Conscience Rules: Implications for Care

On February 18, the Department of Health and Human Services issued a rule, "Regulation for the Enforcement of Federal Health Care Provider Conscience Protection Laws," that limits health care providers' power to shape their practice by personal conviction. The rule narrows possible conscientious objection significantly, protecting patients' rights and in the process eliminating public reinforcement of the harmful idea that religion and medicine are always destined to diverge.

The DHHS regulation nullified a Bush administration policy that had expanded the definitions of who was covered by and what actions qualify for federal conscience protection. In addition to addressing familiar controversies at the beginning of life, the Bush rule also raised a concern about patient self-determination at the end of life. Critics feared that a broad right to conscience would interfere not just with providing care but with discussing priorities and rights with the terminally ill.

This refusal even to speak about death, to address our obligation to care for the dying in spite of our own denial and grief, echoes the outcry against reimbursement for voluntary advance care planning originally provided for by the Patient Protection and Affordable Care Act—the notorious "death panels." An attempt was made to issue this benefit through a Medicare rule issued in late 2010, but officials rescinded the rule within days of its issue due to political pressures. This left official silence where there might have been financial support and affirmation for these conversations. By limiting conscience protection, the new DHHS rule removes a possible obstacle to these conversations, but it does not provide substantive support for them.

Part of what animates the regulatory tug of war over conscience protection is a belief some have that conversation is somehow dangerous, and as fraught with psychological and social power as silence was a few decades ago. But the idea of dangerous talk is false: over and over on ethics consultations, I have seen how silence allows tensions to amplify. The lack of clearly articulated wishes on the part of the dying and the difficulty everyone has in conducting fair, honest conversations about a seriously ill patient's fate make hard situations harder. In most cases, mere attention to the story and its various narrators—patient, family, and providers—allows some resolution.

These conversations occur all too late. In a major cancer hospital, almost two-thirds of do-not-resuscitate orders signed between 2000 and 2005 were signed on the day of death. One might hope that signing a DNR was the end of a long process of conversation and education, but that is not always the case. The Medicare incentive—while not fully guaranteeing honest talk—would have at least provided a concrete result: protected time for these conversations to begin, tipping the balance toward patient empowerment.

Yet talk has its limits. In a few cases providers feel so strongly about refusing to perform an intervention (for example, aggressive cardiopulmonary resuscitation of a patient dying from refractory leukemia) that they seek to invoke a right of professional conscience—a variant of personal conscience with an unclear basis in law, including the DHHS rule. Does performing CPR on a terminally ill person break true moral or religious taboos, such that being forced to do it is tantamount to discrimination? The current narrow rule may not protect this form of conscience.

Finally, it is important to acknowledge the connection between power and professional conscience. In my brief experience, these conscience policies seem to yield humane and satisfying results, but in protecting a profession's interests they deserve special scrutiny. Are our patients really so empowered that a countervailing claim against their authority is justified? This issue deserves meticulous attention, especially from those of us who are growing into this profession taking Quinlan and Cruzan for granted. Given the long history of subjugation and abuse experienced by certain groups of patients and the ways that bias and distress may be unconsciously portrayed as narratives of human values in the hospital, we should not leap too quickly to physicians' defense if protecting them comes at the expense of difficult yet crucial efforts at mediation.