Report shares ideas for improved end-of-life care

Liz Seegert

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in Kaiser Health News, The Atlantic.com, New America Media, AARP.com and other outlets. She is a senior fellow at the Center for Health, Media & Policy at Hunter College in New York City, and co-produces HealthStyles for WBAI-FM/Pacifica Radio.

Photo: Zach McCormick via Flickr

The inaugural Aspen Health Strategy Group (AHSG) report on improving end-of-life care pulls few punches in calling for significant changes in care design, delivery, financing, quality measurement and care provision.

The conclusions from the year-long study, which included input from dozens of health care leaders and experts, appealed for a serious overhaul by health systems, payers, academia, and policymakers of palliative and hospice care.AHSG is part of the Aspen Institute non-partisan think tank. You may have seen a recent post by the group’s co-chairperson, Kathleen Sebelius, and Tommy Thompson, both former governors and Health and Human Services secretaries, which previewed the findings. They want more to be done to ensure “Americans die according to their wishes.”

Tommy Thompson

The 113-page compendium details how this can occur and examined a collection of papers from subject-matter experts on systems, payments and ethics. In typical Aspen Institute fashion, the report includes “Five Big Ideas to Improve Care at the End of Life.” There’s also a final consensus statement by the group.

“The way we live and the way we die have changed dramatically over the past 50 years, but the medical and social systems that support us as we approach the end of life have not kept up,” the authors write.

Moreover, despite committee members’ varying backgrounds and perspectives, they agreed on several important points:

  • The quality of end-of-life care is a major public health concern.
  • There is still too little consideration for patient and family preferences, social or emotional needs as a person’s end of life approaches.
  • Current care delivery and reimbursement systems encourage fragmented, uncoordinated care, often subjecting patients to unwarranted and unneeded interventions.
  • Ethical challenges surrounding end-of-life care are becoming more difficult, not less.
  • New payment models are have not kept pace with hospice and end-of-life considerations, leaving them marginalized or ignored in value-based payment structures.

This recent article in Health Affairs supports this last conclusion, criticizing Medicare for not doing enough to encourage palliative care.

Kathleen Sebelius

End-of-life care is something too many of us don’t talk about until we have to, typically when faced with a serious diagnosis or sudden traumatic injury. As previously reported in Covering Health, this tendency puts vulnerable populations, especially older adults, at risk of getting care that doesn’t match their preferences. This commentary in the San Antonio Express-News took one policymaker to task for their lack of awareness and sensitivity about the issue.

The AHSG report calls for:

  • Building on the advance care planning process to ensure that patient preferences are honored at the end of their life.
  • Changes in Medicare coverage that would better meet the needs of those with serious and complex
  • Development of end-of-life quality metrics to foster accountability, transparency, improvement and payment.
  • Expand palliative care training and scope of training to more health professionals.
  • Supporting current and future efforts which embrace new approaches to care for people with advanced illness.

“We hope these papers and ideas will spur needed changes and promote improvements in care for Americans approaching the end of life,” wrote Sebelius and Thompson. Sebelius was HHS secretary under President Barack Obama, and Thompson served under President George W. Bush.

In addition to Sebelius and Thompson, AHSG includes 21 other thought leaders across a variety of health sectors, including government, non-profit, academia, insurance, pharma, and health systems. The group tackles one health issue through an in-depth study annually.

Journalists may want to explore what programs and services are available in their communities to encourage advance care planning, support patient- and family-centered end-of-life care, better educational outreach by hospitals and health systems, individual volunteers and Home and Community-Based Services (HCBS) programs.

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