The Right to Die, and Justice Hayden's Decision in MSP [2020]
I discuss the case of Barnsley Hospital NHS Foundation Trust v MSP [2020] here- Bailii linked at end of post. This post is not an academic article, and I am still a (very) baby lawyer. I await possible discussion of this case to the full extent: this post will be fully accessible to laypeople (normal people!), and is not intended for academic purposes as I don’t go into depth of the law behind Justice Hayden’s decision, though it may pass as some form of immature case note! This will also likely be extremely triggering for people who live with depression, thoughts of suicide or long term health conditions, so please continue with caution. Any criticism here is not aimed at the individual or his family who sought these choices: they are completely understandable given his wishes and the circumstances of his illness.
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As I have written about before, life with disability is hard.
In fact, my last post, ‘Dating with Disability’ addresses this directly: the stigma of stoma bags infiltrates love lives, and your body is forever changed.
As I have written about before, it’s easy to fall into a depressive hole when living life with long term conditions: I am a supporter of assisted suicide, and I think I would want control over my death. I don’t want to suffer from the horrendous symptoms my disabilities could cause at the end of my life. This is not an easy way out- I am resilient as all hell for putting up with things as they are now, and anybody living with disability regardless of their decisions on the end of their life is strong until the very end.
Saying that, my life is prolonged by the artificial nutrition I rely on- my stomach completely gave up on me, I cannot eat normally. If I wanted to die, surely all I would need to do was to refuse my feed and water. Done deal, Right? Well, what if I end up in a coma or otherwise incapacitated and someone has to make my decision on my behalf?
As a supporter of assisted suicide, I also support the checks and balances in place to ensure that people are not ending their lives prematurely: in that, the illness must limit your life significantly, and you must be in the right frame of mind to make such a drastic decision. When I was diagnosed with Gastroparesis, I was not in the right mental state to make any decisions on whether I should live or die. In fact, I told my doctors that ‘if natural selection had its way I would be wiped out’. My illness had destroyed me, as illness does, and being told how severe my illness was, the measures that we would likely have to take, made it even worse. Despite my views on assisted suicide, from my understanding, none of my health conditions put me into the qualifying criteria for euthanasia as it stands in other jurisdictions or a trip to Switzerland: I am not terminal.
Imagine my shock then, and the shock of many others in the Crohn’s and Colitis UK Forum when “Man, 34, wins right to die because colostomy bag would ruin love life” was published in the news today. It received 51 sad reacts before the moderators closed comments, in fact. So I did what I do at university: went onto Bailii and read the judgement provided by Justice Hayden.
To clarify the headline: the case is not that of euthanasia, as you may assume. It’s a refusal to consent and withdrawal of treatment- meaning that he’s allowed to refuse ventilation and nutrition despite currently being incapable of consenting. He’s in the ICU seriously ill, not with Covid, but after surgical complications. Removing the ventilator and nutrition is not the same as killing him with an injection or such like, it is a slow and likely painful method of starvation and a struggle to breathe without assistance. Withdrawal of treatment is closer to a suicide than an assisted suicide.
As the out of hours Judge, Justice Hayden received an application from the hospital on whether they should continue to provide intensive care or withdraw all care except palliative in the case of a 34-year-old man who in February suffered a prolapse of his five-month-old stoma. This is an extremely painful complication of stoma surgery, and ‘very distressed’ the man- as these things understandably do. He ‘utterly loathed’ life with his stoma, and it was reversed on the 14th May 2020. A few days later, he returned to hospital with sepsis, another complication of any surgical procedure. He had a bowel obstruction and the consultant surgeon in charge of his care said his condition was life threatening- he would need another stoma fitted immediately.
Interestingly, he consented to the new stoma, and this was formed on the 27th May. However, this was contrary to his previous rejection of stoma surgeries which he expressed to three consultants and family members, and his acceptance was described as a “seismic change in his thinking”. He had also written up a detailed but simple Advance Directive in February which he had copied to his mother, father and step-sister- the only three people outside of a hospital aware of his stoma. His Advance Directive expressly stated, among other things, that he did not want “the formation of a stoma through an ileostomy, colostomy, urostomy or similar which is expected to be permanent or with likelihood of reversal of 50% or under”. He is also haunted by terrifying dreams he had experienced while in ICU in 2013, and he had told his mother he never wanted to experience these again. Justice Hayden used this to show how close and loving the relationship between the two is. This is not a man who lives without a support network, but evidence that “the intrusive nature of ICU can never be underestimated”. Justice Hayden has also emphasised just how much thought and time has gone into this decision- his directive even specified music to be played as he passes away and at his funeral, it has not just been a comment on the fly in response to being told he needed major surgery again.
As all of us with disability are, he is not just his condition: he is highly intelligent, an A* student at school, hard-working and respected across school, university and the workplace. He has a ‘voracious’ interest in the world, politics and affairs. He was meticulous about his appearance prior to being ill, and recently bought himself a pair of designer sunglasses, Justice Hayden believes in an attempt to hide his health and to present himself as confident and active. However, he “had his own demons”, at university he self-harmed, and was diagnosed as bi-polar, “though this is now managed well with anti-depressant medication”. He was popular with girls, and had ‘a great many’ girlfriends, but after his stoma surgery, stopped attempting to find relationships, drank gin in excess, and smoked heavily in front of his parents.
After calling MSP a good-looking lad, his mother corrected Justice Hayden: “he is a grown man, intelligent, articulate, a graduate and a respected professional.” This is how we should consider every person living with disability, as more than their condition, and Baroness Hale has also expressed that we must be seen as “individuals with our own values, likes and dislikes, and to consider [the patient’s] best interests in a holistic way.” [Aintree Hospital NHS Trust v James [2013] UKSC 67]. This is entirely in line with my own belief surrounding refusing treatment and assisted dying: our decision should be paramount, if we are capable of making that decision.
However, I am worried about MSP’s mental state- losing interest in relationships, yourself, smoking and drinking in excess are all indicative of depression, and with diagnosed bi-polar disorder this is something that I hope was considered. It says his condition was well managed by anti-depressants, however experiencing an acute flare of an illness, or a prolapse in your stoma, may cause you to forget to take your medication. I certainly have days where I forget my most important single immunosuppressive tablet out of the twenty or so a day, or even forget to connect my feed before bed. Additionally, medication absorption mainly happens in the intestines. Having a stoma may affect absorption of medication. It is curious that he wrote his Advance Directive in February, the month he experienced the prolapse and must have been feeling absolutely rotten. His father believes that if he is to regain consciousness and realise he has been utilising Total Parental Nutrition (TPN) and his stoma is not likely to be reversed he would kill himself. I am not a mental health professional, but this is certainly indicative of an individual who feels depressed about needing disability aids, and shows that there is a risk to himself because of this. Is it then correct to say that the anti-depressants are still effective in treating the bi-polar? The judgement makes only one reference to bipolar, none to mental health, but four to relationships, and plenty to good looks.
I worry that the checks and balances- mental health evaluations- that would be followed if, say I took a trip to Dignitas, have been overridden here by the argument of MSP’s ‘best interests’ because his relationships have eroded. Moreso, they could not be carried out because the patient isn't conscious. And though I do not agree with the newspapers that this is about vanity, has more focus been put on this than a diagnosed lifelong mental illness? I also worry: did he accept this second stoma surgery despite his previous comments because he wanted the chance to live again? It is still achievable for a clearly capable person to have a happy career with disability aids once they are adjusted to the life change. From the evidence, it doesn’t seem anybody has spoken to MSP after he said yes to the surgery- it seems he’s been incapacitated since, and they’ve assumed that the acceptance was either in line with the “likelihood of reversal” comment on his Advance Directive, or fully against his previous wishes. I worry that his wishes had indeed changed drastically but because he was so clear on his previous wishes this has not even entered the discussion- and so maybe this decision of the court was not in fact, in his best interests now, but the best interests of the man he was a few months ago.
On one final point, I can certainly comment. In closing his judgement, Justice Hayden mentions “MSP would unhesitatingly reject the striking artificiality of parental nutrition”, and although my nutrition is enteral, it is still unnatural, and I have friends on TPN. None of us would claim that we enjoy this part of our lives: I have cried looking at my ‘stupid’ mini-drip stand, chucked my feeding backpack across the room because I hate carrying it. This is made so much worse when the nutrition is injected into you and put straight to your heart. However, the TPN keeps my friends here to experience the joys of life- they may not have as active sexual lifestyles, they may have lost relationships, but they, as I, are still here to enjoy love and laughter, film and culture. It is this resilience and positivity that I am so glad to be surrounded by, because all of us have fallen into depressive slumps, and all of us are so affected by our mental health. I fear that MSP, by keeping his circle who were aware of his stoma small, fell into that deep hole and didn’t have anyone who had experienced the same to help pull him out. This is why charities, support groups, and friends are so important.
MSP will not die when he is taken off of his ventilator, but his nutrition and fluids will be removed too, which will likely kill him just as refusing food and water would. He cannot not be named until 3 months after he dies. When that time comes, I’m sure this will be long out of the news cycle. This decision is the right one for his interests and that of his family, or so it seems, as it prevents the pain of MSP waking up to this drastic change of lifestyle yet again. His father now does not have to worry if he will be at risk of suicide.
MSP’s autonomy is the key issue, and it is in his ‘best interests’ [a term we throw around in the law in most matters], and the interests of his autonomy, that he should refuse treatment. This is not a groundbreaking decision in that anybody who has capacity can refuse treatment, such as medications or food & drink. I am glad that this is yet another case to add to the growing bank of case law that supports this fundamental human decision, but I am also saddened that MSP as the whole person he was- an intelligent graduate, who enjoyed beauty and finer things in life- being more than his condition, felt he cannot live with his (albeit absolutely debilitating) disability. This is the unfortunate reality for so many disabled people, including myself at times, and it is such a waste of life, of things we could give to the world but have been stopped by our conditions. This is certainly not aided by the relentless stigma following not only disability, but 'disgusting' life-saving aids such as stomas or catheters. Remember to treat people with kindness, the grieving process with illness is not easy, and it does have a huge effect on your mental health too. I look forward to academic comments on this case, and despite 'just' being a capacity to refuse consent case, I am so interested to see if this has an effect on how we view euthanasia and assisted dying for conditions that aren’t necessarily terminal, both in the legal sphere and the real world.
Leanne-Sydonie
Bailii- https://www.bailii.org/ew/cases/EWCOP/2020/26.html
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