Societal Factors, Poor Coordination Impede Advance Care Planning Outcomes

Fragmentation and variation in advance care planning processes are undermining the effectiveness of those services, according to recent research. A range of societal factors, regulatory hurdles and a lack of care coordination between health care settings have erected barriers between patients and services that are aligned with their priorities.

Prior studies have shown that advance care planning can boost hospice and palliative care utilization, reduce hospitalizations and health care costs, and align the delivery of care with patient wishes. But recent research calls into question the link between advance care plans and goal concordant care at the end of life.

The new research, published in JAMA Network Open, indicates that advance care planning has not been proven to improve end-of-life care outcomes, nor does it necessarily result in “reliable and valid” quality indicators of end-of-life discussions, co-author Sean Morrison, M.D. told Hospice News.

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“For patients who went through advanced care planning compared with those who didn’t, there was no difference in the concordance of what they want and what their surrogates say they want,” Morrison said. “There was also no discernible impact on real-time medical decision making at the end of life. The science and the data simply don’t suggest that advanced care planning is achieving those outcomes.”

Morrison is professor and chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York. Additional co-authors included physician Diane Meier, M.D., and Robert Arnold, M.D. Meier is a geriatrician and palliative care specialist and founder of both the Center to Advance Palliative Care (CAPC) and the New York-based Hertzberg Palliative Care Institute.

Arnold is professor of medicine and chief of the Section of Palliative Care and Medical Ethics at the University of Pittsburgh.

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Morrison, Meier and Arnold reviewed more than 6,000 research articles published between 1990 to 2021, seeking a better understanding of advance care plans effectiveness.

The researchers consistently found that advance care plans offer no guarantee of better patient outcomes or satisfaction. Additionally, patients and their families did not indicate reduced feelings of anxiety or improvement in satisfaction or perceptions of the quality end-of-life care that they received, Morrison indicated.

The absence of end-of-life conversation skills in medical education is a contributing factor, the researchers found.

Goals of care conversations are difficult, complex and require sophisticated communication skills, according to Morrison. Most clinicians in the United States are never trained to conduct these discussions. In many cases, patients and providers leave these conversations with very different perceptions about what actually happened, he stated.

“The future is now,” for the vast majority of people in hospice, and discussions at that point should focus on patients’ immediate goals, Morrison said. Hospices should identify whether prior discussions have taken place and to what extent. This can prove challenging as patients change providers or see multiple clinicians as they meander through the health care system, Morrison indicated.

Impacting this are limitations in existing public policy, a fragmented electronic health care record system and public misperceptions about advance care planning.

Enhanced coordination between hospices and other care providers can help mitigate some of the barriers, according to Carole Montgomery, M.D., executive medical director, Respecting Choices, a division of the Coalition to Transform Advanced Care (C-TAC) Innovations.

Ideally, patients and providers would initiate these conversations well in advance of a six-month terminal prognosis.

“We have to look upstream and think about what is the quality of the conversation that [goes] into completing the advance care planning,” said Montgomery. “Because when you start advance care planning upstream, it improves access for the community [providers] serve, and it ends up benefiting the patients who do enroll in hospice.”

Health care stakeholders, including advocacy groups, providers and private companies have worked to develop more standardized solutions in hopes of maximizing the potential benefits of advance care planning. But this is difficult to achieve without a national strategy to address this issue.

Currently most advance care planning policy exists at the state level, with significant variations among those rules.

Houston-based Koda Health Inc., for example, recently received $3.5 million in growth capital to expand its advance care planning platform to all 50 states. Prior to these investments, the company’s reach was limited due to the asymmetrical regulatory landscape.

“Because there are differences in regulations and requirements between each state, thus far we’ve been pursuing opportunities in select markets,” Koda CEO and Co-founder Tatiana Fofanova told Hospice News. “That really makes sense rather than proactively building out the capability to roll out in each state. With this new injection of capital we’ll actually be creating the content and building out the platform to be legally compliant in every single state, regardless of market opportunity.”

The difficulties surrounding advance care planning to some extent reflect the larger deficiencies of the nation’s health care system. Patient care is often oriented around the system’s culture and processes, rather than orienting the system around the patients’ needs.

These societal and cultural patterns are larger forces at play in advance care planning practices, according to Morrison.

“We don’t as a society really have the capacity to support the needs and wishes of what people really want,” said Morrison. “There are so many of these advance care methodologies in our fragmented health care system that there is no one place to access them and no consistent way for people to update and continue them. Institutional, regional and cultural practice patterns change. There’s a lot that undermines the fundamental framework of advanced care planning, and the science now bears that out.”

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