My grandmother is 90 years old. The doctors have told me that the metal plate in her head needs to be repaired, and if it is not she will likely develop an infection that could lead to her death. However at her age, anesthesia and surgery seems risky, and she will probably never really “recover.” She isn’t able to tell me what she wants due to her dementia. How do I know what to do?
Unsure
Dear Unsure,
Ask yourself this question: if the dementia were not affecting her the way it is, would she believe she has a good quality of life right now? Next, do as you would do with any medical decision for yourself: ask a lot of questions. Ask your doctor if there is medication available that can prevent the infection for as long as possible, and in either case, ask what the chance of infection is in percentages: 50%? 10%? 90%? Find out what effect the surgery and anesthesia are likely to have on her, especially based on other health risks she might have. Don’t be afraid to be vulnerable. Ask your surgeon to put herself in your shoes: if it were her grandmother, would she recommend the surgery? With that information, you can make a more informed decision.
The next item to consider is that even though your grandmother can’t tell you what she wants, you are likely to know what her wishes are about her health and how she operated in life previous to her dementia. Is she a risk taker? Would she “go all out” to have yet another day? Make the decision based on what you believe she would want if she were able to make it herself. Once you’ve decided what to do based on who she is and how she lived her life, rest assured that you are acting in her best interest and don’t try to second guess yourself. It will not help your peace of mind to play “what if” games. I have worked with dementia patients for over twenty years, and the one thing I know for certain is that we have some control over the quality and comfort of life of the people for whom we care, but we have absolutely no control over when they are going to die. We can make decisions, and we make the best ones we can. The limits of modern medicine go only so far, and for good or bad, we cannot bear the burden of guilt. We simply don’t have that much control in this world.