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Much work still needs to be done to identify a core set of quality metrics that are feasible, scalable to large health care systems, and can be used to improve palliative and end-of-life care, according to J. Randall Curtis, MD, MPH, professor of medicine and director of the UW Palliative Care Center of Excellence at University of Washington in Seattle.
"Measurement of the quality of end-of-life care is an important area of focus for us to ensure that all patients and their families receive the type of end-of-life care they would want if fully informed about the options," says Curtis.
Quality of end-of-life care has multiple domains that need to be measured, he emphasizes. These include:
• effective and sensitive advance care planning to identify patients’ informed goals of care;
• provision of care that matches the patients’ goals;
• comprehensive symptom assessment and management;
• emotional and spiritual support;
• support for the family.
Providers have an ethical responsibility to provide high-quality care for those with serious illness and at the end of life, underscores Christine S. Ritchie, MD, MSPH, professor of medicine and Harris Fishbon Distinguished Professor at the University of California, San Francisco.
"By developing measures for this population and for this field, we will be able to better ascertain where we can most improve," she says.
Quality of care has been a concern of hospice and palliative care for many years, says Ritchie, adding that in 2001, the National Consensus Project was one of the first initiatives to establish a set of expectations regarding quality of care for those with serious illness (http://www.nationalconsensusproject.org).
"Since then, there has been a steady growth of quality measures developed for palliative care, especially for cancer patients," says Ritchie. "Many measurement gaps remain, however."
Some of the measures have been endorsed by the National Quality Forum and other quality metrics organizations. The American Academy of Hospice and Palliative Medicine’s "Measuring What Matters" initiative will recommend five to 10 measures for palliative care programs to use for program improvement.
"The goal of Measuring What Matters is to develop population-level measures that are not site- or condition-specific, but apply to all patients in need of palliative care, whether primary or specialty," says Ritchie.
There is increased focus on palliative care and hospice as programs that add value and are cost-effective to an integrated health care system in every setting, she notes. Ritchie and a colleague are currently identifying specific quality measures relevant to adults with multiple illnesses with functional limitations who receive primary and/or palliative care in the home.
"This is an important time to make sure that high-quality palliative care is provided across all sites and settings — in the hospital and the home," she says.
The focus of the Affordable Care Act (ACA) on improving the quality and value of health care provides an important opportunity for measurement of quality of end-of-life care, according to Curtis.
"Since end-of-life care consumes a considerable portion of our health care budget, it is an important target for efforts to improve value, and, therefore, quality," says Curtis.
That the Affordable Care Act requires the quality measurement of hospice care is "an important first step," says Joan M. Teno, MD, MS, professor of health services, policy, and practice at Brown University’s Warren Alpert School of Medicine in Providence, RI.
The continued growth of new payment approaches underscores the importance of measuring the quality of end-of-life care. "It is important that we examine how a vulnerable population such as the dying receives medical care at the close of life that respects their values and goals," says Teno.
She notes that the U.S. health care system is currently in the process of payment reform, with continued increase in the number of Medicare Advantage Plans and Accountable Care Organizations.
"In the future, dying persons will be cared for in those new types of payment innovations with virtually no quality measures," says Teno. "There is limited research examining the quality of care of vulnerable populations, many who are cognitively impaired."
Many patients with serious illness receive more intensive and expensive care than they would choose if they were fully informed and provided with high-quality palliative care, adds Curtis. "Therefore, measuring and improving palliative and end-of-life care becomes an opportunity to simultaneously improve quality and reduce costs," he says.
One ethical concern, however, is that cost reduction will be the sole focus, without improving or at least maintaining quality. Curtis says another important ethical consideration is that any system of measurement of quality of end-of-life care must incorporate individual variability in goals of care, which vary by race, ethnicity, socioeconomic status, religion, and culture.
"It is important that we develop systems of measurement that incorporate the individual’s goals of care and not focus on the average’ goals of care," says Curtis.