Having PLS, a rare form of Motor Neurone Disease, I'm a grateful beneficiary of the NHS - and contributor. The NHS, if not in crisis, is in dire straits, caused, we're told, by the aging population. An exponentially rising demand on the national purse seems inevitable. The cheapest solution would be to legalise euthanasia, voluntary or even involuntary. However 20th century history should have taught us that this is an inhumane road, leading to the deaths of 275,000 people between 1939 and 1945 under Aktion 4, based on 'the idea that there is such a thing as a life not worthy to be lived' (Leo Alexander, writing after the Nurenberg trials). An easy solution but finally unacceptable.
My observation is this: Death is natural; humans causing death is unnatural. Our culture appears to proclaim that death is unnatural, to be feared and postponed at all costs. Yet it comes to us all. Frequently medical advances will be greeted as 'saving' so many lives, when the truth is it could extend those lives by a few months or years. Doubtless the dream suits the pharmaceutical industry, the illusion of virtual immortality. However it is a dream, which would turn out to be a nightmare.
Is there a better way? I believe there is. First of all, let's not be afraid of saying that death is part of life. Instead of making it a fearful monster to be avoided, let's admit it is a fact to be faced. And then, as a nation, let's seek to make the natural process of dying as pleasant - or at least not unpleasant - as possible, something to be celebrated.
Would it not be better if, instead of pouring funding and resources into officiously keeping alive, the national health budget was shifted to surrounding natural dying with comfort and dignity? We pay lip-service to the importance of palliative care. We are rightly proud of the history of hospice care in this country. The majority of hospice and end-of-life home care is charitably funded. It is true that many people die in hospital (about 50%); it's also true that most of us don't want that. Dying at home is the choice of 83%, a 2014 survey found. Home care, where possible, is cheaper than hospital care.
So I suggest a recalibration of the health and social care budget, designed to provide top-quality palliative care nationwide. This would clearly involve a massive programme of specialist training as well as simple training in home care. It would mean reversing the disastrous policy of cutting the district nursing service. It would also mean that we rethink the treatments we, the public, demand for every eventuality at every stage of life. We might have to accept more readily doctors saying, "I'm sorry that we cannot do anything to prolong your life but we can offer you excellent care for the time that remains to you." One doctor told me,
"Where I believe there is a problem is in highly expensive treatments to prolong lives that are ebbing away either with chemotherapy or intensive care. We have a clamour that the treatment that prolongs the process of dying for a few months in a trial should be available to all. Such results are a stepping stone to more effective treatments but not a justification for implementation across the board."If the NHS provided better end of life care, then charities or individuals could plug gaps in research and non-essential treatments.
Undoubtedly the definition of 'essential' in this context is for society to debate and law-makers to decide. It would be intolerable for doctors alone to have to decide the fate of patients. Their calling is to 'tread with care in matters of life and death', and 'not to play at God' (modern Hippocratic Oath). In order to achieve the quality end-of-life care that would mitigate the fear of the process of dying would undoubtedly cost money. How such funds would be raised, whether through more rigorous rationing of NHS treatment or through hypothecated taxation or somehow else, is beyond my competence and the scope of this blog.
My primary purpose here is, as a patient, to join calls, like those made by the 75 leading health experts to Theresa May on 11th January, for radical solutions to the break-down of our health and care system. It is not a problem for us that can wait for some utopian answer in 2020. Let's accept that we'll die - but avoid the unacceptable shortcut of the sirens' road towards euthanasia, the cheap solution.