U.S. Ranks Low in EOL Care – C-TAC Asserts ACP Is Key to Quality

National Healthcare Decisions (NHDD) day is April 16th and we are highlighting advance care planning (ACP) as a part of end-of-life (EOL) care in the United States. NHDD exists to normalize conversations around EOL care by educating families and providers on the importance of advance care planning, a key C-TAC priority. 

A study performed by Duke University researchers in 2021 ranked the U.S. 43rd in EOL care quality. This ranking underscores the importance of examining planning as a key component of EOL care. C-TAC member Five Wishes advocates for widespread access to ACP options and offers comprehensive ACP programs that empower individuals, families, and providers to make thoughtful EOL care decisions. The organization even offers employers the option of providing ACP resources for employees through Five Wishes at Work. Five Wishes’ resources go beyond documentation to include training on the best practices for approaching ACP conversations and processes. The organization’s mission reflects C-TAC’s policy priorities around access to ACP and non-medical services that reflect the social needs of people living with a serious illness.

To mark National Healthcare Decisions Day 2022, we spoke to Five Wishes’ President, Joanne Eason to discuss how ACP fits into the bigger picture of end-of-life) care in the US and how our coalition can help normalize healthcare decision-making.

In response to the Duke University study, Eason highlighted the COVID-19 pandemic’s potential impact on EOL care ratings due to the number of families who were unable to be with their dying loved ones due to visitation restrictions. The indicators that the U.S. scored lowest in the Duke study included: communication from providers for patient decision making, care coordination, attention to non-medical concerns, appropriate life-extending care, and cost barriers – which was the U.S.’s lowest-scoring indicator.

The goals of advance care planning align with the aforementioned indicators and more, but recent studies show that only about one-third of U.S. adults complete any type of advance directive for EOL care. Furthermore, Eason pointed out that the indicators used to measure EOL care quality in the Duke study do not include the use of any planning documentation, such as an advance directive. Health services researchers and health systems should consider ACP components when measuring EOL care quality. Eason asserts that the healthcare decision-making process requires more than quality communication, “[without] written advance directives, families will not have something to refer back to in a time of crisis…yes, conversations need to happen, but that is just the beginning.” The resources Five Wishes provides help guide families and clinicians through the ACP process while ensuring both are equipped to effectively play their part as decisions are being made and documented in an advance directive.

To ensure that thoughtful decision-making and planning is being done across the healthcare system, we must effectively capture the success of advance care planning in improving the quality of EOL care. So far, measuring ACP success through its inclusion in quality metrics has not been widely prioritized. According to Eason, there is value across our field in demonstrating ACP’s contribution to quality EOL care, she says, “a rising tide lifts all boats …so bringing attention to this need benefits everyone working in EOL care.”

C-TAC members are uniquely positioned to make an impact during National Healthcare Decisions Day by normalizing EOL care conversations. Eason encourages C-TAC members to take action and begin developing partnerships and programs that help normalize care planning conversations and accessing resources, such as Five Wishes ACP toolkits.

To learn more about how C-TAC’s policy and advocacy priorities align with NHDD, visit our policy webpage here. 

Written by Andrew Lozano – C-TAC Communications Specialist