Which is worse? Being driven to end your life prematurely to avoid future suffering, or because the suffering you experience is unbearable now? Which form of preventable anguish is the most unacceptable? The kind we could avoid by giving patients the right to an assisted death, or the kind we could avoid with half-decent palliative care? Who suffers more?
The correct answer to these questions – and I write with the authority of two decades of medical training and practice, eight years of which have been exclusively in palliative medicine – is that I really, truly don’t know. Matters of dying – when, how, and by whose hand – are as ethically complex as they come. This week’s parliamentary debate of a petition demanding a change in the law – signed by more than 200,000 people and spearheaded by Esther Rantzen, who has terminal lung cancer – was, then, reassuringly measured, with thoughtful contributions from all sides. For if ever a topic demanded nuance and gravity, it is surely that of state-sanctioned killing, albeit on merciful grounds. What we absolutely don’t need, if we want to get this right, is for the debate around assisted dying to become yet another example of entrenched, polarised, pick-a-side-politics in which “pro” and “anti” camps shriek dogma in each other’s faces.
I am publicly neutral on the issue of assisted dying, primarily out of concern that being vocal could jeopardise my relationship of trust with my patients. My views on assisted dying are also complicated, conflicted and fluctuating – and I think it is helpful to be honest about this. What I can say, as a doctor who cares daily for people who are dying – and who is often present at the bedside when my patients take their final breath – is that only exceptionally rarely do I meet a patient for whom the ethics of assisted dying appear clear-cut. Here are two examples. One was a woman dying of cancer. Though relatively comfortable, she was too exhausted to raise her head from her bed and desperately longed for it all to be over. “Why do I live in a country where I can’t go now?” she whispered, too weak to talk. “Why do I have to suffer like this?” I had no answer. Her suffering seemed then, as it does now, like a staggeringly futile form of endurance, a cruel distortion of what life should be. I struggled internally to find a good reason why she should not be helped to die.
The second patient was bedbound with a painful and paralysing neurological condition. Having been told by various doctors that “nothing could be done”, she had stopped eating and drinking in order to end a life of intolerable anguish. But at our first consultation, I immediately realised that her pain, and even her condition, were both potentially treatable. She had simply never received any palliative, specialist medical or social care of any kind. “I’ve been left to rot,” she told me. And she was right. Out of sight, out of mind, she was another hidden victim of a failing NHS, a priority for precisely no one. This particular patient had been driven to contemplate suicide not by the suffering of her condition, but by society’s neglect. She hadn’t merely slipped through the cracks: she was enduring barbaric – and avoidable – misery thanks to woefully inadequate NHS and social care services.
This, for me, is a crunch point. Irrespective of one’s views on assisted dying, we can surely all agree that something is scandalously awry in British society when vulnerable people sometimes receive such inadequate care that they are driven to take their own lives? Proponents of assisted dying sometimes try to dismiss concerns that if the law were changed, disabled and vulnerable individuals might be coerced into prematurely ending their lives. But far from being a future, theoretical concern, it is real – and happening now. What coerces these patients is not some rightwing politician or avaricious family member, but the woeful inadequacy of their care.
Depressingly regularly these days, I encounter patients dying horrible deaths – lying soiled or screaming in pain in a hospital bed – because NHS services are falling apart. Last year in England, almost 14,000 people died in A&E while waiting more than 12 hours for a bed – a national scandal we appear content to ignore. As for the notion of a cradle-to-grave NHS, that comforting illusion is ripped apart by the fact that only 25-33% of hospice care is NHS-funded – leaving the majority of patients with terminal illnesses having to rely on the proceeds of charity fun runs and car boot sales. Clearly, in NHS terms, the dying are second-class citizens.
More widespread and insidious is the framing of the “ageing population” as an increasingly unaffordable burden for society. Matthew Parris, writing recently in the Times, took the bold step of explicitly linking that “burden” to assisted dying, arguing that it would be a good thing for society’s elderly and frail people to be faced with the question of whether their existence places unfair pressure on their family and society as a whole. The potential for assisted dying to be “urged on people”, he argues, would be a “healthy development”.
Is this really the society we want to inhabit? One in which the population has been carved up into two groups of people, those who deserve to live and those who are expendable? There are many compelling reasons to legalise assisted dying, but please, let’s not walk eyes wide shut into a world in which vulnerable patients “choose” to die because we’re not willing to fund the care that might make their lives worth living.
Rachel Clarke is a palliative care doctor and the author of Breathtaking: Inside the NHS in a Time of Pandemic
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