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Currently, quality of life and patient-centered care for people with serious illness is poorly measured, says Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care, a New York City-based organization devoted to increasing the number and quality of palliative care programs in the United States.
"The most prominent measure that attempts to get at these outcomes is the HCAHPS [Hospital Consumer Assessment of Healthcare Providers and Systems] patient experience survey," she says. This covers pain management, and quality of communication from staff.
However this measure misses seriously ill individuals who typically cannot fill out the survey, and those who have died. "Thus, for all of these patients, essential aspects of quality, like goal and preference-concordant care and pain and symptom management, are not measured at all," says Meier. "Also not measured are caregiver stress and duress."
Many more measures are developed that address care quality for relatively healthy people, Meier adds, than for the sickest patients. "These patients are often too sick to advocate for themselves," she says.
Meier says one necessary process measurement is whether a goals of care conversation took place with the patient and family, and the quality and documentation of that discussion.
"This process measure would move us a long way towards more patient-centered care," says Meier, adding that "the holy grail of ethical outcome measurement" is the degree to which care actually provided helps the patient achieve the goals and the kind of life most important to them.
"This is difficult and costly to measure," she says. "We are not close developing a reliable strategy to capture this information."
The Affordable Care Act (ACA) requires measurements of patient experience. "However, there is no clear mandate that patient-centered domains of care, like psychosocial or spiritual care, be measured," says Meier.
The ACA does require measurement of some aspects of quality that palliative care impacts substantially, including readmissions and efficiency.
"There is a growing body of research showing how palliative care can reduce readmissions and non-beneficial services," says Meier. "For those entities that must report on these measures, an effective quality improvement initiative should include palliative care."
The ACA’s Medicare Shared Savings Program encourages Accountable Care Organizations (ACOs) to provide care more efficiently. "In order for an ACO to improve efficiency of care while improving quality, it will have to manage its most at-risk population," says Meier.
There is a need for palliative care to be fully integrated with a holistic approach to patient care, underscores Daniel B. Hinshaw, MD, professor of surgery at the University of Michigan School of Medicine and founding director of the Palliative Care Consultation Service at the Veterans Administration Medical Center, both in Ann Arbor.
"The mistake that happens, unfortunately, with palliative care, is that now that it’s become a medical subspecialty, it’s been buttonholed in a particular spot," he says. "It really needs to move into the mainstream."
The quality of end-of-life care is challenging to measure for several reasons. "It’s much easier to get your mind around measures of physical distress," Hinshaw says — such as the percentage of patients with pain identified on initial screening that received pain management within 24 hours.
"One area that quality improvement efforts need to address, is to try to measure the quality of spiritual care," says Hinshaw. "The psychological, social and spiritual realms are of profound importance to patients, but are much more difficult to define."
Providers are often more focused on treating the disease, he says, "and the person who has the disease is often lost in the shuffle."
One of the ways in which the VA is measuring the quality of end-of-life care is through caregiver interviews after a patient’s death, done by phone and by mail. "The data is collected and collated in such a way that it can be given back to the institutions as feedback, to let them know how they are doing against the larger system," says Hinshaw. The interviews cover how satisfied the family was with caregivers’ communication, and their perceptions of the quality of pain relief.
"There will always be a necessity for qualitative research methodologies--the careful interviews, focus groups and so forth--no matter how messy it is from the quantitative perspective," says Hinshaw.