Way to Go ?
With sincere apologies and all due reverence to Stephan Jay Gould
For my first essay on the theme of complexity I have chosen to explore a subject that may be important to some of us; how we die.
Back in the good old days of 1953 (which never really were good) one of the father figures of modern science fiction, Ray Bradbury, wrote a novel entitled Fahrenheit 451. It takes place in the future where a hedonistic anti-intellectual America has completely abandoned self-control. Anyone caught reading or possessing books is persecuted while, in a twist of definition, all the books are burned by the firemen. Yet society, in the book, saw that as the natural role of the individual called ‘fireman’.
I was reminded of the book during some work into the social role of modern nursing. As that is my role i.e. nurse I actually do sometimes research into what I should be doing! I was doing that research because of a recent ruling by our House of Lords; the supreme lawgivers in the UK, reported in the Times of 31 July 2009. Well, they are the supreme lawgivers until they move to a new location and title – but that, as they say, is another story. However, the report did prompt me to remember why I called this blog, ‘Thoughts on Complexity’ and I decided that it was time to put my pen where my mouth was – so here goes!
The ruling concerned a courageous lady who was suffering from multiple sclerosis (MS). In this country suicide is no longer illegal, but to assist an individual to carry out the act is. One of the ways that those who wish to end their lives prematurely do so is to travel to the Dignitas clinic in Switzerland, where physician assisted suicide has been legal since 1940. About 100 people have made this journey from the UK so far.
In this ladies case she wished to leave the journey until it was no longer possible for her to travel alone and therefore would need her husband to assist, potentially aiding her death. This would leave him open to prosecution on return and she sought clarification as to what circumstances would lead to his being charged – so he could avoid them. The Lords duly agreed to this and they have directed the Director of Public Prosecutions to publish guidelines.
This ruling has been hailed as a great victory by those who see the ‘Right to Die’, sometimes, loosely, known as ‘euthanasia’ as a necessary part of existence in a liberal democracy. I believe that they are correct to assume that the ‘Right to Die’ will be widely accepted and that it is only a matter of time before it is very likely that assisted suicide is available in more western societies. After all, if an individual has the right to travel to a strange land with assistance to die at their own hand why should that right not exist in the UK for those that cannot afford the journey? Therefore the notion of equality of access to care at the point of need, enshrined in the National Health Service almost demands the access to assisted suicide by all. I will return to this theme in a moment, but wish, briefly, to revisit my opening paragraph.
I thought of Ray Bradbury and his version of fireman because my first reflection, as I realised the possible consequences of this ruling, was that I, and my colleagues, might be called upon to assist such an act in the future. I am a great believer in the law of unintended consequences; and here may well be a good example. The role of doctor and nurse may well need to change in the public eye – but to what? Would there be a complete reversal, as in Ray Bradbury’s fireman? Would the notion of ‘doctor’ and ‘nurse’ become more associated with death than with cure? So having established why a ruling by the highest court in the land made me think of a 1953 science fiction novel let me return to the theme of why I believe the ‘Right to Die’ activists may be right and yet ‘not right’.
The most conventional way to present the argument between the camps in the ‘Right to Die’ argument is to characterise it as a conflict between the issues of autonomy and sanctity of life. But before we address this it might be worth looking at just what terms we are using here, because in the words of a Cher song, ‘words are like weapons, they wound sometimes’.
Firstly, the word euthanasia, which seems to be commonly accepted in the sense of hastening or causing death. Actually, it is derived from the Greek for ‘Good Death’. In the context I am using it here there are two subdivisions; that of passive, in which treatment is withheld, or active, in which treatment is given to cause death. Within that definition a moment’s reflection will see the ethical minefield that is thrown up in modern western medicine. Quite rightly, I believe, we have a deep-seated revulsion of some forms of euthanasia based on the excesses of political extremes in the 20th century, primarily based on the second use of the word. Yet we now have a dilemma. We can now do so much to maintain life that at times the difference between maintaining some life and restoring to some form of life with ‘quality’ (whatever that is!) can be very blurred. Remember that the World Health Organisation (WHO) looks at the notion of palliative care as seeking to ‘neither prolong life nor hasten death’. Yup, complex – not complicated – complex. There are reasons for the use of the word ‘complex’ but that is the subject of a future essay.
However, what I am discussing here is not euthanasia in the sense that I have described; it is ‘physician assisted suicide’ and the consequent doctors/nurses involvement in that act. The distinction is subtle, but vital. This ‘death’ would only take place after a competent person said that they had had enough, for whatever reason, and all-due safeguards in the law etc. – but should we, as health care professionals, assist that act?
Certainly if the notion that assistance becomes legal then there is a need; I have seen enough failed attempts at suicide now to realise that although some were indeed ‘cries for help’ some were intentional. The failures lead in some cases to what can only be described as deaths that were long, painful and lingering. However, that strays into slightly different areas and I know that the experiences in Oregon, which has a ‘Death with Dignity’ law indicate that even with help, things can and do go wrong.
Having reduced the complexity to a more (in my view) manageable level I am going to narrow my discussion further by excluding children. The very notion of autonomy carries an inherent belief that the individual has the ability to make an informed decision and that only comes during the process of becoming an adult. And this is where I return to the polemic between the protagonists. Those that put forward the notion of an individual’s autonomy, and therefore right to choose, and those that support the notion of the sanctity of life where life must be preserved at all costs.
We always, as nurses, treat the individual adult in our society as an autonomous agent. Indeed our code of practice enshrines the idea that the individual adult is, unless proven otherwise, able to make rationale decisions about the direction their care should take and we are to assist them in that decision, even to the detriment of that individual. The usual example of this is with the Jehovah’s Witness and blood transfusion; there are others. Yet, when the rationale decision made by the individual is that it is time to die we cannot assist. The very autonomy by which we have supported the patient on their journey is removed at the last moment and we have to do our best to support them in their last days and hours irrespective of their wishes.
Please let me be explicit here. It is possible to achieve a ‘Good Death’ in the sense of the individual slipping away peacefully, surrounded by their loved ones; pain free and in full acceptance of their situation and fate; but in my experience that is rare. Irrespective of available resources and skills to support the individual our society does just not, in general, do ‘death’. Death for us has become removed from the family environment to the hospital: from the familiar and intimate to the strange and remote.
The very ability by which we can now save and extend life means that death has been reduced, in the perception of some, to almost an illness that can be overcome with the application of sufficient resources and time. Possibly an indication of the extent to which this has taken over our thoughts is that most health care costs in America are, apparently, spent in the last two weeks of an individual’s life. So to my mind the very possibility that society moves to a position whereby the individual accepts the notion that they will die and be able to decide time and place should they so desire has merit. Implicit in that conclusion is that there should be some form of medical aid available.
Yet on the other hand those that stress the ‘Sanctity of Life’ also have a valid point. Irrespective of any religious starting point, and there are many, who are we to aid another in the ending of life? Indeed I count myself as an atheist, yet within that respect the views of others. Moreover, the notion of the provision of care for the modern nurse is primarily biased towards cure. Only in the last half century has there been a growing acceptance that at times cure is not possible and the consequence growth in the palliative care movement has shown what can be done.
Surely rather than end a life deliberately is it not better to persuade and aid the individual to live as long and as well as possible? We may not be able to control all pain and suffering yet, but we are well on the way. If we can equip society as a whole to understand the process more and accept that there is a time there are limits to what even modern medicine can achieve. As one commentator put it, ‘we live in a system that can find billions to pay bankers their bonuses, yet we have to fund most of palliative care from charity’. Moreover, once we accept the notion of aiding suicide then where do we stop? Are we on a slippery slope that leads, eventually to the worst form of euthanasia? To me this argument also has great, possibly greater, merit.
However, it seems to me that, at the moment, the protagonists of autonomy have the upper hand or the ‘momentum’ as another commentator remarked. So it seems to me that the idea of assisted suicide will become enshrined in law – although there is a long way to go. I suppose in a sense my conclusion is that if the public of a Liberal Democracy choose that path then it is up to them. What I do know is that I will not be able to take part. I will not be able to follow the changes that would entail in the provision of care as a nurse, as I see nursing; possibly the notion of fireman in Ray Bradbury’s book is not so far from what nursing may become in societies understanding in the future. I only know that I cannot go there.
So there you are my first essay along the theme of complexity and its management; I hope you found something of value. As a well loved comedian in this country once said – and he was a devout Roman Catholic who loved to poke satire at the church establishment– ‘May your God go with you’.
