Where are the Patient-Centered Quality Measures?

The U.S. health care system lacks the ability to measure whether patients and families are receiving high-quality care near the end of life that reflects their goals and preferences.

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For more than 20 years, quality measures—tools used to assess health care processes or patient outcomes against recognized standards—have proliferated in nearly all areas of medicine, helping providers improve patient safety, reduce hospital readmissions, and better manage chronic diseases such as diabetes. However, quality measures for end-of-life care are a glaring exception: The U.S. health care system lacks the ability to measure whether patients and families are receiving high-quality care near the end of life that reflects their goals and preferences.  

As a result, the health care system often fails to provide individuals and families—when they are at their most vulnerable—with what experts call patient-centered care.  For example, although the majority of people say they would prefer to die at home, today two-thirds of seniors die elsewhere, such as hospital intensive care units or nursing homes, where they may receive unwanted treatment.  

This failure to honor people’s wishes near the end of life is likely to grow as the U.S. population ages. The number of people in the United States  65 years or older is projected to more than double by 2060—accounting for about one in  seven people, almost all of whom will have primary health care coverage through Medicare. 

As such, Medicare should focus on developing new measures that assess how clinicians and health systems understand and respect patient preferences for end-of-life care. Some patients want to spend time with family and friends, while others place a higher priority on pain control, even if it means they may be less aware of their surroundings in their final days. Some people might give priority to receiving potentially curative treatments and life-saving interventions, while for others, the most important thing may be ensuring that they can spend their last days at home.  Regardless of what a seriously ill person wants, Medicare needs new tools to assess whether these preferences are being met.

Congress has a key role to play in improving end-of-life care. In particular, Congress, through bipartisan legislation now pending in the House of Representatives and Senate, should direct Medicare to develop measures that assess how well the health system helps patients meet their end-of-life goals and wishes, and provide funding for the agency to support this effort. This is consistent with recent calls from the National Academy of Medicine and the Medicare Payment Advisory Commission to focus on measuring what is most meaningful and relevant for patients. 

Our older population is growing and their end-of-life decisions deserve to be respected.  The time to make sure that happens is now.

Lee Goldberg directs The Pew Charitable Trusts’ improving end-of-life care project. Katy Barnett is a senior associate on the project.

This piece was previously published by U.S. News & World Report on November 28, 2016.