2004S-0170 - Medicare Prescription Drug, Improvement, and Modernization Act of 2003, Section 1013: Suggest Priority Topics for Research
FDA Comment Number : EC35
Submitter : Ms. Judith Peres Date & Time: 06/07/2004 07:06:49
Organization : Last Acts Partnership
Consumer Group
Category :
Issue Areas/Comments
Thank you for the opportunity for Last Acts Partnership to provide input on the priorities for research, demonstrations and evaluations under Section 1013 of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA). Last Acts Partnership is a national, not- for-profit organization that represents individual members, national, state, and local organizations, and nearly 400 grassroots coalitions committed to improving care and caring near the end of life.

The Medicare program, which serves persons age 65 and older and those with disabilities, is the most important source of health insurance for Americans at the end of their lives. Medicare spending for decedents accounts for over one-quarter of Medicare?s total annual spending, a share that has not increased over time. Death in America is, for the most part, a Medicare issue. Of the approximately 2.5 million Americans who die each year, 75 percent are over the age of 65. When the disabled population is included, Medicare covers over 80 percent of decedents. Therefore, Medicare?s rules and payment structure has a significant impact on end-of-life care.

Last Acts Partnership believes that careful consideration and study of various aspects of end-of-life care in the Medicare and Medicaid population is an essential step to Medicare reform. End-of-life topics include health-related decision making (advance directives, awareness of hospice, satisfaction with provider communication, decision making style, perception of available options); health care utilization and financing (utilization of services including last place of care, length of stay in various settings, including hospice, intensity and types of medical treatment, number of health care transitions in last month of life, payment sources, insurance coverage); quality of health care (provision of desired physical comfort and emotional support, pain and other symptom management, decedent and family treated with respect, family needs attended to, overall assessment of quality and unmet needs, bereavement support); health and illness variables (diagnosed medical conditions, health behaviors, cognitive status, problem behaviors, mental health status, functional status); and palliative care (including the prescription drugs used at the end-of-life, broadening the type of prescription drugs that can be administered beyond the hospice benefit and covered by Medicare, and availability of the full range of palliative care drugs).

Many of the issues related to end-of-life care could be addressed through a revitalized National Mortality Followback Survey (NMFS). The NMFS was last conducted in 1993 by the Center for Disease Control and Prevention?s National Center for Health Statistics and proved to be a rich source of information that gave insight into aspects of living and dying in America. The survey provided policymakers with data concerning disparities among socioeconomic and racial groups, the association of disability and the use of formal health services, lifetime use of nursing home care, and the characteristics of persons dying of varying health causes. However, the last NMFS was conducted over 10 years ago. This old data cannot describe the experiences of people dying today or allow us to anticipate the needs for care in the future. Because the NMFS utilizes interviews with the next of kin (or someone close to the decedent) for a sample of people who died in the previous year, the followback survey is the most cost effective and efficient way to gather information on end-of-life care and quality of life.

Thank you for your consideration of our comments. Significant improvement in end-of-life care is a large and ambitious goal that requires a shift in social and cultural orientation toward illness, caregiving, dying, death, and grief. Last Acts Partnership believes that now is the time to prioritize research into and delivery of quality end-of-life care.