Today was the most exhausting day. It’s difficult to work with families in hospice care that don’t understand the hospice philosophy, and that are in denial that their loved one is dying. Yes dying. One day we will all die, and the question I ask all of you is, what will make your death a peaceful one?
I have a patient in my care who no longer wants to go to the hospital, in the hospice world his palliative performance scale is what we consider 10%. This patient is close to dying. Of course, I cannot predict a person’s death, no do I want to. But in the world of hospice we see patterns that are fairly typical for disease process, of course there are always going to be outliers that don’t fall into patterns.
My patients daughters have stated they don’t care what their father wants, if they think he needs to go to the hospital for treatment, they will override his wishes. So I was sent out to see this family and educate them on calling 911 vs. calling hospice since their father has elected hospice care at this time. While sitting there with two of the sisters, the paramedics arrive and I realize that another sister, who had not yet arrived, called 911. Fortunately paramedics see things like this all the time, although it doesn’t make it any easier. The paramedics were able to educate the family that the pt. was stable for his current condition but that what they were seeing was typical disease process for a dying person.
My poor patient. This man did not want to go back to the hospital, and thankfully he didn’t. People may not always be able to verbalize what they are thinking when they are so close to death, but I believe a person is still present inside their body and aware of what is going on, he just might not be able to communicate it.
When I was in Clinical Pastoral Education I watched a movie called The Dive Bell and the Butterfly, it was a book written by Jean-Dominique Bauby about his experience and life following a massive stroke. I highly recommend this for anyone who has ever encountered a person whom they think cannot understand or is not present in there body.
A large part of what I do in hospice is help educate people about end of life, and support them through their coming to terms with a loved ones death, or following their loved ones wishes even if they are not their own wishes. But education can only go so far if a family is not ready to accept end of life. I do the best I can to advocate for my patient’s wishes while supporting their family, and holding in tension that the ultimate decision of what a family member chooses is not mine to make.
Sadly my patient’s daughters again called 911 when they found he had died, and by law if a person is not a DNR, paramedics have to perform CPR even if it is clear the person is dead and was in hospice. Thankfully my patient was dead and hopefully didn’t feel the pain of having CPR performed on him. As sad as I think it is, I do believe this is what the family needed to have done so they could have felt like they did everything in their power to keep him alive, and ultimately because the family held medical power of attorney they are the decision makers.
So today was exhausting. Death is exhausting.
If you have never had conversations about what your wishes are when you die, I encourage you to have those difficult conversations with your family. If what you wish for is something that your family cannot follow through with, then I encourage you to find a person you trust that can make your end of life wishes known and advocate for what you want. Families ask me all the time if a medical power of attorney has to be a family member, and it does not. So think about what you want. Pray about what you want and how that goes along with your beliefs, and then talk with your family. Death is hard enough for anyone so help your family or friends out by making your wishes known.