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
ProfG
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Thank you.
Unfortunately, I've seen how dreadful MS can be at the advanced stage. A friend (48) has been bed bound for 5 years. It has destroyed her life, her husband's life, their marriage and the education of their two teenage sons – their future looks bleak in terms of employment prospects. The health visitors do things to her (to help bladder and bowel issues) that you wouldn't want done to you. She'll never get to Switzerland, but She's told me that she wished she had ended it before fully loosing her independence and dignity five years ago. She never had any DMTs. I hope current DMTs will reduce the risk of MSers becoming as disabled as my friend. I went to an MS conference a decade ago and they talked about the need for combo treatments – highly effective treatments to suppress inflammation and neuro protective add-ons. We don't seem to be making any progress with regard to the latter.
The world needs more people like you. Thank you.
I wonder if this patient or her family were religious or had been religious? This would have helped.
Thanks, I agree. I have asked the Reverend Professor Coles to do a guest post on this specific and neglected aspect of this issue. I think we need a much broader discussion on assisted suicide to include a religious perspective. I don't think I am the right person to comment on this.
I often feel too weak to do much physically but have found it so meaningful to be still and remember the needs of others in prayer. Even if I become bed bound and potentially unable to communicate, I will still be able to silently pray to God for other people and that gives me great hope and true purpose in my life.
Anonymous 5:00pm.Your comment is inspiring, and reminds me of the Buddhist meditation practice Tonglen, breathing in the pain and suffering of others, and breathing out happiness and well being to them. ‘If we have the courage to break the habitual pattern of pushing away the pain, we can experience deep compassion for ourselves and all beings.’
Do we know how frequently people with MS seek assisted suicide in the UK? Is there a need for it?
Re: "Do we know how frequently people with MS seek assisted suicide in the UK?"I have no idea. In my 25+ year career as a neurologist, seeing may be 1000+ people with MS, I have had only 2 patients express an interest in assisted suicide. I therefore suspect it is a very low number.
Thank you.
Prof G,I think that perhaps you're being presumptuous.This seriously astonishing dramatisation allows you to get off the hook: pretend that all MSers treated in the modern age are cured, and those that slip through the net will be placated via plenty of hugs and kisses. What ridiculousness!Let us talk about the rubishness of overpaid neologists, unaccomplished basic scientists, heartless Big Pharma, and a UK government that doesn't care about wellbeing.This drama, if I worked in MS, would make me feel ashamed. Society failed this lady, not her son. You all failed her.
Maybe you should re-read the piece, which highlights your concerns for example;"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."Best wishes an "unaccomplished" basic scientist.
Re: "..modern age are cured.."I never made that assumption; I don't even mention the word cure or cured. However, the long term data is looking pretty convincing in RRMS that early effective treatment makes a big difference to long-term outcomes. So in the current era DMTs should delay, and hopefully prevent, advanced disability. Who said we, the NHS and Society, didn't let her down? I state this in my commentary, but I/we can't be sure because we don't have all the details about her case. The same applies to her family. So I think you need to be careful to apportion blame.
You should ignore Anonymous Wednesday, March 07, 2018 3:42:00 pm. He/She/It has an axe to grind. A bitter and twisted troll.
Couldn't agree more! Wish there was far less of the blame-game and condemnation going on. We can all make a contribution, however weeny. Fact is I've joined a new practice and met my new GP today. Took the opportunity to 'plug' the new guidance on symptoms of MS for GPs and PCPs + call from neurologists to refer promptly. A pinch of putting on pressure by saying that in view of their being a teaching practice, I thought it pertinent. Hells bells there are enough negatives with this disease, so more attention on maintaining or progressing things, where possible, positively please!My respect to you ProfG for spelling out your personal and professional position so candidly.
Prof G, I do think that as a civilised society, we need to talk about assisted dying on this blog.The NHS should have it as an option. Lots of civilised nations do, after all.Why is the UK so afraid of dignity in dying?
Because it opens doors to places that we don't want to go as a society. We should recognise the necessity of the option, but won't.
It is hard to prevent social isolation and loneliness when you are unable to leave the house independently. 🙁
I agree. There is a smug tone to this post, like 'if I was this lady's neurologist then she'd still be alive'.You don't have MS, prof G. You don't know how it feels.
Fair point, but you don't know that I don't have MS you are guessing.
What I take from this post is that it is scary that our QOL depends on which neuro we see. What is going wrong in neuro school that this happens, and why is it allowed to continue? I don’t see the smug tone but I feel that some questions raised in the post in reality, due to time constraints, would not be raised in an annual 10 minute slot. ‘Allyson would have benefitted from social prescribing, i.e. being prescribed activities that would have added meaning to her life. ‘Whether or not Allyson had an ms nurse is not mentioned, but I wonder if this is an area that they could be more active in, if there were more of them to go around that is. What are ‘prescribed activities’?
Good question Julie, What are ‘prescribed activities’?
ProfG this blog offered an invaluable help to pwMS who just by googling they could have quality scientific research interpretation, and it's turned into a social chit-chat place, while you keep the important research discussion to your twitter. What a shame for the future MS patients.
We can't please everyone. Each blog post takes an hour of more time (with responses). Each tweet takes minutes. It is all about time economy. We only have so many hours in our day.
This post was done in response to one of our readers. I don't normally listen to Radio 4 dramatisations.
Ugh – you were clearly compassionate in your response and thinking about ways to prevent this isolation, pain, and despair. Mental health is a key part of the brain health initiative – especially social isolation etc. Maybe guest posters can address this – or even people with advanced MS can write a post (anonymously or not) about how they're dealing with the challenges of advanced MS.
India allows 'living wills' for terminally ill, according to the BBC. http://www.bbc.co.uk/news/world-asia-india-43341155Does the UK?
This radio program is not an easy listen but I can see positives. Allyson died in 2010 so don't compare it with today. In the last ten years symptom management for people with advanced MS has improved, I am a witness. Botox, FES, public awareness of disability, lifts are railway stations to name a few. People can still or will go into denial and slip through the net however awareness of physical disability in this country is improving. The #ThinkHand campaign is an example.If you think this country is bad I suggest you go to Russia. I visited St Petersberg just over 10 years ago and used a wheelchair. There were no dropped kerbs, disabled access was almost non existent and everyone stared at me as if I was an exhibit from a zoo.
I might just take you up on how I'm dealing with challenges of advanced MS
UK MSers still go to Dignitas, Prof G.Check out their website if you will. A top Google search is for their fees.
I know that if I become so disabled, I would want to end my life too and I would like others to acknowledge my right to do so and keep their opinions for themselves.
You have a vision for advance MS care,Prof G. My MS team in West Yorkshire doesn't.Too many discrepancies in the NHS out there. What to do?
Truthfully, the writer of this drama gave Allyson treatable symptoms, which made it easy for Prof G to say she could have had more help. The writer could have given her Trigeminal Neuralgia (agonising facial pain – aka the suicide disease). This can only be treated with drugs that slow nerve signals and make all other symptoms worse. She could have had MS related epilepsy, unusable hands, inability to speak. There are lots of MS symptoms that are impossible to treat. It is too easy to say that people with advanced MS will have an OK quality of life if they get good treatment.