>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?
>Strange how it goes in critical situations. When I was in the ICU with a very bad case of AIDS related pneumonia it seemed all the doctors and my friends thought I was going to die. Because I couldn’t breathe my heart was beating too fast. I refused to be ventilated because I didn’t believe it was that serious and that this was not my time to go. Plus I kept remembering scary ventalator stories a good friend from my teenage years, who worked in the ICU as a nurse, use to tell me. ‘Never go on a ventalator’ she warned.My family had no idea what was up so never came to the hospital which was a good thing I thought at the time, still do. Maybe they, like my worried friends and doctors, would think I was about to die too? I managed my way back lowering my beating heart by meditating through it all. I hardly slept because I was afraid if I fell asleep I might not ever wake up and must have lost 50 or so pounds sweating it out. But it was the nurses who understood I was winning the fight and helped me prevent the doctor from inserting the breathing tube down my throat. The nurses were my family.
>I think you say it just right. What does acceptable recovery look like for this patient. I had a family member in critical care, and a neurosurgeon kept telling all of us “full recovery.” I’ve worked in a hospital doing bioethics research, and my mom has spent her life as a respiratory therapist, so we were immediately suspicious of this phrase even being said. But other family members had no experience that would tell them anything but to believe what this surgeon was saying. Eventually, we had to corner the doctor and get him to spell out exactly what he meant by “full recover.” And he meant, regaining consciousness, being able to talk, maybe walking … but needing diapers, serious frontal lobe damage, and other problems. Probably an unacceptable quality of life for this man. The better we all can get at communicating the acceptable quality of life for us, our loved ones, etc., in advance directives and backing it up with conversation, the better off we are. Great post!