Thursday, 10 July 2014

Lord Falconer's Bill

Unusually, in the assisted dying debate surrounding Lord Falconer's Bill (to be debated on July 18th 2014), I find myself lining up with those who take a more conservative view. Since this is not my natural territory, I've been reading contributions to the debate all the more avidly. I'm trying to put my finger on the source of the unease I feel about the Bill.

For one thing, there doesn't seem to be a great deal of evidence-based research supporting the need to change the law. Rather there is mainly anecdotal evidence. I'm cautious about any argument that's based solely on individual experience, especially where that experience is based on just one case. It's possible to find heart wrenching stories that both support and undermine the approach being taken in the Bill. Those who work with people who are dying can think of cases where there was suffering they would have done anything in their legally constituted power to alleviate. But they've also looked after patients who have changed their minds about a clearly stated desire to die or to not be resuscitated as the circumstances of their illness have changed. Others have relatives who, sadly, make them feel that they are a burden with the utter despair that accompanies that. Still others are in a condition, in their last 6 months, that  makes being faced with choices about whether or when to end their life simply unendurable. Choice around the point of death can be deeply distressing as well as liberating. Asking a person to choose whether to control their own death can be experienced as unnatural and very disturbing. Not all patients have supportive families and some families will be deeply conflicted and divided in such circumstances, with the result that irreconcilable demands are placed on vulnerable patients. 

There's talk about the Swiss, Dutch and Belgian contexts where, despite assisted dying having been legal for many years, assisted death has not become normalised. These countries have different systems of health care within subtly different cultures from the UK. In the 1980's, resuscitation was not routinely discussed with all patients. Today, to ask a patient whether they wish to be resuscitated is a required part of the system. Some patients welcome this, others find it a frightening or distressingly unanswerable question. I cite this as an example of how far and how quickly the NHS has moved and because it shows how contextually regulated doctors' behaviour is in the UK. My concern about the introduction of choice about assisted dying is that, over time (and indeed not much time), a Bill such as Lord Falconer's will lead to a situation where doctors are required to ask patients whether they would like to consider if they wish to terminate their life. Some will obviously not be able to respond, others will be clear and still others will be in that grey zone where it is debatable whether they have sufficient mental capacity.To reach the point where everyone is required to consider this question would be to reach a completely different situation from the one presently laid out in the Bill, but it is the logical end of what is proposed. I believe the Bill will have more far-reaching consequences than many people realise in terms of changing our culture from one where assisted dying is a rare, humane occurrence to one where each person with the mental capacity to do so is required to consider the question and the question has to be decided for those without mental capacity by others. It's unclear where those without the mental capacity to engage in this will eventually stand.

I'm also uneasy about the effect the Bill will have on the relationship between doctors and patients. Frankly, I want my doctors to be the sort of people who recoil from ending someone's life. Unless they are, it's a degree or two more difficult to trust my loved ones or myself into their care. If I or my loved ones were disabled or had limited mental capacity, I would be even more wary. Many of the articles I've read in support of the Bill seem unrealistic or uninformed about the way things happen around people who are dying. Everything is a process, a journey. Few factors are black and white, needs and desires change all the time - sometimes in the course of a day. Relationships with family can be complex; communication and certainty about what has been communicated can be extremely tricky. Even when a particular course of action has been discussed and agreed, the patient or a family member can suddenly begin to express regrets or a change of mind as physiological, emotional, spiritual or social circumstances change. I don't know how medical staff could, in every case, be certain that the correct, irrevocable decision had been made to help someone end their life. The burden of living with this responsibility, especially if it were placed on staff working in palliative care, could be intolerable. And the Bill does not lay out the processes by which assisted dying can take place. 

So I find myself agreeing with Jenny McCartney in her article in The Spectator The Terminal Confusion of Dignity in Dying when she says that the conditions laid down in Lord Falconer's Bill allowing State-sanctioned ending of life are too arbitrary. The logic underlying the Bill is that it leads to a position where the State will eventually sanction assisted dying for all who can demonstrate their capacity to choose it. The conditions set out in the Bill reflect what are thought to be the current limits of toleration in society for the sanctioning of assisted death. These limits will change over time and that is why many people with disabilities or very incapacitating chronic conditions or dementia or abusive family members fear the Bill.

I attended a lecture given by Debbie Purdy a couple of years ago. She was invited to speak to a legal, medical and clerical gathering. There must have been 70 or so present, representing the three professions and with widely differing interests. I was extremely impressed, not to say swayed, by Debbie's moving situation and her very coherent argument that to legalise assisted dying would prevent early suicides in cases of chronic illness as well as offering a humane way to choose to end intolerable pain. In the ensuing debate, many diverse perspectives were put forward. It became evident just how fraught with difficulty it is to create a law allowing maximum freedom of choice and, at the same time, maximum protection for the vulnerable. In the end, most people concluded that the law as it stands maintains the delicate balance between exceptional need for release from unendurable suffering and a requirement to protect the interests of extremely vulnerable people whose circumstances and families (or lack of family) may place them in situations where their lives may be taken from them against their will.

The law is not subjective and it must hold the balance. Lord Falconer's Bill is not, in my opinion, the right bill. I support the need for further, more nuanced debate. I support Debbie Purdy's plea that patients be allowed to discuss what suicide would entail with a doctor without fear of the doctor being prosecuted. I support the position, which I believe to be the current one, that anyone who can demonstrate that they were acting in accordance with a person's stated wishes in assisting them to die would be treated with a leniency that did not lead to prosecution. However, I do not support the withdrawal of the ultimate sanction that it remains possible to bring a case against a person who has helped someone else to die. I am not arguing that to take one's own life and to ask someone to assist is wrong in every circumstance, but I do believe that the State ought not to legislate to permit the taking of life. And, whatever the outcome of the vote, I support the need for people and institutions to continue to act within the law. 

There will be further research and debate about these issues. Much more evidence is needed for the probable effect of changing the law and there needs to be an in-depth and statistically significant study of attitudes among  
  • the dying. 
  • those who have been recently diagnosed with dementia. 
  • the residents of nursing homes.
  • family members of the deceased. 
  • health care assistants and nurses.
  • doctors. 
  • people with chronic conditions who have changed their mind. 

Lord Falconer's Bill does not seem to be predicated on extensive research findings. 

1 comment:

  1. The issue with legislating for assisted dying is that the burden for the act is placed on a medical professional, whose oath of office is for the preservation of life and healing where possible. It wouldn't be possible to legislate that anyone could be nominated for the task, because it would open up the prospect of a huge misuse based on someones subjective opinion that they were doing it for the right reasons?

    I have empathy for those who are suffering, particularly those who view their conditions as a 'living death', those that have featured in recent court cases, which have, so far, not been won, in my judgement, for perfectly justifiable reasons for the protection of the majority. I can't refute their argument that they wish to end their life, but are incapable of doing it themselves. They still have the option of going to Switzerland if they wish, albeit, many wish to die in their own home with their family with them. This is a situation where empathy turns to pity, but a powerless pity that doesn't overcome the objections for people being giving the legal power to end a life.

    There are some powerful voices speaking up for the Bill, including some within the Church, no doubt in good faith, but I' troubled by overt and strident support for the bill from within the Church, which seems to contradict the very principle that life itself is precious - and ending it prematurely amounts to murder.

    I'm glad that suicide is no longer classified as a sin, which shows that the church has moved hugely in terms of compassion and understanding, but supporting legislation like the current bill, which is ill researched, and is being put through on a point of principle of peoples rights to have the decision on when they live or dies, seems to me to preempt that decision which lies in God's hands, not ours.