Co-authored with Hayley Penan*
In July 2013, Susan Berke Fogel, then Director of the National Health Law Program’s Reproductive and Sexual Health Team, published Health Care Refusals: Undermining Quality Care for Women. This report detailed how health care refusals and denials of care rooted in political ideology, or institutional or personal religious and moral objections impacted patient access to care.
As an organization, the National Health Law Program continues to be active in this space as members of the Community Catalyst-convened Strategic Working Group on Religious Health Restrictions. In March 2021, NHeLP and Community Catalyst co-published Making Convenient Care the Right Care for All: Improving State Oversight of Urgent Care Centers and Retail Health Clinics, which discussed the troubling lack of oversight over the growing numbers of urgent care centers and retail health clinics nationwide.
Meanwhile, almost ten years later, the topics raised in our original Health Care Refusals report continue to be salient today. We are taking this opportunity to release a two part blog series on the topic of health care refusals and how they undermine standards of care. Part I of the blog series is a very topline review of the topics covered in the original Health Care Refusals report. Part II of the blog series explores the impact of health care refusals, discrimination, and mistreatment on LGBTQ patients and their families.
Standards of care are defined as the practices that are medically necessary and the services that any practitioner under any circumstances should be expected to render. Unlike “best practices,” which focus on the highest level of care a patient can receive, standards of care establish a baseline of professionally agreed-upon practices. For health care providers, the primary commitment and duty is to provide the best care possible to the patient. Failure to adhere to prevailing standards of care harms the individual patient, undermines the health care system, and jeopardizes the health of the general public.
At the same time, health care refusals are proliferating in the United States based on ideological and political justifications that have nothing to do with scientific evidence, good medical practice, or patient need. In some cases, it is individual physicians and other health providers who refuse to provide services to which they have personal and religious objections. However, restrictions have also expanded due to the growth of large religiously-controlled non-profit health care corporations, and political trends that have favored ideology over science. Regardless of their source, when such ideological restrictions are imposed, patients are denied access to quality health care and may not receive appropriate information or referrals for the care they need. These health care refusals directly and negatively impact quality of care and can run counter to standard of care. It is the responsibility of policymakers, health care providers, and health care institutions to ensure that basic medical guidelines are enforced and that patients receive quality health care services that meet the standard of care.
The delivery of health care is highly regulated, and with good reason. Health care regulation protects patients from untrained or inadequate providers who would do them harm. Practicing medicine, providing nursing care, or distributing drugs without a license is forbidden by law. As such, the patient-provider relationship is inherently unequal. Medical providers have specialized knowledge that their patients do not have and cannot necessarily easily obtain. Patients rely on their medical providers to share information with them to help them understand and make decisions about their care. Denial of such information or outright refusal of health care services, directly impact a patient’s health and well being. As such, a mere balancing of, for example, a patient’s rights and a provider’s belief, is inadequate to address the real-life consequences that individual health care refusals can have for patient health.
Indeed, health care refusals grounded in personal and religious belief rather than scientific evidence, take us backwards to the now-discredited models of paternalistic health care when treatment decisions were made by physicians and health systems regardless of patient needs and preferences, and without providing patients the capacity to make informed decisions. Such models of health care saw the patient as an object to be acted upon by the health care system. In contrast, contemporary models of care treat the patient as a partner, or at least as an informed participant, working with the provider to assess the problem and work towards a solution. By involving the patient in the assessment and treatment process, providers increase quality of care and often receive valuable information from their patients they may not have otherwise accessed.
Meanwhile, institutional restrictions on care replaces the health care professional’s medical judgment and ability to provide quality care, with institutional policies based on ideology rather than medical standard of care. In these cases, medical decision-making is taken away from both professional and patient and replaced by the beliefs of a third party. In some instances, patients and communities are further disadvantaged when institutions fail to provide accurate information about the services that are restricted. For example, many patients served by Catholic hospitals are not aware of their religious affiliation, and that their ability to access certain services, such as reproductive and sexual health care services, may be limited because of the religious affiliation of the hospital. This is also a growing area of concern at typically for-profit urgent care centers and retail clinics, where patients may be even less likely to think about or inquire as to whether they are related to a religiously-affiliated institution.
Moreover, religiously-based health care refusals have a disproportionate impact on people of color, who are more likely to give birth at a Catholic hospital than their white counterparts. Further compounding the problem is the fact that people of color also already have higher rates of maternal and infant mortality than white people. These institutional health care refusals fly in the face of standard of care by substituting religious and moral doctrine for medical judgment, and put people of color at even greater risk of negative health outcomes.
In sum, health care refusals fundamentally undermine standards of care by allowing or requiring health care professionals to abrogate their responsibility to deliver services and information that would otherwise be required by generally accepted practice guidelines. By refusing care, or by allowing or requiring health care providers to offer patients incomplete information about treatment alternatives, these policies deny informed consent, undermine standards of care, and contribute to poor health outcomes. Similarly, institutional restrictions prohibit health care professionals from meeting the standards of their profession and their patients’ needs. Focusing the conversation on medical quality and standards of care, as both a tool for education and advocacy, instead prioritize a patient’s health over both the personal beliefs or ideology of either individual providers or institutions.
*Hayley Penan worked at NHeLP from 2017 to 2019
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Health Care Refusals & How They Undermine Standards of Care. Part I: An Overview
