Margo MacDonald’s unfortunate passing has left her Assisted Suicide Bill in an awkward position. Submitted to parliament and set to appear before the chamber this year, but without contributions from its most passionate and consistent advocate, it may well be swept under the rug. But the Assisted Suicide Bill is a hugely important step in giving the people right to reliable and regulated choices in the event of terminal diagnoses, where they can be helped by doctors to make the right choice for them, while those vulnerable to manipulation are also protected by multiple safeguards.
The proposed bill does not allow for euthanasia by family members or others as it requires that the patient is able to make the request for assistance themselves, that they must have a terminal or life-shortening illness, and also must not have any mental disorders that could affect their request for assistance. The bill ensures that only consenting adults would be allowed to make the decision to end their lives with medical assistance, and that they have endorsement from doctors to that effect, protecting young and less-abled people from others making decisions for them.
The act of suicide in the case of terminal illnesses is not unusual in the UK: some of those suffering are able to go to Switzerland to die if they have the time and the money for that journey – Dignity in Dying (a charity devoted to changing the law around assisted suicide) claims that a Briton goes to Switzerland to die every fortnight. Others ask family members to help them die, potentially incriminating their family members and their medical staff; some also attempt to commit suicide by themselves but, without medical advice, these attempts can fail and lead to harmful and painful complications, prolonging treatment and adding extra stress to loved ones.
Presently in the UK, one of the only ways to legally take your life while also receiving medical care is to refuse treatment and/or refuse food and fluids, sometimes called Voluntary Refusal of Food and Fluids (VRFF). The refusal of a specific treatment is not considered to be a suicidal act, even if the treatment itself is necessary for the patient to sustain their life, nor is the refusal of food or drink, and this allows medical professionals to continue to treat the patient in other ways and for the patient to receive palliative care, but also leads to the long and unpleasant process of their body slowly shutting down.
My grandmother was diagnosed with motor neurone disease in early 2008. It is a fairly rare disease that affects the nerves in the brain and spine and slowly reduces their control over the body; in the case of my grandmother, it began with slurred speech and progressed to her no longer being able to walk or move very well at all. My grandmother had always been a supporter of the right to die by choice, and had been very vocal about what she intended to do if she ever got a terminal diagnosis, so when she was diagnosed with MND, she was able to make the decision straight away that she would die on her own terms and not through immobility and the eventual loss of the ability to breathe; there is no cure to motor neurone disease and the treatment is based around making life as comfortable as possible for the patient. For half of those diagnosed, life expectancy is only three years from the onset of symptoms.
Unfortunately, my grandmother’s disease progressed far quicker than expected, and she was unable to speak within a few months. It became clear that she wouldn’t be able to travel to Switzerland for assisted death with the organisation Dignitas, as there was a possibility she wouldn’t even be able to swallow the lethal dose of barbiturates by herself, which is necessary to qualify the act as assisted death and not murder. The only option left to her was to refuse a feeding tube when her illness left her unable to eat, less than a year after her initial diagnosis. Along with refusing to be fed artificially, she refused fluids besides a single ice cube per day, as advised by her doctor to help reduce the pain from the mouth ulcers caused by severe dehydration.
As her refusal of treatment was legal, she was able to receive excellent palliative care and medical treatment from her doctor and various charity services in her local area of Fife, from which she and our family benefited immensely – but they could only do so much to relieve the pain and discomfort of her essential starvation to death over the course of almost a month. She was completely compus mentis until the end of the third week of her refusal of food, and during that time she was able to communicate to us, using a lightwriter (a speaking keyboard machine), the discomfort of her experience. She emphasised how much she wished she had been able to go to Switzerland or, better yet, die legally and comfortably in her own home. Most notably, she said “you wouldn’t put a dog through this”, you would put a dog down if it was ill and in pain – not because you want to kill the dog, but because sustaining its pain without hope of a cure would in itself be cruel. We don’t grant that mercy and compassion to people.
Having watched what my grandmother went through, as well as having heard countless stories of others going through those same long and painful deaths, I’m hopeful that this bill – with its necessary safeguards to protect the vulnerable – will pass. If this legislation succeeds, it would be a fitting tribute to Margo MacDonald, and perhaps her greatest legacy in the Scottish Parliament.