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Uwhich is worse? Forced to end your life prematurely to avoid future suffering, or because the suffering you are experiencing is unbearable now? Which form of preventable suffering is most unacceptable? The kind we could avoid by giving patients the right to assisted dying, 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, really don’t know. The questions of dying—when, how, and by whose hand—are as ethically complex as they come. Parliamentary debate this week 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 by thoughtful input from all sides. For if ever a subject called for nuance and seriousness, it is surely that of state-sanctioned murder, albeit for merciful reasons. What we absolutely do not need, if we are to get this right, is for the assisted dying debate to become yet another example of entrenched, polarized, electoral politics in which the pro and con camps shout one-on-one dogma another in the faces.
I am publicly neutral on the issue of assisted dying, primarily out of concern that my openness might jeopardize my trusting relationship with my patients. My views on assisted dying are also complex, controversial and variable – and I think it’s helpful to be honest about that. What I can say, as a physician who cares for dying people on a daily basis—and who is often present at the bedside when my patients take their last breath—is that it is exceedingly rare that I meet a patient for whom the ethics of assisted dying seem clearly defined . Here are two examples. One was a woman dying of cancer. Although relatively comfortable, she was too exhausted to lift her head from her bed and was desperate for it to be over. “Why do I live in a country I can’t go to now?” she whispered, too weak to speak. “Why should I suffer like this?” I had no answer. Her suffering seemed then, as it does now, a wonderfully 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 paralyzing neurological condition. After being told by various doctors that “nothing could be done”, she stopped eating and drinking to end her life in excruciating agony. But at our first consultation, I immediately knew that her pain and even her condition were potentially treatable. She simply never received any kind of palliative, specialist medical or social care. “I was left to rot,” she told me. And she was right. Out of sight, out of mind, she was another hidden victim of failure NHS, a priority for exactly no one. This particular patient was driven to consider suicide no from the suffering of her condition, but from the neglect of society. She hadn’t just slipped through the cracks: she was enduring barbaric – and avoidable – misery thanks to the woefully inadequate NHS and social care.
For me, this is a key point. Regardless of one’s views on assisted dying, surely we can agree that something is outrageously wrong in British society when vulnerable people are sometimes given such inadequate care that they are forced to take their own lives? Proponents of assisted dying sometimes try to dismiss concerns that if the law is 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 forces these patients is not some right-wing politician or greedy family member, but the abject inadequacy of their care.
With depressing regularity these days, I come across patients dying horrible deaths – lying dirty or screaming in pain in a hospital bed – because NHS services are falling apart. Last year in England almost 14,000 people died in AG while waiting more than 12 hours for a bed – a national scandal we seem content to ignore. As for the idea of a cradle-to-grave NHS, this comforting illusion is shattered by the fact that only 25-33% of hospice care is funded by the NHS – leaving the majority of terminally ill patients to rely on proceeds from charity entertainment and car boot sales. It is clear that from the perspective of the NHS the dying are second class citizens.
More widespread and insidious is the framing of the “aging population” as an increasingly unaffordable burden on society. Matthew Parris, wrote recently in the Times, took the bold step of explicitly linking this “burden” to assisted dying, arguing that it would be good for the elderly and frail in society to be confronted with the question of whether their existence places an unfair strain on their family and society as a whole. The potential for assisted dying to be “encouraged by people”, he argued, would be a “healthy development”.
Is this really the society we want to live in? One where the population is divided into two groups of people, those who deserve to live and those who are useless? There are many compelling reasons to legalize assisted dying, but please, let’s not walk blindfolded into a world where vulnerable patients “choose” to die because we are unwilling to fund the care that can make their lives worth living.
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