I attended a lecture this week where the topic was “Miracles and Medical Futility.” The case being presented by a panel of doctors and nurses and a hospital chaplain was of a family that wanted the medical team to take every measure to keep their dying family member alive, so that God could work a miracle. The medical team, felt that they were causing great suffering to a body unable to physiologically recover by continuing “care” and that the medically ethical thing to do would be to let this patient die. Furthermore, they were using valuable resources on this patient, like blood transfusions, that could have gone to another patient with a more favorable prognosis.
Enter the dichotomy: God v. Science, Family v. Professionals, Hope v. Reality.
So much of the discussion centered around how to align the two parties. How to stop pitting the two sets of values against one another and find common ground. Could physicians steeped in their scientifically backed understanding of the body make space for God? Could a family steeped in religious conviction make space for biological limits?
To me, common ground seemed like the wrong target to be aiming for. The wrong conversation to be engaging in.
My mom has said, on several thousand occasions, that if her quality of life declines to a point that she no longer wants to be alive, it is our duty as her children to take her out into the pasture and “put her down.” This is not a turn of phrase. We have a family farm. The pasture is a real, geographic location. My mom simply wants us to extend to her, the same kindness we extend to our animals who are suffering.
I grew up in a household that talked death. My first research project when I was in third grade was on Dr. Kevorkian, the famous proponent of physician assisted suicide. Perhaps it was that my mom’s mom died when she was just fourteen that made it paramount for her to discuss death with us. And so we did. And so we do. There is a file in my parent’s home called the “Dead Parent File.” A step by step guide for what to do when the day comes. When I was home most recently my mom was busy reading The Gentle Art of Swedish Death Cleaning. “Let’s read it out loud!” she suggested gleefully after dinner, “It’s fantastic!”
My mom is one of the least dying people I know. She is 63 and teaches about twenty hours of yoga each week. Each year on her birthday she sends me a picture of her doing a headstand. She eats rice and beans and mountains of kale. She runs and swims and knits and canes chairs and feeds cows and does the crossword puzzle and writes books. She is very alive. And very obsessed with being dead when she can no longer be very alive.
We joke with my mom that her tombstone will read, “Here lies Robin, she once sprained her ankle.” Because several years ago when she did sprain her ankle and she had to slow down on her activities for a bit, she was morose.
The truth is, what constitutes a “quality life” is a moving target. Perhaps my mom will decide, as she ages, that life is still worth living even if things get compromised. But I know she has a threshold where being alive for the sake of being alive will not suit her. And this is why she likes to remind me and my brother that it is our duty, when that day comes, to take her out in the pasture and put her down. When we roll through this familiar conversation, I remind her that this is why she had both a son and a daughter, and it is decidedly her son’s job to carry out that task.
But even having brow beating, explicit permission to help my mom die when the time comes (which to be clear is not going to involve a shot gun in the pasture, but perhaps will involve fighting on her behalf to make sure her “do not resuscitate” orders are fulfilled), it’s still a terrifying idea. I don’t want to be the one who pulls the proverbial plug on my mom. Even though I know it is what she wants.
I want that burden to live with someone else. And I was thinking as I was listening to this discussion about this family who was waiting on a miracle, that perhaps the medical teams goal should not have been to get the family to align with their perspective or for them to align with the family’s perspective, but rather should have been to bear the burden of being the “bad guys.” Of being the ones who let the family down, and let the patient die.
I learned in my years as a teacher that part of my job was being a vessel that received parent’s pain. I worked in residential schools with some of the most remarkable students and families I’ve ever encountered. Truly—they were/are some of the best human I’ve ever met. And still, letting your young teenager fling the coop early, and start to discover parts of their identity away from you, challenges even the most remarkable parents. And sometimes in their fear about their child’s struggles or suffering they would lash out. At first when this happened, I was desperate for the parents to know that we were part of the same team—that we both wanted what was best for their child. But eventually, I realized that that wasn’t the most important outcome. The most important outcome for those conversations was to hold the parents fear and grief and to serve the student in the best way I possibly could.
And so as uncomfortable as it might be, I think perhaps the duty of people in the helping profession is to be both a vessel and a shield. Shielding your identified client from undue suffering and becoming a vessel for the grief and pain of the constellation of other people who surround your identified client. It’s an un-enviable position. And one in which you will never be “right.” But being right shouldn’t eclipse being helpful, especially to those who are suffering unimaginable loss.