This week I met with the family of a man in his late sixties who had had undergone emergency surgery for a bowel obstruction and then had a cardiac arrest after surgery and now was in a vent-weaning facility. Second wife, three adult children, one adult grandchild. The patient was lying in bed attached to the ventilator by his tracheostomy, otherwise appearing serene and unbothered. Completely unresponsive, and no wonder, he was receiving a considerable load of sedating medications. When the sedation level was lowered, to test his potential to breathe on his own, I am told that his appearance changed totally, breathing rate increasing into the 50's, anxiety and panic transforming his expression. Still his physician remained hopeful that he was making some progress towards weaning from the vent.
The family was lovely and in agreement about wanting what was best for this man. They had no doubts that he was receiving excellent care. One of his daughters was a social worker who worked in a nursing home who told me that she often helped her elderly patients to fill out advance directives. The patient and his wife both had spoken about what they would not want done in an event just like the one I am describing. He had a written, legally recognized advance directive saying that if a trial of artificial ventilation did not suffice, he would not want prolonged ventilation, would not want dialysis, would not want to be fed through a tube. But here he was, after a long hospitalization, now in a hospital devoted to long-term ventilation care, sedated, with a trach, on a ventilator, with a feeding tube.
The wife told me that he had an "ominous" feeling about the surgery and had reminded them of his advance directive as they wheeled him into surgery. The family agreed that his health had been very poor over the past year, due to chronic heart, lung, and kidney disease, and that he often talked about not wanting to live if he would have to reside in a nursing home. They had only recently been told that if weaning from the vent was successful, he would face another 6-9 months of rehabilitation during which he would need to be highly motivated to relearn to walk and do ordinary self-care activities. Knowing him, they doubted that he would have this motivation. He had been miserable during cardiac rehabiliation after a previous heart attack. In fact, it is not an exaggeration to say that this family was wracked with guilt that they were doing exactly what this man had told them he would never want.
How did this happen? Of course, I have changed the details of the story, but it is one that I frequently come across in my work. I don't know the answer, but I do think part of the problem is that we fill out advance directives (those of us who do this task at all) with our minds. Emotionally, we have no sense of what we are saying or doing. We do not go that extra mile to really imagine being in the situation we are saying no to. The persons that we ask to speak for us in our extreme vulnerability have no idea what we are really asking of them. And then on top of this, no one along the way sits down and describes how the "rest of the story" is likely to unfold. Families get told that "the kidneys are doing better today" or that "he has a good chance of breathing on his own if we give him a few more weeks". The most likely outcome--that he will go from the hospital to a vent weaning facility for four months and then to rehab for 9 months and possibly never return to being able to dress himself--is not revealed. It's the combination of "piecemeal" optimism, inability to predict outcomes very well, and the failure to find out from the family what an acceptable recovery really would look like for this individual that combine to create unbearable pressure against following the directives that we agree to adhere to in the name of patient autonomy.
Perhaps we all lack the courage of our convictions. Or perhaps there really is no such thing as autonomy, no value in advance directives. I am thinking today, at least, that there really is no such thing, it's an illusion that we are all complicit in. Outcomes, decisions, stories, families, healthcare providers, lab results, God, CT scans, emotions, legacies, factors innumerable ... somehow combine in an unpredictable forcefield along a path that no one controls.
Today, I can't think otherwise. How else can I understand this story?