The recent BBC programme Choosing to Die (shown on 13 June) followed the decision by Peter Smedley, a 71-year-old motor neurone disease sufferer of two years, to opt for voluntary euthanasia at the much publicised specialist centre Dignitas in Switzerland.
The coverage was accompanied by long-time campaigner and well known author Sir Terry Pratchett, himself diagnosed as suffering from Alzheimer's disease. The programme has provided further grounds for contentious debate about the right to determine one's own fate when contending with a life-limiting or long-term condition, debilitating disease or health issue.
It is difficult to find anyone that does not have a strong opinion on the subject of the right to make choices about care and treatment in a context where we know people are living with disease and disability longer. This is combined with the fact that a greater burden is being placed on the state to fund provision to those with progressive, degenerative and deteriorating conditions. There are also the continuing headlines related to hospital and social care of the very elderly which gives us some uncomfortable ethical and moral concerns to grapple with.
One of my most recent roles in commissioning services was as End of Life Programme Lead in Devon with emphasis to implement the strategic aim to provide choice and control for people nearing the end of life to enable them to have a good death. Key to this is to have the opportunity to plan care through Advance Directives and Advanced Care Planning.
These crucial aspects of care are aimed to preserve dignity and the right to express wishes related to certain interventions and treatments people may not wish to receive eg Do Not Attempt Resuscitation (DNAR) notification. It is not a big step from this to afford people a more active role in choosing to accelerate end of life with all the ethical dilemmas and legal consequences that go with this.
I recently spent several days at the bedside of a very elderly uncle providing support and reassurance as his systems closed down, his symptoms were managed well and the proverbial ‘died peacefully’ could not have been more the description in his case. ‘A good death’ indeed and one I believe I would certainly accept when my time comes.
The arguments between the pro and anti proponents of the Peter Smedley case have been reignited and many, like myself, feel torn in finding a way to ‘enable’ the rights of the individual and families to be upheld within the law. It is true that people do alter their views at all points along the pathway even in the final moments of life related to, for example, the expressed wishes and preferred place of care. Many people want to die at home but alter their feelings as illness or symptom management issues progress and change.
My current work includes responsibilities as a very ‘hands on’ care provider looking after people with dementia in residential care. Many people will say, as Sir Terry Pratchett does, that they do not wish to become so dependent on others and be so stripped of aspects of their personality, freedoms and character. I hear this view expressed often. However, I subscribe to the view that life is a valuable and purposeful thing whether in a vulnerable condition and ‘in need’ of care and support or in a healthy and able condition.
Experiencing pleasure, excitement and fun can be as much a part of the life of someone with advanced dementia as it can be in the lives of those with great independence. It is not about spirituality or sentimentality when dealing with the fragility of life and management of end of life issues that leaves me uneasy about the work done at Dignitas. The journey we all take is fraught with challenges and emotion but the dangers of creating an expectation that when we become dependent on others we should ‘do the decent thing’ for me overrides the pressure being applied to change the law to make euthanasia legal in the UK and more accessible as a life style (or perhaps the opposite!) decision and right for us all.
A comment made by a member of the public during the county wide consultation on the Devon Strategic Framework was “There is nothing more important for this PCT to get right than end of life care”. I was very struck by this and feel to create a system which has many people in their 80s and 90s feeling tacitly pressured to repeat Peter Smedley’s action would be very sad. This, I am sure, would be an inevitable consequence of law change.
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