Healing Into a New Future for the Patient Experience

April 11, 2014

Coming from the rich experience at the Beryl Institute Patient Experience Conference this past week, I want to share some of my own takeaways. We heard from so many wonderful speakers, but more important, we heard from each other.

And we listened carefully, consciously — in ways often passed over for the sake of the tasks in front of each of us. Bearing witness to another’s suffering and vulnerability, and owning our own, is the key to healing the wounds of isolation that comes from acute illness.

The nature of patienthood is one that is lived a person at a time, each unique in his or her story, and each unique in the ways illness can change the future. Nonetheless, the patient experience movement forces us all to look at the human conditions of suffering and healing in ways that evidence-based medicine has tried to avoid.

Evidence-based medicine originally included more than just scientific outcomes. It included the patient’s unique circumstances, values, and preferences. This has been set aside for the sake of standardization of practice.

However, none of us are “standard,” nor do we want to be considered so.

I was moved by Brian Boyle‘s story, where he so precisely described his two months in a medically-induced coma after a catastrophic auto accident that left him able to hear and remember, but unable to respond. He talked about the spirit-saving value of those who spoke to him and included him in their discussions with each other, even when he could not respond.

Brian shared his confusion in only hearing bits and pieces about what had happened to him and his narrow hope of survival while his young 18-year old life had come to an immediate halt.

Sometimes I think we live in a world of people who are in socially-induced comas, unable to respond, hidden from view, and often ignored.

I was also moved by the commitment of those at the conference to step in the world of our shared humanity and begin valuing our ability to connect — one person to another — to heal the suffering that is inherent to the patient experience.

As a former patient, my experience is now part of the mosaic of my life.  My recollection of my hospitalization last June, while now more integrated into a larger perspective, has become more meaningful with time.

Every aspect of what happened to me is not as clear as the people, the endless lonely nights, and the day to day angst I lived with while in the hospital. I remain grateful and humbled by the profound service provided by those who care for the ill.

The patient experience lives in each of us, one person at a time, one story at a time, one life at a time.

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