Treatment resistant depression and assisted dying

Please note – Trigger Warning: If you feel your mental health could be affected by reading about how others can be affected, we advise you read no further.

This is a challenging post to write, given the topic area, and given that the focal paper is not a research paper per se but an opinion piece designed to generate discussion around the conditions placed on assisted dying. In agreeing to write about this, I had to weigh up some considerable hesitations against a sense of needing, in some way, to help bring this discussion into a clinically-minded forum.

Assisted dying, wherever one stands on it morally and ethically, is a practice that is now legal under certain conditions in a growing number of countries. If we look at the debates around abortion, which has a much longer history as an active social concern and legal medical procedure, we can expect that disagreements about assisted dying will not disappear, perhaps not ever. However, there is perhaps something to be said from trying to approach the debate with reason and scientific rigour, and the onus falls on us and our collective expertise, for what it is worth, in the case of considering mental health-related reasons for people wanting to be helped to die.

A difficult and sensitive discussion, but an important one to have.

My personal perspective

Before trying to approach this ‘scientifically’, I cannot see a way to do so without first of all acknowledging and addressing my own emotional and moral reactions to the paper in question, and then trying to set these apart. It would be disingenuous of me to write as though I were some kind of robot scientist on the issue. Without being self-indulgent, but with clarity of position aforethought, there are a few things you should know as a reader about what might have, unintentionally, influenced my reading of the paper:

I have worked as a Clinical Psychologist with people with apparently treatment resistant depression. I believe that in some of those cases relief and progress was experienced, including in cases where people had attempted suicide.
I have experience of treatment resistant mental health problems and suicidality in my personal life.
I am not a religious person and I do not have a particular stance on the wider debate about assisted dying. I find arguments both for and against assisted dying to be compelling and I do not know on a moral or emotional level what is “right” if indeed such a thing exists.
I currently volunteer supporting people with cancer, including people with terminal diagnoses, who are having to consider death very actively.

Before examining the paper, and without going too far into the wider realm of euthanasia and assisted dying, I will briefly touch upon some important context on the provision of euthanasia at the present time, although I am not an expert in any sense on the topic.

What is Assisted Dying?

Assisted Dying (AD) is a term used interchangeably but perhaps inaccurately with euthanasia. Whilst euthanasia can be a direct act by one person on another with the intention of ending life, AD only refers to one person giving another person the means to end their life and often only in cases where people are terminally ill. As such, AD semantically and pragmatically moves the sense of responsibility from the clinician or external party. AD typically is the legal involvement of clinicians in helping an individual who wishes to die through a reliable means of medication. The exact legal process depends on the country; as of 5^th October, five US states and the Benelux countries permit AD if a number of conditions are clearly met, whilst Columbia permits euthanasia and Canada is likely to permit both euthanasia and AD within the next year. Following the 11^th September vote in the House of Commons, where 330 MPs voted against AD in comparison with 118 MPs voting for the introduction of AD, it seems unlikely that we will be contending with the ethical dilemma of AD for treatment resistant depression in the UK in the near future. However, the possibility of AD for treatment resistant depression in an accessible EU country means that discussion on the topic is important in a practical as well as philosophical sense.

Schuklenk & van de Vathorst (2015) present a discussion paper:

directed at those who already support the availability of assisted dying for competent patients suffering from catastrophic illness (p.577).

By setting out such a position, they shield themselves from some of the more probable response commentaries that could arise. They also make it clear that their debate is not a philosophical one; rather, they aim to make the case for treatment-resistant depression as being at least as valid a condition for Assisted Dying as other medical conditions where there is:

no ‘natural way’ out of their continued suffering (p.578).

What is treatment resistant depression?

The paper concerns the argument for people with treatment-resistant depression to have the right to request help to die. For clarity, we need to consider what is meant by treatment resistant depression (TRD). TRD is difficult to define, since what is ‘treatable’ can only be understood at any one moment in time given treatment developments, and what is ‘resistant’ can only be understood from a combination of professional and sufferer viewpoints.

Schuklenk and van de Vathorst (2015) draw on other attempts at definitions in the existing literature, with a broad-brush notion of TRD being “essentially unresponsive to conventional therapeutic efforts” (p.578). They discuss the limitations of medication and, somewhat strangely, also question the efficacy of Cognitive Bias Modification, which seems an unusual psychological therapy to focus on.

The format of Schuklenk & van de Vathorst’s (2015) paper is then to present information on the mechanisms of application for AD by people with TRD in Holland and Belgium, to look at the competency of people with TRD to make decisions about their death, to explore the arguments against AD in the case of TRD, and to conclude with recent AD legislation developments which have failed to acknowledge TRD.

The authors of this paper describe treatment resistant depression as being “essentially unresponsive to conventional therapeutic efforts”.

Assisted dying in the Netherlands

In Holland, AD can be applied for on mental health grounds and this has been the case since 1998. 42 people were assisted to die on mental health grounds in 2013. The legal criteria are listed but are evidently open to considerable debate. For example, how does one prove, in the case of TRD, that “… there is no prospect of improvement based on the state of medical science at the time when the decision is made” (p.579)? Or what a, “…reasonable alternative to relieve the suffering” would be, and in who’s eyes the alternative would appear reasonable? Legislation is naturally full of such clauses, but one can see how these become even more complicated in a situation where the life-limiting illness escapes clear definition.

The system in Holland requires three doctors to be involved in the decision-making process for people with mental health problems requesting AD, but one imagines that even given this, the emotional strain experienced by the physicians involved would be considerable, and this is not an angle considered in the paper or in the subsequent commentaries and responses.

In 2013 in the Netherlands, 42 people were assisted to die on mental health grounds.

In 2013 in the Netherlands, 42 people were assisted to die on grounds of their mental illness.

The issue of competence

The authors then explore the issue of competency and how depression could be seen as affecting the judgment skills of the individual with TRD. There are some interesting arguments in this section, although surprisingly little of one possible thread along the lines of, if the depression is treatment-resistant, then to some degree we have to consider that the way that the person is thinking is the way that the person does think. If we say that this way of thinking is incompetent, we would legally remove a lot of other rights and powers from that person, which then becomes a whole other issue about the competencies of many people with mental health issues.

Schuklenk & van de Vathorst (2015) do touch on this in their argument: that there is no evidence for a pre-depressed person being ‘re-discovered’ in people with TRD. I find this argument flawed, because if someone did re-discover a pre-depression self, they would by definition no longer be suffering from TRD and then this would raise questions about whether TRD is a reliable diagnosis. The authors also make a fairly bold statement in this section without supporting it with evidence which is somewhat difficult to accept, which is that people with TRD who attempt suicide but survive, “…will continue to see their lives as not worth living” (p.580).

The authors argument that the notion of a disease being terminal as being the justification for AD is a flawed one, but one that perhaps helps society to justify AD ethically. The authors contend that it is about the perceived quality of life and the sense of hope that one has that makes life worth continuing. This notion of individual perception and subjective experience lies at the heart of their paper, and is evidently problematic for any clinician involved in the AD process.

Future treatment options for people with treatment resistant depression

In terms of potential treatment development, the authors say the pace of innovation is too slow to be realistic for most people; this might be a more difficult argument if the person with TRD is 30 as opposed to 70, an issue they do not explore. However, one can see the case being made that if you have tried a number of antidepressants and a number of talking therapies, and that none of these have helped, and that future developments are likely to be of a similar ilk to these approaches, then it would seem unlikely that a treatment will be found to help this individual.

One of the points made strongly in the article is that making AD accessible to people with TRD does not rule out investing in better caring services and does not prevent people from continuing to search for treatments. The authors suggest that it may be that knowing that AD could be accessed is helpful for people with TRD and indeed may give people with TRD some hope. In their response article to commentaries made by other authors, they refer to their stance as one of compassion, especially towards people with TRD who might consider suicide, since “… it is not obvious to lay people how to obtain the means to guarantee a peaceful death” (p.2).

Unsurprisingly, the paper has received several commentary responses. Some of these and other existing counter-arguments to opening AD to people with TRD are rebuffed by Schuklenk & van de Vathorst (2015b) simply on the grounds of not being in the target scope of their paper, which seems reasonable given the potentially limitless boundaries for debate around AD. They do give some consideration to Broome & de Cates (2015) but this is largely around a philosophical argument about whether one can decide if they will be better dead as one cannot know what the state of death will be like, or what the process of dying will be like. Broome & de Cates (2015) also address the issue of competence in relation to TRD and the challenge posed by a condition lacking a firm diagnosis, but neither of these are re-appraised by Schuklenk & van de Vathorst.

New compounds that work through the same brain mechanisms as ketamine, and non-drug treatments such as magnetic brain stimulation are currently under investigation.

Conclusions

This is an unusual paper to comment on for The Mental Elf. I hope in doing so that we might be able to encourage productive and balanced debate. Personally, I did feel a real sense of sadness in reading the paper, although I hope that this has not coloured my review too significantly. I maintain a sense of concern for physicians who either now or potentially in the future will be required by law to pass judgment on applications for AD and to assist in the process, and how the medical profession is thinking about equipping doctors to be emotionally and professionally supported in doing this or in deciding not to do this. I also wonder where opening the doors to TRD might then lead in terms of mental health-related requests for AD, and where that might leave mental health professionals in terms of their willingness to make diagnoses.

I also think that there is a line of discussion that may be explored in other literature (I am not sure) about the perceived difference between AD for terminally ill people, and AD for those who feel life is not worth living, but who do not have a terminal illness. As Schuklenk & van de Vathorst (2015) make clear, the seemingly greater degree of acceptance of the former may not be a logical one.