There are so many reasons why we value and promote choice and autonomy. The country and news media quite rightly protests with outrage when bad things happen to good people as their lives and civil liberties are destroyed by acts of terrorism and grievous crimes.
But what about all those many people who are living a life in situations they didn’t want or anticipate? There were no crimes involved, no newspaper reports about their tragedy, but they still got that life-shattering diagnosis. What about those people who, despite even the best care (ignoring the otherwise limited access to hospices, specialists in palliative care, and even GPS), live lives in physical and psychological distress? What about those people with capacity who simply want to make decisions about their life sustaining treatment, even if (perceived by health professionals or politicians) unwise?
A recent news story on the BBC website told of the plight of Omid. The article starts with “Omid was diagnosed in 2014 with the neurological condition multiple system atrophy but is not terminally ill”. As a specialist I would challenge this statement. The public might see this differently from me but multiple system atrophy is an incurable and progressive condition that leads to death. When patients have a high level of disability they can deteriorate rapidly from a complication such as aspiration pneumonia. Omid should be afforded the rights given under the proper understanding of palliative care.
People should be given the facts. People should have their stories told, heard, and understood.
Currently the law in England and Wales allows people (irrespective of having a qualifying diagnosis) to make legally binding advance decisions to refuse even life-sustaining treatment. The law allows health professionals to make life-critical treatment decisions including not offering or the withdrawal of life sustaining treatment including resuscitation. There are legal safeguards in place supported by clear professional standards. The Suicide Act 1961 decriminalised the act of taking your own life but it is still unlawful to assist suicide. In certain circumstances the Crown Prosecution Service (CPS) policy tolerates and rarely prosecutes potential acts of “acceptable” mercy where there is involvement of others in the act of suicide, including those who help loved ones travel to Switzerland. In such cases prosecution may not be deemed to be in the public interest, but the potential risk of a lengthy prison sentence undoubtedly adds to the burden carried by both the terminally ill patient and the friend or loved one willing to give them the help they are asking for at the end of their lives.
Another case currently in the news is that of Noel Conway, a retired college lecturer with motor neurone disease and a life expectancy of less than 12 months. He is pushing for terminally ill adults (who currently meet criteria set out in the CPS policy — namely that they must be over the age of 18, mentally competent, and, most importantly, have two doctors agree that their life expectancy is less than six months) to be able to make their own decisions about ending their lives. These criteria would not be met in Omid’s case.
The debate surrounding the issue of assisted suicide is a difficult one, but perhaps it should be up to the people to decide if there should be parity between the right to life and the right to die. Are some people more worthy or having better qualifying diagnoses than others? Who better than the patient (who has capacity) to judge their own quality of life? The Mental Capacity Act already empowers autonomy but this is not translated into what Omid wants: the right to die now before the inevitable later stages of his condition.
People should be given the facts. People should have their stories told, heard, and understood. Are the opinions of society’s privileged and powerful decision makers biased by the fact they are more likely to afford or be afforded better care?
Many people are still dying for this to be answered.
In memory of a very special patient of mine, her loving and supportive husband, and family.
Feature image credit: Sunset at Porto Covo by Alvesgaspar. CC-BY-SA-3.0 via Wikimedia Commons.