Neil Crowther Consulting - making rights make sense

Assisted dying, or voluntary euthanasia as it was once known before being cleverly re-framed, is a confusing issue.

This is because several different strands of the campaign for voluntary euthanasia are presently underway at once.  In Parliament a Private Members Bill aims to make lawful the giving of assistance to people to bring about their death, but only where they are already very near dying naturally and in 'unbearable suffering'.  In the Courts various people including Tony Nicklinson have battled to have the law clarified with respect to whether assisting a person to take their own life amounts to manslaughter.  Such cases include people who wish to end their own life but cannot physically do so alone, but who are not necessarily about die imminently from a terminal illness or their impairment.  Previous such cases led to the Director of Public Prosecutions having to publish his prosecution guidelines on the matter.  The writer Terry Pratchett who has Alzheimers wishes to be able to end his own life with assistance at a time of his own choosing on the basis that he believes that he would not wish to continue living with the effects of Alzheimers once he reaches a certain point and that when he reaches that point he might otherwise be deemed to lack the capacity to make such a decision.

These are of course quite different scenarios.  Yet are frequently conflated which is perhaps unsurprising as all ultimately come under the rubric of assisted dying, or voluntary euthanasia, and stem from the same primary beliefs:  first a fundamental belief in self-determination – that is it an individual’s right to choose the timing and manner of their own death.  Second, that certain circumstances prevent the exercise of self-determination in these matters, namely being mentally or physically incapacitated by illness or injury thus justifying assistance from a third party in realising the will and preferences of individuals who wish to end their own lives.  And thirdly that having a serious health condition or impairment provides a justifiable cause for the State to regard another’s involvement in a death such as a physician or a relative – where that involvement can be shown to have been at the behest of the individual concerned - not as murder or manslaughter but as either suicide or ‘mercy killing’.   Taking these beliefs one by one:

Equality of self-determination

I have spent much of my working life in various roles promoting the idea that disabled people should enjoy equality of self-determination with others, and that it is possible to re-design systems, change power relationships, create more accessible and inclusive societies and invest in support and technology to restore to disabled people the power to be the author of their own lives.    Hence in principle I support the idea that if non-disabled people can choose the timing and manner of their own death then this should be something disabled people are able to do also because I believe that disabled people should have choices equal to others.  But that’s also why I only support it if part of a much wider effort through which disabled people enjoy the right to assisted living, of which dying is but one part.   I cannot lend my support to the idea that society respects and supports the will of disabled people over their deaths, but not over every other aspect of their lives.  Autonomy rests upon meaningful choices and most of us choose life. When people express the will to die our ordinary reaction is to find ways to deter this course of action.  We do not accept at face value the desire of the person on a ledge to jump, or the girl with anorexia to starve herself to death.  We should give people every reason to live before we give them the right to assisted suicide, just as we would anyone else who was contemplating this course. It is a major step for the law to render rational a decision or step which in any other circumstances society deems irrational, even if it is a step that others can take without assistance.  Further, the rights of the individual have to be weighed against the safety of and costs borne by others.  To be fair, this is precisely why the scope of the Private Members Bill has gradually become so narrow, yet the Bill is only one part of a wider campaign - a slippery slope towards achieving these wider goals.  That is why it poses such danger.

Self-determination can’t be exercised by people with serious impairments or health conditions without support   

This is self-evidently true and somewhat bizarrely assisted dying goes further to respect the right to self-determination than most other policy proposals.  And therein lies the problem – if people are not supported to exercise self-determination in all other aspects of their lives, how can we assume them to be making a balanced choice about dying?  This is not just an academic argument. The Daily Mail reported Tony Nicklinson’s daughter  as saying ‘Dad hasn’t got a life – his life consists of being washed by strangers, undignified moments watching the world go by around him. Life should be about quality and happiness, not just for the sake of it.’  Is this inevitable?  As the Treasury announces that publicly funded social care will be available only to people with ‘substantial needs’ (and even then most likely in a highly rationed way which fails to support self-determination or participation) should we not ask ourselves whether we should not be striving to give people a life before giving them the right to die?  People do not make choices about their lives without regard to the opportunities available to them.  No matter what procedural safeguards surround medical decisions regarding life and death decision making, the wider context – and especially following austerity -  is not a context in which such procedural safeguards can have real meaning given the lack of meaningful alternatives

Further, it strikes me that suicide generally is a risky affair for which most people are ill-equipped.   Might most people wishing to end their lives benefit from expert assistance?  Why should non-disabled people not have access to lethal injections if they wish to end their lives and why should we assume that their lives are no worse than people with impairments or health conditions as a consequence of say loneliness? Is physical pain or dementia more of a reason to justify assisted suicide than social disconnectedness?  And what of mental illness?  Should a person with clinical depression or another mental health problem, when deemed by a psychiatrist to have capacity, not be allowed to seek assistance to take their own life in the avoidance of the suffering they have and might endure again? Why are we so quick to respect the wishes of some people but not others? How can we be objective, when the desire to die is evidently subjective and influenced by a wide range of factors?

The fact that most people - even those who support assisted dying - will balk at the idea of assisted dying being freely available to all suggests that it is not about respecting autonomy at all, but motivated by projected feelings about the quality of life they anticipate having if they were to find themselves in such circumstances.  This may be thought of as compassion or empathy, but could equally be borne of fear or disgust (see below).  As an ex-colleague once described attitudes to disabled people: 'malevolent benevolence' can be a dangerous, life limiting form of prejudice.  

Making it lawful to allow people to help others commit suicide where the person has an impairment or health condition

The first issue here of course concerns the fundamental and unqualified duty of the State to protect the right to life.  It is a major step for the law to become equivocal regarding the lives of some people and would seemingly be discriminatory under human rights law.  The state certainly has a duty to protect people against being unlawfully killed. Does the State have a duty to protect the right to life irrespective of the wishes of the individual concerned?  Well yes, it’s called suicide watch.

Secondly, the argument in favour of clarifying the law regarding assisted suicide usually begins from a presumption that the third party actively wants to help but is prevented from doing so by the vagueness of the law and that the person seeking the right to die wishes to protect them.  But surely there are a great many people who have been asked by relative to help them to end their lives for who the law has provided them with welcome protection from being involved in something they are opposed to or deeply uncomfortable about?  Here the law acts to de-personalise the third party's right to refuse.  Should people have a right to ask others to actively help them to die?  If the law is changed in this respect, isn’t it the case than many more people will feel the pressure to assist a relative to die, and without the law to turn to?  And might it be the case that people have relied on the law to back up their instinctive refusal to assist have saved lives by not bowing to pressure in a moment which latterly has passed?  

Lessons from history

Of course the issue I haven’t touched on here so far is the propensity of families and wider society, consciously or otherwise, to encourage or become complicit in the decision of people to end their lives.  Invoking what happened in Germany under Nazi rule generally invites ridicule and rightly so.  There is no suggestion in Britain of an active programme of euthanasia or eugenics.  But that does not mean that there are not lessons from history that we need to be mindful of, not least the impact of the social and economic climate.  Hence I am going to break a cardinal rule and allow this recent interview with the historian Götz Aly in the German newspaper De Spiegl, speak for itself:

Aly: Much of the research on the Nazi era makes a science out of distancing oneself from it or conjuring its demons. The conceit is that people were monsters then -- as if they were completely different from people today.

SPIEGEL: Where are there commonalities?

Aly: The subtitle of my new book is: "A History of Society." I don't just look at the 500 murderers and 200,000 euthanasia victims. Instead, I try to shed light on what was going on around them. For instance, how did family members and neighbors behave? When you take this approach, you encounter reactions that are universally human. The chronically ill and the disabled can become a burden for families. No one is unfamiliar with this experience.

SPIEGEL: Hence the title of your book: "The Burdened." You demonstrate that killings on such a massive scale would not have been possible without the tacit consent of family members.

Aly: I wouldn't call it consent. The organizers of the euthanasia murders systematically asked how often a patient was visited, and by whom. If they had the impression that a family was not very close-knit, the sick person was taken away far more quickly than someone who received regular visits. After the murder, the relatives received an official death certificate with a fabricated cause of death. Most people resigned themselves to this fictitious truth, accepting the chance they were given by the government not to have to know the real cause of death. Later on, this same social phenomenon -- in which crimes were committed in semi-obscurity and a certain amount of looking the other way was required -- is what helped facilitate the Holocaust. The murderers who began the euthanasia program in 1939 were surprised at how little resistance they encountered. It had to do with the shame many family members felt.

SPIEGEL: A sense of shame that still exists today.

Aly: One in eight Germans is directly related to someone who became a victim of these murders. And if you include relatives by marriage, this would apply to almost everyone. But it was not discussed in most families. The murder victims have been forgotten.

SPIEGEL: Relatives can search the archives.

Aly: The institutions that maintain the files on the victims today usually don't publicize the names, even though there are no privacy concerns involved. I asked the president of the federal archive and the federal data protection commissioner why. Both answered: "Please have consideration for the relatives who are still alive." In the case of the Jews, we would never suppress names. But with the so-called crazy people, we're suddenly told that we want to protect their present-day relatives. Why? From what?

SPIEGEL: It's the relatives' fear that perhaps they too have something in them that isn't quite normal.

Aly: That's right. When the first memorials were created 20 years ago and relatives began sending in their first letters, their main concern was: Do we have a genetic disorder in the family?

SPIEGEL: In your book, you quote a father who, in the Nazi period, expected the director of an institution to relieve him of responsibility for his child. This extreme coldness seems disconcerting to us today.

Aly: The extreme nature of it does, but the underlying feeling of being burdened doesn't. My father had dementia for many years before he was put in a nursing home. We knew it wasn't ideal, but there was no other option.