Today I saw a 38yo female patient at the liver clinic. All I know before I met her for the first time is that she has autoimmune liver disease (Anti SM Ab), was on Prednisone but had many complications with the medicine that required her to stop the treatment. The doctor mentioned that she cared a lot about her appearance which made her reluctant to start treatment to begin with, and now that the side effects are full blown in her unfortunate case, she decided to disown medicine for the time being, maybe forever.
We called her name in the lobby and I saw a beautiful lady slowly rising from her chair, with a confident yet in a way contemptuous smile on her face. She was well dressed, with a bandana on her head and many other accessories, like an anklet, rings, bracelets - the list goes on, she has jewelry anywhere you can modestly/femininely have one without looking like a goth.
She sat down and she was very upset with the liver doctors. She did not have any liver symptoms apart from mildly elevated liver enzymes before the treatment, but after the treatment she has alopecia and neutropenia that led to her cellulitis and vulva ulcer, causing her to be unable to walk and admitted to the hospital for infection treatment. In a way she blamed the liver doctors for convincing her to get treatment. In her words, she felt that the doctors was trying the medicine on her normally functioning body and damaged it - now her body and her life is ruined.
In the doctors' defense, they were simply following protocol. One out of ten patients will have side effects as bad as this lady does - it's simply random and unfortunate, and there's no way to tell in advance before the treatment is administered. In the long run, without treatment she will succumb to liver cirrhosis requiring transplant, and that is a much bigger deal than alopecia or minor infections. However, one can argue that lifelong alopecia can be worse than one transplant or even death, and this seems to be the case with this lady who cares immensely about her appearance.
In my head I tried to understand that for some people, beauty and maybe dignity that comes with it is more important than life itself - people just have different preferences and I'm in no place to judge, but as hard as we try not to, doctors, or human beings for that matter, do judge. For example, a baby had an inborn-error liver disease and after many surgeries to no avail, she needs a transplant to save her life. However, her mother will not let her go through it. The doctors were very upset but there's nothing anyone can say to change the mother's mind. The doctors suspected that because the baby looked normal (with some jaundice), the mother does not see how quickly death is coming to claim her baby, or maybe she's simply afraid of the procedures. I don't know the reasons, but I understand that sometimes people simply want to die with some dignity. I'm not upset with the mother and I don't judge her - I just simply don't know what to say. Maybe the mother knows best what is best for her baby, but is she entitled to taking away her baby's fighting chance at life? The baby can't speak for herself - what if she wants to fight?
(Back to the pretty lady) From a scientific or economic efficiency point of view, life with side effects is better than no life at all. When you consider life in agony or indignified states like brain death, alopecia and infections seem a small price to pay. As doctors we want the best for our patients, or what we think is the best, and when patients choose not to listen to us, we cover our eyes in sorrow because we know what will happen to them and we don't want to watch.Once it happens, there may be nothing doctors can do at that point, and any regret won't turn back time or change the outcomes of their choices. Death rarely gives you a second chance.
I didn't have to struggle for long. When the doctors came in, the lady let out her anger and frustration. She did not break down and cry - there were no streams of tears - only big, heavy drops falling quickly to her clothes, like she's trying her best to hold it in with her dignity but it is simply overcome by what she suffered. She said she lost her job because she's a hostess, and a hostess simply needs hair to be hired. Every time she brushes her hair and a bunch fell to the ground, her son was frightened. She tried to convince him that the hair will come back, when she herself doesn't know for sure it will, and her son was not convinced, maybe because she did not believe it will to begin with. She said that without her son she wouldn't care so much about her hair, but now that he's freaked out and she can no longer support the family financially, the treatment is not acceptable. The economic efficiency argument above now falls to pieces, and what you thought was an easy choice is not always clear cut. Remember not to judge anyone but yourself.