Currently, as I’m sure you know, assisted dying is banned in all forms throughout the British Isles and carries a potential maximum prison sentence of 14 years. Repeated attempts have been made to legalise assisted suicide, without success, but this week the Isle of Man, a self governing UK Crown dependency, has come a step closer to becoming the first part of our islands to legalise it for terminally ill and mentally competent people. And Scotland is hard on its heels with the formal introduction of a new bill to their parliament on 27 March.
Do Not Resuscitate orders
Disability and Assisted Dying
The topic of a good death just won’t go away, will it?! But this week there’s tangible progress to report.
But of course, as ever, these attempts to change long established laws in such a sensitive and nuanced area, prompt strong opposition from some parts of the medical profession, disability and human rights groups, and religious communities, with concerns that it might put pressure on vulnerable people to end their lives for fear of being a financial, emotional, or care burden on others, compromise the ethical standards of the medical profession, and create fear and mistrust among the patient population.
So, I was fascinated by a BBC documentary, Better off Dead?, which devoted an hour to the topic on Tuesday this week (14 May, 9pm). It was written and presented by actor and disability rights activist, Liz Carr, who is herself disabled and in a wheelchair. A recent poll found that 73% of Britons support doctor-assisted suicide for the terminally ill, but Liz and many other disabled people fear their lives will be put at risk if it is legalised. She says:
Too many disabled people will have had the experience of someone, often a complete stranger, telling them, ‘if I was like you, I’d rather be dead’.
But she says with a grin, disabled people are the toughest people out there! To which her friend adds, ‘Cockroaches! Evolved for survival!’ And Liz certainly comes across as a feisty, articulate, and knowledgeable campaigner.
The pandemic cast a bright light on the inequalities in care, and the practice of ‘Do Not Resuscitate’ orders being placed on the medical notes of older or disabled patients, without their consent, also implies a low value is attributed to their lives. This documentary challenges the assumptions behind these actions, and shines a light on the many grey areas in this often one-sided debate. Seen through the eyes of those being discriminated against, it packs a hard punch.
In the course of making the programme, Liz also travelled to Canada to explore the repercussions of some of the most permissive euthanasia laws in the world, laws which include people who are disabled, not just the terminally ill. For me, seeing the illustrated information pack for children explaining what MAID (Medical Assistance in Dying) means in simple language, chilled the blood.
A palliative care specialist drew attention to the paucity of such care, and her cry to protect the vulnerable struck a particularly deep cord when we had this vivid image of assorted people with disabilities in front of us. Why don’t we hear more about the serious underfunding of this service, I wonder? Is this where we should be devoting our energies?
Even if there are to be changes in the UK law – which seems highly probable, they won’t be 100% safe. They can’t be. But the more practical question is: How safe is acceptable?
Back to my pile of books on the subject which I’m ploughing through systematically. But now with this niggle about disabled people’s perspective a much bigger alarm call.
Do Not Resuscitate
You’d have to be an ostrich on an uninhabited desert island not to be aware that this week marked the Diamond Jubilee of the Queen’s accession to the throne. Whatever you think of the institution of monarchy, I’m sure you would agree she is a truly remarkable woman. Well into her eighties she shows a stamina and strength of character and purpose few of her age group could or would attempt to emulate. Her timetables are punishing. Her application to the duties and responsibilities of her position, unflagging. She seems to make few concessions to the years. No other 86 year old of my acquaintance would stand for hours on a barge on a cold wet day and stay up all hours listening to deafening music and smile and chat relentlessly to perfect strangers hour after hour and … well, you get my drift.
But she is human. She is elderly. A jolt went through the nation recently when her husband, Prince Philip, aged 90, showed his frailty, actually missing royal Christmas festivities because he required cardiac surgery. Serious stuff. And now this week he’s in hospital missing the Diamond Jubilee celebrations because of a bladder infection. Not of itself serious, but obviously someone somewhere has concerns.
It made me think … What if he or the Queen suffered a sudden medical emergency necessitating resuscitation? What would be the morally right course of action? What would they themselves choose? Would their preferences prevail?
This week we’ve learned that an alarming number of elderly people are being resuscitated against their wishes. Hey, never mind the royals, I have a vested interest in this. A few years ago I wrote my own advanced directive spelling out the circumstances in which I wish to be allowed to die with dignity. No dragging me back for a life of pain and suffering and degradation, thank you very much. I had the said declaration medically witnessed. I filed it carefully and clearly. I had deep and meaningful discussion with my nearest and dearest, so that they are fully informed of my intentions and preferences, and committed to ensuring they are respected.
Imagine if some enthusiastic (or maybe insecure) junior doctor somewhere decided he would overrule all that careful thinking and discussion and do his own thing. Boy, would I be mad! What gives him the right to know better than I what is best for me?
So the National Confidential Enquiry into Patient Outcome and Death Review, looking into the care given to 585 acutely-ill patients (average age 77 years) who ended up having a cardiac arrest, made sobering reading this week. The watchdog concluded that ‘cardiopulmonary resuscitation (CPR) had wrongly become the default setting.‘ They recommended that sensible assessment as to the necessity for resuscitation should become standard. Well, hurrah. Sensible indeed.
In the wake of these revelations, naturally lots of people have stories to tell of misapplied zeal, or woeful lack of monitoring or commonsense. And of course, their accounts also remind us that experience and preferences vary greatly.
My own father had a heart attack very publicly on a bus when aged 75, on his way to visit a beautiful garden. Only minutes into the journey he observed that it was going to be a lovely day and then slumped against my mother, dead, without fuss or drama. For him, perfect. But my mother had to stand on one side while he was pummelled vigorously. In vain. The paramedics had no choice but to attempt to revive him, they said.
In her case, as soon as she went into residential care, we made it absolutely clear to all relevant parties that she did not want heroic efforts to resuscitate her, with appropriate signed-and-sealed documentation in place. The day she put her name to her advanced declaration in the presence of two independent witnesses, the family were going to a funeral and the room was full of black-clad sombre people, which gave it all an unintended but rather theatrical ambience! When her last illness took hold, she was past acting autonomously, but we were able to reinforce that considered and sustained choice with the caring team. She died with peace and dignity aged 90, unmolested.I devoutly hope that this latest public report will spark sensible discussion and lead to more sensitive and appropriate practice. We only die once.
And of course I wish His Highness a speedy and complete recovery.