Government, doctor or patient — whose health care preferences should be honored?

March 20, 2018

The following op-ed appeared in the Hill on March 20, 2018. Download this article.

The recently created “Conscience and Religious Freedom” division in the U.S. Department of Health and Human Services (HHS) Office for Civil Rights has received little public attention, but it should because it threatens to take away Americans’ access to numerous health care options. The deadline for public comments on this division to the Federal Register is next Tuesday, March 27.

This new division allows health-care providers who object to various procedures to impose their own religious beliefs on their patients by withholding vital information about treatment options from them. This division threatens to impact the availability of all health care options and more specifically end-of life care options and reproductive health-care services.

The end-of-life care options to peacefully end unbearable suffering include, among others, voluntarily stopping eating and drinking, palliative sedation or the withdrawal of treatment, options available to patients nationwide, often with the support of a physician or hospice. They also include medical aid in dying, which is authorized in California, Colorado, Montana, Oregon, Vermont, Washington State and Washington, D.C.

Shockingly, this taxpayer-funded office would empower government attorneys to sue health-care providers who sanction physicians for deliberately disregarding patient instructions specified in advance directives about their end-of-life care preferences, such as a directive to refuse extraordinarily invasive, painful treatment.

Patient preferences don’t matter at all. In fact, providers would be under no obligation to even let patients know which options exist. Patients whose written health-care preferences are violated would have no such taxpayer-funded legal support.

Federal law already gives health-care providers the right to refuse to deliver treatments based on religious or conscientious objections. No provider anywhere is required to prescribe medical-aid-in-dying medication or withdraw life-sustaining support.

Giving doctors permission to ignore patient’s written treatment preferences and then using federal funds to sanction health-care providers who stand up for patient autonomy and self-determination is shameful.

This is the heart of the debate about whether or not patients get to know what their health care options are. The proposed regulations would expand the government’s reach to withhold Medicare and Medicaid funding to health-care institutions if they do not allow doctors to refuse to advise or perform various health-care services they oppose to the detriment of patient care.

Tellingly, this new civil rights division has no mandate to protect patient rights. In fact, it is specifically designed to facilitate the denial of patient rights. By giving all the rights to the objecting health-care provider, this division is emboldening, empowering and spurring providers — and pressures other providers — to withhold information and referrals from patients in extreme pain and anguish, censoring their fundamental civil right to consider every available option. It solves no credible problem for any provider. But it does mean that patients will face more obstacles for dying in comfort and dignity and in a manner that is consistent with their values.

While the Administration has wide latitude to create this “Conscience and Religious Freedom” division, federal law provides a public comment period between now and March 27. The “Conscience and Religious Freedom” division is a serious threat to patient autonomy.

It denies access to end-of-life care options to vulnerable patients and sets a dangerous precedent for government intrusion in health-care decisions. Dying Americans need more options at the end of life, not more government intrusion.

This division is a blatant federal attempt to deny patient access to critical health care services and information that only will create divisiveness between health-care providers, doctors and patients when they are most vulnerable at life’s end.

Kim Callinan is the chief executive officer for Compassion & Choices, the largest national organization devoted exclusively to patient-driven, end-of-life care. She holds a master’s degree in public policy from Georgetown University. Kevin Díaz is the national director of legal advocacy and general counsel for Compassion & Choices. He earned his law degree at the University of Washington School of Law.

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