Tired of life

Is it acceptable to diagnose someone as being ‘tired of life’ and to make this yet another complication of having MS?

Is it acceptable to be diagnosed as being tired of life?

Photo by Gadiel Lazcano on Unsplash

A few weeks ago, I saw an elderly gentleman with advanced MS. He was more disabled than when I saw him over a year ago. He was now using a wheelchair for outdoor mobility and a walker indoors. He had put on a lot of weight so that when he falls, which he does frequently, his very frail wife is unable to pick him up off the floor. They must rely on neighbours, their daughter, who lives nearby, or the emergency services to come and help. He is also drinking excessively; he tells me he is now consuming half a bottle of gin during the day and a bottle of wine in the evening. He is eating poorly and is probably relying on his alcohol intake for most of his calories. He was also unkempt, having let his hygiene slip. He had ingrown toenails and onychogryphosis (ram's horn toenails). He could not tell me when he had last been to the podiatrist. He rarely goes out and doesn’t see family or friends apart from his daughter. 

This gentleman is in an abysmal state. He didn’t want a home visit from the community disability team or a through-floor lift to help him get to his bedroom and shower. He was now sleeping in a makeshift bed downstairs and had an occasional wipe-down to keep himself clean. He was known to his GP, community nurse, and social care team but refused their help. When I suggested he stop drinking, he responded, ‘What for?’. 

When I asked him about his daily activities, he sighed. He does very little himself apart from ordering food and alcohol for home delivery. There is little I could offer this gentleman. His world has shrunk to living on the ground floor of his home. Even coming to the hospital to see me was an effort. His daughter had insisted he come. When I asked him if there was anything I could do for him, he said ‘no’. 

After some harassment from me, he agreed to let the community MS nurse, who had not met him, do a home visit. However, unless he engages with the nurse and, after that, with social services, we can do little to help this patient. This patient needs a personal, medical and social MOT* - starting with personal hygiene basics and moving towards more targeted medical interventions. 

The most pressing problems are his alcohol abuse, poor hygiene, toenails and falls. Let’s hope something happens to motivate him to re-engage with the world. This man has a fascinating backstory, having had two very successful careers. He is not poor and has the resources to improve his life. He doesn’t have the motivation to climb out of the hole he has dug himself into.

He is an example of someone tired of life. HCPs working in hospitals seldom see these people as they tend to disengage from the services and gradually withdraw from healthcare and society. 

I have been spending a lot of time thinking about this patient and wondering how we, as a society, let people get into this state. One thing is apparent: changes in society - moving away from the extended family to the nuclear family and becoming increasingly secular - may be why this happens more often in countries where social services and care are taken over by the state.  This scenario is not unique to people with MS. I have been exposed many times to this scenario as a doctor, and it is something the mental health and care-of-the-elderly teams and general practitioners see daily. 

Should we accept the status quo, or is there something we should do about it?  Any suggestions? 

Is it acceptable to diagnose someone as being ‘tired of life’ and to make this yet another complication of having MS?

Also, please remember that all case studies presented on MS-Selfie are anonymised to prevent individual patients or their relatives from being identified. The point of using case scenarios to teach MS is to make the issues relevant in the real world. This case is an example of many people living with MS.

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 *MOT stands for the Ministry of Transport. The British government introduced the annual test in 1960 to improve road user safety by testing vehicle safety, exhaust emissions, and overall roadworthiness. In medicine, we use the term MOT as a euphemism when dealing with multiple morbidities, each needing attention in the hope the patient can become independent, i.e., lifeworthy rather than roadworthy.  

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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.