The pain of saying goodbye: Why we need to improve palliative care

Earlier this year, I wrote an article about assisted dying, hearing and reading the testimonies of those who had watched their loved ones endure horrific pain at the end of their lives. On reflection, it was a mistake for me to write a piece on death at that point. My own mother was then terminally ill, a stage four cancer patient with only a limited amount of time ahead of her. I found researching the article profoundly depressing and it filled me with worry about what lay ahead. 

My mum died at the start of July after a week in which my brother, my aunt and I kept vigil by her bedside. I held her hand as I watched the TV coverage on election night, a vote for which she managed to cast a postal ballot from her hospital bed. She finally passed away peacefully two days later but only after we had left her side for the first time that week. 

For all the legitimate criticisms of the NHS – and I saw many of its faults during three years of oncology appointments and chemo sessions – the care my mum received at the end of her life was faultless. But it’s not like that for everyone. While we were given a private room for Mum’s final days, I heard stories from friends of relatives who died in pain in crowded wards with just a screen pulled round the bed for privacy as they said their goodbyes. And for those lucky enough to live in parts of the country with access to a hospice, places are often extremely difficult to come by.

Today, Labour MP Kim Leadbeater is expected to formally introduce a bill on assisted dying in England and Wales. Similar legislation is already working its way through the Scottish Parliament thanks to a private members’ bill from Lib Dem MSP Liam McArthur.

Health secretary Neil Gray recently raised concerns about McArthur’s proposals, saying some aspects of the legislation are likely to be outside the powers of the devolved parliament. But Labour’s decision to take up the issue at Westminster and Prime Minister Keir Starmer’s promise to allow his MPs a conscience vote on the matter means we’re now closer than ever to legalising assisted dying.

While everyone deserves a death with dignity, I worry about the implications of introducing such a major change into a health service currently struggling on multiple fronts

And yet while everyone deserves a death with dignity, I worry about the implications of introducing such a major change into a health service currently struggling on multiple fronts. The safeguards in the Scottish bill appear sound – a terminally ill person must get the approval of two doctors who are sure the patient is acting voluntarily and not being coerced – but there will inevitably be those who feel pressure (even though it may be imagined) to end their lives prematurely. 

Assisted dying is already the norm in many other countries, but the experience of elsewhere should at least give us pause for thought. In Canada, medical assistance in dying (Maid) accounted for more than three per cent of all deaths in 2021. Earlier this year, plans to extend the provisions of the law to include those with mental illness were delayed amid complaints from doctors and human rights experts. Dr Madeline Li, who has overseen hundreds of medically assisted deaths, was among those speaking out, saying that making death too ready a solution “disadvantages the most vulnerable people and lets society off the hook”.

Scotland’s assisted dying laws would be our own and there is no inevitability that our experience would follow that of elsewhere, where the provisions have been extended far beyond those they were initially meant for – the terminally ill. But our immediate priority should be improving palliative care as part of our attempts to restore the NHS. That way more of us can experience an end like my mum, free from pain and knowing they are loved.