Theresa Brown, who proudly carries her RN degree up front, is a rare and precious package: an expert nurse in challenging specialties (cancer and hospice), who has the gift of writing clearly and eloquently about her job, her patients, and often (and necessarily) our healthcare system. Through her previous books and essays in the New York Times, she tells important stories that inform, move, and enlighten. In Healing, she tells the story of her encounter with cancer — this time as a patient. She discovers that, with all her prior knowledge, she did not actually understand what her patients might have felt, seen, or experienced. When patients fuss about losing their hair or complain about nausea or painful neuropathy caused by chemotherapy, the nurses’ response tends to be “But we saved their lives.” Brown says she chose oncology as her focus because the “science was really interesting,” and by the way, cancer had run rampant through her family. She’s even used to being called back for additional imaging on her own mammograms — no big deal. Then one day, the radiologist says “I see a mass, and it looks ugly.” She is blindsided and does what most women do: cry. The radiologist walks away, and it’s the ultrasound technician who wraps her up in a hug and whispers: “They can fix this.” They can and do, but with a level of inefficiency and lack of compassion that adds enormously to the distress of the process. This lack of compassion is an abiding theme throughout, and while she examines it in some detail, doesn’t seem to have a lot of concrete ideas about how to improve it. The technician’s hug and someone who hands back her hairband which has fallen off are examples. But how much those gestures meant to her!
Brown had a huge advantage over most of us. She works in the system. She knows who’s who and what’s what in the dizzying maze of serious disease care — most of us can’t tell the phlebotomist from the neurosurgeon from the nurse’s aide or the unit clerk when they come trooping through, all in scrubs. Brown has everyone’s email, people’s cell phone numbers. When her scan results are not forthcoming the day she expects them, by God, she uses them. And somehow, someone retrieves her results so she does not have to wait over a holiday weekend like the rest of us do. Yet, in this era of contract workers, electronic medical records that will not spit out anything until all the boxes are checked, when only specific individuals are allowed (and required) to sign off on data… what’s to be done? Her description of trying to get pain medication refilled for a dying young woman in hospice before the cartridge runs out is harrowing: obstructed, diverted, delayed… but finally, somehow, it gets delivered. In a system so broken at so many places on so many levels for so many reasons, just how do we start to fix it? Brown is vigorous and clear on the problems, but vague on how to go from there. But yes, let’s start with desk clerks who protest, “But I leave at four.” Brown gets a “patient satisfaction survey” after the tussle over scan results: she fills it in with a sharp description of her experience… but never tells us if anyone ever followed up. Probably because no one ever does.
Overall, what we have here is a crisp, passionate critique of how the American healthcare system treats patients, as told by an professional within that system who suddenly finds herself on the receiving end. There are other writings by professionals (such as Atul Gawande or the deeply humane Victoria Sweet), and many, many patient-experience memoirs, and I had hoped this book would be a strong synthesis of the two viewpoints. It seems to fall somewhere in between, where the perspectives don’t fully cohere into a rousing call for action to unjam these clashed gears. Pages on bicycle riding and house buying don’t add much; there is good advice about just how helpful frantically trolling the internet is (or, often, is not) and some useful discussion of the pros and cons of being an “easy” patient or the “squeaky wheel.” And while I cheer for any indictment of the demeaning “pink” and “positive thinking” tropes, I have to wonder… would they put a spray of flowers on a book about pancreatic cancer? Or, heaven forbid, prostate cancer?
The chapters often wander back and forth: the troublesome brain fog she experiences from the radiation therapy doesn’t come up in the chapter on the radiation therapy – she mentions it in passing many pages later. She admits in an opening disclosure that her memory is faulty throughout and she often says she doesn’t have any memory of conversations or events, which begs the question: how reliable is this? There is an arc to the overall book, from diagnosis to recovery, but the chapters stutter and veer. In fact, the book often reads more like a collection of shorter separate essays – like those strong and engaging pieces for the New York Times – each with its own interest and value, but which doesn’t quite assemble into a flowing whole.
Gawande may be more effective in calling the American healthcare system to account; Victoria Sweet also inspires closer attention to healing and compassion therein. But Brown is an essential voice – especially from and for nurses – raised in a call for those same things. As she says: “Modern health care saved me, saved my life, but Theresa the person got lost in the process.” And this is what we still need to hear – and act on.
– Thanks to NetGalley for an ARC in exchange for an honest review –