I have people call me from the hospital in deep distress. You can write the most thorough living will on the planet and still find yourself bedside with a scenario you were unable to conjure up just a few months before. And those scenarios are almost always really GRAY.
I think when we are thrown into the deep end we tend to rely on THE PROFESSIONALS. Take for example my roof. There are some obvious problems, like leaks and suspicious patches of peeling paint. I will have a few roofers look at it to decide what to do. If those roofers come back with "You definitely need a new roof, it's about to collapse" or "It'll do just fine for 10 more years if you do a patch job around the chimney". I can't very well wander around up there myself and figure it out. I have nothing to add because I have zero experience. I have to rely on the professionals. If they disagree I am by myself in a no man's land. Roofs aside this is exactly what happens in hospitals every single day.
People are required to make very serious decisions about medical treatments while relying on doctors that may very well be unable or unwilling to give them the information they need to make those decisions. I recently read a study where the longer you know your doctor the worse they are at being honest about your condition, instead choosing hopefulness. They are also much more optomistic about predicting how much time you have. And the ultimate tragedy, they continue prescribing treatments even though they are futile. They are unable to draw the line. Where does that leave their patients?
Take my friend whose mother at 78 was a very healthy active woman until she had a stroke that left her without the ability to speak coherently. It was clear to my friend that his mother could still think clearly but the words coming out of her mouth where out of her control. She was doing the normal rehab but then developed a very serious blood infection that if left untreated would kill her. The treatment involved a very risky surgery that she had a 50-50 chance of surviving. If she did survive she was in for a long, slow and very painful recovery. The ability to speak may come back thru a lot of rehab or it may not. What to do? This is when he called me. I asked him what he thought his mother would want. He didn't know. I asked if she was a fighter. He thought not. I asked about his father's ability to care for her long term. He said his father would do anything for her. I told him to get a palliative care consult. He did and aferwards was leaning toward not doing the surgery. They would rather bring her home and enjoy what time they had left with her. He called a day later and said his cousin was a doctor and had told them "Imagine a great foggy lake, you can't see across it. You need to put your mother in a row boat and give her the chance to row across the lake because if you don't you will never forgive yourself." And with that they decided to do the surgery.
To me, tagging "you will never forgive yourself" to anything connected to these conversations is unfair. We are all doing the best with what we have in front of us without laying these heavy trips on each other. There are plenty of surgical outcomes that one might second guess in hindsight.
Thankfully she made it through the surgery. The recovery has been long and painful and included a feeding tube for a bit. Initially she was despondent but eventually came out of it and is slowly rehabbing. Her ability to communicate hasn't come back yet.
Many of us will have to learn where to draw the line, either for ourselves or our loved ones. So how can we think about this ahead of time? Is it even possible to prepare ourselves?
In my personal life I think a lot about how temporary everything I hold dear is; life, friends, family, my health and the health of those I love. I remind myself of this as often as I can. This is a key step in preparation because I know that the moment is waiting for me at some point unless I die suddenly.
The other thing I ask people who are faced with these decisions is "What is the hardest thing about your present state of health?" My friend Elisabeth who is an oncology nurse told me about this important question. Perhaps it is being in near constant pain, or being dependent on others/a burden to loved ones, or perhaps it is being stuck in a hospital. Whatever it is, will having the procedure most likely bring you more of what is hard? And also "What brings you joy?" Will the procedure most likely bring you more or less of that? These questions don't get you out of the no man's land entirely but they give you some beacons to shoot for and some rocks to avoid.
There are some pretty on the money Palliative Care PSA's going around. One is "No holes without goals." This refers to treatment procedures that involve having a hole put in your body. Before that happens make them be clear with you about what the goal of the procedure is. If it is "more time" make sure it is the right kind of time. More time suffering is not what anyone has in mind, but unfortunately in the medical world "more time" is a goal in and of itself.
It is my hope that as we become better advocates for a quality of death, we will give doctors permission to be more honest and realistic not purveyors of false hope. Hope that leads us to make decisions that do not secure a death that is in line with the values by which we have led our lives.
I am a trained end-of-life doula. I provide guidance and support for individuals and families during the end-of-life process.