I consulted marginalised groups on the assisted dying bill – there is fear
4 min read
The Terminally Ill Adults Bill offers a choice to a small but important group of people who want the option of assisted dying.
I continue to support this in principle. But as a clinician and academic working closely with seldom-heard communities, I’m concerned the bill introduces new risks for much larger groups – older people, disabled people, ethnic minorities, people in poverty, and domestic abuse victims – that remain inadequately addressed.
After being invited to give evidence to the bill committee in January, I consulted three marginalised groups to understand their views on the bill.
There is a larger group of people, equally important, for whom the bill creates new risks
Among 98 people from ethnic minority communities living in disadvantaged neighbourhoods, the dominant response was fear. Many worried assisted dying could become something people like them are pushed towards because of systemic bias. Some said they would avoid palliative care or hospital services altogether if they were linked to assisted dying – drawing parallels with the Covid-19 pandemic, when mistrust led to people avoiding critical hospital care.
The second group – 24 women with lived experience of domestic abuse – described how abuse often escalates at the end of life. As one put it, “When you can no longer do what’s expected, that’s when it gets harder.” Many said the biggest risk was that victims would opt for assisted dying as the only escape. Though some had been asked several times about abuse in healthcare settings, none disclosed, underscoring the need for specialist expertise. The bill offers some training for doctors and the panel and includes multiple prompts about coercion, but survivors stressed the need for direct assessment by abuse specialists with time to build trust.
The third group was parents of young autistic people and those with learning disabilities aged 18-26. They wanted their children to have equal rights but were deeply concerned about how capacity would be assessed and decision-making supported. Current safeguards rely on independent advocates, with no requirement for them to involve families. Parents feared advocates may lack the training, time or continuity to understand how their child communicates or masks – concerns echoed in the 2023 national review of advocacy. They sought family involvement, particularly given evidence the Mental Capacity Act is often not properly applied in this group.
Across all three consultations, participants also stressed the need to ensure people weren’t choosing assisted dying due to pain, depression or suicidal thoughts that could be treated by specialists. Yet amendments to ensure this were rejected.
Since giving evidence in January, I’ve shared these findings with MPs across the political spectrum. Most acknowledge the bill won’t be safe for everyone, and that the structurally disadvantaged face the greatest risks. Many still plan to vote for it, arguing despite the risks, it is safer than the status quo.
While I agree that for a small, important, group of people – those who want an assisted death – this bill offers protection, it is essential to acknowledge that there is a larger group of people, equally important, for whom the bill creates new risks. These include direct risks to those who ‘choose’ an assisted death due to abuse, poverty, feeling a burden or poor access to palliative care and mental health support; and indirect risks to those who may now fear, and therefore avoid, the services they need.
In recent weeks, the Royal Colleges of Psychiatrists and Physicians, the British Geriatrics Society, the Association of Palliative Medicine and the Coalition of Frontline Care for People Nearing the End of Life have all issued public statements. While their members hold diverse views on the principle of assisted dying, having reviewed the bill and the national and international evidence, all have concluded: as it stands, the bill does not adequately address the serious risks it introduces.
The bill’s equality impact assessment did not consult marginalised groups, and such groups are the least likely to contact MPs. This silencing must not provide false reassurance. Laws must protect everyone in society, including the most marginalised.
Dr Jamilla Hussain is a palliative medicine consultant and academic
