Source: The Conversation – UK – By Erica Borgstrom, Professor of Medical Anthropology, The Open University
The House of Commons narrowly passed the terminally ill adults (end of life) bill on June 20, a significant step toward legalising assisted dying in England and Wales. The bill must still pass through the House of Lords before it can become law. So far, the debate has centred on a key question: should people already facing a terminal prognosis have the legal right to choose when to end their lives?
The discussions, both in Parliament and among the wider public, have often focused on personal stories of dying – some shared as examples of a “good” death, others as cautionary tales of suffering. When speaking to the BBC after the bill passed, MP Kim Leadbeater, who introduced the legislation, described the current situation as a “failing status quo.” She argued that the law must change to offer more control and compassion at the end of life.
More than 530,000 people die in England each year, and it’s estimated that around 90% of them could benefit from palliative care. Yet many are still dying in pain, with thousands experiencing unmet needs in their final months. Some supporters of the bill argue that access to assisted dying could offer an escape from anticipated suffering and loss of dignity, especially when palliative care falls short.
What is a “good” death?
The concept of a “good” death already shapes the country’s end-of-life care policy. Current practice encourages patient choice, comfort and dignity usually guided by the question: what matters most to you?
Through advance care planning, patients can express preferences for their care, such as refusing resuscitation or declining further treatment. But these choices are usually framed in terms of what not to do. Assisted dying, by contrast, introduces a new ethical dimension: it’s not about withholding treatment, but about actively intervening to end life.
View from the clinic – and bedside
Over the past 15 years of conducting ethnographic research on end-of-life care in England, I’ve seen just how deeply people are affected when asked to contemplate their future – or the future of someone they love.
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Some patients are decisive: they know what they don’t want, and they say so clearly. Others apologise for being a burden. Some find it too difficult to plan at all. In fact, fewer than 3% of UK adults have documented advance care plans.
Clinicians, too, face challenges. I’ve seen doctors wish patients would recognise when treatment has become futile – and patients, in turn, hope doctors will take the decision to “just stop”. There can be deep mistrust, with some fearing they’ll be “given up on”. These tensions are unlikely to disappear if assisted dying is legalised; in fact, they may become more pronounced.
Who would be eligible?
In England, the legal definition of “terminal illness” is a life expectancy of six months or less, and that’s the threshold used in this bill. It excludes people with incurable but long-term conditions who may be suffering, but aren’t likely to die within half a year.
This six-month cut-off also assumes that doctors can accurately predict how long someone has left. But Marie Curie, the end of life charity, called that definition “outdated” and “arbitrary,” highlighting how it fails to reflect clinical reality.
More recently, research examining nearly 100,000 patient records from London found that prognosis is least reliable when predicting survival over the “weeks to months” time-frame – exactly the bracket covered by the bill. Doctors are more confident estimating if someone has less than two weeks or more than a year. Anything in between is often described, quite literally, as “the length of a piece of string”.
A step forward – with complexities ahead
The bill’s passage in the Commons reflects a growing desire to give people more choice, control and clarity at the end of life. For many, it marks a long-overdue recognition of both suffering and the right to self-determination.
Yet while the vote signals strong support for greater autonomy in dying, the everyday realities of predicting prognosis and navigating complex end-of-life decisions remain uncertain. The practical and ethical challenges are far from resolved.
Erica Borgstrom receives/has received funding for her research from the National Institute of Health Research, the UKRI Economic and Social Research Council, Marie Curie, the Foundation for the Sociology of Health and Illness, NHS England & NHS Innovation, and End of Life Doula UK.
– ref. Assisted dying – medical anthropolgist on the complex practical and ethical road ahead – https://theconversation.com/assisted-dying-medical-anthropolgist-on-the-complex-practical-and-ethical-road-ahead-259478