One of the things I feel passionately about is end of life care. My personal experiences coupled with what I have seen in my work as a nurse have shown me how important it is to consider these things and communicate them in a meaningful way to one’s family. Mother was “the picture of health” before she died. She had attended two funerals fairly close together in the months before. About a month before she died, she drove to a “girls weekend” with her sisters and mother. During this drive, she thought about what she did not like about the services she had attended, and pondered what she would like hers to be. She told her family about it when she arrived, and told her children (my brother, my sister, and me) when she returned home. She was 48 years old and completely unaware of the aneurysm that would kill her so soon after these conversations took place.
I cannot even begin to explain what a gift knowing these wishes was to my family. Mother and I had spoken often about organ donation. I had no doubt in my mind what she wanted to be done. Signing those papers was one of the hardest things I have ever done, but I had not one single doubt that I was doing what she wanted. I wasn’t making a terrible decision; I was carrying out her wishes. The funeral plans were much the same gift. As we stumbled through those days feeling numb, dumbfounded, and in shock, many of the choices were already made. We knew to tell people to wear bright clothes instead of black. We knew she wanted to be cremated and buried in Jacksonville where she grew up. We knew she wanted a “biodegradeable urn” (and this was long before Green funerals were being discussed at all. We knew she wanted a traditional Catholic funeral, and that we were to focus on celebrating her life rather than mourning her death. It didn’t make anything easy, but it made many things far less difficult than they would have been.
Interestingly enough, I have not put my health care wishes to paper in a formal manner. Everyone knows what I want, and I have no doubt that they will do their best to fulfill my wishes. Putting pen to paper is fairly high on my “To Do” list in the next few months. I have written out my funeral plans, but it was 2 blog sites ago, and not easily accessible. I need to correct that.
I know I am the person named as Power of Attorney for Healthcare in my father’s documents, but I know I need to have more conversations with him about the details. He is a bit resistent to this conversation, but I will pester him until I get what I need. I know he doesn’t want to be on life support if he is terminal, but there are many questions that might need answering before “terminal” is part of the dialogue. What things would make life worth living to him? What exactly does “quality of life” mean to him? Deciding not to do CPR or put someone on a ventilator is one thing, but deciding to stop tube feedings, IV fluids, or antibiotics is more difficult.
When I talk to patients many of them tell me that their documents (if they have them) are in their vaults, safes, safety deposit box. I understand why they are there, but I tell them to make a copy and put it in the glovebox of their car. They often look at me like I’m nuts. My thought is this: if their level of health changes quickly, which family member will want to leave the hospital to fetch the papers–much less have easy access to said papers.
Morbid thoughts? I understand how this may be seen as such. However, I have seen families suddenly in crisis not having discussed any of these issues appropriately. Having had the experience of planning an “unplanned” funeral, I can honestly say that knowing what Mother wanted made everything far easier than it would have been. Give your own families the same gift.
One of the most comprehensive articles I have ever read on the topic is linked below. It is long, but worth it if you really want to understand the situations people face and the multitude of decisions that must be made.
I’ll be back to complaining about some superficial things in my next post, but feel free to email me if you have thoughts, questions, or would like additional information.