This was the moment of the seesaw. The balance tipped from nurse to patient.
A cancer diagnosis is, in its own way, a seesaw. And maybe also a bully, the same as those kids on the playground. One of the last patients I visited before being diagnosed with cancer myself was a woman on home hospice with breast cancer. She lived in one of Pittsburgh’s historically Black low-income neighborhoods. The husband of one of our new nurses had supposedly forbade her from caring for patients in that neighborhood. “Forbade” — even without the sexism in the husband’s pronouncement, the word sounds like an ancient prohibition. In truth, Pittsburgh crime statistics do show a not insignificant rate of violent crime for that neighborhood — and the husband’s attitude reflected an even larger societal problem of poverty being linked with crime — but the ideal in healthcare is we treat all comers and we treat them the same no matter where they live. That’s one definition of compassion.
In the U.S., though, we absolutely do not treat all patients the same. For example, inability to pay is a known limit on access to care, enforced by insurance companies and hospitals alike, and is also structurally supported as a hard stop on care availability, except for those poor enough to qualify for Medicaid, or those 65 and older, who qualify for Medicare.
Our nurse’s husband may have been worried about his wife’s safety, or he may have had racist ideas, or both, but the truth is, equal care is already denied to many people of color — sometimes because they can’t pay, yes, but sometimes only because they are not white. Cancer treatment specifically is unequal for Black Americans. According to the American Cancer Society, Black people have the highest death rate and shortest survival of any racial/ethnic group for most cancers in the U.S. For breast cancer patients, Black women are 41% more likely to die than white women, despite being less likely to be diagnosed with it.
I had been this patient’s nurse for one day about a month before (per diem nurses never have a set patient list), and my hope is that on that day, for that patient, the care I gave was the same care I would have given anyone else. The patient had moved into her daughter’s small two-story house, and they’d put her hospital bed in the first-floor living room against a side wall, in front of the TV and a large picture window. When I saw her one month previously, she had refused all pain medication despite obviously being in pain.
That first time, when I came to the house, the patient wouldn’t meet my eye as I asked about her pain and said the medications we offered could help. Her daughter came down the stairs and hinted that I should keep the visit short. Later, standing on the porch outside, the daughter told me that her mother hated having nurses in the house and hated the idea of taking narcotics for pain. I don’t remember what I said, something along the lines of, “If she could only try the long-acting narcotic…” This is how it goes sometimes. People have all kinds of reasons for not wanting to take opioids and they won’t always explain, or can’t.
When I checked in a month later, though, the patient was transformed. She sat up straight in the hospital bed and looked right at me. Her white hair was combed back from her smiling face and she told me she had no pain at all: a small miracle of persistence and persuasion. She had started taking the medication. The daughter wasn’t there, which meant another goal had been accomplished: the daughter could leave the house to go to work. When I’d finished the visit, as I got ready to leave by putting my stethoscope, thermometer, and blood-pressure cuff into my bag, the patient told me, “I’m going to beat this. I’ve just got too much living to do.” She looked out the window at the street outside, and then back at me. “I’ve got grandchildren, you know.” I paused.
Another seesaw — truth versus denial. Was this why she now took pain medication? Did she believe that she would survive her untreatable metastatic breast cancer? Hospice work demands scrupulous honesty about life and death to avoid giving patients false hope, but this time, for once, I hedged, tacitly supporting her denial. “Well, why not?” I told her. Then I smiled and waved as I left the house. Why not.
Why not. This woman, dying of breast cancer, is the last work memory I have prior to my own diagnosis. The specialized knowledge that comes from working in healthcare can feel like power, is power, when a patient doesn’t comprehend the likely outcome but we do. And that’s part of why none of us wants to be in the hospital bed instead of standing next to it in scrubs.
People failed me when I was a patient and I failed patients when working as a nurse. I see that now. People also came through for me, and as a nurse I did my best for patients. But the overall balance between profit and compassionate care is off; it has tipped too far towards profit, meaning the playground bullies control the seesaw. Consider that more than 28 million Americans lack health insurance. Medical mistakes are one of the leading causes of death in the U.S. Life expectancy in the U.S. is going down, not up. America spends more money on healthcare than any other industrialized country and our outcomes overall are much worse. These data points show how little patient well-being matters relative to the money-hungry healthcare machine.
We can try, though, to restore the balance, and that synergy in the seesaw, by caring equally for all patients, by treating the body and the soul.
Theresa Brown, PhD, BSN, RN, is a nurse and writer who lives in Pittsburgh. This excerpt was adapted from her third book, Healing: When a Nurse Becomes a Patient. Reprinted by permission of Algonquin Books of Chapel Hill. Copyright 2022 by Theresa Brown. All rights reserved.
Source: MedicalNewsToday.com
