Marketing medical assistance in dying and the privileging of personal choice

  • November 29, 2023

One of the defining features of a functioning state is usually taken to be that the state holds a monopoly of violence – especially violence towards its own citizens. There are however a number of situations in which the state sanctions killing, or at least does not punish it. Putting aside the activities of the armed forces and police, the other common situations fall under the umbrella of what might (surprisingly) be thought of as the public health. They include, in jurisdictions where they are allowed (not criminalised): termination of pregnancy, suicide and euthanasia.

I discern a number of influences at play when decisions are being made about the exact circumstances under which the state will allow ending of life. There may be others, but as a starter my list is:

  • The degree to which the life under consideration is regarded, by the person living it, as so burdensome as to no longer be worth living;
  • The social value of the life under consideration – that is, how others view the individual per se or as a result of any condition from which they suffer;
  • The practical, technical or emotional difficulties inherent in the process of ending the life – what we might call barriers to implementation;
  • The degree to which differences of opinion have to be taken into consideration in arriving at a final decision.

These sorts of ideas are encapsulated in enabling legislation, of course each being given different weight according to the exact circumstances.

I was recently listening to a talk about medical assistance in dying (MAID) given by the historian Kevin Yuill during a meeting in Jersey. Yuill introduced me to another angle on this, which is thinking about the motivational influences: not how the decision is made but something like why it is being made at all. Yuill suggests that in the history of euthanasia and assisted suicide, the main motivating factors have been ideas about utility and compassion. Utility has featured most brutally in pro-euthanasia and eugenicist ideas about ballast existence and while compassion could be instrumentalised in support of these endeavours, it also has a more altruistic side. More recently however, an appeal to autonomy has come to dominate: euthanasia and suicide (assisted or not) are argued to be, in the right circumstances, individual choices which should not be blocked by authoritarian government actions.

This proposition struck a chord – when I speak with friends and colleagues about MAID, the response of those who support it is that it is a personal choice that they would like to be able to make for themselves if they were in a position where it was relevant. If they have thought further, it is only to consider briefly (and dismiss as avoidable) the slippery slope argument.

And the appeal to autonomy describes neatly how the campaign for medical assistance in dying (which in the UK means physician-assisted suicide) is being framed. What is going on in the public debate about MAID legislation is not that supporters are contributing to a dispassionate assessment of the pros and cons of a momentous change in the law – with potential direct and indirect harms being considered as well as potential individual benefits. Instead the idea is promoted (marketed) that MAID is evidently something people will want to choose and that preventing that choice is wrong. The emotive case histories/horror stories, celebrity endorsement and misrepresentation of the alternatives as the quiet dignity of assisted suicide versus giving oneself up to the horrors of end-of-life or palliative care, are all designed to arouse anger about a right denied.

When the exercise of personal choice becomes the paramount consideration we are in a society where the individual’s wishes overshadow questions of the public good. Now how could that not strike a chord…

Medical assistance in dying is another name for physician assisted suicide

  • February 8, 2023

The rebranding should not blind us to the risks involved.

The argument for what is now called ‘assisted dying’ is often framed in terms of personal autonomy – the right to choose the time and mode of one’s death.

Individuals included in media reports as pressing for that right are typically mentally competent, educated, and supported by a partner or family member who affirms their desire to die. Campaigners pressing for change suggest (at times in strikingly gothic terms) that if their wishes are denied, the likely alternative is a difficult death during which pain is inadequately treated and distressing symptoms are mismanaged. ‘Assisted dying’ is thereby positioned as a form of patient-centred care – a death with ‘dignity’.

Put like this, the case can seem incontrovertible. Who wouldn’t want a ‘dignified death’ in which their own wishes were central to any decisions about their treatment? But this is a narrow and unbalanced way of framing the discussion; it fails to communicate the full range of questions that arise when thinking about serious illness. “Assisted dying’ is a euphemism for physician assisted suicide; it involves prescribing lethal drugs to somebody who will then self-administer them to end their life. Framing the practice like this gives a different perspective that is masked by the rebadging as assisted dying. What we know about suicide more widely becomes relevant in informing what we think about doctor-assisted suicide.

People living with severe, persistent physical illness can of course feel that their condition is intolerable. Indeed, research shows that about one in ten describe having thoughts that their life is not worth living, or that they might be better off dead. And suicide rates in people with a severe health condition are double those of the general population.  Even so, recent data from the Office for National Statistics suggest that in absolute terms fewer than 10% of suicides are in people with a severe health condition. Some of the study findings come as a surprise; for example of 17,195 suicides identified from 2014-2017, only 58 (0.3%) were in people with what the study called low survival cancer. This is about three times the general population suicide rate but accounts for only 3 in every 10,000 of those recorded as having low survival cancer in the study period. In other words the great majority of people (more than 99%) with negative thoughts about their circumstances do not take their own lives.

What does research into suicide in the wider population suggest might make suicide more likely? Many of the leading risks are social – loneliness, living alone, low income and lack of employment, and a lack of social support. A history of problems with alcohol or drugs is also common, especially in men. So is a history of mental health problems – typically not psychotic illness but recurrent episodes of depression. More than half of those who take their own lives have a history of previous self-harm. These risks are also prominent when suicide occurs in the setting of severe physical illness, even among those who are simultaneously in contact with mental health services.

Suicide associated with severe physical illness occurs most commonly in the first year after diagnosis, especially in the first six months. This observation is in line with research showing that rather than intolerable and untreatable symptoms it is concerns about the future and loss of independence that motivate many requests for physician-assisted suicide.

US psychologist Thomas Joiner has outlined an influential interpersonal theory of suicide that makes much sense of these findings. He outlines three risks for suicide – thwarted belongingness (closely-related to the idea of lack of social connectedness), perceived burdensomeness, and acquired capability (overcoming the fear of death). Thinking about suicide in this way helps us to be clearer about the nature of suicide in the physically ill and therefore ‘assisted dying’, which is a risk for exactly those people whose suicide we are used to working to prevent, by actively helping people to “acquire capability”.

The response to these concerns rests upon assurances that only carefully selected cases will be accepted into a programme of assisted suicide. We can have no confidence that such “safeguards” will be adhered to.  For example in one study from the Netherlands, 12% of those accepted failed to meet the criterion of there being no alternatives for palliative treatment and 7% were not reported has experiencing unbearable suffering. I have yet to see a statement from supporters of medical assistance in dying about their opinion on what is an acceptable error rate in the system.

There is another reason for concern about doctor-assisted suicide – less tangible perhaps but with far-reaching consequences. It fundamentally changes our approach to suicide, Under the Suicide Act 1961 an act “intended to encourage or assist suicide” is a criminal offence. There are no exclusions – it is an all-encompassing approach that is reflected in our National Suicide Prevention Strategy. What is proposed is a radical overhaul of the way we approach suicide – a move away from trying to prevent all instances to a world in which we attempt to prevent suicide except when we decide to make it easier.

We are facing in medical assistance in dying a privileging of personal preference over social concern. It represents not just a modification of individual clinical practice but a societal intervention designed to change how we think about and respond to suicidal wishes. I find it hard to believe that the longer-term consequences, intended or otherwise, will be of universal benefit to those most in need of our care.

Culture wars, economic hardship and disdain for mental illness and learning disability – a dangerous mix.

  • January 17, 2022

Germany’s asylums between the world wars housed a mixed population – mainly of people with a learning disability or a severe and persistent mental illness. These people became the focus of Nazi interest for two reasons.

First – and this isn’t as widely known as it should be – residents of the asylums were the first large scale victims of the Nazi’s mass murder programmes. The technologies used later, on Jews, Roma, homosexuals, communists and others, were first developed in what is usually known as Aktion T4 (named prosaically enough for the original HQ address Tiergarten 4). That is, T4 developed gas chambers as an efficient method of killing, purpose-built crematoria for disposal of the bodies, and an associated propaganda programme that is hard not to see as enabling a sort of collusion with the general public. An estimated 200,000 people from the asylums were eventually killed in T4 and its sequelae. This history is covered in some detail in Michael Burleigh’s extraordinary 1994 book Death and Deliverance: “euthanasia” in Germany 1900-1945 (Cambridge UP, listed unbelievably as out of print now).

An apparently separate campaign waged by the Nazis took the form of what we would now call culture wars, with modern art as a particular target. The infamous Entartete Kunst (Degenerate Art) exhibitions curated by party members and promoted by Goebbels are well known, but less so is the link to asylum art. A number of key modernists had been intrigued and influenced by the work of apparently mad people – so-called art brut – a significant collection of which had been accrued by Hans Prinzhorn at Heidelberg and valued as being artistically important in its own right, not simply as a window into the mind of the insane.

The Nazis exploited this association in carefully managed presentations associated with the message – look how modern art is no different to the art of lunatics and imbeciles and yet you are duped into paying huge sums for the public galleries to own it.  With the related message of course – it’s all part of a (Jew-orchestrated) conspiracy to undermine true Germanic society through undermining its culture.

The two stories inevitably intersect, with many (amazingly not all) of the asylum art works destroyed and the artists who made them perishing in the mass euthanasia programmes. This story is well told in a new book The Gallery of Miracles and Madness by Charlie English – unlike Burleigh a journalist rather than historian, with a predictably different but nonetheless well researched and engaging style.

The asylum artists who died in the T4 programme were caught in a perfect storm – of culture wars used by an authoritarian government to garner support for their wider political project; the motivating force of economic hardship coupled with the idea that alien enemies are to blame; the promotion of “euthanasia” as a solution to the societal problem of burdensome lives. Sound familiar?

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