Evelyn was in her late sixties and had suffered a devastating stroke leaving her in a coma, dependent on a ventilator for breathing and IV drips of medications to sustain blood pressure. She had been in the neurosurgery intensive care unit for 10 days. Initially the care team had some hope for her recovery. Yet, even with aggressive medical treatment, her condition did not change.
As the unit chaplain I stood by the bed along with Evelyn’s closest family members. Her daughter, son, and her brother had been by her side since the frightening day of the initial stroke event that brought her to the hospital. Other family were gathered in the waiting room in anticipation of hopeful updates from the unit physicians or nurses. Evelyn was a retired schoolteacher whose husband had died some years earlier. She was always the one who the family could rely on during difficult times when others were struggling. She was their rock, as one cousin put it.
Standing near I could feel the fear, grief, and anxiety of Evelyn’s children and brother. So much uncertainty. They struggled to hang on to hope as one day passed into another with no real improvements. No glimmers of wakefulness from the woman they cared for. I had learned long ago that in circumstances like this my words weren’t going to make it better. My place was simply to be with them, listen to their concerns and provide support as they needed. The family was now coming to grips with the tragic reality that the Evelyn they knew and loved was likely never coming back to them.
In the early morning family meeting the doctors raised the question of how long to continue treatment. One possibility was to begin to make plans to transfer Evelyn to a long-term nursing care facility, ventilator and all. This could be done after a reasonable period of vital sign stability, with Evelyn less dependent on current IV medications. The social worker would need to begin planning now to ensure a smooth institutional transfer. The other option would be to shift to “comfort care” measures, remove life support, and allow Evelyn to pass away peacefully. Evelyn’s family could sense the care team was already leaning in this direction. One doctor said, “We’ve done all we can do. She’s just not responding.”
The primary nurse who had been taking care of Evelyn since the day of admission asked “What would she want us to do?” After a pause her son answered, “I don’t know. We never talked about this.” The daughter and their uncle also affirmed that this kind of critical medical situation had never come up in conversation. They could not say with confidence what the next step should be.
After a few hours of agonizing discussion Evelyn’s son and daughter decided to pursue comfort care and withdraw life-sustaining treatment. Evelyn’s brother was in agreement. He felt this was the best option given the medical information shared earlier. He had said to me, “This isn’t Evelyn anymore. I couldn’t stand to see her exist like this.” I wondered silently if he was envisioning himself in a similar state and want the same decision made for him.
Some of the extended family in the waiting room were far less supportive. One stated she believed Evelyn was a “real fighter” and that with extra time she could overcome this. Another prayed for the miracle she knew could occur if only the others had enough faith. When the decision was made two of Evelyn’s cousins simply left, clearly registering their disappointment with the son’s and daughter’s final choice. After Evelyn’s death I assisted her family with the phone calls and other immediate necessary arrangements. As I escorted them out of the hospital the daughter turned to me and said, “I hope we did the right thing.”
Evelyn’s case reminds me of so many others I was a part of over my years in the ICUs. In difficult moments of decision some families were unified and easily came to consensus on behalf of their loved one. Other families fought openly. Relations already burdened by years of tension, disputes, and ongoing antipathy saw their divisions magnified by the weight of the crisis. The shared anger and guilt only hammered the wedges between them even deeper. I worried that these individuals might never recover or heal from their mutually inflicted familial war wounds. Whether warring or peaceable in the process of decision-making the common feature of family experience was apprehension and indecision.
Sometimes I have been asked why I came to be so active in the work of advance care planning and supportive of Honoring Choices. It was bearing witness to cases like Evelyn’s and standing with those in of times difficult decisions. Heartbreaking decisions. I too felt burdened by the uncertainty, the guilt, and the anger of so many who never took time in their years together to converse and plan for both the expected and unanticipated critical medical events that sooner or later befall us. “We never talked about this.” The regretful admission uttered by Evelyn’s son was a refrain I heard so many times.
Over the years I became increasingly convinced that we all need to have these crucial discussions with those closest to us well in advance of a medical crisis. It’s uncomfortable and the future events we prepare for are the kinds of things we’d rather not imagine nor talk about. The only thing harder is having your daughter, son, best friend, or lifelong partner standing by your bed in the ICU and not having any idea where to begin when the treatment team asks, “What would she want us to do?”
My hope is that we all be primed with the crucial conversations that will ease the burden of decision-making when the day comes. There will be grief and sadness absolutely. Loss is hard. But if we prepare those we love most with our most important choices we grant them a gift of confidence. We’ll ease their burden with the understanding they can act just as we would for our very own selves if we were able. With that assurance there is some comfort, even in the worst moments. And greater peace for all.
Ken Faulkner is a retired chaplain from the Virginia Commonwealth University Health System. He also taught Healthcare Ethics in the VCU College of Health Professions and served on the medical center’s Ethics Committee. He is also national First Steps Faculty for Respecting Choices, an evidence-based best practice ACP training curriculum. He concluded his career as the Advance Care Planning Coordinator for VCU Health working with Honoring Choices Virginia to promote quality advance care planning across the state.