In today’s fevered COVID-19 chaos, health care decisions are sometimes shared, sometimes not, and sometimes never made, which is why considering the ethics of writing about shared healthcare decisions is important.
Sharing health care decisions among the doctor, patient, and family is the norm in American medicine. Health care decisions made only by the clinician are rare and always the product of necessity. They are made in the acute presentations in emergency rooms, intensive care units, and at the triage stage. Some patients never know they are about to die and never hear about the decisions to resuscitate, intubate, or pull a technological plug. This blog was motivated by a thoughtful piece in the AMA’s Journal of Ethics in May 2020 about the importance of sharing healthcare decisions. The essence of the guidance was clear:
“Illness and injury impact patients far beyond the physical or biological changes they inflict. They can strip patients of autonomy, present new or overwhelming information, and make the future even more uncertain. . . Often, disease and medical treatment require patients to take stock of their entire life—what they value, what they want from their care, and what they hope to achieve moving forward. As such, physicians must be able to take all these patient characteristics into account. . . . Today’s physicians should not use their expertise to drag a patient towards a particular endpoint; physicians and patients should be partners, traversing a treatment path in tandem, both contributing to crucial discussions.”
That guidance was ethically and medically sound. But chaos in the ER, split-second decision making in the ICU, and the reality of diagnosis/prognosis of COVID-19 in elder patients with comorbidity and already in late-stage status means that patients cannot share in decisions about their “health.” They are too sick to help and gripped by the spectre of death. They don’t participate; they just wait.
Often there is no decision to make except instant intubation and ventilation by machine, while death makes its own decision without sharing it with the clinician, the patient, or the family. That is the intersection between the ethics of the thing and writing about it.
I’m not talking about writing to the patient. The issue here is writing about the unshared decision from triage to death. Under the above not-so-hypothetical scenarios, there can be no partnership, no traversing a treatment path, and little contribution to crucial decision-making. The written medical record should reflect the truth about decisions made and consequences ensued.
In non-life-threatening presentations, when time and prognosis permit, and when the patient is both aware and competent, shared decision-making honors the bioethical value of respect for patient autonomy. It deepens patient trust. But in chaos medicine, like acute presentations of COVID-19, the patient has little interest in decisions. The family places little value on sharing decisions. Both want life, at any cost, by any means possible.
In the pre-COVID-19 age, shared decision was balanced with the clinician’s ethical duty to allocate resources wisely. From a corporate perspective, hospitals and related facilities must marshal and spend health care resources based on perceived patient needs. The ethics are driven by realism, not the best practices of a quieter medical time. The press and politicians will tweet and write press releases. The ethics of that are beyond this simple blog.
I am an author and a part-time lawyer with a focus on ethics and professional discipline. I teach creative writing and ethics to law students at Arizona State University. Read my bio.
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 Alexander T. Yahanda, MS. AMA Journal of Ethics®, May 2020, Volume 22, Number 5: E349-351.