Knowing how well we are doing or whether things are getting better in end-of-life care requires some routinely collected information. It may be possible to make better use of data already being collected (including those collected for other purposes), but it also may be desirable or necessary to gather new types of data. The Board, therefore, decided to undertake an assessment of the information potential of current data sources to assess quality of life and quality of care at the end of life. Recognizing that the issue existed not only for deaths from cancer, but for all deaths, this report was undertaken in collaboration with the Board on Health Sciences Policy in this project that looks at deaths from all causes and at all ages, including childhood.
The National Cancer Policy Board was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. In April 1999, the National Cancer Policy Board released a report, Ensuring Quality Cancer Care (IOM, 1999), which included a recommendation to “Ensure quality of care at the end of life, in particular, the management of cancer-related and pain and timely referral to palliative and hospice care.” The Board’s July 2001 report Improving Palliative Care for Cancer further explored that mandate through a collection of commissioned papers covering economic issues, quality indicators, patient and family information, care of vulnerable populations, pediatric oncology, clinical practice guidelines, research issues and professional education. Recommendations were made in a number of those areas, but the Board deferred recommendations related to data collection until a follow-on report could evaluate (1) the capacity of currently collected data to assess care at the end of life and (2) the needs for data in the future to monitor improvement efforts. This report fills that gap.
The National Cancer Policy Board’s July 2001 report on palliative care is the immediate predecessor of this report, but a broader foundation in this area had been laid by the Institute of Medicine’s 1997 report Approaching Death: Improving Care at the End of Life. The 1997 report, produced by the Institute’s Committee on Care at the End of Life, proposed a conceptual definition of a good death: one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. The key components of this definition will be incorporated into the later discussion of data elements needed to monitor the quality of care at the end of life.