Ensuring Real Choice in End-of-Life Care
- Francesca Mancino
- 7 days ago
- 5 min read
Why Should Improvements in Palliative and Social Care Be an Integral Part of the Assisted Dying Legislation in the UK?
Trigger warning: this article briefly mentions suicide.
On the 29th of November 2024 the Terminally Ill Adults (End of Life) Bill, introduced by the Labour MP Kim Leadbeater, passed its second reading in the House of Commons with a 55-vote majority (330 ayes vs 275 noes). This represents a landmark in the history of the UK, being the first time the Parliament has voted in favour of a bill aiming to legalise assisted dying. Indeed, multiple legislations on assisted dying have been proposed in the UK since 1936 – when Lord Arthur Ponsonby introduced the Voluntary Euthanasia Bill to the House of Lords - but none of them achieved a majority of votes until now, 88 years later.
The proposed legislation would legalise assisted dying for mentally competent adults aged 18 or over, living in England and Wales, who have a terminal illness and a remaining life expectancy of less than 6 months. Under the current version of the Bill, eligible people wishing to access assisted dying would need to get approval from a panel including a senior legal figure, a psychiatrist, and a social worker. This multidisciplinary body would need to establish whether the individual is eligible, has mental capacity, and is acting voluntarily without coercion. A similar bill has also been proposed in Scotland, and it would allow adults aged 16 or over with a terminal illness to pursue assisted dying upon approval from two independent doctors. Nonetheless, eligibility criteria and assessment procedures for both bills may change, as these are currently being reviewed by relevant committees and will be subject to additional parliamentary scrutiny in the coming months.
While the legalisation of assisted dying in the UK may take years—if it is ever approved—this possibility has sparked a heated debate among members of the public. Supporters of the Bill argue that assisted dying will provide terminally ill people with choice over their end-of-life, while the opponents argue that it will threaten their freedom by pressuring the more vulnerable to end their lives.
Personally, I stand in the middle. I support the Bill in principle, as I believe people should have the right to an assisted death when they have a terminal illness and no chance of recovery. However, I am concerned that legalising assisted dying in the UK may pose a threat to people’s free will if access to palliative and social care is not significantly improved.
How Could Assisted Dying Benefit Terminally Ill People?
Supporters of the Bill – myself included – argue that assisted dying could ease suffering in the final stages of terminal illnesses, particularly for those whose pain cannot be relieved by palliative care (support offered to people with incurable illnesses to alleviate pain and distressing symptoms).
Here, I want to explicitly clarify that by terminal illnesses I refer to physical health conditions - like late-stage cancer or neurological diseases - not mental health conditions. Although the proposed legislation would not legalise assisted dying solely on the basis of mental health conditions in the UK, as a mental health researcher, I feel the need and duty to clarify my position on this – which is that I am firmly against this. By saying this, I don’t mean to downplay the suffering of people affected by mental health conditions, but - unlike those with terminal illnesses – their symptoms can improve.
Currently, the lack of assisted dying legislation in the UK pushes terminally ill people wishing to pursue this option to travel to countries where this procedure is legal, leading to additional financial, legal, and emotional challenges. According to a recent report by the charity Dignity in Dying, over 1500 Britons have accessed assisted dying at Dignitas (a non-profit organisation offering assisted dying in Switzerland) between 1998 and 2022, representing about 15% of all assisted deaths at this organisation. However, this option is only available to those who can afford the costs associated with it (this adds up to about £15,000 if you were wondering), leading to health inequalities. Travelling abroad also requires a certain level of health, which may pressure people to make this journey earlier than necessary, eventually sacrificing precious time they could spend with their loved ones if they could access this option in the UK. Additionally, anyone involved in making arrangements for an assisted death faces prosecution in the UK. As such, terminally ill people often make this journey alone to protect their family and friends from legal repercussions.
The inability to access assisted dying can also push terminally ill people to attempt suicide to escape unbearable suffering in their end-of-life. Indeed, terminally ill people are more than twice as likely to take their life compared to the general population, with 300 to 650 of them dying by suicide every year. Even when attempts are not successful, they can cause severe injuries and further exacerbate their physical suffering.
Taking these considerations into account, in my opinion, there is no doubt that legalising assisted dying could ease the physical pain and emotional suffering of terminally ill people. However, the lack of wide spread access to palliative and social care may push people towards this option for the wrong reasons.
The Current State of Social and Palliative Care in the UK
Access to high-quality palliative and social care is the basis for a good end-of-life for people with terminal illnesses, however, in the UK this is only available to a few.
Research has shown that 1 in 4 people in the UK do not receive adequate end-of-life care, with 100,000 people dying each year with unmet palliative care needs. This is not surprising given that only 30% of hospice care is NHS-funded, with the remaining funding coming from charitable organisations.
Similarly, access to publicly funded social care is limited. A recent report indicated that in the past 10 years, more people have requested social care support, but fewer have been granted it. In fact, the financial threshold to access publicly funded social care has not been adjusted for inflation since 2010, meaning that fewer people are eligible for that. This puts a strain on unpaid carers, such as family members and friends, who currently contribute the equivalent of 4 million paid care workers to the social care system (if you want to learn more about this, read this article from my colleague Tony Woods on unpaid carers in the UK).
As such, my concern is that the lack of appropriate end-of-life care could push people to opt for assisted dying to avoid an agonising death and/or becoming a burden for their loved ones.
How Can Terminally Ill People Get Choice Over their End-of-Life?
In my opinion, the only way to give terminally ill people a choice over their end-of-life is to give them access to all options, including high-quality social and palliative care as well as assisted dying. This could be achieved by ensuring that increased funding for palliative and social care is an integral part of the assisted dying legislation. This has already been implemented in other countries, like Belgium, which have seen a marked improvement in end-of-life care provision.
The debate on assisted dying will continue to unfold in the coming months and hopefully, it will continue to shed light on the state of palliative and social care as well as the immediate need to reform them. Ultimately, I hope the Bill will give terminally ill people the right to live and die with dignity.