A review of what happens when you don’t communicate what you want to your designated health care agent or proxy.
A recent New York Times article tells the unfortunate story of a 79 year old man who had created an advanced directive (known in Massachusetts as a “health care proxy”) before suffering from advanced dementia. His directions were specific: in the event of a life threatening condition, he wanted comfort care only – no heroics.
Unfortunately, after his advanced dementia, when he was unable to communicate his desires, he got an uncontrollable nosebleed. His nursing home sent him to a hospital, where he was put on a ventilator, underwent two surgical procedures, was transferred to another hospital, received a tracheotomy and had a feeding tube implanted in his stomach.
Although advanced directive was in his medical chart, nobody noticed it until after all of these procedures took place. His son, who had authorized all of these heroic treatments, had never seen a copy of the directive, and, apparently had never conversed with his father about it, so he didn’t know what his father wanted.
This experience is, unfortunately, common. Many in the medical field, particularly workers caring for the elderly in the last stages of their lives, have grown less enthusiastic about health care directives as a result.
Many people take great care to have health care proxies and specific situational directives prepared to avoid unwanted care that can do them no good – to have the story of the end of their lives be one of dignity – not unnecessary, fruitless medical procedures. Unfortunately, these carefully drawn documents often don’t work, because they go unnoticed, or the very people designated to speak for the patient and see that wishes are followed, are unaware of what the patient wants.
To add to the problem, our medical system is built around the natural desire to preserve life and fix emergent medical problems. So, in spite of everyone’s good intentions, the overall end-of-life story that the patient may wish to write can get lost in the shuffle.
The solution is simple.
The most effective way to have your health care wishes followed is to communicate them to the people you want to carry them out for you.
Your Massachusetts health care proxy is only effective when the doctor treating you determines that you are unable to make or communicate medical decisions yourself. So you have to communicate your wishes to the person who will be making those decisions for you before that happens.
Our 79 year old patient and his family could have avoided his unwanted treatment simply by having a conversation with his son.
That’s not an easy conversation to have. Most often it’s a topic that family members don’t want to discuss, so persistence is required.
It’s worth it, though! Otherwise, that document you so carefully put together could be useless – it just might not work!