drmargaret

First let me post an update. My husband had his other hip replaced and is doing as well as can be expected following six surgeries to the area. The entire last year was rough on him. He’s fortunately of a strong constitution and coping well.

I’ve had asthma all my life. I got a bit better between when I was 14 and when I was 24, and then it returned with a vengeance. Last year I had a lot of problems with breathing. I was tried on about 17 different medications including steroids. Ultimately nothing worked. So all the medications were discontinued and I had a CT scan of my lungs, then an MRI scan. It turns out I have an unusual lung disease called sarcoidosis. I’ve probably had it since I was in my early 20’s when my “asthma” returned. It’s late in the course of the illness and I’ve already tried and failed all of the conventional treatments. I did try an experimental treatment for about 6 months and eventually my doctors conflicted with the research team on the treatment and, in consultation with both sides, I elected to stop treatment. What that means is that eventually my lungs will not be able to adequately supply oxygen to my body. I’ll probably end up with death from a heart attack or complications of infection rather than oxygen deprivation.

So I changed from a treatment model of care to a palliative care model. Treatment models in medicine involve the idea of working towards recuperation, or cure of an illness and a return to a prior baseline level of functioning. A palliative care model involves comfort. The goal is making symptoms tolerable with no goal of recuperation or cure. It’s difficult for physicians to switch from their normal treatment role to a palliative care role. It is the model used for all hospice care and all end of life care in general. It’s been a wonderful transition for me. No longer do I have a drawer full of medications and pill containers to take literally around the clock with alarms being set for every 6 hour intervals, but for the most part I’m on no medications except for those needed temporarily if I need some increased comfort.

I’m familiar with this model of treatment because I used to see people in hospice settings and I’ve had friends who have had terminal illnesses. A psychologist friend of mine with end stage cancer elected to continue chemotherapy and radiation as a last ditch effort, but then stopped all work and “stopped churning money.” The pressure she had put on herself to continue to attempt to manage a practice and run a home was a bit much. Her illness offered her the opportunity to pair down, scale back and only focus on what was most important. I spoke with her a few weeks prior to her death. She was happy. Her family was around. She wasn’t in pain. She was relaxed. I talked with a psychologist who was going blind from a brain tumor. He was just starting to switch from treatment to a palliative care model and was extremely bitter about the fact that there wasn’t anything else that could be done for him. He was trying to elicit sympathy from other people. He ended up driving people away. I lamented to him that it’s a shame that the “Make-A-Wish Foundation” that does such wonderful work with children with life-threatening illnesses doesn’t have the same service for adults. He could ask for some super model to visit, or engage in some fantasy sports camp, or get that one last car, pet, travel experience, life experience thing prior to the end. That seemed to give him a different perspective. He thought of many things he could do with the time he had left and elected to have meaning rather than to be bitter. Other people decide to maintain in treatment mode through to the end of their lives. It lets them think they are “doing something” and for some, it gives them hope.

I have lots of hope for the future. I just don’t want to spend my time chasing down treatments that sap the life out of me and do nothing to reduce my symptoms. So for the time I have left I want meaning. I’m intending to work as long as I’m physically able to. I’m one of those people that on my death bed will say “Gee, I could have spent more time at the office.” My husband is able to come to work with me at times so I see him often. Our dogs are both old and not in good health themselves and we just won’t replace them when their time comes. I’m also not concerned about big issues like politics, or the economy, or other things I won’t conceivably have an impact on in my lifetime. Yes I’ll recycle and won’t waste energy, but a lot of things are just not all that important. They aren’t worth my time. Other things have become more important.

My mother found out she had about a year to live. She had serious, untreatable heart disease. Given the extent of her illness she had a choice: she could try some treatments that would likely have killed her or she could do whatever she wanted with the rest of her life. She elected to discontinue all treatment towards cure and elected a palliative care model. She maintained some medical treatment and decided to spend the remaining few months of her life teaching English in Hunan, China. She sent me email of a regular basis and I heard from the Chinese consulate when she died there. She had a wonderful last year. Probably one of the best in her life.