I have been a patient and a doctor, on both sides of the bed. I have sat with injured people, processing their trauma. I have also been the wounded person, working with a therapist on my trauma. This duality is both my burden and my strength.
I have been bored and exhausted, slogging through an 8:00 PM appointment, driving home afterwards in the dark winter night. I have experienced exasperation with clients who laze through sessions, neglecting the homework I carefully assigned. I have bitten my tongue, or regrettably, sometimes not bitten my tongue, under the weight of too much work.
On the other side, I have had nurses who forgot about me while I lay in excruciating pain. I have missed meals because no aide remembered to bring me my dinner tray. Anesthesiologists have put me to sleep against my will, forcing a mask over my face while I writhed. Nurses have ripped off my bandages while I begged them to stop.
I know both sides.
I think compassion is our most vital healing tool, but the one we least prioritize. I’m impressed my surgeon knows all the latest techniques, having inventing some of them herself. I’m grateful to heal without infection, my scars gradually laying flatter and smoother. But you know what keeps me returning for surgeries? My surgeon makes me feel safe and valued. The whole burn team surrounds me with love. That is how I can continue my burn care, even though the procedures scare and hurt me, every single time.
As a patient, I thirst for connection. My gut instantly recognizes the staff who care, who know my name, who want me to feel safe. Some staff look me straight in the eye and see another human being - not a “patient”. They smile freely and converse, instead of gazing with detachment at the computer screen.
To be sure, I know how to prime that pump. Years of hospitalization as a child, all alone, taught me how to engage staff. I had to figure it out because I had no parents to help me. I learned to make eye contact, to call nurses by name, and to ask how they were doing. I knew how to make myself stand out, so I was not just the patient in “Bed 4.” I became Lise Deguire, valiant burn survivor, the one who is charming, funny, and thoughtful.
I work hard to engage my care team, and I am good at it. But, let me tell you, it doesn’t always work. Last year, I was briefly hospitalized for what turned out to be a kidney stone. The E.R. nurse could have cared less. She didn’t smile or even introduce herself. She did not show the slightest concern for my pain.
I smiled and asked her name. I chatted about the evening. Nothing... I got nowhere. Finally, I said, “Has COVID been tough for you?”
She snorted. “I haven’t had a vacation day in a year.”
“Yes, a year.” Even after this brief bonding moment, I could not connect with this nurse emotionally. But at least I understood why. Her compassion tank had run bone dry.
As an adult, I refuse to see doctors who don’t show care for me. Every doctor I see, from my primary, to my G.I., from my dentist, to my surgeon, every one of them is kindly engaged. The technical excellence of the doctor is not my only priority, foremost they have to care.
Compassion isn’t measured by hospital surveys or touted as outcome measures. You don’t read about the “most compassionate surgeon” in U.S. News and World Report. But ultimately, people seek compassion as much as any other outcome. Sometimes in my practice, physicians and psychologists seek me out for their personal psychotherapy. It used to surprise me, as there are plenty of psychologists who are more accomplished, psychologists who publish and develop new techniques. I am a solid clinician but not nationally known.
You know what I am though? I am reliably compassionate. And that is what people crave when they hurt.
There are, sadly, plenty of cases where there isn’t much to be done besides compassionate listening. A client loses her only daughter. Another client has three months to live. Another client dives wrong and is rendered permanently quadriplegic. Yes, we can work on dysfunctional thought patterns and understand their trauma history, and these techniques will help. But I think what really heals people in dire circumstances is compassionate listening, listening with an open heart. I suspect my own history of medical trauma helps me stay extra-caring. I know compassion is crucial when people are scared out of their wits.
Compassion is at least half of what heals us, and maybe more.
Suppose we prioritized compassion in health care? Suppose there was a procedure code for 15 minutes of compassion. Imagine a doctor or nurse pulling up a chair by your bedside, talking about life, asking you how you are feeling, maybe holding your hand. There are nurses who do this now, truly they are, but they grasp for the stolen moment, between documentation and bandage changes.
Recently, I had the honor of addressing the American Burn Association, where I spontaneously coined the phrase “micro-moments of kindness.” I wanted these busy, over-worked providers to know that even the smallest of interactions can be healing. Yes, 15 minutes of compassion would be better. But even one minute of kind, gentle listening profoundly impact patients.
Sadly, compassion has become the occasional bonus gift, as opposed to the most fundamental healing element of all.
Suppose we offered professional recognition for compassion? Suppose we gave regular training on the importance of compassion? Suppose we also treated health care professionals with compassion, so that their tanks didn’t run dry, like that E.R. nurse last year.
A hospital administrator once told me that delivering compassion was “my job,” as the staff psychologist. That same administrator later outsourced this job, eventually eliminating it altogether. Compassion doesn’t make money, I guess. (Or does it? Because like I said, I only return to doctors who are kind.)
We assume health care professionals will be , despite being overworked, traumatized, and given no priority. Even in my profession, psychology, compassion is assumed to exist, without specific training. We really don't talk about it much.
From the patient side of the bed, the people I want are:
- Anthony, the aide with the kindest brown eyes, who smiles broadly when he greets me at the burn unit door.
- Michelle, the nurse, whose forehead frowns with silent sympathy when I cry in pain, and who works diligently to help me heal.
- Jill, the nurse-anesthetist, who moves heaven and earth so that the anesthesia process doesn’t re-traumatize me.
I doubt that any of these people receive recognition for their special compassion, and I bet they aren’t paid extra for it either. But that’s who I want when I am vulnerable and scared. And I bet you do too.
Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.