This week, a short documentary premiered on Netflix. In less than half an hour, Extremis follows several different patients and their families facing end of life decisions, as well as the doctors caring for them. These people were very brave in allowing the film crew to capture such intimate and heart wrenching moments. Everybody dies. We all know that on an intellectual level, but for most of us it doesn’t become real until we are faced with the undeniable fact that we or someone we love is dying. And with the medical technology available in 21st century hospitals, death can often be postponed. The documentary raises many questions, but perhaps the most crucial one is, What counts as life for you?
As a hospital chaplain, I watch people wrestling with these life and death decisions on a regular basis. They agonize over what to do when their loved one is no longer able to voice their own wishes. In some of these situations, the question is quality of life. One of the patients filmed in the documentary, we are told in the end titles, spent her last six months on life support with only intermittent periods of consciousness. I see that happen in our hospital, too. Families want so badly to hold on to their loved ones, and the patients want to stay with them. Letting go is the hardest thing to do. But there are times when it can be a gift.
Some families understand this. I’ll always remember a visit I made to the room of a woman who was on life support, surrounded by her family. Her husband had heard what the doctor had said, that although she had a heartbeat and sometimes moved her arm or leg, the stroke she suffered deprived her brain of oxygen for several minutes. After about five minutes without oxygen, the brain begins to die. Even if the patient can be resuscitated after that time, irreversible brain damage has already occurred. After the doctor left the room, this patient’s husband looked around at his adult children and the patient’s siblings. “She probably won’t wake up from this,” he told them, restating what the doctor had said, “and even if she does, she won’t be her. She has talked about this. I think we’ve all heard her say she never wanted to be kept alive by machines if she wasn’t going to recover. That’s where we are now. I know it’s called life support, but at this point all it’s doing is prolonging her death. She wouldn’t want that.” Tearfully, he asked all the family members in the room if they agreed. They did. The doctor was called back in to hear the family’s decision, and a few minutes later the medical team removed the breathing tube from her throat, turned off all the beeping monitors in the room, and stopped all medicines but the ones that kept her comfortable. The family asked me to say a prayer that she would pass peacefully into the arms of Jesus, and while her daughters sang a few of her favorite hymns, she died.
That, believe it or not, is a best case scenario. When the prognosis is unequivocally poor and the patient has already expressed their wishes about end of life, the choices are not as difficult. The really tough ones are when the patient and family had never discussed these issues, or when there is a chance, even a small one, that some recovery might be possible after a time on life support. This comes up in Extremis as well, and one of the doctors says, “My biggest fear is telling a family there’s no hope when maybe there is.” Even the smartest and most experienced doctors can’t predict what will happen with 100% certainty. And those gray areas are agonizing for both the medical team and the families. Many times, families will say they want “everything possible” done to keep the patient alive, without realizing what that really means. CPR can result in bruises and broken bones. Being intubated can be terribly distressing and uncomfortable for a patient who is conscious at all. Many times, their arms have to be tied to the bed, as we see with one patient in the documentary, or they will use what strength they have trying to pull the tube out.
Sometimes these measures are lifesaving, and doctors do them gladly knowing that there’s a reasonable chance of a good outcome. But other times, as one of the doctors expresses in the film, “My concern is that if we keep drawing it out and keep doing more and more things to her, we’re going to cause more suffering without likely benefit.” I’ve seen doctors I work with wrestle with this as well. They feel that they’re torturing the patient, but the family continues to insist on doing “everything possible.” Sometimes families insist on this even against the patient’s wishes. I remember meeting a woman who was over 100 years old, who had wanted to die at home, and almost did. She was in her own bed, surrounded by family, when she stopped breathing. But her grandson panicked and called 911. Paramedics showed up, resuscitated her, and she woke up the next day in the hospital, hooked up to a ventilator. And she was angry. When she was able to communicate to the doctors that she wanted to be extubated immediately, she gave her grandson an earful. She died later that night in ICU.
For many of the family members in the documentary, their faith is a huge factor in their decision-making. I see this in my work all the time. When told by the medical team that they need to make decisions about life support, some families will call for the chaplain and ask, “What should we do?” And what they’re really asking is, “What does God want us to do?” I can’t tell them that. All I can do is ask them questions about their own beliefs and what they know of the patient’s prognosis and wishes, and pray with them that God will give them the wisdom to make the right decision. Some of them come to the conclusion that one patient’s daughter does in Extremis: “Even though my mom may be in this situation, it would feel like murder to pull her life support.” Others would agree more with the patient’s brother: “If I had to make the decision for myself, then take me off and if I breathe on my own, fine, that’s God’s will. And if I don’t breathe on my own, fine, then that’s God’s will.” Whatever choice they ultimately make, the decision is never an easy one.
But there’s one thing that can make it easier. Discuss your wishes with your family ahead of time, while you’re healthy and lucid, because that can change at any moment. Think and pray and talk with your religious leaders about how your faith might inform these decisions. And even better than talking about it, document your wishes in writing. Advance directives make it clear to both family members and medical professionals what you want, and what you don’t want, when it comes to your care, especially around end of life. It’s something that we offer to every patient who checks in to our hospital, no matter why they are there. As a chaplain, I make several visits a day to offer patients the opportunity to complete a Healthcare Power of Attorney. This week one of those patients asked me, “Do you have one of these?” And I realized that I don’t. I’m in my thirties and in pretty good health, have never been hospitalized except when I had meningitis at age 8, so I fell into the trap of believing that I don’t need one. After nearly a decade of working in hospitals, I should know better. Watching Extremis will give you a glimpse of what healthcare workers see every day, and it does change one’s perspective. I think my fiancé and I need to have a conversation about our own end of life wishes.