This is my personal take on the story. You may or may not want to hear what I have to say.
Although this is a very sad story about someone with MS, it is filled with love and compassion. The people involved cared. The story also teaches one not to be afraid to face one’s own mortality.
Allyson, the lovely lady with MS in this story, missed out on DMTs and had over the decades became very disabled. She was essentially bed-bound with bladder and bowel involvement, spasticity and pain. She needed carers up to four times per day and had a hoist to transfer her in and out of bed. The story does not mention pressure or bed sores, but she would have been at high risk of pressure sores. She had recurrent urinary tract infections. She end-up living in a downstairs flat with a view of a car park. She missed the beautiful views of Yorkshire that she had had in her previous flat. She had been forced to move to a ground floor flat because of her disabilities.
It is clear that Allyson had become socially isolated and avoided going out. This was because she was worried about being incontinent in public. She was concerned that she wouldn’t be able to get to the toilet on time. She was having intermittent enemas to keep her bowels open. I am sure a lot more could have been done to address her bowel anxiety. I would have switched her to a daily rectal irrigation regime. This allows pwMS, and many like her, to have confidence in their bowel function and with time allows them to overcome their anxiety and regain their confidence about going out. This is how many Paralympians manage their bowels.
She had spasms and pain in her legs and back. She mentioned taking clonazepam. It is clear from the narrative that her spasticity management hadn’t been optimised. There is a lot she could have done to reduce her spasm and control her pain. Was she offered other add-on anti-spasticity agents, e.g. Sativex? Was she a candidate for intrathecal baclofen? In the modern era, you should not be in pain from spasticity. The pain would almost certainly have added to a downward spiral that led to her becoming depressed.
Based on her unwillingness to go out and interact with family and friends I suspect Allyson was depressed. Had she been assessed for depression and treated? Had she been offered CBT and mindfulness therapy? Was she a candidate for an anti-depressant? Dare I ask if she had been asked about suicidal ideation? It is clear Allyson was angry and possibly in denial. I think a lot could have been done to help her.
Social isolation is a massive problem and was probably the primary driver of Allyson eventually taking up the option of assisted suicide. Allyson would have benefitted from social prescribing, i.e. being prescribed activities that would have added meaning to her life. She needed someone to tell her every day that she was loved, needed and had a role to play in society. She was an actress and a teacher. Could she have remained active? She may have been able to stay connected to an amateur dramatic society. Why didn’t she go out to local plays? Why didn’t she engage? Could she have remained active as a teacher; possibly part-time as a tutor? The latter does not need to be done face-to-face; there are technology solutions to allow disabled people to work.
It is clear she suffered from MS-related fatigue. Why was she fatigued? Did she have ongoing MS disease activity? Was she sleep deprived as a result of night-time bladder problems? Was she drinking too much caffeine? Too much alcohol? What other medications was she taking that could have been optimised or stopped to improve her alertness and reduce her fatigue levels? Did she have a sleep disorder?
I think Allyson may have been let down by the NHS, her family and friends, and society. She didn’t need assisted suicide as the final treatment option for her problems. What she needed was love, care and responsive health-care and social systems to optimise her quality of life.
At a personal level I am for assisted suicide; as a libertarian, it is about choice. However, as a doctor and neurologist, I am against assisted suicide. How can I, on the one hand, be trying to do my best to treat my patients, to make their lives easier and better and on the other hand offering assisted suicide? I would hope that if I was looking after Allyson she would have not needed this drastic solution.
Since we have been running our MS Research Days, PPI (public-patient involvement) programme and MS Advisory Groups I have seen how engaging with patients, connecting them to us and with other people with MS, changes their worldview. I am more convinced than ever that part of our role as MSologists is to expand our patients social capital or social network. By doing this we would hopefully prevent more people in a similar predicament to Allyson from needing assisted suicide. We are social animals; we need to interact, to be loved and cared for. Loneliness was the killer here, not MS.
Prevent loneliness, prevent social isolation, and the need for assisted suicide as a treatment option for MS will go away.
Despite these views, I will always respect an informed decision of one of my patients to have an assisted suicide. It is not my role to judge, or withhold, this option. This is why I haven’t refused to write medical reports for Dignitas when requested. Fortunately, to date, none of my patients who have requested these reports has taken up the option of travelling to Switzerland for an assisted suicide. Maybe I should count myself as lucky? On the other hand, I did take the modern Hippocratic oath when I was a final year medical student. At times like this, it is worth reminding oneself of your vows and practising medicine to the best of your abilities.
The following is a modern version of the Hippocratic oath; written in 1964 by Dr. Louis Lasagna:
I swear to fulfil, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not”, nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Here is the programme