Someday, every doctor (nurse, social worker, therapist, counselor) will be a patient. That is the foundational theme of one of my favorite films, called “The Doctor,” starring William Hurt, Christine Lahti, Mandy Patinkin, Elisabeth Perkins, Adam Arkin and Charlie Korsmo.
Based on the 1988 book called “A Taste of My Own Medicine: When the Doctor Is the Patient” by Edward E. Rosenbaum, it details a period in the life of surgeon Jack MacKee. He teaches his residents that being accurate in the OR is more important than bedside manner. That is, until he is diagnosed with throat cancer. That’s when the tables are turned, and he finds himself at the mercy of a medical system that is not always patient-centered.
The exception is his colleague, Dr. Eli Blumfield, whose sensibilities lead him to speak supportively to patients under anesthesia at which MacKee scoffs until he has to go under the knife. He does a 180 and at the end of the film. He compels the medical students under his tutelage to strip to their skivvies, don hospital gowns and become patients for 72 hours.
From Caregiver to Patient: An Uneasy Switch
That juxtaposition of professional caregiver turned patient took form for my friend Ondreah Johnson, RN in 2016. I have written about her journey in previous articles. She detected a lump in her breast on Christmas night, 2016. Ironically, she considered it “another gift,” and a diagnosis of Triple Negative Breast Cancer that had her examining every aspect of her life to that point and pondering how her future would unfold.
As a career nurse with 37 years of experience, she was the one offering comfort and guiding instruction to her patients who looked to her for care. As compassionate as she had been and as much of a patient advocate as she was, it wasn’t until she was the one in need of treatment that she realized the impact her professional care had on those she served.
She was now in that vulnerable position. As her friend, I accompanied her on a journey that included chemo (which she called IV meds), surgery and radiation.
Some of her treatment team were compassionate with solid people skills, while others needed to be reminded to come closer, make eye contact, and offer what is known as ‘The Mother Standard of Care.” That means that patients are to be cared for in a manner that the staff would want their own mothers (or other loved ones, or themselves) to receive.
Many in the medical profession exercise what they consider professional distance, in part to protect themselves emotionally and ward off potential loss, lest they get ‘too attached’.
They also hold to the hierarchical system that elevates doctors above the patient. My experience as caregiver for other family members and friends tells me that empathy is good medicine. My professional role as a Social Worker in various settings, including inpatient medical and psychiatric, informs me that active listening, being a patient advocate, involving family (whatever that means to the patient) members in the conversation are therapeutic.
When she went for her sessions, she carried with her some of her psycho-spiritual support tools such as her prayer beads, pictures of her spiritual teachers, inspirational books, and music. Per the friend who accompanied her the first time, she “changed the energy in the room.” She saw herself as an alchemist who can make those adaptations and says there is a “grace in ownership” of her condition.
Afterward, she offered these musings: “What am I going to do with this, because this is mine? How do I navigate with this inside of me? There is a grieving that needs to take place. I know that although the treatment comes from the outside, healing is an inside journey.
There is something about the embracing of it that makes it yours because it is. The things that we incorporate, in my case such as a vision board with uplifting words, pictures of goddesses and images of healthy breasts, impact the people who are working with you. We have been told, to use affirmation and prayer, and being told you can do this…it is more than reframing. This is part of my soul’s journey, not just my mind and body’s journey.”
Trauma Informed Treatment Comes to the Fore
We also considered the important role her treatment team had on her physical, psychological, and spiritual well-being. The idea of trauma informed and culturally-competent treatment came to the fore, since she was a trauma survivor whose spiritual practices were not main-stream and her intervention strategies were unconventional.
She was their teacher who introduced them to ways of enhancing patient care. She asked them to slow down, to be present, to move closer, to hold her hand literally and figuratively, to really see and hear her, to understand her fears, to help her to cope with the challenges she faced.
In the midst of this experience, Ondreah and I brainstormed how we could put to use our shared knowledge of medicine with our roles as patients.
I have been treated for a variety of conditions beginning in 2013 that included shingles, a heart attack, adrenal fatigue, kidney stones, and pneumonia. I have received stellar care.
She didn’t always feel satisfied with the actions or lack thereof of some of her caregivers. What we came up with was a class we wanted to teach called “The Other End of the Stethoscope: Listening to the Heart in Our Care.” It was to be offered to active medical professionals and those still in training.
We had a general outline in place and then her condition took a turn. After what was considered a successful initial round of treatment, a few months later, other disturbing symptoms began. Coughing and rib pain required more tests with the devastating news that the cancer had metastasized to first one lung and then the other.
More treatment was suggested that gave her a small but reasonable chance for ‘living with’ cancer rather than being cured of it. She decided to take it and went to a prestigious Philadelphia-based program that included immunotherapy. Within short order, after multiple ER visits and a few inpatient admissions, she reluctantly decided to receive hospice services.
I was a member of what I thought of as Team Ondreah who would provide care for her. When the pain became too severe and medication was increased to the point when it couldn’t be managed at home, she was admitted to the hospice unit of her local hospital. Within a few days, it was clear that she was about to make her transition. Family and friends gathered, and she said her goodbyes. I was blessed to be there in her waning moments.
In conversation with her a few weeks before she died, she described the experience as internal, and the sense I got was that it felt like she was folding in on herself like a burrito. What if the inside is filled with experience and emotion and memory and when we are close to death, we get to explore it, since we are not so busy with the day to day stuff of life?
At the moment when we cross over to whatever awaits us, does the burrito unroll to reveal what lies within? On her last night, in hospice, a few friends, her brother and sister and I gathered around her bed, offering comfort, energy work, nurturing touch, music, and prayers for her easy transition. Toward the end, as we could see her drifting off, we asked her to surrender. That she did.
I am convinced that when we are close to the threshold, our Spirit, that vitalizing force gets so vast that the body can’t contain it and so it bursts free of its constraints. The body shrinks back. I saw that happen with Ondreah.
As I am writing this, a month has passed since she took her final breath. I officiated at her memorial service last weekend. To honor her, I will be teaching the class on my own so that those who find themselves in the patient position may have a healing experience regardless of outcome.