Breathless and terrified: a bad death that shows why Scotland must act on palliative care
After MSPs reject the Assisted Dying Bill, end-of-life care must be improved to ensure everyone is treated with dignity and compassion in their last days
Bolt upright. Breathless. Terrified. Gail’s* uncle died in extreme distress. The only solace was that he could see his cattle through the window, which had been his wish. But would he have chosen this if he had known he would die so badly? Gail doesn’t believe so. “I don’t think he really chose place over palliation… and I don’t know why it has to be one or the other.”
After almost two years of debate, the Assisted Dying Bill reached its final stage at Holyrood. The enduring legacy of this passionate and complex discussion must be real change to the provision of palliative and end-of-life care. Assisted dying may not be coming to Scotland, but hospice and palliative care must be prioritised regardless: it is critical to ensure choice, dignity and compassion at the end of life.
More than 60,000 people die in Scotland annually, and up to 90 per cent could benefit from palliative care. This is no marginal issue – after all, death is inevitable but receiving the best care when it happens is not. It is surely one of the biggest tests of our healthcare system. Can it meet people with humanity when they are most vulnerable?
READ MORE: How Assisted Dying Bill can transform Scotland for the better despite being rejected by MSPs
Dying in hospital, not at home
Hospice care already supports over 20,000 people and hospice staff make tens of thousands of visits to people’s homes each year. This care brings comfort, supports families, reduces pressure on hospitals (and the public purse), and helps people stay where many want to be, at home and properly cared for.
Yet too many people are still spending their final weeks in hospital, not because they need to be there, but because the system gives them no other choice. Around one-in-three people in Scottish hospitals are in their last year of life – and £1.1 billion of the £1.3bn spent on healthcare in the last year of life goes on hospital care. This is a system that too often falls back on hospitals, rather than supporting people to be cared for in the community and by hospices.
In rural and island Scotland, the gaps are even starker. Hospice UK’s recent report found around half of people didn’t receive the support they needed. The problems were painfully familiar across respondents: too little help at home, especially overnight; long journeys to receive care; delays getting medication; and too many families left frightened and alone at the worst possible moment.
READ MORE: Charity warns end of life patients 'being written off' amid call for legal right to palliative care
A political issue
The recent funding announcement for hospices is welcome, and so is the First Minister’s commitment to improve palliative care further. But after such a significant debate about choice and dignity, Scotland needs transformation, not tweaks.
With a Scottish election approaching, all parties must commit to delivering long-term, sustainable hospice funding and an independent review of palliative care to ensure the best possible care wherever someone lives.
The Assisted Dying Bill may not have passed but what it forced Scotland to confront remains. So does Gail’s question. Why should anyone have to choose between being at home and being properly cared for?
Palliative care isn’t an optional extra. If we’re serious about compassion at the end of life, it must sit at the heart of our healthcare system, not at its edges.
Helen Malo, senior policy and public affairs manager (Scotland), Hospice UK. *Gail’s name has been changed.
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