Daniel Baker, who has Duchenne Muscular Dystrophy, discusses his fears about covid-19 and whether he would receive critical care

When I saw the recent NICE guidelines on critical care for patients with confirmed covid-19 I was extremely concerned. On further reading that concern became fear. If I were admitted to hospital with covid-19, would I just be left to die? Would my current medical equipment just be turned off? Am I of that little value to society? These were a few of the concerns that filled my mind. 

The critical care algorithm, released on the 20th March, stated that if your frailty index was 5 or above then doctors should not provide critical care, patients should be put straight on the end of life pathway. A frailty index of 5 is actually pretty low and includes anyone needing help with outside activities. This could be applied to people with learning disabilities or many conditions people would consider minor.  

For those with Duchenne Muscular Dystrophy, myself included, our frailty index would probably be considered 7, or even higher. Duchenne Muscular Dystrophy still has a life expectancy of below 30. Are patients above, or even near, this age considered terminal? Doctors and nurses are under a great deal of stress currently, they have little time to do full assessments and have long chats with patients. Looking at the diagnosis “Duchenne Muscular Dystrophy, requires 24 hour ventilation” could easily mean a patient would be considered for the end of life pathway, especially as the NICE guidelines appear to suggest you do so.

I am 45 years old and the trustee of a charity which supports adults with Duchenne Muscular Dystrophy. Medical advances are increasing the length of our lives. It’s true there is no cure and that many of us are on 24/7 ventilation, but that does not mean we aren’t living our lives to the fullest. Many adults with Duchenne Muscular Dystrophy have a good quality of life, some of us have jobs, most contribute to charities or society in some way, we have hobbies, friends, and socialise. We are not confined to bed or our homes, portable ventilators allow us to get out to the shops, travel, and do the things that other people do.

The NICE guidelines reinforced the stereotyping that disabled people often face, that we aren’t worth saving and that we can’t possibly enjoy being alive.

I understand that these are difficult times and that health professionals will need to make difficult decisions, but giving guidance that suggests that some life is worth less than others isn’t the answer. That attitude spreads fear and distrust, many could end up dying at home because they were just too scared to call 999.

The NICE critical care algorithm was updated on the 27 March 2020, but some damage has already been done. There is fear and mistrust. Some health professionals will have already read the guidance and it will be in their subconscious.  I have had experience with many doctors and healthcare professionals and trust the ones who know me well. I feel that they would have looked at me as a person and seen, that although technically I could die at any time, my condition has been stable for years, that I had a good quality of life and they would have tried to save me.

I would urge doctors to please also consider this, those with long term medical conditions are used to adapting, should our lives be limited more by a treatment that we are given, we are quite likely to still be able to cope and find ways to continue being productive.  Now this next part is purely speculation, but I wonder if some who would automatically get critical care would actually want it if they knew it could be life altering? Surely giving us all that decision is the most ethical thing to do, even in these difficult times.

Competing interests: Trustee of DMD Pathfinders and Member of the MDUK Content advisory group