Talking about life-limiting illnesses or death is difficult and highly personal, but new tools and information for patients and their families can help ensure patients receive the care they want and have options for limiting unnecessary pain. These tools make it clear that delivering world-class care, respectful of personal preferences, to patients in their final days and hours is achievable.

The American Hospice Foundation (AHF) is helping America move closer to meaningful improvements in palliative and end-of-life care and achieving the respective NPP Goals by developing and pilot-testing a Hospice Consumer Report Card. For nearly five years, consumers have relied on publicly reported hospital data to make better-informed decisions about their hospital care; now, AHF’s report card takes that one step further by helping lay the groundwork for patients and their families to evaluate and compare hospice programs on the basis of quality.

The Partners have identified increased access to high-quality hospice services for patients dealing with life-limiting illnesses as one of the top Palliative and End-of-Life Care Goals. AHF Vice President and COO Marsha Nelson hopes the report card will clear up many of the misconceptions about hospice care.

“The aim of the report card is to enable patients and their families to make informed decisions at a time when they can be the most vulnerable,” says Nelson. “More than one million Americans die each year of chronic and debilitating illnesses without receiving hospice services. For the first time, this report card allows patients and families to compare hospice providers in their communities.”

Measures used for the Hospice Consumer Report Card are geared towards areas that have been previously identified as important to consumers. For example, measures address family satisfaction with communication and responsiveness of staff as well as satisfaction with the information conveyed about the patient’s condition. Other components of the report card address hospice services such as bereavement programs, as well as staff competency.

The Report Card stands to drive quality improvement in hospice programs. As with the rest of the healthcare industry, what gets measured and reported gets improved. Nelson notes that in the ongoing pilot tests of the report card, participating hospices are motivated to improve their performance scores when they see the results achieved by competing hospices. Otherwise, consumers could take their loved ones elsewhere for care.

“We’ve seen the success of public reporting across other sectors of healthcare, and bringing best practices to light in hospice care will help providers more easily identify what is and isn’t working for them, and how they can make improvements,” says Nelson. “Additionally, publicly recognizing outstanding hospice programs allows patients to recognize and appreciate the goals of hospice care, which include pain management and symptom relief.”

A prototype of the report card is currently in the pilot-testing phase with hospices across the country on a voluntary basis. Future phases include testing with consumers.