Hospice tip sheet offers pointers on data analysis, story ideas

Liz Seegert

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News, the Connecticut Health I-Team and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Photo: PJ Johnson via Flickr

Updated hospice compare data from the Centers for Medicare and Medicaid (CMS) had been slated for release on Nov. 21 but was delayed due to what CMS has described as “technical problems.”

Whether you use previous data or analyze forthcoming statistics, what these federal quality measures do not show is just as important as what they do, according to a new AHCJ tip sheet by journalist Cheryl Clark.

The goal of Hospice Compare is to help consumers evaluate hospice providers based on performance and assist them in making choices that are right for them. Now that Medicare reimburses providers (PBS) for discussing end-of-life care, more providers are willing to discuss the issue with patients and their families.

Seven quality measures endorsed by the National Quality Forum(NQF) in the Hospice Item Set (HIS) are provided at Hospice Compare:

  • Treatment preferences,
  • Beliefs/values addressed,
  • Pain screening,
  • Pain assessment,
  • Dyspnea (labored breathing) screening,
  • Dyspnea treatment and
  • Patients treated with opioids who are given a bowel regimen.

As Clark points out, reporters can help the public understand these quality measures to help ensure that a loved one’s end-of-life experience is as comfortable and pain-free as possible. No one wants to experience a painful death; how well hospice programs assess and manage pain is a critical component of the hospice compare data set. Clark does a stellar job of walking us through how to find meaningful data about hospice programs in a specific community. She provides a step-by-step account of how she sorted and analyzed information in a particular location – something to definitely “try at home.”

However, caveat emptor: hospice reporting is voluntary. Some hospices do not report information to CMS so data sets for a particular city or region may be incomplete. Also, it is not yet clear whether CMS will reimburse hospices based on quality scores, the same way they do hospitals. Currently, hospices are not required to report on team communication, timely care, respect for family members, emotional and religious support and several other measures, according to Clark. However, CMS plans to include them in the next update, slated for February 20.

Clark’s tip sheet offers numerous article ideas, including how to write about quality, how to localize stories for your community, suggestions on speaking with family members and with care providers. She suggests that families use the upcoming holidays (reporters too!) to talk with their loved ones about end-of-life wishes. This website, The Conversation Project, can help families get the discussion going. For additional background:

  • The Medicare Hospice benefit page has a good overview of what services are and are not covered.
  • This suggested checklist on Medicare.gov can help families when choosing a hospice program.
  • Despite some rather slick marketing by certain hospice programs, there are more than a handful that doesn’t live up to the hype. This terrific investigative piece from Kaiser Health News looks at how some programs abandoned patients who most desperately end-of-life care.
  • Interestingly, this recent story at Science Daily finds that a majority of hospice health care providers had not completed an advance directive for themselves.
  • Read this coverage at Modern HealthCare and McKnight’s Long-Term Care News about the latest delay in updating Hospice Compare data.

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