From doctor to family: Witnessing both sides of end-of-life care

We all have those moments in medicine when we know that care has become more futile. Then we do everything in our power to educate, support, gently guide, and give permission to patients and families. There are moments that treating for a cure goes against our tenet to “first do no harm.”

I never would have imagined that I would be on the family side of these debates. I had a very dear relationship with my grandmother, who had advanced directives in eight different states, being very clear that she was not going to have heroic measures in her 70s and 80s. Despite her wishes, she wound up intubated, and it felt like our family was judged by her physicians for asking to discontinue care. My father, most of his six siblings, and my siblings were all part of this tense time. In the end, we were able to have her home and comfortable as she would have wanted.

It came as a personal blow when 20 years later, my siblings and I sat next to my father’s hospital bed, scared and sad. After a large hemorrhagic stroke on top of his type 1 diabetes, he was teetering. He and I had conversations for at least 30 years prior about his eventual death. He was as assured as my grandmother, but not as thorough of a planner. His wishes and thoughts were musings on paper, not codified or translated into the relative clarity of medico-legalese.

“Teetering” implies the waxing and waning moments in ICUs. He was not quite at the freefall that can bring reality to sharp focus. In the first days, a physician painted a grim picture but offhandedly said that there was always a possibility that he could wake up in five days. I’m still not sure where five days came from. My siblings heard something different than what I did, and they grasped the idea of life as hope. Survival was paramount. The survival I saw was suffering for my father. And even that shred for survival seemed like sand slipping through my fingers.

We all clung to the things that gave us conviction or hope. My brother, the lawyer, read every word we could find that my dad had written about his wishes and saw every loophole. My sister, the nurse, watched every number, every flicker, and she ate up every well-meaning hopeful word from his nurses, interpreting empathy as possibility. I watched moments turn into hours slip into days. I watched the roller coaster of status tip up and slide down. My dad hated roller coasters, and those were moments I hated my siblings for keeping him on the ride. There were times I could not imagine us being close after this.

I watched his physicians’ eyes and their bodies as they talked to us. I know they saw my distress. Specialists and his regular physicians sat with us, listened to my family’s questions, and offered kindness along with medical advice. They gently helped my siblings let go of futile searching for treatments. As my father began more actively dying, instead of escalating care, these physicians gave permission for my family to be sad together instead of desperate or angry.

The healing we were provided as my father’s status changed to palliative care saved my family. In my own blind conviction, I could not manage my siblings’ fear or guilt. They needed objective, kind, and clear words from my father’s physicians. They needed the gentleness of the palliative care team easing him out of his suffering in order for us to begin to heal our own. Sometimes we have the opportunity to heal our patients; other times we can heal families or communities. I am grateful for all of the healers who recognize this.

Jessica Bloom is a family physician.


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