I'm finding myself compelled to warn people to make sure they have really talked with their significant other or person who will be making health care decisions for them if they are incapacitated. My husband had a series of heart attacks and stents which lead us to have a lot of conversations about end of life and how much he was willing to go through. I thought I had a good idea of what quality of life he was willing to accept and what procedures were acceptable to him. For example, I knew he did not want to be on permanent life support or kept comatose in a nursing home and he didn’t want open heart surgery. However, when he did have a major incapacitating heart attack, I found myself faced with many smaller decisions on how much intervention we wanted them to take. The heart attack (widow-maker) essentially destroyed the function of the left side of his heart. He came out of the first life-saving surgery at our regional hospital with a 'balloon pump' already in his heart without either of us having any input. He went into A-fib in the ICU and I was asked if he could be sedated, intubated, and put on a ventilator (not permanently, just to stabilize him). Those steps required my permission. He was then transferred to a specialized heart hospital where I was told they had 'more options.'
I never really heard the words ‘life support.’ The questions were an incremental slippery slope of decisions putting him more and more on life support. As I said, they had first asked if they could intubate him and put him on a ventilator (not permanently). My husband’s wish was no permanent life support so that was my guideline. Once he got to the Heart Hospital I was asked if they could put him on dialysis (again not permanently). Next, they told me he would die if he didn't have a heart transplant and they could keep him alive long enough for that if they put a Left Ventricle Assist Device (LVAD) in him which would be permanent unless he could receive a heart transplant. They showed me the pump that would do the work of the left side of his heart and said he would have a cord coming out of his abdomen to a battery pack and the computer/controller that ran it. He would run on batteries or be plugged into the wall or the car. This is where I drew the line and said no. There was no way I was going to wake my husband up and inform him he now had to be plugged in to live. If you knew him, you would realize how hilarious that prospect would be. I told them that if they could get him conscious and he wanted to do it that was fine but that I wasn't signing him up for that life. I heard later this was kind of shocking to them that someone had refused.
The medical team was able to get him through this stage and awaken him. He woke up furious, restrained, intubated, with 18 IVs in him, and me telling him not to move because there was a pump is his heart and if he moved his leg it would kill him. His first question was whether I had allowed them to do this to him. His perception was that he had been put on life support when he told me he didn’t want that. I tried to explain that it wasn’t permanent, and it was the result of many steps and not just one. We hadn’t understood the level of interventions now available and the choices we would be faced with. My husband did eventually agree to the LVAD as a 'bridge' to transplant, but there have been many times he questioned his decision, and he would have been very unhappy if it had been 'done' to him without his knowledge. By the way, if you aren’t eligible for a heart transplant due to age or other reasons, they call the LVAD a ‘destination’ device. Time for a new marketing team.
At any rate, the point I'm trying to make is to make sure you have your living will in order and talk to whoever will be making the decisions because the health care machine takes over and you find yourself on what many would consider life support through a million little decisions. I was clear, at least, on what decisions I knew my husband would want to make for himself and maybe that is the key thing. If you have a particular health condition, make sure you understand what interventions they might offer you as your health worsens so you can consider them while you can still communicate your wishes and put it in writing.
By Anonymous
2021
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