Rethinking Support That Respects a Person's Wishes | Yuko Takeda, Dean of the Faculty of Nursing and Medical Care
2020.02.04
The phrase "support that respects the patient's wishes based on correct information" is frequently used in all kinds of medical settings, and I believe I often used it myself. I had considered it a self-evident principle in nursing to provide decision-making support for patients as autonomous beings. I use the past tense because a certain book has often led me to question myself.
It was a popular topic, so perhaps many of you have read it, but I repeatedly read "Kyuni Guai ga Warukunaru" (Shobunsha, 2019) over the New Year's holidays. As written on the book's wraparound band, it is a collection of 20 letters exchanged between "a philosopher surviving with cancer metastasis and an anthropologist who has conducted extensive research in clinical settings." The initial shock of reading it was significant, but with each rereading, various phrases made my heart pound.
One of these was the "patient's wishes," respected with the words, "Please decide as you see fit." The philosopher's words that followed this description, "It's hard to choose, and tiring to decide," were deeply moving. Of course, in clinical settings, during informed consent (choice) where doctors present evidence-based options, I have often felt that patients could not possibly decide based on that information (cure rates, survival rates, etc.) alone. That is precisely why, as nurses, we have paid close attention to what patients want to know, explaining their condition or life prospects in a way that gives them a more concrete image, and presenting the support we can offer. We also encouraged them to take their time in making a decision. However, the philosopher, one of the authors, after repeatedly being given "correct information" not only by doctors but by a multidisciplinary team, weighing the risks and benefits, and "appropriately" making decisions for himself, ended up with the aforementioned "It's hard to choose, and tiring to decide." And then, rather than choosing rationally, he was freed from his state of utter exhaustion as decisions came to be made in a way that fit the atmosphere of the hospital and its medical staff. This approach to choice can be interpreted as a shift from problem-solving thinking to a more sensory, emotion-based coping mechanism.
The patient himself valued self-determination and had acted accordingly, so the medical professionals, seeking to respect that, likely provided information in response. It was the feeling of being cornered in the end, bound by the value of making one's own decisions based on information as a "good patient." It also seemed like a lonely feeling, surrounded by support.
I wondered if I had been able to notice and empathize with those feelings until now, or if I had inadvertently pushed patients further with the values of the medical staff. I strongly felt that I want to cultivate a sensitivity that allows for care that can stand by patients, even if it means wandering together, rather than "support" that simply props them up.
PS. The chrysalis that appeared last time successfully emerged at the end of the year, and we were able to welcome the new year with a cabbage white butterfly fluttering about.