I cry often enough that my kids almost gleefully expect it, checking me for tears during movies or shows, shaking their heads in mock dismay when they see that their prediction is correct. I’ve cried many times at home, watching screens, reading books, talking on the phone, and at work, where I am a doctor who cannot always suppress my emotions. And I’ve cried in front of health care providers as a patient or family member, something that I have the most trouble admitting because the tears were virtually involuntary and unwelcome in a health care space that did not feel safe to me. In that setting, there is shame.
Patient safety is about preventing medical error.
If I don’t feel emotionally safe in a health care encounter, is that also a violation of patient safety? Does that lead to medical error if a patient doesn’t feel emotionally safe enough to express how they really feel to me as a doctor?
Reflecting on my own various health care experiences as a patient and patient advocate, I would say absolutely and emphatically, yes. There is a strong element of fear in my instinctual reactions to difficult things that I don’t understand. When I first thought that my son was deaf at nine months of age (and he was misdiagnosed for over a year), it was fear that disallowed the proper diagnosis to be officially rendered much earlier at 13 months of age. The doctor told me my son had typical hearing while sitting down. As she was stepping out, my doorknob question caused her to say that fluctuating hearing can be a sign of a rare disorder called auditory neuropathy. Fast forward to almost two years of age, which was my son’s ultimate diagnosis. At 13 months of age, she said it, I heard it; neither of us fully processed my fear and anxiety and lack of understanding of that medical term. I wanted my son to have typical hearing. I wanted to believe her. I wanted to lay my fear to rest. And I did for half a year until my latent fear could no longer be ignored, and we started auditory testing again.
How many times does this happen to my patients? How many times are there fears or worries that are not outright expressed? While I used to assume there was not anything lying below the surface unless the patient told me outright, I have started to assume that there always is fear or anxiety or worry or stress. Even if it is small. Why else would the patient be there? Rather than a “chief complaint,” there is likely a “chief concern,” and I need to elicit it. I am a better doctor if I can create a safe space for the patient to express it.
Nine years after my son’s diagnosis of auditory neuropathy, my son’s vision acutely deteriorated. Medical professionals did not believe him or me as he was testing blind on various ophthalmologic tests in an inconsistent manner, and various diagnoses were tossed around, including “hysteria.”
From Wikipedia, “hysteria is a term used colloquially to mean ungovernable emotional excess and can refer to a temporary state of mind or emotion. In the 19th century, hysteria was considered a diagnosable physical illness in women.”
Seeing my son fail at so many visual tasks, to us very much suddenly, acutely, unexplainably (he could no longer read), I would say that I was internally hysterical. Hysteria is no longer considered an acceptable medical diagnosis in women. I wonder, given the “ungovernable emotional excess” of fear that I was feeling, how could the medical providers we were seeing not sense my overwhelm? I think that, of course, they could. And it was ignored or included as part of my son’s issue that the mother’s hysteria was being transmitted to the son and manifested with an inability to see the world clearly. The latter was suggested to me off-hand that stress-induced by me was a factor in my son’s visual loss. While I instinctively armored up to remain impassive at the moment, I decided instead to confront the issue immediately and stated outright that I didn’t think the provider really knew enough about the relationship between my son and me to insinuate something like that. I wasn’t defensive, but I involuntarily showed that he had upset me; my eyes filled with tears, and I felt shame. Not at what he had implied because I knew it was not true. But at showing vulnerability, which felt like weakness, in front of someone who seemed to be judging me unfavorably.
He was taken aback. And he backtracked. And he sat with me. And he asked if I knew of “dayenu,” which I did not. And he tried to explain it as, “Let this be enough.” I couldn’t understand that my son’s vision loss was still quite severe – was I supposed to accept the current level of retained visual function as enough?
He confused me enough that I tried to research the concept. Dayenu is a Jewish song that is generally sung at Passover, a song in 15 stanzas with a chorus of “it would have been enough” for each event that preceded full release from slavery; a balance of the present reality with future hope when you don’t know yet what the future holds. Dayenu: that in case you don’t get your heart’s desire, that what you hold in your heart right now is enough.
More and more, I sense that the health care system is broken. Doctors, including me, are trying to “fix” patients – to document symptoms, signs, lab abnormalities, and diagnoses; and then cure them to perfection. It’s not enough because perfect is truly the enemy of the good, and good health care is needed. Patient safety is not enough without patients and patient advocates feeling safe enough to express their thoughts and feelings. What the patient is experiencing is important to getting the diagnosis right, getting patients what they really want and need, and promoting health. Without such an understanding of patients, health care will never be enough.
For my son and me, while his vision is not 100 percent back to normal yet, it is close, thankfully. And in writing this, I realize that it was meaningful that the person who saw them sat with me in the moment of my tears. It wasn’t perfect, but it was enough.
Christine J. Ko is a dermatopathologist.
Image credit: Shutterstock.com
