can and do have their symptoms controlled through a number of different interventions. However I acknowledge that I do not see all patients and am aware of only the ones that are referred to us or who are discussed whilst on the waiting list, (and not all get a bed).

    As mentioned there are a small number of patients who do not get relief from their distressing symptoms and I have a responsibility for this minority of patients too. I remember clearly two ladies who tried to end their own life whilst in my care. Development of an ombudsman committee perhaps is the answer. Each day on ward rounds the team discuss each patient and their own individual needs and desires. Decisions are made about antibiotics, transfer to acute settings for intense interventions, continuing oxygen therapy or non invasive ventilation. Could development of this committee be an entensive of what is already happening?

    I have been reassured that experts do not see this as a black and white decision, and wait for changes that could improve the care I can give. Until then I would advocate adequate resources to all care settings and the importance of advances directives, looking at each person as an individual.

    • Hazel says:

      Thank you so much for your comments, Miriam – especially good to hear from someone who really understands these dilemmas from first hand experience. And like you, I’m reassured that experts understand the grey areas of those vexed and sensitive issues. Sorry to delay responding; I’ve just returned from Switzerland (home of Dignitas but I hasten to add I wasn’t there for that purpose!)

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