As we enter the new year, end-of-life care continues to be at the center of healthcare reform and public policy discussion. Tragically, COVID-related deaths continue to rise and many Americans are realizing that they do not have adequate advance care plans in place. The Massachusetts Serious Illness Care Coalition estimates that only 50% of people with serious health conditions have discussed their end-of-life wishes with loved ones. At Vynca, we believe that advance care planning is not a one-time decision but rather an ongoing conversation between patients, their loved ones, and healthcare providers. Although the need for enhanced education exists, we find that many clinicians simply lack the resources or time to conduct end-of-life conversations at scale.
The Compassionate Care Act
Senator Richard Blumenthal (D-CT) introduced the Compassionate Care Act this past December, a piece of legislation aimed at increasing awareness for advance care planning. The Act seeks to prioritize advance care planning as a national topic of conversation.
The legislation calls for three major initiatives:
- The Act would provide federal funding for a public awareness campaign around end-of-life planning. This would be accomplished through a website and enhanced digital resources available to patients and their providers.
- The Act directs the Health and Human Services Secretary to work directly with providers, state medical boards, and clinical associations to develop advance care planning education resources for students in the allied health professions. Adding advance care planning to graduate school curricula would equip our next generation of healthcare workers with the tools to conduct vital end-of-life conversations with patients.
- The Act would allow for a pilot study on the feasibility of a national advance care planning registry, whereby patients could transfer their advance directives from state to state. Given that living will legal formalities differ across states, a national registry would promote interstate advance care planning efforts. As health systems continue to consolidate and expand, a national registry would also promote interoperability through various electronic medical record systems. Vynca currently works with several states and Health Information Exchanges to develop registries. We believe that a national registry, although initially laborious, will be a tremendous benefit to all stakeholders. Knowing that an advance care plan will be available and honored across the entire country will give patients and their loved ones added comfort.
A Shift in How We Think About Advance Care Planning
The Compassionate Care Act represents a slow but persistent paradigmatic shift in how we think about advance care planning. After seeing so many die in 2020, many Americans are now reconsidering whether drastic and costly medical interventions should be undertaken at the end of one’s life. Vynca’s mission is to ensure that patients receive goal-concordant care, whether that means focusing on a individual’s comfort or additional medical interventions. The first step in this process is to understand how advance care planning works. The Compassionate Care Act encourages these important conversations by raising awareness around the importance of end-of-life planning.
Others Supporting the Compassionate Care Act
Additionally, the Compassionate Care Act has broad support from influential healthcare organizations such as the Coalition to Transform Advanced Care (C-TAC), the National Partnership for Healthcare and Hospice Innovation (NPHI) and the National Hospice and Palliative Care Organization (NHPCO). Indeed, the Executive Director of C-TAC, Jon Broyles,
called the legislation “innovative” and patient-focused. We agree with Mr. Broyles and hope the Act receives bi-partisan support.
Ultimately, the Compassionate Care Act is about making end-of-life planning a normal part of a patient’s care—both from the perspective of the patient and the provider. Unfortunately, we have learned that even patients who complete advance directives are not entirely confident that their expressed wishes will be followed by providers. In his End Well Take 10 talk several weeks ago, Dr. Atul Gawande noted that such patient distrust cannot be tolerated and that all advance directives must be absolutely honored. The Compassionate Care Act is an important step in the right direction and as more providers and patients learn about advance care planning, we hope that end-of-discussions become a normal part of the care cycle.
Alex Paris is a legal intern at Vynca. He is a third year law student at Michigan State University College of Law where he is the Notes Editor of the Law Review.