Discursive of Tunbridge Wells
John McGowan
3778
Following recent cases of euthanasia for mental health problems in Belgium and Holland, Clinical Psychologist Masuma Rahim discuses what we do when someone seems beyond help.
In my line of work – as a psychologist in a Community Mental Health Team – my colleagues and I spend more time talking about ‘risk’ than almost anything else. And when we say ‘risk’, we rarely mean ‘risk of harm to others’. We almost always mean ‘risk of suicide’. There’s an understanding that, when you work in mental health, a lot of your resources will be focused on trying, to the best of your ability, to prevent your patients harming themselves.
It was therefore with some surprise that I read about a 20 year-old woman in the Netherlands who had chosen to be euthanized. Having been sexually abused from the age of 5, she was considered to have an ‘untreatable’ Post Traumatic Stress Disorder, reportedly co-occurring with anorexia, depression and hallucinations. It has since emerged that, while only two mental health patients were euthanized in the Netherlands in 2010, this rose to 56 in 2015. A recent review showed that the overwhelming majority of those with mental health problems who chose to be euthanized were women with long-term conditions, often with some kind of trauma.
The right to end your life is a complex topic and perhaps one which it very difficult to have a settled opinion about. In health, the baseline often seems to be ‘preserving life above all else’. But whether you believe in the sanctity of life or not, it’s not quite that simple. When you work in mental health you work with people who are in emotional pain. Many will have been in that pain for years, and, as we know, the impact of mental health problems on people’s lives can be enormous. Academic and employment prospects, family relationships and physical health often deteriorate following the onset of psychological difficulties. Often, by the time people access specialist mental health services they are in need of more intensive support and though we try to give them whatever support they may need, we know that sometimes we, as professionals, fail to help them. We wrap this up as being ‘treatment-resistant’ or ‘failing to engage’ but what it means ultimately, is that ‘I, with my years of training and expertise, have not been able to heal you’.
Such a sense of failure can strike at the very heart of your professional identity. Most people go into this work because, at some level, they want to help people in distress. Feeling impotent when you are unable to do so is never pleasant. But the reality is that some people have been so damaged by life that by the time we see them we cannot undo what’s happened – not to the extent we would like. Sometimes, when it seems all the options have been tried and found to be ineffective, it’s natural to feel at a loss and to wonder if there’s any way to help this person. And if that’s what professionals are thinking, why do we find it so difficult to accept that the person with the psychological difficulties might think it too? And the natural continuation of that is that, if the pain is too great to bear, and if there appears no way to reduce it, why shouldn’t we have a conversation about the point at which life stops being worth living?
In the UK, we have to abide by legislation related to mental capacity. Essentially, if you’re deemed unable to make decisions about issues such as your health or finances, other people – usually health and social care staff – can step in and make them ‘in your best interests’. Crucially, this legislation accepts that people who do have the capacity to make decisions about themselves have the right to make ‘unwise’ decisions. With Dignitas now a viable option for those with the financial means, we seem, as a society to slowly be coming to terms with the right people with severe physical health problems have to die. Despite that, the moment someone with mental health problems says they want to die, we spring into action to stop them doing so. For, although the Mental Capacity Act also applies to people with mental health problems, it is trumped in almost every circumstance by the Mental Health Act. What this means is that a person with mental health problems has fewer rights to make decisions about their care – and the value of their life – than someone who is not subject to the Act, even if they are deemed to have capacity. Yet again, the disparity between physical and mental health is clear.
Now I can’t say for sure, but I would imagine that a significant number of people who decide they no longer want to live do so being well aware of the consequences of their actions. The question for professionals is this: is it ethical for us to extend someone’s life (or at least prevent them from ending it) when a) they are saying that life is too painful for it to be endured any longer and b) they have the capacity to make decisions about themselves? Our job is to make people’s live better; not condemn them to years of suffering. Our legislation doesn’t allow these kinds of conversations to take place and it certainly doesn’t allow us to support anyone to make decisions to die. And even as I write, I worry that readers of this will assume I am pro-assisted dying and that I believe people in distress have the right to end their lives without the interference of professionals. I don’t believe that, but I would be at pains to describe exactly what I do feel. I know that the assumption that anyone who wants to kill themselves must lack capacity troubles me – particularly when people who are suicidal often end up in psychiatric wards which, with the best will in the world, are rarely the sanctuary they should be. I know that for some people life can be terrible, and I understand the desire to end the emotional pain. But I also know that I struggle with the idea that someone is ‘beyond help’; that, essentially, ‘recovery’ is not an option. Part of that may be what it says about my profession, and me – that sometimes we are impotent; that we have to watch you continue to suffer because we just don’t know what to do to help – but some of it comes from a feeling that the loss of life is a tragedy – a waste of talent and potential.
One reason I suspect it’s so incredibly hard to accept someone’s right to choose to die is that we’re not looking at it dispassionately; we’re not conducting a cost-benefit analysis. How can you look at dispassionately? Mine is not a profession of pure science; it is one in which our work is bound up with emotion and human connections and a desire to help, but also, if we’re honest, a need to feel able to help. A significant element of working in mental health is in helping people find reasons to go on; to find reasons to stay alive. But for some people, those reasons may not exist, and we have to find a better way to discuss these issues frankly, without moralising and judgement, but with a keen eye on the very complex ethical questions tied up with them. In physical health, palliative care pathways are well-established and the debate around assisted dying is ongoing – it’s time those of us in mental health started to have similar conversations.
With thanks to @maddoggie2 for her contribution.
Dr. Masuma Rahim is a Clinical Psychologist and writer. You can follow her on Twitter @MasumaRahim. She blogs at https://masumarahim.wordpress.com/ and regularly contributes to The Guardian.
Editor’s note: The issue of suicide (assisted or otherwise) is clearly one that many people have strong views about. Please let us know what you think below. Masuma has kindly agreed to contribute to the discussion.
I’ll just use editors privilege to dive in first. Thanks Masuma for such a thoughtful piece.So many of the dilemmas around this issue are there. I suppose one thought in my head that I’m still puzzling over is the issue of why and how this issue gets to become the domain of mental health services? At point people do, tragically, kill themselves. I’m in no way resolved to this and think, as a society, we should always struggle perhaps. Looking at Holland and Belgium, It is important perhaps for some many people that this choice is legitimized (and practically assisted at points). It’s the case in physical health and it seems to be the way we are going in mental health. I, like you, still struggling with how I feel about that.
Thank you Dr Rahim for such a thought provoking and balanced contribution to this very difficult issue. As a clinical health psychologist I would personally support a person being able to make a decision to end their life if they have a terminal or severe and chronic physical health problem but I am not at all sure about people with mental health problems. My rationale for this may seem overly simplistic or naive but for mental health problems there always seems the possibility that changes in life circumstances and/or a pharmacological treatment may be able to have a positive impact–even just a small one–enough to render a lessening of symptoms and engender a sense of hope or even a glimmer of optimism, particularly for a young person. I also realise that psychological, social and pharmacological interventions certainly do not always work and the sense of pain, despair and desperation can become overwhelming, making it appear there is only one exit strategy to end the suffering. I do wonder if we were able to provide more caring living environments and more widely available (and flexible and creative) mental health services, would fewer people elect euthanasia? Not a question easily answered I realise.
I am not sure I agree that mental health problems are so different from physical health problems. Medicine is a field that has advanced over the past few years; currently ‘terminal or severe and chronic physical health’ problems might be ‘curable’ soon. I think that small glimmer of hope will always be there, regardless of whether it’s physical or mental health. In addition, who decides what ‘severe’ is, where do we draw the line?
Thanks for this, Paul. Whislt I think it’s often the case that there is potential for things to improve, I wonder how realistic that can feel, in an era of austerity, savage welfare cuts and under-resourcing of mental health systems. i agree entirely that an overhaul of systemic factors is necessary – is paramount, indeed. It feels very difficult to say ‘our systems are bad so we will supprt you to die because we don’t know how to fix them so your life is more bearable’, but perhaps even if our systems were vastly improved the pain of life would still be too great for some. But there are, of course, no easy answers.
Hi Masuma, this is a really sensitive post on an issue that our profession cannot avoid. I’m glad you took it on, and opened the debate. Your suggestion that we cannot have a “settled opinion” about such a continuously contentious issue really resonated with me.
Two thoughts:
1. I have a sort of meta-comment on the sensitivity of the debate itself. You say in the post “I worry that readers of this will assume I am pro-assisted dying”; that worry is telling as it indicates what is and is not implicitly sanctioned in the existing moral framework. In fact there may be a good moral case for being in favour of assisted dying under some circumstances, but we are obviously cautious about the newness of the territory. Caution is good, but it is also important for us to really think openly, especially if we suspect that the status quo is not good enough. Moral frameworks change.
2. I wonder what specific role clinical psychologists might play in this debate. We mainly “do” therapy, assessment and broader psychological interventions, so superficially we seem to be less well qualified than medical ethicists or lawyers in this area. But one contribution we might make is in reflecting on how this sort of momentous decision gets made. I am interested in what we might call the “countertransferential pull” that is sometimes (always?) involved in treatment decisions (i.e. the tendency for clinicians to do things out of strong but misguided feeling; like medicating to avoid their own feelings of hopelessness, or indeed failing to take positive risks as a result of their fear). That sort of pull is likely to be at important in decisions about assisted dying. Perhaps one avenue for exploration is trying to clarify the decision making process itself; identifying (as we do in therapy) when an action is taken in accordance with a person’s longitudinally considered wishes/values and when it is being influenced implicitly by factors like (e.g.) a clinician’s subjective sense of futility. We would not want assisted dying in mental health to be driven by the same medical desperation that spurred frontal lobotomies, but equally we would not want to rule the option out of court because we are more afraid of controversy than of anything else.
Huw
Astute as ever! Much of my clinical work is with people who have degenerative conditions and so this puts a different spin on things. I would not, of course, want a patient of mine, or one of their carers, to read this and think I was writing them off. I would also not want to give my colleagues that impression. But I think we need to start to break the taboo and work out what is the best – or perhaps the least-worst – option. There are no guarantees when it comes to decision like this, and that is frightening. I think acknowledging that fright – in all parties invovled – is important.
Many of the people I see talk of a wish to die. I am very open to having these conversations and i consider it a key part of my work. I think psychologists are well-placed to explore these issues very keenly, but I think it’s also difficult to separate the discussions, and our contributions, from our own personal positions – our histories, our values, our beliefs. I don’t know how we resolve that.
When people call a crisis service and are told on expression of suicial feelings “it’s your choice to kill yourself” and the phone is put down, some people are left feeling well why not then not offer the means to do so given botched attempts leaving people paralysed, organ or limb damaged can be a whole lot worse.
People with a diagnosis of PD are especially discriminated against with frankly quite casual attitudes towards their possible deaths, and even after they have died by suicide services have stated that it was because of their ‘PD’. Couldn’t possibly be because of unbearable trauma or because services having offered them nothing on top of a diagnosis which is the clinical term for ‘you are an arsehole’. The diagnosis alone makes some people feel suicidal.
Iatrogenic trauma is something to be considered, none more so than for people who self-harm. It’s revealing when you read the account of an ED nurse citing liaison “oh yes we know her she’ll probably die, don’t worry you’ve got your notes in order”.
Some lives ARE viewed as more worthy than others in services and lets not kid ourselves otherwise.
Some people have been forced to live via the high court when they (and their families) offer compelling testimony that they do not want yet another round of refeeding after many years of it.
Conversely I have seen friends effectively left to rot and die, begging for support, even begging for physical palliative care, but when it’s ‘psychiatric’ in origin no one wants to know.
Masuma highlights ‘malignant alienation’, rightly so, because MH practitioners find people who don’t ‘recover’, or have enduring experience almost unbearable. In this respect MH has a lot to learn from physical palliative care – and I’m not just referring to actual death.
I’m referring to the obligation to recover, which is every bit as damaging as bio-bio-bio. Rather than forcing people endlessly through the same interventions or giving up and discharging, how about offering some human support even at a low level. Sometimes when people are relieved of service obligations you can see some changes, and if you don’t, then at least that person hasnt been left with nothing.
Apart from service support, the quality of that, and unbearable distress the person cannot live with anymore, we also have to consider how neoliberal policies have pushed people to suicide, i.e. housing, welfare, shit working conditions. If you’re faced with impossible reviews, sanctions and constant uncertainty, I would say – you try living with that. Over the last 5 years I have listened to more mental health (ex) SU’s quietly and privately speak of where they will draw their line in the sand more than at any other time in my life. It’s been like a tsunami since the last general election and some people are (I’m glad to say) determined to fight to live no matter what this government throws at them, but I’m also aware that others if given the option would prefer (in their worst circumstances) to have access to euthansia because they feel they live in a country which wishes them not to exist.
My personal position is that I do support physican assisted euthanasia for all people (including people with no condition), but only if we have a very different MH system, where people access support of their choosing and are not forced to use or endure anything they do not want. Likewise, true choice of euthanasia with appropriate checks and balances can only be a decent choice if all preventable reasons have been addressed, so that means social equality. As a friend said recently, “Austerity ideology is about stealth genocide of ‘undesirables’. Evil fascism in the guise of ‘necessary economic policies’
I do sort of agree with Maddog here, the current state of services is so inadequate, there is no help except for what we manage to cobble together ourselves, and some of us are more able to do this than others. Place lack of services next to funding cuts and targeted governmental democide, poor housing, lack of money etc of course we want to die and of course we see no hope. The idea that we should be dead is so ingrained it is a common question in our benefits assessments. Mentals are not welcome here, yet we are also offered no help to exit which is a risky business potentially leaving us worse off than we already are if unsuccessful. I guess my agreement ends there. To me this is a social justice issue. I cannot contemplate euthanasia until everything has been done to right the wrongs that lead to people feeling so utterly without hope. Of course this is a pipe dream, its not just about supporting people who are suffering but righting the wrongs of a society that causes such suffering. I have little faith in that happening.
What world do you live in, where people who are suicidal are ‘assumed to lack capacity’ and end up in hospital?
More likely they get told to try harder and sent away without help.
Especially women with the BPD label.
Which you are thinking of when you wring your hands about how there is no hope, what can you doooooo to help those nasty difficult people who refuse to get better. Oh yes, let them die.
Thanks to Masuma for a thoughtful blog about a topic that urgently needs discussion. However, although I support euthanasia as a choice in terminal medical illness, I cannot agree that it is right to offer it to people with diagnosed ‘mental illness’. This isn’t because it’s hard for me to accept that I, or services in general, have failed to help. On the contrary, I have long believed that despite the staff’s best intentions, mental health services greatly increase and prolong people’s suffering overall. We don’t know what ‘treatment’ has been offered to the people who chose euthanasia, but I would be surprised if, along with all the personal and social impact of being diagnosed and thus having your suffering defined as individual deficit and ‘disorder’, it hadn’t added significantly to their distress. It is no solution to complete this process by facilitating suicide. Or as Peter Breggin put it in his blog on the topic, psychiatry must stop killing its victims.
http://www.madinamerica.com/2016/05/psychiatrists-playing-god/
I would also be surprised if the people who have been euthanised had been consistently, or ever, offered what is needed for healing from trauma, abuse and adversity– ie, accepting, witnessing, validating, help to process emotions and memories and create new narratives and meanings, and perhaps getting involved in social justice movements – ideally alongside others who have had similar experiences. Your blog seemed to be based on the assumption (correct me if I am wrong) that if professionals/services haven’t managed to help, then no one can help. In fact many of our most inspiring survivors are people who, after prolonged periods of desperation, found the help they needed outside the psychiatric system.
I am particularly horrified by some of the criteria for eligibility for euthanasia. The article states that two doctors must:
• be satisfied that the patient’s suffering is unbearable with no prospect of improvement;
• have informed the patient about his (sic) situation and his prognosis;
• have come to the conclusion, together with the patient, that there is no reasonable alternative in the patient’s situation
So, at the point at which someone is feeling most despairing, two ‘experts’ have stepped in to confirm their worst fears: ‘No, there are no more options. Yes, this suffering will last forever.’ I find this unforgivable. It is the job of MH professionals to hold hope for people who are (temporarily) not able to hope for themselves. There is no such thing as a ‘terminal’ condition in MH, as there may be in physical health. But is it any surprise that, given this damning verdict on their future, people have chosen to die?
This horrifying situation is a consequence of the false analogy of emotional distress as physical disease. Calls for ‘parity of esteem’ between mental and physical health problems raise serious questions (perhaps the subject for a future post) especially if interpreted as ‘treat them both the same.’ These are not the same kinds of problems and we cannot simply transfer policies from one to the other. The sooner we abandon this failed paradigm, the more clearly we will be able to see the profound ethical issues that are raised by euthanasia in mental distress.
Please can MH professionals allow us Survivors the right to determine if we want the choice of euthanasia to end our mental distress. Its paternalistic otherwise and just another example of professionals imposing their will on others.
If I want the option of dying with dignity, that is absolutely no one else’s business. It really is as simple as that!
“I would also be surprised if the people who have been euthanised had been consistently, or ever, offered what is needed for healing from trauma, abuse and adversity– ie, accepting, witnessing, validating, help to process emotions and memories and create new narratives and meanings, and perhaps getting involved in social justice movements – ideally alongside others who have had similar experiences.” I am someone who has been offered all these things, and I have to say that sometimes they are simply not enough; sometimes adversity and external economic pressures are just too overpowering; sometimes no amount of re-narrating and meaning making can alter the unbearable psycho-physical reality of distress. What is more social justice movements are not always a haven for those who are vulnerable: very often these spaces only allow certain narratives. I have been a strong, independent survivor/service refuser and valorised, I have also been a frightened, uncertain, financially desperate person who was shamed and disrespected for opting to engage with services. I agree that there are profound ethical issues around euthanasia but I don’t think that we are doing anyone any favours by reciting formulae for healing or romanticising social justice movements. The reality is that these alternatives are not accessible to many people; many of us are faced here and now with overwhelming financial and social pressures and overwhelming pain.
I’m fed up of MH professionals who assert that all mental distress is temporary & how no one must ever refer to terminal. I would say try telling that to friends & relatives of those who have died by suicide.
It’s a sore point for me having lost several friends by suicide (and I have been there myself), so saying mental distress must not be referred to as terminal insults their memory, and I’m listening every single day to the despair of people impacted by policies of which there really is no escape. Someone ‘holding hope’ in an office really doesn’t cut it. Referring to the unacceptability of terminality reminded me of Longdon’s very same assertion that we should not refer to it in this report:
http://mifellowship.org/sites/default/files/MIFellowship_Slade_Longden_Empirical%20evidence%20about%20mental%20illness_WEB_5_8_2015.pdf
It’s a pity that Longdon’s and Slade’s report didn’t do justice to social justice issues despite it being a stated interest.
“In the short term, one step towards reducing benefits-related stigma would be to allow disagreement with a diagnosis to be recorded on claim forms without impacting on entitlement”. That wouldn’t remotely help with a claim at all and reveals just how little they understand of current welfare policies because political prejudice which informs these policies are not dx specific, it’s about economic productivity. As Howard who commented above once said, “Austerity ideology is about stealth genocide of ‘undesirables’. Evil fascism in the guise of ‘necessary economic policies”.
Longdon & Slade further assert, “Duration: The idea of ‘permanent disability’ in a mental health context is toxic, and should not be used. For duration, a time criterion relating to a reasonable review period should be used, such as ‘expected to persist for at least one year”. Well maybe not for people having to go through horrendous reviews every week (in low paid work) and few months (out of work) which carry the risk of destitution. Furthermore people can and do have enduring experiences, some might view their experiences as a permanent feature, who is anyone to say people should not? I’ve been a voice hearer for over 30 years, when am I allowed to say that I reckon it’s probably a permanent feature?
I also agree with ‘I don’t know anymore’s point about romanticising social justice activism. It’s no picnic, people active individually and with groups such as MHRN and DPAC take great personal risks. They have experienced being spat at, threatened (including death threats) and threatened with having their social supports removed. It’s easy to glorify something when you’re not involved in it directly.
Entirely agree with Lucy.
‘It is the job of MH professionals to hold hope for people who are (temporarily) not able to hope for themselves.’ That.
I was actually in A&E the other day, feeling very suicidal. The liaison nurse said ‘You’ve been under services for years, you’ve tried everything’.
Actually I haven’t, was on interminable waiting list for psychotherapy, became ill, was told was too in crisis oh and am evil BPDer so offer removed and am only offered wonderful DBT but can’t even have that until I jump through their hoops and…you will get the idea.
What I have never been offered by services is listening, empathy, validation.
Those do heal. Yet they are so rare, both in NHS MH services and generally in society. And that is partly a social justice thing. Sorry, not my most coherent right now.
Some experience is not temporary, and that’s even celebrated and admired when it has a successful life story attached to it, I.e. HVM speakers. We tend to refer to something as temporary when its something we fear, don’t like, or perceive as negative.
A friend who didn’t want to be visible gave their permission to post their views here:
Collectively, our deaths are not a solution. Privately and personally, death is escape from oppression at a time when hope is absent.
I’d go further and say it’s not even an MH issue, per se. We are at a point now where significant numbers of people are unable to live (not just exist) in the society we are born into.
It’s tantamount to torture to force people to exist for 80 years in a system that doesn’t even tolerate them, never mind afford them the chance to flourish. Give people the choice to opt out, rather than force them to adopt the “every person for themselves” ethic that is necessary for “success” nowadays.
‘Dying with dignity’ and peacefully as a wish/right for people whose dignity, peace of mind and/or quality of life has essentially been robbed by psychiatrisation of course has my sure understanding/compassion…However, the problem though as I see this is to do with psychiatrisation at its root which alienates people and treats us in shocking ways sometimes (often) in the name of ‘help’…are people jumping or being pushed ?
I do not trust DSM psychiatry or this gov’t so would vote against state approved euthanasia for psychiatrised persons as things stand in the UK.
Your article implies that everything has been tried and failed in terms of help and this is simply not true for myself or all psychiatrised persons here in this country…
The delusions resident in the DSM classification system of us as people – of our humanity- are beginning to be confronted and seen through but it does seem to be too little too late…the solution is not to murder the victims of DSM psychiatrisation… “When you label me you negate me” (Kierkegaard)
It is analogous to what the plight of the monks in Tibet…how they have been driven to ‘self-immolate’ because of the imposition of the Chinese and so on…
Kind Regards. Katy
p.s ‘Imposition’ is a euphemism by the way for how the Chinese have treated the Tibetan people (including the monks)
There needs to be a way for people to opt out of this oppressive psychiatric and political system which does not necessitate opting out of life…
This writer will not step voluntarily into a Tory equivalent of a gas chamber or suggest that anyone else does so ! Remember it was the German shrinks who devised the means of killing disabled people and psychiatrised persons before Hitler’s rise and without his instruction or approval for ‘reasons’ not so dissimilar as cited in this article comrades…reading between the lines – or otherwise. (No offence meant to the author – this observation is probably on your blind side).
The UK is a very rich country…materially rich but increasingly spiritually poor…we will fight them on the b(r)eaches of our human rights !
It is not for me to say for another whether he or she wants or needs to die by suicide…state authorised assisted suicide for psychiatrised persons is something else altogether. The personal is political and so is DSM psychiatry.
Beyond help in what sense ? Some people cannot go to work but that does not equate to having a life ‘devoid of value, meaning or purpose’, does it ?
Kindness pays…psychiatrisation destroys.
Kind Regards, Katy
There are some people who prefer prison to grappling with our housing/welfare system. Think about that.
Yes, Maddog,..a good point…when will people wake up to the desperation this symbolises – face the fact that people who could have been helped if the promise of care in the community had not broken…what we have under Cameron and his cronies is SCARE in the community !
The welfare reforms and cruel austerity measures have shown themselves to be actually a form of persecution of physically disabled people and psychiatrised persons – and other ‘disadvantaged’ groups, too. Who in their right mind or cares about others, I wonder, would force people to apply for jobs they are not qualified to do – have no chance of getting ?…This is what has been happening for a while now and is really not okay on any level in my view and the latest I heard is that council housing, too, is under even greater threat…I think it was too polite of me to refer to this gov’t as Tories…under Cameron they are behaving more like neofascists – ‘neoliberalism’ is also too polite…I’ve met people, too, who told me they’d rather be in prison than the psych hospital in my borough which was not a secure unit, just an ordinary women’s ward !
Masuma, There are so many tributary elements to this important yet highly emotive question/topic for survivors and those of us who truly care about others to just post a short comment. My comments (above) are somewhat clumsy perhaps or partial – not exactly polite or feel inadequate since for me, anyway, having quite recently lost yet another friend to suicide who hanged herself at the age of 72 . ‘S’ was a very active, outgoing, politically aware person, a devoted mother and grand mother…There was simply nowhere for her to go to be looked after for what would have probably been only a few weeks when she was what she described as being ‘in a bad way’…This lady had already been further traumatised by her experience of ‘care’ in the local NHS psych hospital…we need crisis houses, proper long term psychotherapy for people who need and want this – amongst other ‘alternative’ or services which I will not list here but could /would do for survivors of psychiatry what the NHS does/has not…services, too, which are ‘survivor-led’. Those services would not cost much money to set up and run – I’m not a fan of not ‘pop psychology’ such as CBT which is I regard to be an insult to the degree/depth often of another human being’s truth/pain/trauma/distress…
Some psychiatrised persons who appear to ‘flourish’, even, as you put it have ‘tooled up’ as psychologists themselves have been lucky enough or been able to afford considerate attention for their distress. (Most people are drugged up and shut up – some are not even offered an appointment with an NHS psychologist).
I don’t ask that people become high flyers or flourish in those terms – peace of mind is paramount… “Happy is the man who is nothing” (Jiddu Krishnamurti)…Not being caused to feel even more insecure or – as a disabled person – forced to worry about basic things such as whether or not one will continue to receive benefits which were already assessed/promised as ‘indefinite’ based on their true need and rights as citizens in this country – or forced to worry whether or not they will lose their housing and so on as Maddog has already pointed to…These are practical things a person needs to survive (obviously). So , Masuma, in the light or rather darkness of these things, how is it possible to state everything has been offered, tried and failed by way of help…or further, that a person is ‘beyond help’ ? Or are you saying some people are ‘beyond help’ irrespective of everything else ? Could you please expand a little further upon this point? Frankly, this discussion about euthanasia raises alarm bells for this writer – even more SCARE in the community, really!…that a country which considers itself to be ‘civilised’ would consider euthanasia for people who mostly-speaking are actually not been assisted well enough to live? And/or say that every possible form of help has been tried and failed for anyone in such situations within a political climate and increasingly demolished social infrastructure such as here in the UK – together with the harsher truth that the cure by the medical model or DSM psycihatry has actually always been worse than the complaint for a whole number of psychiatrised persons – including myself …In fact I am a psychiatric torture survivor.
Kind Regards, Katy
(p.s. Apologies for typos…I wrote these comments directly into the box…it’s probably better to use Word and then copy and paste)
I’m a little late to this party, and I don’t know much other than my own experiences, but I hypothesize that euthanasia for mental health problems disquiets professionals a lot more than euthanasia for “physical” conditions because there’s greater uncertainty about how the brain (and mind) works relative to how other bodily systems work. Imagine someone with pancreatic cancer compared to someone with crippling PTSD. In the case of the person with pancreatic cancer, their physician probably has a better idea of what’s actually taking place inside their pancreas and the rest of their body that’s causing the cancer. They have a better idea of what treatments to try, what those treatments are doing, and when treatments have succeeded or failed. In other words, they have a better-defined model of pancreatic cancer and the pancreas compared to PTSD and the brain, respectively. For the patient with pancreatic cancer, the physicians will have a better picture of how and when to intervene with treatment. They will also be more certain compared to the PTSD patient that they have exhausted all available avenues for helping to make that patient well again.
Contrast the patient suffering from pancreatic cancer with the patient suffering from PTSD. The professionals treating the PTSD patient will have some general concept of what’s happening in the brain, but I think it’s uncontroversial to say that professionals know much more about how the pancreas works than the brain. There are some pretty fundamental questions about the brain that we still don’t have clear answers to. Delving into the brain and the mind involves wading at least partly into philosophical questions that will probably be debated for eons to come.
Perhaps when it comes to pancreatic cancer, we can say generally that certain cells in the pancreas have started to reproduce out of control and formed a tumor. (I don’t actually know how cancer works, which is why this is just a thought experiment!) The malignant cells must be removed from the body or killed or otherwise rendered inert. Physicians know what they can take certain actions to stop the cancer, like removing the pancreas and transplanting a different one. More importantly, the physician has an idea of the probability of their patient’s situation improving and when to accept that all of those avenues have been explored appropriately.
The professional treating the patient with PTSD has less certainty that they have exhausted all possibilities for treatment. They have less certainty that what they’re doing is an effective intervention. They have less certainty that they’re even accurately conceptualizing what is happening to their patient. The main way we know certain factors probably lead to a greater risk of mental health problems is through observational studies of people, controlling for a variety of other factors. But this doesn’t mean that we know why those factors are associated with mental health problems, just that they are. What we have are associations, but associations aren’t enough to assert causality. What we don’t have is what these factors are doing to our brains and mind to produce various mental states.
In effect, much research about the nature of mental health problems treats the brain as a black box. We measure what’s put into the box, some stuff happens inside the box (most of which we can’t see), and we measure what comes out of the box. In the meantime, professionals are supposed to devise treatments that work. So they adjust the inputs and measure the outputs to see if there are improvements. But this is mere trial and error if we don’t have a good idea of what’s happening inside the box. With pancreatic cancer, the main thing that changes is our ability to see inside the box. Sure, maybe it’s incomplete and hazy at times, but it’s still a clearer view than looking into the “brain” box.
It’s like trying to figure out what’s wrong with your car after it’s started billowing smoke. If you can open the hood and peer into the engine compartment, perhaps you can localize the the problem to a particular part or system. But if you can’t open the hood and see what’s causing the smoke, you might resort to things like throwing water on the car, because perhaps it’s on fire (not an unreasonable assumption in the presence of smoke). There’s always a chance this could work, but probably not. Eventually, you might figure out that waving a blanket at the car reduces the amount of smoke around the car. Of course, you’re not actually fixing the car, but because you can’t see into the engine, you don’t know what exactly to do. All you know is using the blanket definitely leads to less smoke than before. Getting rid of the smoke is admirable, but ultimately we’d like to have a working car, and our knowledge (or lack thereof) of the way the engine works is crucial for making the car function again.
So, finally, here’s my point. If the brain is a more opaque black box than, say, the black box for the pancreas, then professionals and practitioners who treat the mind (and therefore the brain) will have to resort to more trial and error to create treatments. This trial and error leaves a lot of room for uncertainty when it comes to the palette of treatment options available for people suffering from mental health problems. Did the professional do all they could possibly do to help the person with crippling PTSD? They certainly did all they knew to do, but maybe better treatments lurk around the corner if we only had a better understanding of the brain. I think it’s this persistent question of “What if?” that makes mental health professionals feel uncomfortable recommending euthanasia. Physicians treating pancreatic cancer still can’t be absolutely certain that they did everything in their power, but I suspect they can be more certain that they’ve exercised every option possible than the mental health professional would be. I can understand mental health professionals balking at euthanasia for their patients when all they see are inputs and outputs from the black box of the brain. When professionals aren’t sure what’s happening in the brain to produce certain “outputs” (e.g., crippling PTSD) in the first place, how can they be certain that those outputs won’t someday change for the better?
If my hypothesis is right, then caution probably is warranted until we can better understand how the brain and the mind work, particularly when it comes to mental health problems. Once professionals can peer a bit more into that black box, perhaps they’ll decide that there really is nothing they can do for a particular sufferer and that euthanasia would be a compassionate treatment. Or perhaps they’ll discover that there’s no such thing as “terminal” for people with mental health problems and that no one is truly lost. Until we learn more about the brain and the mind, the uncertainty will remain. But if I’m right, the uncertainty about treatments is a legitimate concern for professionals that goes beyond simply chalking up their discomfort to contemporary morals.
P.S. Forgive my overly simplistic analogies and examples. These I selected to illustrate my points, not necessarily to represent reality.
I find that hypothesis too technical and rather ‘clinical’, we could also be waiting for many more decades to come for advanced & progressive ‘treatments’. What happens to distressed people in the meantime? – life is getting harder not easier!
Im very happy for euthanasia for MH to become totally redundant because MH services have become far better at helping mentally distressed people. But my social & political context is NOW…
There is resistance to even entertain the idea that someone might have had enough (whether we agree or disagree), as though people with enduring mental distress (models/diagnosis/treatments aside) are not permitted to feel that way because they should wait or try harder. I find that deeply patronising and would suggest to MH professionals who take that view – live that persons existence before you decide that they should not have the option of a quick painless death if that is what they really want.
It goes without saying most of us want a very different MH system, one we actually want to use. Many of us (but I don’t think all) are equally commited to a very different social and political climate with a decent welfare state, good housing, decent working conditions, and inconsistent working ability or purely voluntary working ability all structurally supported and valued. These things together would help to remove many of the preventable reasons. Some of us feel that the latter should be taking priority over endless debates and turf wars over diagnosis/’treatment’ and the next brilliant unquestionable model/approach delivering nirvana.
A wise quote from Madelen Gemelle “interesting the lack of politicisation amongst people who experience normative ‘success’ within current political frameworks”, that’s relevant to this discussion. Those in secure and celebrated positions cannot speak for those who are not where life may be more tenuous.
Bravo!
I say this as someone who normally agrees with everything here but I must admit to being deeply shocked by some of the very black and white arguments presented here in the comments: (1) that those with a mental health diagnosis must NEVER be allowed the OPTION of assisted dying – I find this morally disgusting. Perhaps the numerous authors never meant this, and I certainly hope that they didn’t. Is someone with a mental health diagnosis who is also diagnosed with a terminal or degenerative illness not also entitled to be able to consider the option of assisted dying, especially given that we know that treatment for physical illnesses is typically not to the same standard as for everyone else? If you think not, I personally consider that a form of discrimination and a breach of human rights. Where everyone else is entitled to it then it has to be an option for individuals with mental health diagnoses, even if clinicians are ‘uncomfortable’ with it. Learn to be comfortable with your own discomfort; (2) there seems to be an assumption in many posts that someone with a mental health diagnosis who wishes to end their lives wishes to do so because they are in extreme distress/crisis. While that may in the majority of cases, it is not in all cases. Individuals with a mental health diagnosis can actually decide on a ‘rational suicide’ in the same way that other individuals do. Someone mentioned the issue of individuals having their own ‘lines in the sand’ – I think when one has experienced ongoing mental health difficulties such individuals are perhaps more likely to give thought to where their own personal ‘lines in the sand’ are in a similar way that some healthy adults also do. If anyone truly thinks that someone with a mental health diagnosis who is stable, coherent and rational, is not entitled to decide when they have had enough then you are also denying them other rights, such as living wills. The issue should be to create a society that stops everyone from having to consider where their ‘lines in the sand’ are.
I would ask each of you to seriously consider these possibilities. If you think that someone with a mental health diagnosis should never have the option of assisted dying or that they can never choose a ‘rational suicide’ then you are falling into the moralising trap that psychiatry has been accused of and undermining some of your own arguments that individuals with mental health diagnoses should be treated as individuals with their own unique lives. Tying up your argument with a bow of ‘social and culture’ factors is, in the end, no better than a bow of ‘disease’. In the end, you are still denying options and rights that everyone else has. The real incurable disease is our society.