The latest from Compassion & Choices

Federal Gov’t Urged to Reverse New Waiver that Could Result in Increased Rationing of Care

End-of-Life Care Group Warns Waiver Undermines 30-Year Policy  Supporting Patient-Directed End-of-Life Care

Compassion & Choices has sent a letter to Health and Human Services Secretary (HHS) Alex Azar urging him to rescind a new, but little-known waiver of a federal law requiring hospitals and other healthcare facilities to inform patients of their legal right to accept or refuse medical treatment.

The Centers for Medicare and Medicaid Services (CMS) issued the waiver of the 1990 Patient Self-Determination Act requirement last week, but the waiver has escaped public notice because of the avalanche of policy prescriptions for the coronavirus (COVID-19) pandemic.

The end-of-life care advocacy organization warned this waiver could result in some patients receiving unwanted medical treatment and others not receiving treatment they want and desperately need to have a chance to survive.

Compassion & Choices recommended HHS take several actions designed to result in widespread adoption of advanced care plans before hospitalization, which will reduce biased decision-making and care rationing.

The Patient Self-Determination Act requires healthcare facilities to advise patients of their rights under state law to document their end-of-life care preferences in an advance directive, if they can no longer speak for themselves. It also requires providers to share their written policies respecting the implementation of such rights.

Compassion & Choices President and CEO Kim Callinan

Compassion & Choices President and CEO Kim Callinan

“[R]esearch studies and clinical practice demonstrate when patients have open and honest conversations with their healthcare providers about available treatment options, the vast majority will choose to forgo invasive end-of-life treatments…and futile care, rather than hospitals and doctors having to ration it,” wrote Compassion & Choices President & CEO Kim Callinan. “Given this [reality], rather than waiving requirements that hospitals inform patients of their advanced directive policies, we urge that you support widespread adoption of advance care planning.”

A new study published this month in the New England Journal of Medicine found that 80 percent of seriously ill patients would choose to die one year sooner if that meant avoiding invasive treatments in intensive care units (ICUs) like ventilators and resuscitation in the final weeks of their life.

The letter recommends CMS take four “immediate actions that support patient-directed care while relieving clinicians of moral injury that they are experiencing when making difficult decisions about patient care without patient input:

  1. Reinstate the requirements under the Patient Self-Determination Act for hospitals to inform patients about their advance directive policies.
  2. Issue guidance to urge physicians to engage in advance care planning visits available via telehealth through Medicare.
  3. Allow electronic authentication of advance directives for certifying patient wishes.
  4. Urge clinicians to utilize advanced care planning tools that address COVID-19 realities.”

“There have been an increasing number of stories in the media about the extreme stress the COVID-19 pandemic is placing on front line workers including physicians,” the letter concluded. “Being put in the untenable position of having to make end of life decisions for patients — without clear direction from them — only increases the stress.”

To help patients to understand their end-of-life care options, so they can document them in an advance directive or have their physician document them in a Medical Orders of Life Sustaining Treatment (MOLST), Compassion & Choices has created a free online COVID-19 Toolkit: Understanding Your Options, Using Telehealth to Reduce Your Risk, Advance Care Planning, Addendum to Your Advance Directive, and Dying in the Age of the Pandemic.