Assisted dying discourse has stoked fear of death – but the truth is, palliative care works
4 min read
Palliative care is care that improves the quality of life for people living with advanced illnesses.
As a palliative care doctor, I work within a multi-professional team, and our job – collectively – is to alleviate not only the physical symptoms that can be experienced by people with advanced illness (such as pain and breathlessness) but also the psychological, social, and spiritual concerns. Palliative care has been described as ‘radical autonomy’. It is intrinsically person-centred and focuses on what matters most to the individual.
Over the past decade, a large body of research has shown – put simply – that palliative care works. Palliative care improves symptoms and quality of life for patients, reduces reliance on acute hospital care near the end of life, enables people to die in their own homes, and improves wellbeing for carers, including into bereavement.
The Terminally Ill Adults (End of Life) Bill has... presented a warped view of death and dying
These studies also show that palliative care works best when provided early and collaboratively, alongside other types of medical care and treatment. In my clinical practice I see patients who are likely to die within hours or days, and others who are expected to live for years. Palliative care can be thought of as providing an extra layer of support.
The Terminally Ill Adults (End of Life) Bill has shone a light on palliative and end-of-life care. But it has presented a warped view of death and dying. Listening to the second reading debate, you would be forgiven for thinking that most deaths involve great suffering. This is not the case.
Most dying people experience a general slowing down. They feel increasingly tired and spend more time in bed, eventually slipping into a coma that they do not wake up from. Symptoms such as pain are not inevitable but, when they occur, can be alleviated with medicines, delivered by a syringe pump if the person cannot take them orally. Contrary to what has been said in the context of the debate, there is no upper limit to the dose of morphine that can be used for pain. If people have side effects from morphine or similar medications, other options can be used. And while ‘bad deaths’ can happen, most reflect a failure of care.
Our 2024 Better End of Life report showed fewer than half of dying people have input from a specialist palliative care team in their last three months of life. Difficulty accessing care leaves patients with unalleviated symptoms, and carers feeling overwhelmed, unsupported and distressed. “The overall experience is that no one really cares,” one bereaved family member in our research said.
Failure to prioritise palliative care means that recommended services are not consistently available. For example, only one in three areas consistently provide a palliative care telephone advice line, despite this being a NICE recommendation since 2011. For the vast majority of dying people, we don’t need to change the law to ensure they have a peaceful and dignified death. We just need to care enough.
Campaigning groups are keen to tell us that the public are supportive of assisted dying. They are less willing, however, to acknowledge that half of assisted dying supporters say they would oppose law changes if someone had an assisted death because they could not access the care they needed. Public support for assisted dying is not unconditional.
An amendment to the Terminally Ill Adults (End of Life) Bill tabled by Labour and Co-operative MP Rachael Maskell, proposed that everyone requesting assisted dying should receive a palliative care assessment. Research shows that palliative care can alleviate a wish for hastened death; palliative care can help people who want to die, want to live. Yet the committee voted against the amendment by 15 to eight.
If the purpose of safeguarding is to ensure that no one who might otherwise want to live is ‘assisted’ to die, palliative care is an essential safeguard. Without high-quality palliative care available to all who need it, we risk some people seeking an assisted death because they can’t get the care they need. Where’s the choice or dignity in that?
Professor Katherine Sleeman is Laing Galazka chair in palliative care at King’s College London and honorary consultant in palliative medicine at King’s College hospital
