Fear Should Not Be An Outcome

Many of us have been distressed by the news that Mr Tony Nicklinson, who suffered from Locked-in Syndrome, died from the refusal of fluids and pneumonia just days after a High Court decision that he could not be helped to die by doctors. Lord Justice Toulson and Justices Royce and Macur ruled that he could not enlist medical help to die, 'voluntary euthanasia is murder, however understandable the motives may be.' The Bishop of Bristol, Mike Hill, said that they were 'surely right not to allow Mr Nicklinson the right to die with the assistance of a doctor' because, as the British legal system is based on case law, such a ruling would have opened the way for the assisted death of other much more vulnerable groups. 'It is reported that many vulnerable and elderly people suffer abuse at the hands of their relatives.'

As readers of this blog will know, I have very grave reservations about any change in our current laws to allow assisted suicide. However, I do think that Mr Nicklinson's case and the case of another man which was heard alongside his raise all the questions about end of life care in a particularly sharp way. Let's consider both ends of the spectrum in the debate. Mr Nicklinson is reported as having described his life as a 'living nightmare' and as having said that, after the appeal court's ruling, he was left 'devastated and frightened'. We are not, in this particular case, consigning someone to a situation which they find to any degree tolerable. For those who care on a day to day basis, it is a distressing and morally undermining situation to be forced to sustain life; it raises questions about compassion in a civilized society. To allow someone to get to the point where they feel they have no recourse but to refuse food and die in fear does not seem humane to most of us. At the other end of the spectrum, the Bishop of Bristol is right. There are many people who are unable to speak for or defend themselves who would be vulnerable to other people's pressure to end their life once the legal penalty for anyone who does so is reduced. Perhaps we find this hard to believe. I picked up a copy of Good Housekeeping in the dentist's waiting room recently. In it, Jane Worroll describes how her mother, suffering from dementia, was ill treated in a care home. As her mother became more and more unhappy and withdrew into herself, Worroll had suspicions that she was being maltreated and finally caught the abuse on a hidden camera which she left in her mother's room. The shocking thing in this story is that this was a situation where all the outward signs were that 'this sort of thing could never happen here'. Moved to another home, her mother gradually regained some zest for life. How many other such elderly people are there with no near family who, if the law changed, would become the focus of suggestions about ending their life early?

As medical science finds ever more ways to ensure that life is preserved even when a person cannot perform for themselves such basic functions as breathing, eating, excreting and communicating, we are going to see more and more of these cases.  My question is why we are not doing more mid-ground work? These issues need to be tackled from both ends by the legal and therapeutic communities. Are there ways in law to ensure that relatives or medical practitioners who engage in conversations about a person's thoughts about ending their life and who decide to give assistance when asked to do so are treated with a degree of leniency? I think this in fact happens, but could there be much clearer guidelines about what charges and legal processes will be faced and about suspended sentences in such cases? Are there ways for medics and carers to be enabled to have these very difficult conversations about the end of life with those who have progressive, debilitating conditions and who wish to instigate such conversations much sooner, at much greater depth and to keep the situation under review? Death almost always involves some mental or physical suffering on the part of those who die and those who support and care for them. We cannot eradicate that. Lay people (in the medical sense) tend to believe that modern medicine can deal with every kind of mental distress and physical pain. This is simply not the case, though much more can be done than sometimes is done. Is there not some middle ground where lawyers and carers can give patients more freedom to explore what is best for them and relatives a quicker and more accurate response to questions about the penalty for their actions? Dragging such cases through to appeal with all the publicity that is involved does not appear an appropriate way to deal with these cases. They seem to call for the same kind of specialisation, body of experience and sensitivity of handling that the family courts have developed over time. 

Jane Worroll's story makes me think that education about caring for the elderly is something which should be much more widely available. We run parenting classes because we recognize that bringing children up is demanding and not everyone is a 'natural parent'. Understanding the aging process, caring for those with dementia and doing this alongside work or other family responsibilites is not something that everyone can learn to do without help. As a greater proportion of the population is involved in caring for older relatives, health and social services, churches and voluntary organisations need to give more thought to this. Attitudes to the elderly and an appreciation of ageing should be something that schools tackle in a positive light as well.

I must pay tribute to Mr Nicklinson and his family for the very courageous way they have brought this dilemma to the public's attention and to Jane Worroll for her persistence in bringing to light the truth of her mother's situation.