HHS Asked to Rescind End-of-Life Directive Waiver

Advance directives let patients decide if they want invasive medical treatment. Photo credit Shutterstock licensed.

NEW YORK – Advocates for end-of-life care options have written a letter asking the federal Health and Human Services Secretary to reverse a waiver of a federal law that requires patients to be informed of their right to refuse treatment.

The Centers for Medicare and Medicaid Services issued the waiver last week. According to Kim Callinan, president and CEO of the organization Compassion and Choices, research shows that when given the option about 80% of seriously ill patients will refuse invasive medical procedures, but with the waiver in effect, fewer people will be asked.

“It’s going to make health-care providers ration care for their patients rather than empowering patients to make decisions,” says Callinan, “and allowing their decisions to be paramount in end-of-life planning.”

She strongly recommends that everyone fill out the state form specifying advance directives for end-of-life care. The forms are available online at compassionandchoices.org.


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Corrine Carey is senior campaign director for Compassion and Choices in New York and New Jersey. A few days ago, both she and her husband tested positive for COVID-19.

She says that has raised the level of discussion about end-of-life planning in her household.

“For myself, for my family, it’s really important that you know what your loved ones want,” says Carey, “and what level of care you want should you be facing a health-care crisis.”

To accommodate social-distancing restrictions, Gov. Andrew Cuomo has signed an executive order easing regulations for documents including end-of-life directives.

Callinan notes that the letter sent to HHS Secretary Alex Azar this week encourages him and Congress to actions that will benefit both patients and health-care providers.

“Reinstate the Patient Self-Determination Act requirement,” says Callinan, “and instead take some very specific actions that will result in much more widespread adoption of advance-care planning.”

She contends that advance directives give providers much-needed guidance, especially when hospital resources are strained by a health crisis such as the COVID-19 pandemic.

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