Sickest patients aren't surveyed
Sample is "very biased"
As it stands now, only hospital patients discharged to a home setting complete the Hospital Consumer Assessment of Healthcare Providers and Systems survey —- not patients who are discharged to a nursing home or rehab, or family members of patients who died in the hospital.
"Assessment of the quality of hospital care in the U.S. is based on only live discharges to a home setting," says Joan M. Teno, MD, MS, professor of health services, policy, and practice at Brown University's Warren Alpert School of Medicine.
"If you only talk to patients who can be interviewed, you are going to get a very biased sample," says Teno. "It doesn't reflect the sickest patients who have the greatest needs."
This conflicts with one of the basic tenets of palliative care — the importance of including family members caring for the patient, she adds.
Teno created the Brown University Family Evaluation of Hospice Care, which is currently being used by hospices to assess the quality of hospice care, and was part of a research team which created the CARE (Consumer Assessments and Reports of End of Life Care) survey, which measures consumer assessments of end-of-life care, and was endorsed by the National Quality Forum (NQF). (To obtain the CARE survey, send an email request to [email protected].)
"We have been making the survey available to people for free, along with the documentation that we provided to the NQF about its reliability and validity," says Teno. "So that is one measure people can use to evaluate how well they are doing."
Rates "appalling"
The most important thing health care providers can do right now is develop a care plan that reflects patients' preferences and values, argues Teno. "Right now, my sense is that what gets measured is largely utilization," she says. "What is harder to measure is consumer needs and expectations regarding care."
Teno points to her own 2004 study, which surveyed family members of 1578 patients about end-of-life care. For patients whose last place of care was a nursing home, 38% of family members said their loved one wasn't always treated with respect, and 38% said the patient had an unmet need for pain management.1
"When you look at those rates, they are appalling," says Teno. "While the rates for hospitals were not as bad as the nursing homes, hospitals also have opportunities to improve." Only 47% of family members of a patient who died in a hospital said the care provided was excellent, compared with 71% when the patient died at home with home hospice services.
"If we don't start providing care that is patient- and family-centered, we're really going to lose some of the consumer's confidence in the quality of care we are providing," says Teno.
Reference
- Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004; 291:88-93.
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