Serious Illness Care: Measures Can Add Patient Insight

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Care for the seriously ill is an emerging field. Programs that offer care in the community to people living with serious illness are proliferating across the country. They range from small hospices caring for seriously ill people who are not yet eligible for the Medicare hospice benefit, to national companies that contract with insurance companies to offer care and services to people in their homes.

Serious Illness Care: Made for Measures

These programs meet a gap in the U.S. health care system, which emphasizes office visits and, for the sickest, care in hospitals and nursing homes. As the country moves toward value-based purchasing, they are becoming popular because of their potential to decrease costs by giving people only the care that will help them achieve their goals: not too much, not too little. But a rush to reduce costs could also reduce care quality.

Seriously ill patients include those with a life-threatening condition that adversely impacts their lives. Because care for these patients is an evolving field, there are few measures of care quality. Most existing measures focus on assessment and pain, which are both important, but don’t address the expansive needs of seriously ill patients.

Serious Ilness Care: Our Approach

With support from the Gordon and Betty Moore Foundation, and building on work supported by the John A. Hartford Foundation and The Scan Foundation, NCQA is developing measures for serious illness care that starts with what matters most to patients and their families. We are evaluating whether measures can link goals to care and care outcomes. These person-driven measures of goal-concordant care will be considered for accountability programs addressing serious illness care.

You can find more details on this work in our downloadable white paper.


Maureen Henry
Maureen Henry, JD, PhD, is a Research Scientist at NCQA, focusing on health care performance measurement for older adults and people with serious illness. She is the Principal Investigator for the Serious Illness Measures Project, funded by the Gordon and Betty Moore Foundation. For nearly twenty years, Dr. Henry has served in non-profit, state, and federal policy positions addressing serious illness care and aging. Dr. Henry was awarded a PhD by the University of Utah College of Nursing, Hartford Center for Geriatric Nursing Excellence, and JD by the University of California, Berkeley, Boalt Hall School of Law. She is an Associate of the University of Utah Division of Medical Ethics, Adjuct Assistant Professor at the University of Utah College of Nursing, and a member of the Penn Medicine PAIR (Palliative and Advanced Illness Research) Center External Advisory Board.

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