by Jean L. Minkel, PT, ATP
Those of us involved in assistive technology have a lot to offer people with physical disabilities and debilitating health conditions to improve their functional abilities. We understand that we are not offering cures, but we do provide care. We help people live with long-term functional impairment.
Sometimes, though, our clients have other ideas.
I’ve had the experience of trying to “correct” the curved spine of a young man with muscular dystrophy, only to find the custom mold I prescribed ripped out of his chair the week after it was delivered. I have carefully prescribed a power wheelchair with a ventilator rack to help a gentleman with ALS get around town, only to find that the chair sits in his garage while he spends his days in a recliner next to his bed.
Faced with these situations, my initial thoughts were, “What’s wrong with these people? Don’t they know how hard I worked to get them these solutions to their problems?”
Then I discovered a different perspective, one that made me pause and think about my “expert” care. It was the perspective of a patient, Harriet McBride Johnson, who published an essay about living with a muscle-wasting disease.
“It’s not that I’m ugly,” Johnson wrote. “It’s more that most people don’t know how to look at me. The power wheelchair is enough to inspire gawking, but that’s the least of it. At this stage of my life, I’m Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin.
“When, in childhood, my muscles got too weak to hold up my spine, I tried a brace for a while. At 15, I threw away the brace and let my spine reshape itself into a deep twisty S-curve. Now my right side is two deep canyons. To keep myself upright, I lean forward, rest my rib cage on my lap, plant my elbows beside my knees. Since my backbone found its own natural shape, I’ve been entirely comfortable in my skin.”
When I first read Johnson’s essay, I remember asking myself, “Do I allow my clients to be ?a jumble of bones in a floppy bag of skin”? Am I comfortable listening to someone who says, ?”Since my backbone found its own natural shape, I am entirely comfortable in my own skin”?
My professional response was negative. “This is not a therapeutically appropriate sitting position,” I thought. I struggled with the tension between providing patient-centered care and expert intervention. Eventually, I evolved enough to recognize that, for many clients with progressive diseases, the “therapeutically inappropriate” position is actually functional for that person and a real solution for them.
I recently read Atul Gwande’s book Being Mortal, about his journey learning to have difficult conversations as a physician in an acute care teaching hospital, as well as during his own family’s struggles when his father was diagnosed with cancer. Gwande repeatedly points to the discomfort we healthcare providers feel when we cannot cure a disease, or when our technology or medical interventions cannot solve a patient’s problem.
I particularly like Gwande’s exploration of patient autonomy. “You may not control life’s circumstances,” he writes, “but getting to be the author of your life means getting to control what you do with them.”
In my practice, allowing a client to be the author of his or her life requires me to become their partner in an interactive model of care, rather than insist on practicing an expert-patient model of care. It requires me to explore my own discomfort with aging, progressive illness, dying, and death. But there are gifts that come with being open to hearing what matters most to others, in being a healthcare provider who helps the patient experience their own good and bad days on their own terms.
Educator Bruce Kramer, who died last spring of ALS, wrote that when we cannot cure a disease, there is a pervasive “dis-ease” in communication. This is something all healthcare practitioners know well. Faced with a patient or client with a progressive disability or a terminal disease, we have to decide whether and how to have a difficult conversation. This requires us to check in on ourselves about our own discomforts.
Having a conversation where we actually welcome those we provide care for to talk about what matters most to them as they experience decline and mortality requires both willingness and skills that can be difficult to master, however much we may desire to do so. I find I must first be willing to engage in authentic inquiry to have a true curiosity and openness to what the other person knows, thinks, and wants. I must continually ask, “What is my comfort level with aging, loss of function, decline, and death?” And I must be willing and able to understand and manage the emotions and reactions these subjects evoke in me.
The emotions that come up for each of us are real and are not to be denied. Only by recognizing them can we can find ways to put our own emotions to one side while we focus on the other person and invite them into conversation.
Having difficult conversations also requires active listening, which is a very challenging skill. It includes giving your full attention to the other person while being ready to ask open-ended questions like: What do you know about your condition? How do feel about your situation? What is working for you right now? What matters most to you?
Perhaps most challenging, active listening includes remaining open to whatever response the person may give. It means being willing to meet the patient or client where they are—which is no easy task for many of us.
In 1999, my mother had been diagnosed with and was undergoing treatment for cancer. I gave a tremendous amount of thought as to what I should ask my father, a doctor who was also a deeply religious man, to help us enter into the most difficult conversation about what he wanted and would allow for my mother’s end-of-life care.
Finally, I was able to ask, “Dad, what are we praying for?”
My intent, as a clinician and a daughter, was to hear what tests results we were looking for: What were the prognostic indicators that Mom would be cured?
“I say a prayer every night for a full life and a quick reward,” Dad responded. My father, who took such pride in his medical skills, in his ability to help patients, understood and had accepted that the power of data, tests, and medical outcomes were not where we were anymore.
This was not the answer I was looking for. I wanted medical facts, lab results; but his answer helped me understand and accept where we were as well. His words proved very valuable to me when, less than a month later, following a negative reaction to chemotherapy, my mother opted to stop treatment.
She’d had a full life, even through 15 months of chemo and radiation treatment. Within a week, Mom died at home, with our family together, quickly gaining the reward my father had prayed for and that I knew she had earned.
Jean L. Minkel, PT, ATP, is an internationally recognized expert on seating and mobility issues. The former director of the Seating and Mobility Program at the Helen Hayes Hospital Center for Rehabilitation Technology, Jean is currently senior vice president for Rehabilitation Services at New York’s Independence Care System.