As my mother bounced from hospital to rehab to hospital to rehab to hospital to rehab and back to hospital again, she became more and more frustrated. As she fought one infection after another, she became weaker and weaker. As medical professionals persisted in employing all manner of tests, procedures, and surgeries to try to extend her life, despite only a tiny possibility of success, she became more frail and more sad. She knew there was very little anyone could do to increase the time she has left. She could also feel the quality of that remaining life spiraling downward each day.
Most people will tell you they wouldn’t want to undergo any extraordinary or invasive measures if they were in my mother’s condition. It isn’t as simple as that sounds. The trick is in defining “extraordinary and invasive measures.” By the time my mom was in the hospital for the last time, nearly everything qualified as invasive from her perspective. And her perspective is really the only one that matters. She didn’t want any more hospitalizations, surgeries, medical tests, or IV lines. She didn’t want to move out of bed or do therapy. She certainly didn’t want a feeding tube or, even, to be badgered to eat when she didn’t feel like it. Sometimes, people feel like this because of depression and that depression can be managed with medication. In my mother’s case, it felt more like she just wanted to be comfortable. For whatever time she had left, she wanted to be able to decide not to put herself through anything that she found painful, uncomfortable, or annoying.
It wasn’t easy getting to this point. Because of the stroke, it is sometimes difficult to understand what my mom is thinking and feeling. Her language is definitely limited and she is very hard to understand. At times, it seems certain that she is thinking clearly, even if she cannot express herself very well. At other times, it seems like her cognitive ability is impaired as well. In addition, it was difficult for me to find the place in my mind and heart where I could let go of what I wanted and concentrate on figuring out what my mother wanted. I considered what I know of my mother’s views from before she had the stroke. We had numerous sad, cobbled conversations about life and death after the stroke. I am pretty sure I understand what she wants. She chooses to let go of trying to get “cured” and live whatever time she has left with comfort and some modicum of control.
As difficult as it was for me to face this crossroad and as difficult as it was for my mother to come to this choice, it is even more difficult to convince the medical system to let go of “cures.” Fighting this battle requires clarity of mind, courage of conviction, and persistence. Take it from someone who could barely articulate the choice without crying. You will probably have to cry often and painfully if you are trying to help a loved one free herself of unwanted, invasive medical procedures. This is especially true when the loved one has a disease that isn’t causing unbearable physical pain and doesn’t have a clear, common progression towards death in the immediate future.
I don’t really blame the medical establishment. Hospitals, rehab facilities, and most doctors are charged with curing and preventing the risk of further damage. They have legal liability if they don’t do everything possible to try to “cure.” Their collective mindset is to look at the patient as a problem to be solved. They will usually keep trying to think of something else to do, some other medication to try, some different procedure with which to tinker… just in case something will help. If one thing doesn’t work, they try something else. If you have decided to forgo the small chance of a “cure” in order to have peace in whatever time you have left, you will likely have to repeat and argue your position over and over again with the mainstream medical professionals. Working with most medical professionals in that situation is rather like employing a dance instructor when all you really want to do is buy tickets to a ballet… and the dance instructor finds it morally repugnant that you don’t want to don a tutu.
You may think that the answer is simply to stop engaging with doctors and other medical professionals. That might be an effective strategy but for one reality. By the time most people are ready to stop fighting for life at any cost, they also need medical professionals to help with symptom management and assistance with activities of daily living.
Just when I thought I could not articulate my mother’s wish to refuse any more medical intervention one more time, one of the doctors at the hospital mentioned “hospice.” He was pretty judge-y about her choice and made me feel horrible discussing it. At least, though, he led me to the proper vehicle for implementing it. Apparently, identifying an individual as a “hospice patient” helps to indemnify the doctors, hospitals, etc. against litigation. It is the formal way a patient and her family to go “on record” as not expecting the medical folks to try to extend life. It gives permission to change the focus of the care from “cure” to “comfort.”
When someone mentions “hospice,” it often feels sad and defeated and scary. People tend to think it means the end of a life. It certainly can. Hearing the word “hospice” did feel like someone was prying a chunk of my heart out with a hot knife. Still, when I was able to wrap my mind around the idea, the hospice counselors were a huge help in explaining the program, giving me an idea of what to expect, and validating that the choice we were making was a morally valid option.
Hospice care is usually available for people expected to pass within the next six months, but no one ever really knows for sure how much time anyone has left. In my mother’s case, the choice to embrace the hospice path means something quite different than a choice to let go of life. It means a choice to stop struggling. It means a choice to live the rest of her life on her own terms. It means a choice to spend her time engaging with her loved ones. It means a choice for freedom to spend the rest of her life in comfort and dignity. It is a choice for peace.
Does anyone else have a similar experience that they would like to share? It might help someone else who has to go through a difficult time. Please share your perspective by leaving a comment. In the alternative, you can email me at firstname.lastname@example.org.