Should Advanced Directives Always Be Followed?
A Personal Perspective: When a physician disregards a patient’s wish.
Posted October 2, 2022 | Reviewed by Jessica Schrader
- An expressed advanced directive may not apply to an unforeseen circumstance.
- Fear of being placed on a breathing machine may be related to a fear of suffering.
- Patients may experience dreams even while heavily sedated.
In Part 1 of this post, I described Jordan, my 19-year-old patient with cystic fibrosis (CF), who had suffered from life-threatening bleeding from one lung (after his other lung was removed because it was so diseased). I was facing a critical decision: To put him on a breathing machine (ventilator) given his small chance of survival or to honor his request to refuse long-term ventilation. Jordan’s family had left the decision up to me.
When I have presented this case at medical conferences over the years and asked what choice would have been made by other medical professionals, a large majority have indicated they would have respected Jordan’s wish, even though it was not in writing.
At that time, I thought differently. Since the hospital ethicist told me that either decision was ethically correct, I decided I would make the decision based on my own understanding.
At that moment, a verse came to my mind from the Torah: “I set before you life and death. Choose life.” This was a paraphrase of what Moses told the Jewish people in Deuteronomy 30:19. So, at that moment, I decided to choose life. I thought that if this was the wrong decision, death would remain an option. If I let him die, there would be no recourse.
Other factors came into play in my thinking that day. I knew Jordan and his family very well. I knew that he wanted to live, and that his fear of being placed on a ventilator related to his fear of suffering. Also, I knew that while over the years we had discussed that placing patients with CF on a ventilator when their lungs are giving out only prolongs the dying process, we had not talked about what should be done under an emergency circumstance.
In other words, I chose to allow Jordan to be placed on a ventilator based on a combination of my own beliefs and my deep understanding of his beliefs and fears. Thus, for another patient, I might have chosen differently.
But what of my promise not to put him on a ventilator for a long time? I solved that dilemma by recusing myself as his physician for a few moments, while the intensivist put a large plastic breathing tube in his throat and placed him on the ventilator.
During the next two days, Jordan’s family and his girlfriend celebrated his life at his bedside. I spent quite a bit of time in prayer for him. However, his condition did not improve.
I met with his family to discuss our next steps. We explored the possibility of an emergency lung transplant, but it was not an option. I told the family that we needed to take Jordan off the ventilator as he did not want to be on it. However, as he was heavily sedated, the first step would be to stop administering the sedation. Otherwise, taking him off the ventilator would be tantamount to killing him.
The next day he was awake, while still on the ventilator. I came to see him. There was tape around his mouth and his breathing tube, and his hair was disheveled. He wanted to write a note to me, as the tube in his throat prevented him from speaking. He wrote in small, neat print, “When will you keep your promise?” It was the question I had feared.
“I thought this would give you a chance to live,” I explained. “Do you remember what happened just before we put you on the ventilator?” He shook his head. “Is being on the ventilator as bad as you thought it was going to be?” I asked. He nodded slowly, and my heart sank to the floor.
“Tomorrow, we’ll take you off the ventilator,” I said. “And whatever happens will happen.”
Incredibly, Jordan lived.
We had a chance to talk about the events that had occurred. I gave him back the ring he gave me on the day he thought he was dying. He said he was happy to be alive, and that he had gained a much deeper appreciation of life. He was very thankful for the efforts we had undertaken on his behalf.
He added that even if he had not recovered, he felt I had made the right choice for him and his family. He said, "I’m glad you didn’t listen to me. If you think intubation will be helpful for me again, then it would be OK with me.'"
Jordan also told me of some dreams he had experienced while heavily sedated. In one, my 4-year-old daughter was taking care of him (which was interesting as she later became a nurse). In another dream, Jordan saw himself being driven away from Syracuse in a car without a driver. The car then stopped, Jordan got out, and then re-entered the car on the driver’s side. He drove himself back to Syracuse.
I thought about the lessons Jordan had taught me. Sometimes, it is right not to respect a patient's wishes. Sometimes, an expressed preference does not apply to an unforeseen circumstance. Sometimes, a patient will change his mind. In Jordan's case, my decision to disregard his wishes was based on the relationship I had established with him and his family over many years.
Part of the art of medicine is to learn to recognize the circumstances in which it is best for a physician to make a choice for a patient.
A year later, on a Saturday evening, Jordan called me at home. This was the only time he had ever done so.
“What’s up?” I asked.
“My girlfriend broke up with me,” he said softly.
“I’m so sorry,” I responded. “What happened?”
“I think her parents pressured her. I think that they didn’t want her to keep going out with a guy who is going to die at a young age.”
I expressed my condolences. Jordan then quietly added, “I’ve decided to commit suicide.”
“Why?” I responded in shock.
“I’ve been through the dying process once,” he explained. “I don’t want to put another girlfriend through that again. I’ve put up a good fight. God will understand.”
“Do you know how you would do it?” I asked. I wanted to assess if he was serious.
“I will overdose on pills.”
This was very serious. “Do your parents know of your plan? Have you told anyone else?”
“Why are you calling me?”
“I thought you should know.”
When I have told this part of the story, many of the listeners suggest that Jordan called me so that I would stop him from following through on his plans. On the other hand, I felt that he told me because we were very close, and it was the right thing to do. After all, we had talked about most everything in his life. I did not feel that he was asking me to actively intervene.
I understood Jordan’s reasoning about suicide. He did not want to suffer again. He did not want to search for a new girlfriend because of the pain he might cause her. I also knew that from a medico-legal perspective I should try to intervene.
However, would it be morally right for me to impose society’s values on this patient in his particular circumstances by calling the authorities to thwart his suicide threat? What would that do to our doctor/patient relationship?
I invite the readers to consider what decision they might have made in this circumstance. In the next part of this post, I will share what many medical professionals have told me that they would have done, and what I chose to do.
If you or someone you love is contemplating suicide, seek help immediately. For help 24/7 dial 988 for the National Suicide Prevention Lifeline, or reach out to the Crisis Text Line by texting TALK to 741741. To find a therapist near you, visit the Psychology Today Therapy Directory.
Anbar, R. D. (2001). The closure and the rings: When a physician disregards a patient’s wish. Pediatr Pulm, 31:76-79.