When publisher Peter Owen approached me with a proposal to put together a book looking at the issue of assisted dying, I imagined it would be a big job. I had no idea. Working with Dignity in Dying Patron Lesley Close, we came up with something that had never been attempted before; to set out the legal and theoretical arguments for assisted dying alongside the personal, human reasons: the real people's stories that show why people care so much about this issue.With the book now published, I have had time to reflect on why this issue is also so important to me.
I was brought up in a liberal home. Assisted dying was an idea I was aware of as I was growing up and one which seemed to make logical sense - if you are dying you should have control over the suffering that sometimes comes with that process. Then, at university, I worked as a healthcare assistant, mainly in palliative care. It was then I was forced to face the reality of our current cruel laws.
The agency I worked for sent me to a new patient. Her name was Sam* and she had Huntington's Disease and cancer. I knew little of her before I arrived and had assumed I'd be meeting a woman in late middle age. I was wrong, she was just 26.
Huntington's Disease is genetic and Sam had seen some of what might be in store for her as she watched her father die of the disease when she was young. She had been unfortunate to contract the juvenile strain of the disease, meaning her symptoms started when she was just 18.
Sam was also diagnosed with breast cancer just before her Huntington's diagnosis and had had a mastectomy, but the cancer had metastasised. In the final weeks of her life the cancer had spread to her brain.
Sam was dealt a difficult and incredibly unfortunate hand which I cannot even begin to imagine. The truth is that this was made even harder by our laws prohibiting choice at the end of life.
When I first met Sam she was able to articulate her views, and she was certain that she didn't want to suffer to the extent her father had done. Her suffering ended up being much worse.
Had Lord Falconer's Assisted Dying Bill, which will be debated in the House of Lords this year, been law Sam would have had the choice of an assisted death, and by the time we met she would have begun the conversation about her end of life choices with her healthcare team. She would have discussed her fears about her death and what she might consider to be a good death, given that it was imminent. Once she lost the ability to do all of the things she enjoyed and the pain became too great for her to bear she might have asked her doctor for the prescription of life-ending medication. I suspect about three months before she actually died she would have asked for her doctor to supply the life-ending medication which she would have taken, surrounded by her friends and her mum and brother. She would have been spared the unimaginable torment that the final months of a degenerative condition, added to her relatively young age and terminal cancer, meant she endured.
Sam died almost a decade ago now, and the suffering she went through remains vivid in my memory. I knew Sam for a year. I can only imagine how her mum feels having lived through the relentless suffering of her husband and then her daughter; knowing it is just a matter of time before her son starts showing those very same symptoms. He has tested positive for the Huntington's gene.
Ten years on, and having spoken to many people facing all different terminal conditions, writing and editing this book has further strengthened my view that a law to permit safeguarded assisted dying is both necessary and long overdue. I will not rest until those who are competent and facing an imminent death can exercise choice and control over the timing and manner of that process.
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