The assisted dying debate has shone a light on the state of palliative and social care

On 29 November, Kim Leadbeater MP’s Bill to legalise assisted dying for some terminally ill people passed its second reading in the House of Commons. This was a historic moment, the first time MPs have voted in support of the issue.

Those supporting the Bill argue for those terminally ill, mentally competent with less than six months to live to have the choice to avoid an uncertain and drawn-out death. While some would like to see the Bill go further, others oppose the new law, including the Secretary of State for Health and Social Care. Those opposed to the Bill cite a range of reasons, and while religious objections are sometimes highlighted, the lack of availability of good-quality palliative care is a common concern, as is a worry about pressure being put on people in vulnerable circumstances to end their lives this way, particularly in light of wider societal attitudes to ill health and disability.

Assisted dying has necessarily received increasing coverage in light of this Bill and has also sparked commentary on the state of palliative care in this country. It’s positive to see plans for a commission on palliative care now moving forward. But why has it taken a debate on assisted dying for this to happen? Outside of this debate, is there enough policy attention on people’s ability to live well and independently?

Good access to social care is a key pillar of living well with disability or significant illness. For people who draw on this kind of support, the way in which it is delivered is fundamental to their experience of it. Good social care enables a person to spend time doing things that matter to them with the people that matter to them and to live a ‘gloriously ordinary’ life. But social care as a sector has suffered for years from a collective failure to deliver vital reform, meaning that unmet need, catastrophic costs and uncertain quality are the norm for many. Recent analysis shows that compared with 2015/16, more people in England are requesting social care support but fewer people are receiving it. The means test to receive publicly funded social care (as opposed to having to pay out of your own pocket) has not been adjusted for inflation since 2010, meaning that increasing numbers are having to pay for their own care. The poor access that many older and disabled people face due to the lack of social care reform leads to increasing pressures on the family or friends who support them, implicitly reinforcing the idea that older and disabled people are a ‘burden’.

Good access to palliative and end-of-life care is a crucial part of dying well with significant illnesses. For people reaching the end of their lives, good hospice care is highly valued, can improve a person’s autonomy and reduce their distress. However, access to palliative and hospice care is also fragile. Most are independent charitable organisations and increased funding pressures mean services are being cut. King’s College London reports that ‘more than 100,000 people die in the UK with unmet palliative care needs’ every year. Marie Curie estimates that ‘around 1 in 4 people currently do not get the end of life care and support they need’. Recent research from The King’s Fund also found that the data for monitoring quality in end-of-life services was often lacking.

Alongside these clear issues of access to appropriate social care and health care, there are also more subtle cultural messages around whose lives are valuable. The misapplication of some DNAR (do not attempt resuscitation) notices during the early days of the Covid-19 pandemic was a particularly egregious example of this, leaving many disabled people feeling that some health professionals valued their lives less than others. There is also still a widespread linking of people’s value to their economic productivity, which means that people are often seen – and see themselves – as burdens when they can no longer contribute. This perception is sometimes made reality by the lack of social care support currently available. This leaves unpaid carers contributing the equivalent of 4 million paid care workers to the social care system, themselves often unable to access the support they need.

The debate about assisted dying is complex and important and we will see it develop further over the coming months. It has shone a light on the state of palliative care and social care in this country, and that now needs to translate into action. We need to ensure people’s right to live well, too.