We Must Prioritise Improving Care

The Guardian is to be commended for having published these contributions. Rachel Clarke writes:

Christiaan Barnard, the surgeon who performed the world’s first heart transplant, vividly skewered the notion of patients “freely” choosing to have such dangerous, experimental surgery. They were, he wrote, like someone chased by a lion to the bank of a river filled with crocodiles, who decides to hurl themselves into the water: “For a dying man, it is not a difficult decision because he knows he is at the end … But you would never accept the odds if there were no lion.” Barnard captures a fundamental flaw in libertarianism that is horribly pertinent, whether we like it or not, to Kim Leadbeater’s choice at the end of life bill. The freedom to choose, so superficially seductive, can disguise all manner of coercion.

Proponents of assisted dying love to ridicule this concern as centring on a few “greedy relatives wanting to bump off Granny”. But it’s not. It’s something far uglier and more pervasive that involves you, me, every one of us. It’s that in Britain, in 2024, we permit such wretched underfunding of palliative care, social care and healthcare in general that people with terminal illnesses can be left to rot behind closed doors – out of sight, out of mind – by a society that claims to care.

The brutal truth is that only a tiny proportion of hospice and palliative care is NHS funded, the rest – unforgivably – relying on charity cake sales and sponsored marathons. So much for “from cradle to grave”. Rather than truly caring about dying people, then, we allow some of them to suffer avoidable pain, avoidable indignity, that could be averted by investment in threadbare services.

Economically speaking, assisting someone to die is, of course, far cheaper than ensuring they have the care to make their life worth living. So, sure, we can all nod at those glib assurances that a new law will rigorously safeguard patients from being driven into ending their life prematurely. But given what we already permit? Those “safeguards” are a comforting, yet deeply dishonest, delusion.

As Barnard implied, we must make sure that these patients faced with so few choices still have as many as we can give them – which means the best palliative and social care possible.

Lucy Webster writes:

I’ll be the first to hold my hands up and admit: I used to be in favour of assisted dying. Nondisabled people are able to end their lives, so it seemed only fair that disabled people should have that option too.

Then Covid happened and I promptly changed my mind. Governments everywhere, including in the UK, made decision after decision about whose lives were worth saving and whose weren’t. Media commentators openly questioned why lockdowns were needed to protect the “already vulnerable”. And, most horrifyingly, where assisted dying is concerned, reports proliferated of doctors and other healthcare professionals imposing “do not resuscitate” orders on some disabled people without their or their families’ consent. It was clear to me that neither the state nor society at large can be trusted with any additional powers to take disabled people’s lives.

It’s not just what happened during Covid that changed my mind. Proponents of the choice at the end of life bill argue that it is tightly drawn and only those with six months or less to live will be allowed to die – if they freely choose to. But evidence from Canada shows that narrow rules can be loosened over time. Then there is the issue of whether a disabled person can ever be said to be making a free choice to die when decent health and social care is so hard to come by. No safeguards can possibly protect against the feeling of being a burden on family, or the anguish of living in a society that is so hostile to disabled people.

MPs backing the bill say they want to ease suffering at the end of life. But where are the laws to improve access to palliative care or increase support for unpaid carers? Without these, introducing the assisted dying bill during an acute care crisis just feels like another way for the state to say our lives are worth less than others.

Gaby Hinsliff writes:

Of course I want the right to die, at a time of my choosing. Who doesn’t seek autonomy over their own body, their most intimate destiny? I want it like I want the vote, legal abortion, no to mean no; and, obviously, I want choice for those suffering horribly dragged-out ends. What troubles me is what my individual freedom to die means for others – especially the vulnerable and powerless, for whom “choice” in political contexts can prove illusory.

I worry less about relatives bumping off Granny than grannies concluding they’re more use dead than alive to struggling children, or domineering, abusive partners losing patience with nursing a spouse. But mostly I worry about mean-spirited future governments, balking at the cost of an ageing population, nudging us towards a choice that’s barely a choice at all between a threadbare NHS and a swift, cheap exit.

Already hospices rely on running charity shops for their funding: as the palliative care team explained when my father was dying, in his area that means only 15 hospice beds per 101,000-odd residents, so you can say you want one but nothing is guaranteed. It reminded me of the birth plans pregnant women painstakingly complete, an illusion of choice sometimes shattered by actually giving birth. My father’s care at home was superb, but sadly that isn’t universal. So choice must begin with properly funded, specialist palliative care and pain management that doesn’t actively frighten people off to Dignitas.

Under Kim Leadbeater’s thoughtful proposals, the right to die applies once doctors think you have less than six months to live, which sounds clear cut if, like me, you had always imagined terminal illness to reach a definitive “sorry, but there’s nothing more we can do” point. But so often it’s blurrier: a process of difficult choices – do you want this treatment that may buy more time, but with a rotten quality of life? – and confusion about whose advice to trust, which feels too delicate for any suspicion of added pressure. In some ways, I envy people who can back this bill: I want what they want. I’m just not sure it’s safe.

And Nims Obunge writes:

The debate on assisted dying in the UK must consider all perspectives, especially those of minority ethnic communities, including African, Caribbean and Asian backgrounds. For many of these communities, life is sacred, and taking one’s own life is considered taboo or shameful, regardless of the level of suffering. We believe life is God’s gift, and that the end of life is his decision – not ours. Family structures are built around providing care and support, ensuring loved ones are not left to suffer alone but are surrounded by their community until their natural death. Legalising assisted dying would challenge these deeply held values and disrupt the faith and cultural role of family in providing end-of-life care.

In the UK, systemic inequalities in healthcare, particularly affecting Black and minority ethnic communities, remain a significant issue. These groups often experience poorer access to quality healthcare and are disproportionately affected by poverty. Before legalising assisted dying, the government must address these root causes of suffering. Instead of offering death as a solution, efforts should be made to combat these inequalities and improve access to palliative care, enabling all individuals to live well rather than focus on dying well. Legalising assisted dying without fixing these disparities would only reinforce existing mistrust of public institutions, particularly healthcare, within these communities.

As a society, we struggle with the notion of suffering and often seek to eliminate it. However, when we cannot alleviate suffering, the solution should not be to end the sufferer’s life. We must instead co-suffer with those in pain, advocating for justice and healthcare reforms that ensure quality care for all. Lord Darzi’s review of the NHS and social care system highlighted a system already struggling to meet the needs of the population, especially minority ethnic groups. Further justifying assisted dying would be a disservice to a healthcare system meant to preserve life and possibly increase its failing of an already vulnerable group. We must prioritise improving care, rather than sanctioning premature death.