It’s another cheery one for the summer holidays – Assisted Dying and Dementia!
There was an excellent article Dementia is our collective responsibility in last week’s Guardian written by Nicci Gerrard, an erudite and considered commentator in this field. The main thrust of the article was the idea that society needs to take ownership of dementia, understanding that it is now a common enough condition to be considered universal (her concluding statement; ‘If not you, someone very near you. If not now, soon.‘ says it all).
As is sometimes the case, the comments following an article such as this can prove to be more polarising and provocative than the original piece – after all, one purpose of journalism and sharing a viewpoint is to stimulate discussion and debate. This particular article presaged a tidal wave of comment regarding the option to end one’s life when given an ultimately terminal diagnosis of dementia, slightly missing the original point but channeling the worst fears of readers who dread the lack of control that dementia brings.
There is a view that Assisted Dying is the key to restoring this control. People cling to the notion that such a process would enable them to end their life prior to the indignities of incontinence, immobility and dis-inhibition. They hope to be able to make a rational, detached decision that; “Enough is enough – I am no longer myself and I no longer wish to burden this world with the thing that I have become.”
And indeed, that hope – the idea of ‘taking back control‘ (now where have I heard that before?) – is so pervasive that most would welcome such an option with open arms. I entirely understand these sentiments. It is a scenario I have considered myself, as has everyone with a family member unfortunate enough to have a progressive neurodegenerative disease. We have also all surely debated the ethics of aggressively prolonging life in the husk of the person we used to know. But, in these musings we often come up against the ‘How?’ and the even stickier wicket of ‘When?’
Assisted dying was initially legalised for extreme cases of intractable suffering (and I am not going to open that old can of worms about ‘suffering’ and dementia because it DOES MY HEAD IN). Where the law, the medical establishment and the wider society of a particular country could see and accept that an individual was suffering beyond all hope and redemption there seemed to be a case for allowing an end to it. So far so good. This all sounds reasonable, humane and morally robust.
However, one man’s intractable suffering may not be the same as another’s. There is now a situation where people with what is perceived to be ‘less intolerable suffering’ are not allowed to end their own lives. Their blighted existence, or the conditions they live with, have been deemed ‘tolerable’. Some of these people have argued that it is against their human rights to discriminate against them in this way. Who is The State to say what is bearable for an individual? Who makes that decision to say, “Yes, Mr Jones, on my checklist your particular scenario constitutes intractable suffering. Please proceed to the departure lounge” ?
Maybe instead we should leave it to the individual to decide for themselves whether their continued presence on the earth is worth preserving. But in some countries being “tired of life” is now considered sufficient indication to assist a person’s death. Do we really want to ease people off this mortal coil because they are bored by living? Could we not try and make their lives more fulfilling instead? And what about those people who have been persuaded that they are a burden or that they would be better off dead – should doctors really be the final arbiters in existential questions such as ‘what is my life worth’ and ‘what is the point in being alive any more’? We are scientists after all, not philosophers.
Another question (and this topic is full of them) is whether someone who is suicidal can really be deemed to have capacity? We detain people under the Mental Health Act if we perceive them to be a danger to themselves. We admit them for treatment, ‘section’ them, medicate them back into believing their life has meaning and worth. Isn’t saying ‘I want my life to be over’ openly admitting to being an active danger to oneself? Again we return to the cognitive ability to make these decisions which is so pertinent in dementia. Because making an active decision to end life requires mental capacity and dementia robs people of that very facility. An unhappy conundrum.
When do the scales tip from being cognitively sound and able to say ‘I want to die now‘ to becoming the individual we fear; the one who doesn’t even really understand what it means to be alive any more? And from a more practical point of view, when do we then sign that document, book the flight to Switzerland or take that lethal cocktail? If there was a magic time frame, a moment in the disease process where one could say with certainty ‘this is it, the end of my mind and personality, the end of my time as a functioning member of society. Now it has to stop,’ maybe assisted dying could work. But there isn’t.
So, does someone with a dementia diagnosis choose to go before they lose capacity, thereby potentially missing out on a few more years of good quality life spent with one’s family? Henk Blanken’s article for The Guardian’s Long Read My Death Is Not My Own is, as the name suggests a long read, but well worth it, not least because the author has full cognitive function but is facing a future where he may not. He is also a citizen of a country where assisted suicide is legal, well-supported, openly discussed and, some may say, actively encouraged. For him to suggest that there is a problem with the underlying principles allowing people with dementia to access assisted dying in those circumstances is significant. People who currently live in countries where assisted dying is illegal talk about how a change in the law would help those with intractable life limiting conditions to have a dignified death, but the vast majority of people who I see at the end of life do not have the capacity to take advantage of this process, even if it were legal. So what is the answer?
Personally I think we need to take a slightly different look at things. We are working on the assumption that there is only one way to actively intervene in our own destinies but in reality there are countless small decisions we can make to affect and effect our own demise. There is a difference between ending a life and simply not prolonging it.
Currently in the West there many things we do medically to extend life, in fact one could argue that we extend it unduly and against better judgement. We actively resist nature taking it’s course. Medics work on the principle that if something can be treated we should treat it or we should at least offer treatment. The offer is made in such a way that the patient and family assume proceeding with the treatment would be the right thing to do, consent forms are signed, tablets are taken, life is prolonged and lengthened, and on we go. I have see patients in nursing homes who have, what would appear to be, fairly poor quality of life that is preserved, nurtured and medically enhanced far beyond what would be considered ethical in an animal. The level and type of intervention varies but to give an example: Let’s say a person with advanced dementia reaches a point where they start choking on their food and a decision is made to artificially feed them. This may be considered the ‘safe’ thing to do, particularly if the options are presented to the family in the following terms: ‘Do you want to…
a) see your loved one choke on a piece of cabbage and possibly die of an aspiration pneumonia
b) have a simple procedure to allow sustenance through a tube in their tummy that will enable them to live for longer?’
The answer most families plump for is option b. The answer I would go for and hope that my family would choose for me (if my quality of life was sufficiently poor) is a. Pneumonia wasn’t called ‘Old Man’s Friend’ for nothing and two, three, four further years of being bed bound, at risk of pressure sores, unable to communicate, unable to even eat food any more, seems infinitely worse than a short bout of respiratory infection and a Cheerio Lads. (Note that artificial feeding for people with a good quality of life is often an excellent treatment option – I’m just using it as an example of a life-prolonging intervention that may not always be appropriately administered).
This planning around decision-making processes is perhaps easier for me because I’m a doctor. None of us can predict what is going to happen but I am at least aware that the medics don’t have all the answers and neither do they want all of the responsibility. I know that I am well within my rights to say; ‘I don’t want that treatment for myself’, or, ‘No. That treatment for my mother would not be appropriate at this point.’ I’m happy to take ownership of those decisions even if it brings about a slightly earlier death, maybe even because it brings about an earlier death. But people without a medical background simply aren’t aware that they are allowed to request a ceasefire in the battle for life, either for themselves or on behalf of a relative, so they take up the offer, they go along with the plan, they ignore the nagging voice of doubt because the nice GP or paramedic says that Dad needs to go into hospital and have intravenous antibiotics or he might die. They don’t say to themselves, would Dad actually prefer to die? Or if they do, they feel completely unable to voice that opinion out loud for fear of being cast out of normal society or arrested.
Wouldn’t it be easier if those who want to die, those who don’t want to live any longer and those who wouldn’t have wanted to live like this are not actively pushed along the path of existence any further than they need to be? There are many options for withdrawing intervention and allowing natural death to occur earlier; stopping preventative medication for one thing – why take statins to prevent heart disease, why take anticoagulants to prevent a stroke if actually the idea of a quick coronary or brain event would be just the terminal incident you’re after? There just needs to be a common sense approach and people need to be treated (or indeed, not treated) on an individual basis.
Obviously most people would wish to be kept comfortable and for their symptoms to be alleviated, so if you were in pain you would have the best analgesia, if you were nauseous the best anti-sickness medication etc. Palliative care in the UK is the envy of the world. We are great at looking after people who are dying, we’re just not very good at allowing them to tip into that category. Instead we let medicine force their bodies into a longevity that their brains can’t keep pace with.
Surely it is better to keep the lifesaving stuff for people who actively want to carry on living and simply withdraw it from those who don’t? As doctors our default position should not always be to aggressively investigate and manage frail people with a terminal illness – we don’t have a mandate for that. Instead we have a duty to do the best by our patients, to do the right thing. ‘Do no harm’ should have higher standing than ‘Keep alive at all costs’ – I think if the public knew that a more nuanced view would be taken by the professionals involved in their care at the end of life perhaps they wouldn’t fear it so much.
P.S. This is a controversial post and I am sure I have over-simplified in some areas, over-looked others and probably ridden roughshod across some readers’ strongly held beliefs. Like all my blog posts my intention is not to cause widespread offence and outrage but to make people think. However, I am fully expecting a backlash of biblical proportions….
5 thoughts on “Who decides enough is enough? – Why Dignitas and Dementia don’t mix”
I couldn’t agree more with everything you have said! My father, who had dementia, died of aspiration pneumonia last October and, sad as I was to lose him, that was preferable to him returning to his care home even thinner and weaker, perhaps completely bedridden, and with further infections no doubt to follow – he had somehow survived multiple chest and urinary infections and even sepsis earlier in the year. He was 83 and only the last couple of years had been really challenging, so he had a pretty good life. And I was grateful that he still knew who were all were at the point at which he died. Mum is 86 and also has dementia, and my hope for her is that she has a similar fate – a massive stroke and lights out would be ideal! Thanks for sharing your thoughts on this subject.
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Thanks Helen – it’s good to air these things and have an honest conversation – I worry that people with a new diagnosis (or even without a diagnosis) are afraid of a horrible drawn-out existence and undignified death and just wanted them to know that they can put the breaks on, either for themselves or loved ones, if they feel it is appropriate. So many of my patients say ‘but I didn’t want to go against what the doctor said’ or similar – they find the medical world very intimidating, which is understandable but then it’s so easy to get swept along by it.
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Thank you Divya – glad it helps