Friday, 18 July 2014

The right to die the right way…

Thou know’st ’tis common, all that lives must die,
Passing through nature to eternity.
– William Shakespeare: Hamlet

Having a slightly different, and particular, perspective on the matter than most, I find myself agreeing with, and understanding, most of the arguments (on both sides – apart from those based on evangelical posturing) concerning Lord Falconer’s attempt to get his Assisted Dying Bill through the House of Lords, today. David Cameron may not be “convinced”: but, then, I’m not so sure he fully understands what is at stake.

This is not to say that I’m straddling – or resting my bum on – the palisade of pointy issues this raises: just that, having lived my life for the last eighteen years in what I think most people would consider intolerable continual pain (along with other symptoms that can make life a challenge), I know that I can survive – albeit with diminished quality, sometimes – in circumstances that I previously wouldn’t have envisaged possible. I also believe that, knowing you can die in a non-excruciating, non-extended manner at the moment you choose – and in a manner you choose – when you eventually (over a period of time) do reach the point of intolerability in suffering (which is different – and changes – for everyone) – would give me great, deep comfort (which would also, I think, mean that I would put up with more agony that I envisage, even now…).

Desmond Tutu, in last Sunday’s Observer, wrote beautifully and meaningfully on the issue – from a personal perspective – demonstrating to me that his Christianity is more than mere religion, or even faith, but a true, humble belief in the value (sanctity?) of all human lives, a true empathy for the condition of others, and not just a set of old-fashioned rules:

This takes me to the question of what does it mean to be alive. What constitutes quality of life and dignity when dying? These are big, important questions. I have come to realise that I do not want my life to be prolonged artificially. I think when you need machines to help you breathe, then you have to ask questions about the quality of life being experienced and about the way money is being spent. This may be hard for some people to consider….

It is important for all of us to talk about death and our dying. A survey was done of doctors in the UK in 2008. As many as two-thirds of them said they had difficulty discussing end-of-life care with their patients. Physicians were once healers of life and easers of death. In the 20th century the training for the latter has been neglected.

Death can come to us at any age. The clearer we are about our end-of-life preferences, the easier it will be for our loved ones and our doctors. I am coming to understand the importance of having a living will or advance directive, as some people call it. I do not want artificial feeding or to be on an artificial breathing machine – I don’t want people to do their damnedest to keep me alive.

In the same paper, Daniel Boffey featured the words of Baroness Campbell of Surbiton: who “has spent a lifetime defying the consensus. When she was 11 months old, doctors diagnosed her with severe spinal muscular atrophy and told her parents her life would be short. At six she attended a school for the severely disabled, yet she went on to gain a master’s degree. She was later told by prospective employers she was too disabled to work, only to end up running major campaigning organisations and being selected as commissioner of the Equality and Human Rights Commission.” She said:

This bill is not safe. We know that the country is in crisis in terms of its social care and the choice they talk about will not be there for many people. So you can either have a lethal injection or go home isolated and struggling to get the care that you need. And it is ridiculous to say that a person should be eligible if they have six months to live when we know you cannot be sure when someone will die.

As someone with a progressive illness, I know only too well what that means. The medical profession have given me six months, one month, one week on many occasions. You cannot predict.

Stephen Hawking – who is obviously also similarly immersed in the issues such a bill raises – does back it, though: saying, in an interview with the BBC, that “it was “discrimination against the disabled to deny them the right to kill themselves that able bodied people have…” and that – although he once tried to stop breathing – it would be “wrong to despair and commit suicide, unless one is in great pain, but that is a matter of choice. We should not take away the freedom of the individual to choose to die.”

The words that meant most to me, though, come from Jo Beecham, who was diagnosed with advanced ovarian cancer in 2011; and keeps a stock of drugs in her fridge that will end her life, when she deems them necessary:

I can understand people wanting to go down the palliative-care route. There is some part of me that thinks, “Oh, just submit to the care. Just allow yourself to submit to it.” (This is the route I’m going down at the moment.) They will take care of you. And I'm sure that people who are ill want the system to take care of them. But no one can guarantee I will have a good death. I’ve been told that the likelihood is I will need 24-hour care, probably sleeping for most of the time. I can see that some people might like that. And maybe, if I start taking morphine and drifting off anyway, that might be OK for me too. But I want to have the choice.

Putting aside any emotional arguments, for a moment – although I do not know how you can separate feelings from discussions of death – there is now a legal need to begin quantifying what can and can’t be done to help those who are terminally ill, or in great suffering (however you define either of those terms). As Lady Hale – one of the five justices of the supreme court who recently ruled on this matter – stated:

I have reached the firm conclusion that our law is not compatible with the [European human rights] convention…. Having reached that conclusion, I see little to be gained, and much to be lost, by refraining from making a declaration of incompatibility. Parliament is then free to cure that incompatibility.

And, as Saimo Chahal, the solicitor who represented Jane Nicklinson – widow of the right-to-die campaigner Tony Nicklinson – said:

[The judges] have given a clear message to parliament that it must review the ban on assisted suicide and the judges have said they may be minded to make a declaration next time around.

It creates a national debate and a necessity for parliament to look at it. Parliament must consider this group of people who have suffered catastrophic injury and who have a settled intention to end their lives.

To me, this is, firstly, then, about choice – as Jo Beecham and Stephen Hawking say. As is often mentioned, when assisted dying (not suicide) is discussed, some of the ways we treat humans, as they approach death, would be punishable by law if we ‘cared for’ the animals we are responsible for in the same way. Admittedly, this can be seen as a little simplistic – although, to me, all life is sacred (or, if you want a word without religious connotations, inviolable…) – but it does have an easily understandable ring of truth: we should be as humane with humans as we are with our pets. They cannot choose when or how to die. We can.

It is also about control. Unlike most other people in western civilization, I do not have that much control over my life. I do not get up every morning, knowing what I will be physically or mentally capable of; being able to make plans that I can fulfil. (In fact, on many days, I do not get up every morning. Full stop.) I really do live each day – sometimes each hour – examining (and stretching) my then capabilities; making constant risk-benefit (or struggle-reward) analyses about my next action, based on the whims of my health: an almost infinite decision-tree stretching, though – I hope – into a long and preponderantly enjoyable life (as it is now).

Some things are constant: the love and support of my family and friends; the wonderful place where I live; the growing piles of pills; the increasingly frequent medical appointments (when I can manage to make them…). But a majority of my life is spent trying to ascend and conquer what I know from my ‘previous’ life, the majority of people – those with their health (reasonably) intact – take for granted.

This is what gives me that “slightly different, and particular, perspective”. I know there are many people much worse off than me; but I also know – especially having witnessed some very cruel and prolonged deaths, at the end of cruel and prolonged illnesses… – that, when the time comes, I will know how much cumulative suffering I am capable of dealing with (almost certainly a lot more than I currently imagine…); and will make a decision: a decision that will probably be made many times – and has been made before… – to keep on fighting. But one day, I may decide – along with those closest to me – that enough is enough. I will have the choice; and I will be in control. I just hope that, when that time comes, the law agrees with me.

Jo Beecham died peacefully at home, in the company of friends, on 15 October 2014. The drugs stayed in the fridge until her friends disposed of them safely.

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