based opportunities to e-mail questions and suggestions would facilitate this exchange.

  • The Centers for Medicare and Medicaid Services (CMS)—formerly known as the Health Care Financing Administration—should consider minor increases in the data elements recorded on Medicare claims under the hospice benefit. This topic should be addressed by the Medicare Payment Advisory Commission (MedPAC), a Congressionally-mandated organization that advises CMS on the Medicare system. Ongoing efforts should be directed towards facilitating links among key types of data collection, especially between surveys and health care utilization records.

Recommendation #3: A New National Mortality Followback Survey

The federal government should undertake a new National Mortality Followback Survey to enhance the accuracy and richness of data collection related to quality of life and care at the end of life.

A new National Mortality Followback Survey program of regular, periodic surveys that gather comparable data over time, should be initiated. The new NMFS would be a collaborative effort between the National Center for Health Statistics (which would carry out the survey), the National Institutes of Health (NIH), and the Agency for Healthcare Research and Quality (the latter organizations would sponsor the survey). As the lead institute for end-of-life research at the NIH, the National Institute of Nursing Research could take a major role in supporting a National Mortality Followback Survey and determining content, with collaboration from other NIH institutes (in particular, the National Institute on Aging, but possibly including some of the disease-oriented institutes), and the Agency for Healthcare Research and Quality. Three specific aims should be considered for future National Mortality Followback Surveys. First, a major focus should be on determining the extent of morbidity experienced at the end of life, to aid the long-range goal of reducing unnecessary morbidity. Second, deaths among children should be oversampled in order to yield information specific to this understudied group. And third, minority populations should be over-sampled to improve understanding of ethnic and racial differences in the experience of death and dying in the United States.

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