“A peaceful death is everybody’s right” my bumper sticker reads (although it’s stuck to my desk, not my bumper).

It may seem strange to be thinking about this when we’re so intent on avoiding death during the COVID-19 pandemic.

But, support for the right to die, while at the same time avoiding death from the coronavirus are compatible positions.

The philosophy of the right to die includes control over the means, as well as the timing, of death. This virus is not a peaceful means, and the time is not now for many people.

Some of those I know who are highly conscientious about social distancing guidelines support the idea of rational suicide. They are, in fact, not suicidal in the normally understood sense, but clinging to life as hard as they can in the current circumstances. They simply want the right to choose how they die when they decide their time has come.

Exit International takes a human rights approach to end-of-life decision-making, arguing that individuals should be able to make autonomous decisions. It distinguishes itself from legislative approaches (such as Voluntary Assisted Dying, VAD, in Victoria) which are controlled by medical gatekeepers rather than the individuals involved.

Exit supports the self-determined aim of a peaceful death. It provides information on how to get relevant products, and how to use them once obtained, but does not provide drugs or products themselves. That is, Exit supports people who wish to end their own lives (legal), but does not assist suicide (illegal).

“A peaceful death is everybody’s right”

Do you agree with this statement (that “a peaceful death is everybody’s right”)? Absolutely? For all people? Or, would you restrict this right in certain ways? To the terminally ill? The elderly? The mentally healthy? Those with decision-making capacity? Other restrictions?

Most people, including those who support the right to die, hedge that right in certain ways. Exit introduces its own qualifications, defining rational suicide as “the unassisted but well considered death of a mentally competent adult who may or may not be suffering from a serious medical illness”.

When you apply to join Exit, or access its online resources, you are required to state you are over 50 and have never had a mental illness. Some people thus appear to be excluded from access to information about rational suicide and peaceful death (although I haven’t actually been able to establish what happens if you acknowledge a mental health history and/or being under 50).

Mental health and rational suicide

As a member of Exit, and a retired psychologist, I was asked to speak at my state chapter meeting about the intersection of mental health and rational suicide.

This webpost includes the substance of my talk. It was written for Exit members, but that simply means people who support the right to die a peaceful death at a self-determined time, and who may or may not qualify that right on grounds such as age and mental health.

The philosophy, and the issues raised in this paper, extend beyond Exit members. You may support Exit principles, but not be an Exit member. You may oppose Exit principles. Your views, whatever they are, are welcome as comments.

It’s probably fair to say that everybody wants a peaceful death. Differences lie in whether autonomy is conceded to the individual to make the relevant decisions to bring about such a death.

In my experience, conversations about mental health and rational suicide raise more questions than answers. This post is no exception.

I’m going to review some of the complications of the topic. I’ll use case examples to show how personal views can vary, how they can differ from person to person, and how they align (or not) with organisational positions (using Exit as an example). I’ll raise issues with gatekeeping on the basis of mental health, and discuss ways of protecting the autonomy of decisions about our own deaths.

In other words, I’ll unpack “everybody” in Exit’s slogan that “Everybody has the right to a peaceful death”.

The “right” to a peaceful death is complicated

So, to start with some of the complications:

1. Some people argue, for example, that rational suicide is a contradiction in terms, that suicide is inherently an irrational act, and that wanting to die is therefore a symptom of mental illness. If you’re mentally ill (and, by assumption, irrational) the loop continues, you should be protected from yourself and prevented from taking your own life.
2. Language is another complication. We talk about mental health-mental illness and rational-irrational as if the distinctions were clearcut. But, they’re not clearcut and they’re not dichotomies. There’s no uncontroversial language when talking about mental illness, and that includes the terms mental illness and rationality.
3. We also talk about psychic pain and physical pain differently, as if the physical is more real. But, mental anguish can be just as intolerable.
   “Who am I,” one Belgian psychiatrist asked himself “to make judgments about intolerable psychic suffering?” We need, he argues, to challenge paternalism by listening to patients’ self-reports.
   This is a big ask for those professionals who believe themselves duty-bound to protect patients from themselves.
4. Exit’s position is also complicated. According to Exit philosophy, the right to decide the timing of our own death should be a human right, without medical and legal gatekeeping. That is, we should have the right to die a peaceful death (although no such right currently exists in international human rights law).
   In practice, Exit has its own qualifiers based on age (being over 50) and mental health (never having had a mental illness).

Given these complexities, opinions are likely to vary about individual situations, including the following six examples. These are presented by way of heuristic, rather than because I think we’re ever entitled to judge others’ end-of-life choices. You’re invited to imagine each situation, and reflect on your reaction to the death wish of the person described. Would you, in that person’s situation, want the right to a peaceful death?

The quest for a peaceful death

1. Mademoiselle (Lisette Nigot) of Exit’s film Mademoiselle and the Doctor (which features Philip Nitschke as “The Doctor”) is pretty much a text book case of rational suicide.
   Lisette was healthy, and had never known pain or disease. She was, in her own terms, of sound mind, not depressed, lonely, or a burden.
   But, at nearly 80, after a good life, she wanted a good death.
   Would you support Mademoiselle’s right to decide?
2. Pat and Sue had been in a long term relationship, and were both retired. Sue developed Alzheimer’s and Pat looked after her. When Sue got beyond home care, Pat couldn’t bring herself to put Sue into a nursing home. Nor did she want to live without Sue, even though her own health was okay.
   So, she took it into her own hands to provide a peaceful death for both of them.
   Pat’s death was rational suicide, Sue’s was euthanasia.
   What do you think?
   Do you support Pat’s decision to take her own life?
   Do you support Pat’s decision to euthanise Sue?
3. Ahmed comes from a persecuted minority in his own country, and survived torture during his military service. He managed to escape, and sought asylum in Australia, but was threatened with deportation instead.
   He decided that taking his own life was a better option than further torture and almost certain death in his country of origin.
   He attempted suicide, but failed, and woke up in a psych ward. He was cleaned out and sent away with a diagnosis of depression, but no solution for his safety.
   Ahmed was 37. Would you support his suicide?
4. Laura is 24 and diagnosed as mentally ill. Psychiatric ‘help’ has not helped over 15 years, since she was 9. Cutting, head-banging, and other forms of self-violence provide short term relief from her mental anguish.
   But, “the monster behind her ribcage”, as she describes it, is still trying to get out. A multidisciplinary team in Belgium, who could make a decision to support her peaceful death by euthanasia, discussed her case for months.
   What do you think of Laura’s situation?
   Would you support her wish to die?
5. Jan was first committed involuntarily to a psychiatric hospital in her late forties. She was forcibly restrained, put in isolation, and injected against her will with antipsychotic medication.
   This ‘treatment’ re-triggered traumatic memories from her childhood, and she described her hospital experience as “a fate worse than death”.
   When she was in her early fifties, she was again very unwell, and her partner and friends were desperate. They couldn’t see any other option, for her safety and theirs, but readmission to hospital.
   Jan said she would go, voluntarily this time, but also negotiated a few hours grace. In that time, she took her own life by jumping in front of a train.
   How do you respond to that story?
   Would you have supported Jan if she had wanted access to the means of a  more peaceful death?
6. Brad was 45 and sentenced to life imprisonment for multiple murders. He took his own life rather than face that prospect.
   Would you support Brad’s decision?

Differences and disagreements

Responding differently to different examples is pretty much par for the course.

Likewise, disagreements with other people.

Does this matter?

Possibly not, if we’re respectful and tolerant, and don’t impose our personal views on others.

Personal views and organisational positions

On the other hand, does it matter if our personal views clash with the public position of organisations we belong to? I mainly consider Exit here, but the question might also apply to workplaces, professional memberships, or church membership, for example.

Ahmed, Laura, and Jan would fail Exit hurdles. They were all labelled mentally ill, and only Jan was over 50.

I worked professionally with Ahmed and Jan (not their real names) and understood their wish to die.

Ahmed was not mentally ill, or irrational, in my view. His attempt to take his own life was a rational response to intolerable circumstances. The problem was outside him, not inside. His dire circumstances were impervious to mental health treatment.

Jan, on the other hand, was clearly unwell, but enforced hospitalisation represented a fate worse than death, given her childhood history. She died regardless of the efforts to ‘help’ her, but the means were violent. Twenty-five years later, I still wish she could have had a peaceful death.

At the time I worked with these people, my personal and political views were at odds with my professional guidelines. Now, as an Exit member, those same views bump up against Exit’s public position. I wouldn’t put them on record as an Exit member, any more than I did as a professional.

Personal, professional, political, and organisational positions can, however, involve tensions, as Philip Nitschke, founder of Exit International, discovered to his cost.

The last example, of Brad (real name Nigel Brayley) caused huge trouble for Nitschke. Brayley was not Nitschke’s patient, but Nitschke was still a medical practitioner at the time of Brayley’s death.

The Australian Medical Association (AMA) seized the opportunity to pursue its vendetta against Nitschke, on the grounds that he failed to refer Brayley for mental health assessment.

Brayley had, in fact, told Nitschke to “mind his own business” when Nitschke suggested counselling, as indeed he was entitled to do, given his connection with Nitschke was through Exit, not as a patient.

Philip Nitschke left the medical profession, and Australia, in the wake of this dispute, now several years ago.

I wonder how Nitschke’s critics would ‘help’ a man sentenced to life imprisonment. Also, how they would ‘help’ people like Ahmed, Jan, and Laura.

Nigel Brayley, and Philip Nitschke for that matter, were perhaps in the wrong place at the wrong time, given that Switzerland has since considered assisted dying for prisoners.

Gatekeeping peaceful death has problems

Staying afloat in this territory involves protecting against backlash, so Exit processes now flag those under 50 who have ever been diagnosed with a mental illness. Such gatekeeping is understandable, but also has problems.

1. Firstly, screening people out on the basis of mental illness implies diagnosis, which implies involvement of health professionals, who work within a medical model. Screening is therefore embedded in a medical model and is inconsistent with Exit’s position as a non-medical model.
   (Unless, that is, the screening is done informally, by unqualified people – which has its own problems.)
2. Secondly, most people with mental illness are not permanently and totally irrational. Capacity to make rational decisions therefore needs to be assessed in relation to specific decisions, at a specific time, on a case by case basis.
   Blanket exclusion is too sweeping.
3. Additionally, the broader furore has centred on depression. But depression is not permanent or totalising either. People may have a single episode or, even if chronic, there can be long stretches of wellbeing, and symptoms may be managed. Thoughts about death may vary between good and bad times, and such variation is important for screening purposes.
   General rules are too simplistic.
4. Also, if screening is meant to ensure that people have the mental capacity to make rational decisions, it would need to go beyond mental illness and, particularly, beyond depression.
   Mental capacity can also be affected, for example, by dementia, acquired brain injury (including from alcohol and other drugs) and intellectual disability, but these conditions do not get the same level of scrutiny.
   The intense focus on the impact of depression on mental capacity is not justified. Indeed, you could say, it is not rational!

Does it matter if there’s tension between Exit’s public stand and its philosophy?

I think it matters to Philip Nitschke, who describes the contradictions as “embarrassing” and mental health as a “vexed issue“. He’s keenly aware that screening on the basis of ever having had a mental illness is way too simplistic, but philosophy yields to pragmatism when you’re up against powerful establishment forces.

We, as individuals (those who believe in the right to autonomy over end-of-life decisions) are also up against the State and the Law; Medicine, Psychiatry and other Mental Health Professions; Religious and other Lobby Groups; politicians, shock-jocks and media – all jostling for control of our bodies and our deaths.

The struggle is between autonomy over decisions about our own deaths, and powerful external forces that have a mission to control those decisions.

Protecting autonomy for a peaceful death

Here are some thoughts about protecting autonomy.

1. Take care what you say to professionals

Firstly, take care what you say to professionals.

Professional guidelines in Australia emphasise prevention of suicide, risk assessment, and working within the law. Assisted dying laws might be accommodated, but self-initiated rational suicide would not.

“The elderly”, for example, are considered at high risk of suicide because of declining health and other hardships. Talking about suicide is a red flag in palliative care and, interestingly, one argument for assisted dying is prevention of suicides that would be premature, violent and clandestine.

Individual practitioners may or may not agree with the official position of their professional organisations. If you want to talk about self-determined death with professionals, test the waters first.

Lisette Nigot made several comments in Mademoiselle and the Doctor that would raise alerts with mainstream practitioners.
She said, for example:

1. I wish I were dead.
2. There’s no point in living if there’s nothing to live for.
3. I’ve had enough.
4. I don’t feel like doing anything anymore.
5. When I wake up I don’t want to get up.

She believed she could “convince any psychiatrist” of her mental health.

Maybe she could, but I’d rather be safe than sorry, and these statements all fit diagnostic criteria for depression.

Most practitioners would not let statements like Lisette’s go unremarked. They would ask questions, maybe make suggestions about a referral and a mental health plan, even possibly anti-depressants. This can happen, and it’s in our interests to be alert.

Formal assessment of depression is based on eight symptoms. Five or more need to be present for a fortnight; they need to affect daily functioning; and one needs to be loss of interest or depressed mood. The eight symptoms are:

1. Recurrent thoughts of death, specific plan, or suicide attempt.
2. Diminished interest in activities.
3. Fatigue or loss of energy.
4. Slowed thought and movement.
5. Difficulty thinking, concentrating, and making decisions.
6. Changes in weight or appetite.
7. Feelings of worthlessness or guilt.
8. Depressed mood.

Lisette’s comments mirror at least the first three symptoms.

We’re a long way in Australia from opening up conversations about rational suicide, rather than shutting them down with assumptions about mental health and interventions aimed at prevention. In the Netherlands, by contrast, there’s a proposal to legalise assisted dying for elderly people, like Lisette, at the end of a “full and completed” life.

2. Find sympathetic professionals

Philip Nitschke was, I would think, exceptional in Australia in the early 2000s, at the time of his connection to Lisette Nigot, in accepting her self-assessment of her mental health. And yet, his stance may be exactly what we would be looking for if we wanted to consult professionals about our exit plans.

A survey by Exit in 2015 found that more than 95% (of 1100 respondents) said they didn’t want to be referred to a mental health professional just because they talked about ending their lives.

Many people might, on the other hand, appreciate professionals who accept that suicide can be a rational choice; who don’t jump to conclusions about mental health (even if there’s a personal history); and who are nuanced about the intersection of mental health and rational suicide.

Such professionals do exist. Finding them may be important, although not necessarily easy.

Being tuned in to language is also important. As in, what’s written in referral letters, treatment plans, and medical records, for example.

It is feasible to talk about ‘life issues’ or ‘life circumstances’ that may be causing ‘distress’, rather than medicalised conditions such as depression. (It may, however, be the case that to get Medicare-subsidised services, a ‘diagnosis’ is required. I’ve been told that ‘everyone’ with a mental health plan developed by a general practitioner has a diagnosis, most often depression and/or anxiety, but I’m not absolutely sure whether that’s simply convention, or a Medicare requirement. I would be interested to know but so far haven’t been able to get to the bottom of the matter.)

“Anxiety” can apparently be safer to own than “depression” because, interestingly, it doesn’t seem to raise the same reflex questions about decision-making capacity.

You should be able to monitor your medical records though My Health Record (MHR) – see what’s on it; request data be left out of it; and edit material uploaded to it. (I’ve deleted mine, for political reasons, so can’t comment from experience.)

If, then,  you’re (understandably) wary of mental health diagnoses and associated assumptions about irrationality getting in the way of your plans for a peaceful death, take care what you say to professionals, find user-friendly ones, be alert to language, and as active as possible in shaping your treatment and how it’s recorded.

Nobody wants to end up like the 88-year-old some years ago, who disclosed his exit plans, thinking his GP was sympathetic, found the police on his doorstep, who confiscated his Nembutal, and propelled him into a psych ward.

3, Use your Advance Care Directive (ACD) to advantage

Tread carefully in other words. And, use your Advance Care Directive  (ACD) to advantage.

An ACD could, for example, state:

I do not want to be treated for mental illness, or given psychotropic medication, or other interventions such as ECT, unless I have been consulted about a relevant diagnosis and have given informed consent to a treatment plan.

I don’t know, I should note, how this would play out in practice, although the Mental Health Act appears to allow for such a statement.

If, say, an “authorised psychiatrist” were to consider you/me incapable of informed consent (and therefore needing protection from ourselves) we might well, I expect, lose the argument, find ourselves turned into involuntary “patients”, and subjected to “compulsory treatment”.

ACD’s can also include an (in-principle) veto against nursing homes, particularly ones that don’t support access to assisted dying laws. Nursing homes erode autonomy, and breed depression in proportion to size, and level of personalised care. The larger and more institutionalised the facility, and the fewer staff per number of residents, the greater the likelihood of depressed residents.

Decisions about treatments and medications can also become opaque in nursing homes. It’s clear from the royal commission, for example, that psychotropic medications are used as chemical restraint, and this can happen without the informed consent of the resident or their advocate.

A nursing home would not be my venue of choice for a peaceful death!

4. Choose your medical decision maker with care

It probably goes without saying that the medical decision maker you appoint to make decisions for you in situations where you can’t do that for yourself, needs to be clear about your wishes in terms of treatment and nursing homes, for example, and strong in advocating for you.                                                                          

In sum, the only certainty in talking about mental health and rational suicide is probably the lack of certainty.

It seems too restrictive, however, to exclude people who have ever been diagnosed with mental illness from the possibility of  a peaceful death through rational suicide.

Exit International’s stand on mental health is understandable in politico-legal terms, but jars with advocacy of a non-medical model and commitment to autonomy as a human right.

We might be clear in our own minds about the rights we concede to others, and ourselves, under particular circumstances (such as the examples noted earlier). But, our personal views may differ from each other, professionals, their organisational guidelines, organisations we belong to, the law, and dominant establishment attitudes.

Suggestions for protecting autonomy include treading carefully with professionals; finding ones who are open to discussing rational suicide, and who are reflective about mental health and its language; using Advance Care Directives to advantage; and making sure our medical decision makers are strong and vigilant advocates who are clear about our wishes and prepared to stand up for them.

There may be no certainties when discussing mental health and rational suicide, and who has what rights to a peaceful death, but we can work to navigate the uncertainties.

And that, in conclusion, is my best offer!

I wish you a good life and a peaceful death…Joan Beckwith.

……………………………………………………………………..

NOTE: If you like this paper, you might find others of interest in the categories on Euthanasia; Suicide, and Health and Mental health. Additionally, the Favorites category brings together posts from across main categories and provides a sense of the scope of the website and blog…Joan Beckwith

Social justice is for everyone (previously 2020socialjustice) is also on Facebook and Twitter