Published June 24, 2024
In March, the New England Journal of Medicine published an essay titled “What’s Lymphoma?” in which Dr. Benjamin Vipler recounted his elderly mother’s confusion at receiving medical test results on her phone. Her colonoscopy, an app notification informed her, indicated she had cancer. She did not realize that at first:
The message, filled with medical jargon, included no explanation. Fortunately, I could guide her toward understanding the diagnosis and planning the next steps in care.
If she hadn’t reached me, however, she probably would have done an Internet search, turning up documents full of words she understood too well, like “death” and “incurable,” and words she didn’t, like “lymphatic” and “leukocyte.”
Since the enactment of the 21st Century Cures Act, which requires electronic release of all patient results and documents without delay, such situations are increasingly common, raising important questions about effects on patients and clinicians alike.
The 2016 “Cures Act” was meant to empower patients in part by making medical information available to them and their physicians simultaneously. As with many sweeping, top-down changes, this has had unintended and harmful consequences.
The job of a doctor is not simply to receive and review test results, but to contextualize them for particular patients and guide their care. Very often, patients now review their test results before their doctors see them, which markedly and unnecessarily exacerbates their confusion and worry. While research suggests that patients still prefer this instant delivery method, Vipler argues that patient preference is not the only important consideration.
One survey noted that most clinicians said immediate release of test results to patients “is more confusing than helpful.” Patients — many of whom who are unprepared for bad news or ill equipped to wade through medical jargon — frequently channel their panic or frustration toward their clinicians. Doctors, meanwhile, wish they could have delivered the information in the first place, in a clearer and more humane way than app notifications allow for. Many doctors, Vipler writes, “now feel they must race to convey results before their patients read them.”
In other words, doctors are now responsible for mitigating the effects of bad or simply baffling news. In the past, they were responsible for reviewing particular medical results for a patient, putting those results into the context of that patient’s medical profile, relaying the information sensibly — in layman’s terms — and answering questions. This new approach places additional burdens on the doctor at the expense of patient well-being.
As Vipler writes,
Little is known about the effect on clinicians when such mitigation attempts fall short. Studies of effects on clinicians of patient access to their health records have traditionally focused on increases in workload and the volume of patient messages.
These increases have undoubtedly escalated since the Cures Act; one study found a doubling of daily patient messages. I would argue, however, that research is needed on the emotional effects on clinicians and the repair work they must undertake after patients do their own research on new, significant, and perhaps deadly diagnoses before discussing their cases with their clinicians.
A seemingly small change in favor of patient autonomy, in other words, has seriously disrupted the doctor-patient relationship, with apparently no meaningful benefit for either side. While not solving any significant problem, it has created new ones. This is of a piece with many other regulations undermining medicine as a profession, and doctors as professional authorities with well-developed modes of conduct.
Devorah Goldman is EPPC’s Tikvah Visiting Fellow. Her work focuses primarily on medical policy, culture, and public bioethics.
