A time for reflection
Sadly, one of my patients with multiple sclerosis, whom I have been looking after for close to 20 years, passed away yesterday.
It is a time for reflection.
Sadly, one of my patients with multiple sclerosis, whom I have been looking after for close to 20 years, passed away yesterday. They had end-stage MS and had been essentially bed-bound for the last 2-3 years with severe cognitive impairment and requiring 24-hour care. They had had multiple hospital admissions in the last five years for infections. This last admission was triggered by seizures and followed shortly by a chest infection. In consultation with the family, critical care team and neurology, we called in the palliative care team. We made a collective decision not to escalate their treatment and to make sure they were comfortable during their last few days with us. The patient was in their late fifties and a reminder that MS reduces life expectancy.
Having a patient die on you makes you reflect on your life as a doctor and has reminded me of my early career. As a house officer and general medical trainee in Johannesburg, South Africa, I worked under Professor Tom Bothwell. He was a haematologist and haemoncologist. Professor Bothwell made giving bad news an art. He also knew when enough was enough; he instinctively knew when nature had run its course, and there was nothing more to be done than to make the patient comfortable.
I recall when one of the other senior consultants wanted to try a new chemotherapy regimen on a patient with acute myeloid leukaemia who had relapsed for the third time; Prof. Bothwell resisted. His classic put-down phrase was ‘Down Boy’ as if speaking to a dog; he used this exact phrase on that ward round. He knew that the patient would not tolerate the chemotherapy protocol and had suffered enough. He asked me to make sure that the patient was comfortable.
After the daily ward round, I returned to see the patient and found that Prof. Bothwell had returned to speak to her independently and explain his decision to her and her husband. He was holding their hands, and their heads were bowed in prayer. I don’t think he was religious. Whether the act of praying was symbolic, I don’t know, but he instinctively sensed that this couple needed religion more than chemotherapy. We discharged the patient a few hours later, and she passed away peacefully at home five days later. He found the time to attend her funeral; he often did that. When you look after a patient with leukaemia, they typically spend months in your ward; as a result, you get very close to them and their families. Attending their funeral is your final act as their doctor. This is why medicine, particularly its practice, is still an art and a calling.
As a result of my close involvement with this patient, I got to know their partner very well, and I will try and attend their funeral. It is the least I can do as their doctor and now friend.
Prof. Bothwell was an advocate of the human side of medicine. He would not like the way the practice of medicine has evolved. The best word that comes to mind to describe him is ‘mensch’, an old Yiddish term. The irony is that Yiddish is a dying language in the same way that Prof. Bothwell’s style and practice of medicine are dying or have died.
Many years ago, I started depicting MS as a train journey and used the London Tube map to illustrate the point. People with MS pass through the diagnostic phase, then travel through the minimal, moderate, and severe impairment phases, ending up with late-stage MS and finally in the terminal phase. I have subsequently added long-term remission, MS cure, and normal ageing to the tube map on a tube line that is under construction.
One of the large MS charities asked if they could use my tube map but wanted to remove the terminal phase of the disease. They thought people with MS would not be able to deal with this aspect of the disease if they had just been diagnosed or were relatively early in the course of their disease. I disagreed with editing my tube map. If people with MS don’t know that MS leads to severe complications, how would they make informed decisions about the management of their disease? Do you agree?
My patient dying from end-stage MS is a reminder to me to remind you to think about your end-of-life. The following stops are on the terminal line of my tube map. I suggest you think about things and plan for the end. Being prepared is better than leaving things to your family or the state.
This newsletter's section on Professor Thomas Bothwell is taken from a piece I published on Medium shortly after his death (Emulating your Mentor, 26 September 2017).
Subscriptions and donations
MS-Selfie newsletters and access to the MS-Selfie microsite are free. In comparison, weekly off-topic Q&A sessions are restricted to paying subscribers. Subscriptions are being used to run and maintain the MS Selfie microsite, as I don’t have time to do it myself. You must be a paying subscriber if people want to ask questions unrelated to the Newsletters or Podcasts. If you can’t afford to become a paying subscriber, please email a request for a complimentary subscription (ms-selfie@giovannoni.net).
Important Links
X (Twitter) / LinkedIn / Medium
General Disclaimer
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.
Despite the topic and my sincere condolences to the family concerned… this post gives me hope.
Why?
Because my NeuroInflammatory team won’t talk about my desire to discuss my death with dignity. I was dxd 22 years ago and I’m struggling now to face the future. A good pension and the prospect of a new home should be enough?
It isn’t
Why?
Because the same consultant who asked me to be quiet (in so many words) at the conference I suspect your colleague wanted to borrow your slide for… Wales?? 🏴 The consultant “looked after” a friend of mine in her final years and her death was terrible and I wanted to complain about the way she was treated in her end of days with lumbar punctures being administered weeks before her dying and junior doctors being overheard saying after one hour of unsuccessfully administering the procedure “Shame that didn’t work… my first one, better luck next time” and the three sauntered off and left the nurse attempting to move my friend who was on all fours and struggling to breath and her husband the other side of the curtain in tears when he saw her.
Me??? I don’t want that death, thanks all the same.
How I wish my Neuro’s had your empathy and desire to have difficult conversations
Condolences, Prof G.
You ask if we agree, that people with MS should know that MS leads to severe complications. Yes, we should. I'm 58 and my condition is advancing. I wonder what my life might look like in ten years, twenty year (god forbid I last that long).
I should have an exit plan. The problem is that while I still have the capacity to enact such a plan (ie, not for much longer), I'm not ready to go. And by the time enacting the plan becomes desirable, I won't have the capacity. I will not implicate my partner. So I watch as euthanasia laws catch up, incrementally, with public sentiment. There's always Switzerland.
On that other matter, of treatment vs palliative care, my brother died of cancer seven years ago, four days after a junior doctor finally stopped begging him to try yet another treatment. He could have been gently, comfortably passing in a lovely hospice over a month or more, but no, the doctor just wouldn't give up -- and wouldn't let Jon give up hope. It was excruciating to watch.