One of the situations where I often found myself called into in the ICU was when families were attempting to make difficult decisions about the future for their loved ones who were under our care. These were nearly always dire decisions. Patients were on life support, which works for awhile, but the longer someone has a ventilator or trach, the greater the likelihood of infection or hospital acquired illnesses. Sepsis was a constant and deadly threat. Nurses would balance the patient's body processes for them, with dialysis and mineral replacement and dietitians would balance artificial nutrition and fluids. Sometimes there is a possibility of recovery, often there is not.
One of the questions that is asked by critical care physicians or palliative care physicians is, "What is your loved one's minimally acceptable quality of life?"
It is not really enough to talk about "being alive." Because "life" can mean barely hanging onto a grasp of this world. It can mean being in a coma, tethered to a ventilator and catheter and central lines, with machines and nursing staff taking care of your body's every function. This is enough for some families. Just the possibility of knowing that their loved one is still present with them.
But quality of life is different than being alive. We talk about being able to communicate and recognize our loved ones and care for ourselves and engage in meaningful activity. I spend a lot of time thinking about what meaningful quality of life would be for me. I would want to be able to communicate (whether or not that involves speaking or another tool for communication) and recognize my spouse and my family. I would want to be able to engage in the meaningful activities that I enjoy such as reading and writing.
For some people, minimally acceptable quality of life includes such things as maintaining hearing and sight, the ability to walk, and being able to complete all their own activities of daily living. These things are not at the top of my list, because I know people who are able to thrive even with these limitations.
But minimally acceptable quality of life varies for everyone. And it is the role of the chaplain in these conversations to be able to help families name this. We would gather our ICU families into a conference room, with social workers and nursing staff and chaplains and physicians present. The doctors would present the medical situation, and other team members would share insights. The family could ask questions, and then attempt to make the decisions that no one ever hopes to make.
Sometime last year (details deliberately obscured) I found myself in one of these family conferences. The patient had suffered a catastrophic brain injury as a result of an extreme sport. The neurologist was mostly confident that the patient would survive, but with significant impairments that would require ongoing medical support and would never live independently.
The family decided to proceed with transitioning to comfort care. To extubate, and remove all medications and interventions except morphine for pain relief. This decision was not made lightly, because this patient had another family member who had experienced a traumatic brain injury and had made it known that they would not wish to be kept alive in that situation.
This was a point of friction with doctors, who often had to persuade families to transition to comfort care after stopping non-beneficial medical interventions. The family's idea of minimally acceptable quality of life was different than that of the medical team. But in the end, it is the patient's decision (or in the absence of decision-making capabilities, the proxy decision maker). And as the chaplain, I accompanied this family through the worst days of their life, made a little bit easier because the patient had made their wishes known about their minimally acceptable quality of life.
It is my prayer that everyone who reads this post would think through what "life" means to them, and share that with family members and close friends. Don't make your family guess. Give them the gift of sharing your wishes.