Rachel Clarke: If we truly cared about those dying, palliative care would be properly funded Rachel Clarke 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. Rachel Clarke is a palliative care doctor and the author of Breathtaking: Inside the NHS in a Time of Pandemic Lucy Webster: The state cannot be trusted with the power to take a disabled person’s life Lucy Webster 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. Lucy Webster is a political journalist and the author of The View from Down Here: Life As a Young Disabled Woman Gaby Hinsliff: I want people to have a dignified death, but I’m not sure this is the safe way to do it Gaby Hinsliff 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. Gaby Hinsliff is a Guardian columnist Maureen Anderson: My Christian parents would not agree with me, but I want the right to choose Maureen Anderson This bill will be very divisive if it becomes law – particularly in communities where faith and religion are central to the culture. My parents were Christians from the Caribbean, and their faith meant as much to them as their family. They died in 2020 within one month of each other, each with their quality of life much reduced before their death. Yet I know the assisted dying bill would not have been entertained by either of them. My father was confined to his bed, partially sighted, hearing impaired (unless it was something he wanted to hear), eager for “his number to be called”, knowing that the only way to meet his Father in Heaven was through death – yet I know he would not have wanted the process to be hastened. My mother, even with her dignity taken from her in the residential home and in hospital, and despite her being unable to speak at the end of her life, I can say without a doubt would have felt the same. But the next generation may feel differently – just as cremations were historically not common in British Caribbean communities, but that is starting to change. Of course, the safeguards will be crucial: having two independent doctors agree, and strict criteria for who is eligible. Also key is making sure everyone has a say in how they are looked after, and that they are afforded a dignified death, whether assisted or not. It’s easy to assume there is a standard of dying in residential and medical facilities, but there is not – Hospice UK and its Dying Matters campaign have done a great job in making the public aware of their options. But in the end, who best to make the decision to have an assisted and dignified death than the person suffering? I would like to have the option to make that choice. My parents are no longer here to berate or pray for me to change my mind, and I would not want my family to have to be full-time carers. I would have a “going away party”. We should each be able to live our lives well, and die with dignity. Maureen Anderson is a parenting consultant and contributed to the collection Black Grief and Healing Charlie Corke: I worked on an assisted dying review board in Australia – here’s what I learned Charlie Corke There is overwhelming public support for changing the law in regard to assisted dying in the UK, regardless of voters’ political affiliation. That means that unless politicians go against strong public opinion (which is always possible), the question isn’t whether it will be legalised, but how it should operate. I live in Victoria, Australia, where voluntary assisted dying has been available for six years, and I have just completed a six-year term as the deputy chair of the state’s voluntary assisted dying review board. This board reviews every application for the service (now more than 3,000), and there has not yet been an occasion where an ineligible patient has been deemed to have gained access. Instead, there have been numerous occasions where the legal hurdles have been shown to have caused unreasonable delay or distress (or both). The same objections to assisted dying were raised in Australia as in the UK, but as the review board has established, these have not turned out to be problems. However, I am concerned that the UK may be making the same mistakes that have led to these delays in the Victoria service. For example, the proposed UK bill’s requirement for judicial review would constitute a significant barrier – the courts are already overloaded – while being unlikely to make the process safer. Any legislation should take into account that people will likely postpone applying till late in their terminal disease (accepting we are “at the end” can’t be easy), and it’s natural that doctors may be hesitant to respond to requests until death is imminent. As much as politicians might say that this is a non-urgent, elective service, where timely response is not a consideration, we have found this is not the reality. It is important to recognise that some who strongly oppose this legalisation may advocate complex impractical safeguards to ensure that, should assisted dying be legislated, it will be so difficult to access it will rarely be used. Applicants are often very close to death and fervently want to control how they will die, so the process has to be swift, efficient and compassionate. Prof Charlie Corke is the former deputy chair of the voluntary assisted dying review board, Victoria, Australia Nims Obunge: Legalising assisted dying would disrupt the cultural roles of faith and family in end-of-life-care Nims Obunge 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. Nims Obunge is senior pastor of Freedom’s Ark and CEO of the Peace Alliance