I really see a plea for assisted dying. But the horrific state of the NHS makes me wonder if this is the best idea | Rachel Clarke
Wwhat’s worse? Are you driven to end your life prematurely to prevent future suffering, or because the suffering you are experiencing now is unbearable? Which form of avoidable fear is the most unacceptable? The kind we could avoid by giving patients the right to assisted death, or the kind we could avoid with half-decent palliative care? Who suffers from it more?
The correct answer to these questions – and I write this with the authority of twenty years of medical training and practice, eight of them exclusively in palliative medicine – is that I really, really don’t know. Issues of dying – when, how and by whose hand – are as ethically complex as they can be. This week’s parliamentary debate on a petition demanding a change in the law – signed by more than 200,000 people and led by Esther Rantzen, who has terminal lung cancer – was then reassuringly measured, with thoughtful contributions from all sides. Because if there was ever a subject that requires nuance and seriousness, it is that of state-sanctioned murder, albeit on compassionate grounds. What we absolutely don’t need if we want to get this right is for the assisted dying debate to become yet another example of entrenched, polarized, picky politics in which ‘pro’ and ‘anti’ camps shout dogma in each other’s faces.
I remain publicly neutral on the issue of assisted dying, primarily out of concern that speaking out could jeopardize my relationship of trust with my patients. My views on assisted dying are also complicated, contradictory and fluctuating – and I think it’s useful to be honest about this. What I can say, as a physician who cares for people who are dying every day – and who is often present at the bedside as my patients draw their last breaths – is that it is exceptionally rare that I encounter a patient for whom the ethics of assisted dying seem clear. . Here are two examples. One was a woman who died of cancer. Although she felt relatively comfortable, she was too exhausted to lift her head from her bed and desperately wanted it all to be over. “Why do I live in a country that I can’t go to right now?” she whispered, too weak to speak. “Why do I have to suffer like this?” I had no answer. Her suffering seemed then, as now, a stunningly futile form of endurance, a cruel distortion of what life should be. I struggled internally to find a good reason why she shouldn’t be helped to die.
The second patient was bedridden with a painful and crippling neurological condition. After being told by several doctors that “there was nothing that could be done,” she had stopped eating and drinking to end a life of excruciating pain. But during our first consultation, I immediately realized that her pain, and even her condition, were both potentially treatable. She had simply never received any form of palliative, specialist medical or social care. “I’ve been left to rot,” she told me. And she was right. Out of sight, out of mind, she was yet another hidden victim of a failing NHS, a priority for no one. This particular patient had been pushed to consider suicide not by the suffering of her condition, but by the neglect by society. Not only had she slipped through the cracks: she had to endure barbaric (and avoidable) misery thanks to woefully inadequate NHS and social services.
This is a sticking point for me. Regardless of one’s views on assisted dying, can’t we all agree that there is something scandalously wrong in British society when vulnerable people are sometimes given such inadequate care that they are pushed to take their own lives? Supporters of assisted dying sometimes try to allay concerns that if the law were changed, disabled and vulnerable people could be forced to end their lives prematurely. But far from being a future, theoretical concern, it is real – and happening now. What compels these patients is not a right-wing politician or a greedy family member, but the woeful inadequacy of their care.
These days I depressingly regularly encounter patients dying horrible deaths – lying dirty or screaming in pain in a hospital bed – because NHS services are falling apart. Last year, almost 14,000 people in England died in A&E while waiting more than 12 hours for a bed – a national scandal we seem keen to ignore. As for the idea of a cradle-to-grave NHS, this comforting illusion is shattered by the fact that only 25 to 33% of hospice care is funded by the NHS – leaving the majority of patients with terminal illness dependent on proceeds from charity activities and car boot sales. In terms of the NHS, the dying are clearly second-class citizens.
More widespread and insidious is the idea that the ‘aging population’ is becoming an increasingly unaffordable burden on society. Matthew Parris, recently wrote in the Times, took the courageous step of explicitly linking that ‘burden’ to assisted dying, arguing that it would be a good thing if society’s elderly and vulnerable people were confronted with the question of whether their existence is an unfair puts pressure on their family and society as a whole. The possibility of assisted dying “being pushed towards people”, he argues, would be a “healthy development”.
Is this really the society we want to live in? One in which the population is divided into two groups of people: those who deserve to live and those who are expendable? There are many compelling reasons to legalize assisted dying, but please let us not walk with our eyes wide open in a world where vulnerable patients ‘choose’ to die because we are unwilling to fund the care that could make their lives worth living to make.