As a registered nurse, Theresa Brown has worked in an oncology ward and for a hospice company; she’s seen her share of illness, suffering, and death.
But those experiences didn’t fully prepare her for getting breast cancer herself. Brown, a best-selling author based in Pittsburgh, tells the story in a new memoir titled “Healing: When a Nurse Becomes A Patient” (Algonquin Books). It chronicles an unavoidably personal journey that also gave Brown new insights into the shortcomings of U.S. health care.
Brown is a former English professor who turned to nursing some years ago, and detailed her new career in the books “Critical Care” and “The Shift.” The latter was a New York Times bestseller. She’s also written on health care for publications from the Times to the Journal of the American Medical Association, and she speaks nationally and internationally on nursing, health care, and end-of-life issues.
Nonetheless, a September 2017 diagnosis of breast cancer threw her for as much of a loop as it would anyone else. One perhaps surprising effect: “I forgot everything I had learned about breast cancer,” said Brown in an interview.
She attributes that to “partly denial, maybe partly a kind of mental panic.” Yet Brown’s memories of much of her own actual treatment are quite vivid.
In some ways, being a nurse did make being a patient easier. Though patients can’t manipulate the system like health-care workers can, she said, “I did know things like, try not to make a fuss, sort of go along to get along” when dealing with caregivers. But that restraint took her only so far. “Sometimes you need to complain about stuff,” she said. “And at one point I realized, ‘I am the difficult patient,’ and I really felt like, ‘Oh, that's not a good thing.’ And then I realized, ‘I don't feel like I really have a lot of choice.’”
Brown, who then lived in Point Breeze, had a slow-moving, highly treatable form of breast cancer, and weathered her radiation treatments well. (She even bicycled to most of her sessions, including a challenging uphill through Schenley Park.)
As she notes in “Healing,” as a white person with health insurance, a supportive husband and adult children, and the wherewithal to take off work during her treatment, she had it easier than many in the health care system, where the poor, the uninsured, and people of color tend to fare worse.
Brown is doing well now, coming up on five years since her diagnosis. She’s promoting “Healing” with a 10-city tour, and pondering whether to return to bedside nursing.
Still, much about her experience was stressful and frustrating. “In some sense, that was the impetus for writing the book, because I was struck over and over again by how uncoordinated the care was, by how rude, honestly, people were sometimes,” she said. “And as a nurse, I didn't see that, or if I saw that, I thought, ‘Well, I can make up for that because I'm working so hard.’ And as a patient, I saw no — one hardworking person really can't make up for that.”
For instance, after an ultrasound revealed that she likely had breast cancer, Brown was told to schedule a biopsy that afternoon. In the hospital, in tears, she waited and waited – only to be told that that she had “just missed” the scheduler, who had left for the day.
“I just wanted to hurt that person, like it made me so angry,” she said. “And I knew that things like that happened all the time. … But I never knew how bereft truly patients felt and how terrifying it is to have cancer. … And people just didn't seem to have a sense of that. To them, it's, ‘Oh, sorry, we can't change your oil today. We're going to have to do it tomorrow.’”
It wasn’t all bad, for sure. Brown takes special note of the young staffers in radiation oncology who told her, “We know you don't want to be here, so we have to be extra nice.” Their many small kindnesses, like screening a video about her treatment, and letting her sit in the hallway because she didn’t want to be subjected to “The Price is Right” on the waiting-room TV, stuck with Brown.
“It's just basic civility and kindness and being aware that patients are going through a lot and that needs to be honored and addressed in their treatment,” she said.
“Healing” cites research suggesting that compassionate behavior by health-care providers toward patients has practical benefits, too. A couple studies, for instance, found that simply talking with patients compassionately reduced their perceived pain level and need for pain meds. “The situation, the context really can affect how we feel on a physiological level,” Brown said.
However, Brown emphasizes that the real problems aren’t due to, and can’t be solved by, individual medical professionals. The problems are systemic – what she calls “the lack of humanity in the system.”
Some of it manifests in things like short-staffing, which Brown experienced as a nurse as well. Say a nurse calls off on a floor where there are four patients to a nurse. “All of a sudden you have five patients, which is really too many to do the job well. And yet no one thinks, ‘Wow, that's not good.’ … There are all kinds of situations where no one would ever say, ‘Well, one person can just do the job of two, that'll be fine.’ And yet in the hospital, it happens all the time.”
The point was really driven home for Brown when, after largely recovering from her treatment and its side effects, she briefly returned to work for the hospice company that previously employed her. The firm had been taken over by a holding company, and now the job felt very different, with bigger workloads for nurses, and corners being cut in the service of profit.
“I think the basic understanding people need to have is if you have a for-profit company, they’re taking money out of whatever revenue is made, right, to go into profit,” she said. “So right away, you've got money coming off the top that's not going back into making anything better. And then also there's a pressure on the company to increase those profits. Now we hear so much now about, well, companies have a duty to their shareholders to give them as much money as possible, which I find really an immoral observation when it applies to health care.”
“So much effort going into saving a few dollars here and there, rather than into, ‘Let's take care of people the best we can,’” she added. “And I want to make clear it's not that I feel like companies should never make money. … I'm saying in health care, it's too important to have money just skimmed off the top to go to make someone richer. It's not the purpose.”
