Two years ago, I launched a consultation on proposals for a bill to allow terminally ill adults with mental capacity in Scotland the choice of an assisted death. The response broke all records for a member’s bill consultation, with over 14,000 submitting views and around 78% declaring their support for a change in the law.
As well as confirming the huge public interest in the issue, and overwhelming support for change, what was most striking about the responses was the number of personal stories from people with first-hand experience of what the current ban on assisted dying means in practice. Whether from those with a terminal illness fearful of what lies ahead, or people who had lost a family member or close friend to a ‘bad death’, such testimonies were heartfelt and often harrowing. Yet they also spoke of a steely determination to see reform take place here in Scotland.
I appreciate it may not always appear so, but parliament does actually spend most of its time debating ways to improve the quality of life for people, whether across the board or in specific circumstances. And rightly so. By contrast, we spend precious little time considering how we might improve the quality of death: the options, care and choice at the end of life. However uncomfortable it may be, we desperately need to overcome this taboo. Hopefully the debate around my bill will help.
In parliament this week, to mark the second anniversary of my consultation, I hosted an event at which a report was published entitled, Time for Choice. Prepared by campaign group, Dignity in Dying, the report brought together the results of further polling, research and interviews with those with stories to tell.
It confirmed that public support for assisted dying remains strong at 77%, driven no doubt in part by the finding that 58% of Scots have seen a loved one suffer at the end of life. Interestingly, support within the disability community and amongst Church of Scotland members was found to be broadly in line with the population as a whole.
Meanwhile, the report estimated that each year in the UK around 650 people with a terminal illness take their own lives, with many times more attempting to do so unsuccessfully. This, in a sense, speaks to the trauma that characterises so many of the personal testimonies, more of which we heard on Tuesday evening in Committee Room 3 at Holyrood.
Stacey spoke about her mum, Zana who died of bile duct cancer in 2021. “Mum received amazing palliative care, at home and then in the hospital where she’d worked, but this didn’t take away her suffering”. Stacey and her dad have PTSD from what they witnessed.
Ani from North Uist has MND and talked of her anxiety about being “trapped in her own body. I don’t have a fear of dying but I do have a fear of how I die.”
I also met Luke, who first emailed me earlier this year to lend his support to my efforts and offer any help he could. Luke has myeloma, an incurable blood cancer, the treatment for which has been gruelling. He is also originally from Melbourne, where assisted dying was legalised in 2017, but having moved to Scotland 17 years ago, and married his Scottish husband, Richard, Luke cannot conceive of flying back to Australia once the cancer is terminal. And nor should he have to.
It was a privilege to finally meet Luke in person on Tuesday. He told me of the incredible treatment he has received, but added, “I’ve been on the haematology ward, I’ve seen what’s down the line and it’s horrifying – something no human should have to endure”.
Hearing or reading the first-hand accounts of people like Luke, Ani and Stacey reinforces my determination to secure a long overdue change in the law that allows more choice, dignity and peace of mind for those at the end of life. Realising this change will come too late for so many, however, is something that haunts me. When that choice is finally available in Scotland, we will wonder why on earth it took so long for us to get there.