Launching a pilgrimage of kindness

This blog began as a way for me to write about the fruits of kindness. Patients and families would often recount the simplest acts of kindness with immense gratitude, and it seemed relevant to share their stories. Perhaps their gratitude could inspire others. Perhaps my reflections on the varied examples of kindness could create a ripple of awareness for kindness as an essential component of compassionate, quality health care. 

I retired from the practice of pediatrics last month. I can claim 40 years as a clinician, having seen patients since 1982. The last 20 years have been dedicated to solo practice in Charlottesville, Virginia. My labor of love. And for the last 10 years, I added academic medicine to the mix as an Associate Professor of Pediatrics at the University of Virginia. A separate, yet related labor of love. 

In all of these 40 years, in all of the practice settings, I have been guided by something I learned from the dean of the Lienhard School of Nursing, in Pleasantville, NY, where it all began. She taught us that our primary task was to hone the therapeutic use of self. Over time, as we matured, the therapeutic use of our whole selves would guide everything else. Certainly, our intellect, our fund of knowledge would be a mainstay of expert care, and a key component of the whole self. Achieving intellectual competence, especially in training, generally takes precedence over everything else. However, the dean reminded us that our compassion, our communication, our empathy were equal and essential aspects of the whole self and would be needed at each encounter, to be used therapeutically to ensure true quality of care. 

To this list of therapeutic virtues, I add kindness, because it has a simplicity that is easily understood by any reasonable person. As an example, before leaving the bedside, a doctor asks simply, “Is there anything I can help you with before I leave?” Or the nurse arrives with a cup of cool water for the family member who has been up all night with an aging parent who has been admitted with delirium. Or, the clinician stops in the middle of the routine mechanics of patient care to respond with kindness and empathy, when hearing parenthetically about the unexpected death of a grandparent, or pet. Or, how about a simple, genuine greeting and introduction when entering the exam room. I’ve been warned that therapeutic boundaries become tricky when we introduce hugs and tears to the list, but they can also be part of the whole self. 

I am writing this while on a pilgrimage with my son, traveling the California Coast. It is a liminal time for me to explore the transition from doctor to patient. In December I was diagnosed with ALS, amyotrophic lateral sclerosis. ALS is a tragic diagnosis which portends a limited lifespan, and certain progress toward complete disability with the need for total care. There is no cure. The underlying biological cause is unknown, and the few available treatments have limited effect in altering the course of the illness. It’s a harsh reality. 

Many questions arise. What is the role of the self as a doctor-patient? How do I reflect or offer kindness in this new role? How might I engender kindness in the health care setting now that I am no longer the clinician? What are the gaps in ALS care? How can the gaps be assuaged or eliminated, especially those that limit the opportunities for acts of kindness? How does kindness inform advocacy? What are the fruits of kindness as experienced by me, the patient with ALS. And lest we forget, how is kindness germane to those who are walking the lonely road with me, my dear ALS family and friends? https://www.als.org/ https://iamals.org/

The blog returns to reflect on these questions, and to chronicle my on-going pilgrimage of ALS.