Lawmakers have put forth bills in both the Senate and the U.S. House of Representatives to foster greater utilization of advance care planning.
The Compassionate Care Act would establish a nationwide public education campaign to educate the people in the United States about the importance of advance care planning, including grants and pilot initiatives to educate students in medical, nursing, social work and other related fields about end-of-life discussions and care.
Sen. Richard Blumenthal (D-Conn.) has introduced the bill in the Senate. In the House, U.S. Representative Nanette Barragán (D-Calif.) sponsored the bill.
“Our measure will empower Americans who are without plans for end-of-life care to be prepared in the event they experience severe illness,” said Blumenthal in a statement. “By promoting end-of-life care through public awareness, expanding telehealth services, and working with physicians, we can ensure that patients of all ages are able to access the care that is best for them.”
If enacted the bill would significantly expand federal resources to support advance care planning and end-of-life care decision making. The legislation would also finance public awareness campaigns about hospice and palliative care.
Key provisions include:
- Establish guidelines for advance care planning between health providers and patients
- Launch a National Public Awareness Campaign that would encourage patients and providers to make end-of-life plans
- Direct the U.S. Secretary of Health and Human Services to develop education resources for providers to engage with patients, work with providers, state boards of medicine and clinical associations to develop advance care education resources and solicit feedback from providers and develop quality measures
- Improve access to advance care planning by expanding telehealth options for providers and patients
- Facilitate a study on a national advanced care planning registry that would allow patients to transfer their advanced directives from state to state
Hospice providers nationwide are seeking and developing strategies for engaging with patients earlier in the course of their illness, as many patients come into hospice too late in the course of their disease to reap the full benefit of those services. One such strategy is to encourage early conversations about death, dying and associated health care goals and wishes.
A general lack of awareness or understanding of the nature of hospice and palliative care has been a significant obstacle to increasing utilization. Early conversations are positively associated with family decisions to limit or withdraw life-sustaining treatments, fewer in-hospital deaths, fewer unplanned hospital admissions, shorter hospital stays, family satisfaction with end-of-life care and increased odds of receiving strong opioid pain medications in the last 24 hours of life, according to a study in the March 2019 issue of the Journal of the American Medical Directors Association.
A host of industry groups have applauded the legislation, including endorsements from the National Hospice and Palliative Care Organization, the National Association for Home Care & Hospice, Compassion & Choices, the Coalition to Transform Advanced Care (C-TAC), National Partnership for Healthcare & Hospice Innovation (NPHI), American Heart Association and the Connecticut Long Term Ombudsman Program, among others.
“We must ensure that every patient’s health care rights and wishes are respected by increased access to advance care planning,” said Barragán in a statement. “Few patients discuss ACP with their providers, and marginalized communities, including individuals with low incomes and non-English speakers, are even less likely to have the conversation.”
