Supporting Public Health's Role in Addressing Unmet Needs at the End of Life

  • Date: Dec 14 2005
  • Policy Number: 20059

Key Words: Cancer, Chronic Disease, Patient Rights


Has supported a major role for federal, state, and local government health agencies in assuring health care is maximally responsive to the public's needs.1 A public need which has been inadequately addressed is the prevention of many of the adverse consequences of living with chronic terminal illness. Persons with cancer and other chronic terminal illnesses suffer both physically and emotionally across all stages the illness,2, 3 and much of this suffering could be prevented.4-6 Also, families and caregivers of persons with chronic terminal illnesses often experience increased morbidity or premature mortality resulting from the stress and strains associated with a loved one's terminal decline.7-10 Health care providers, public health professionals, and state and local health departments [together with their collaborators (e.g., aging networks, state units on aging, and others)] have a role in preventing this suffering,11 and thus, in assuring maximum responsiveness to public needs.1 The promotion of quality of life for dying individuals and their survivors is integral to the achievement of the Healthy People 2010 goal of increasing the quality and years of healthy life,12 and to promoting death with dignity.13

Therefore, recognizing that:

  1. Death is a universal experience affecting nearly 2.5 million persons annually in the United States;14 and three-quarters of all deaths are of persons 65 years of age and older, with the vast majority being from chronic disease, 15-17 and dying persons and their loved ones frequently suffer preventable negative consequences of terminal illness and decline;4 and that much of this suffering is amenable to population-based interventions.18, 19 
  2. Palliative care (including hospice care--a specialized form of palliative care) is under-utilized in the United States,5, 6, 20 even though its goal is to provide "effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s),"21 and even though hospice care has been shown to be associated with greater family satisfaction and fewer patient/family unmet needs3, 22, 23 and with improvements in pain assessment and management.24, 25 
  3. With the aging of the population, the proportion of deaths associated with chronic terminal illness will increase, resulting in increased needs and important opportunities to develop effective interventions for improving advance health care planning and end-of-life care.26, 27 
  4. The Association of State and Territorial Chronic Disease Program Directors (CDD) and the Centers for Disease Control and Prevention (CDC) facilitated a systematic process which considered input and ideas from nationally prominent stakeholders with expertise in end of life, public health, aging, and cancer and resulted in priority recommendations aimed at assisting State Health Departments in identifying the role of public health in addressing end-of-life issues, 19 recommendations congruent with and complementary to existing APHA policies and priorities. 1, 13, 28 

The APHA endorses and supports: 

  1.  An active public health role in advocating for and addressing end-of-life issues, including honoring of a patient's self-determination about end-of-life decisions. 
  2. Promotion of advance planning for end-of-life care through public and professional education by health care providers, public health professionals, government entities and/or community coalitions.29  
  3.  Promotion of the use of hospice and palliative care through education of its availability and benefits by health care providers, public health professionals and government entities. 
  4.  In relation to the above, APHA supports the intent of the CDC and CDD priority recommendations for state health department action, which are listed below and which many states are moving towards implementing.26, 30-32 
  1. Identify a chronic disease point person within the state health department to coordinate/liaison end-of-life activities with relevant issues (e.g., aging, cancer). 
  2. Collect, analyze and share data about end of life through state surveys such as the Behavioral Risk Factor Surveillance System (BRFSS). 
  3. Incorporate end-of-life care into state comprehensive cancer control plans. 
  4. Educate the public about the availability of hospice and palliative care. 
  5. Educate the public about the importance of advance directives and health care proxies. 
  6. Eliminate financial barriers to third party payment for early and comprehensive hospice and palliative care; including at least elimination of Medicare's requirement that such care may only be reimbursed when efforts to cure have been terminated. 


  1. American Public Health Association. Access to Care Fact Sheet. Washington, D.C.: American Public Health Association; 2004. 
  2. SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274(20):1591-8.
  3. Teno JM, Clarridge BR, Casey V et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004;291(1):88-93. 
  4. Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington, D.C.: National Academy Press; 1997.
  5. Institute of Medicine and National Research Council. Improving Palliative Care for Cancer. Washington, D.C.: National Academy Press; 2001. 
  6. Last Acts National Program. Means to a Better End: A Report on Dying in America Today. Washington, DC: Last Acts National Program Office; 2002. 
  7. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Ann Intern Med 2000;132(6):451-9. 
  8. Schulz R, Beach SR. Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA 1999;282(23):2215-9. 
  9. Schulz R, Beach SR, Lind B et al. Involvement in caregiving and adjustment to death of a spouse: Findings from the caregiver health effects study. JAMA 2001;285(24):3123-9. 
  10. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284(19):2476-82 
  11. Institute of Medicine. The Future of Public Health. Washington, D.C.: National Academy Press; 1988. 
  12. Centers for Disease Control and Prevention. Measuring Healthy Days: Population Assessment of Health-Related Quality of Life. Atlanta, Georgia: U.S. Department of Health and Human Services; 2000. 
  13. Death with Dignity, Policy No. 8123, American Public Health Association, (1981). 
  14. National Center for Health Statistics. Health, United States, 2004 with Chartbook on Trends in the Health of Americans. Hyattsville, Maryland: U.S. Department of Health and Human Services; 2004. 
  15. Connor SR. New initiatives transforming hospice care. Hosp J 1999;14(3-4):193-203. 
  16. Facts on Dying: Policy Relevant Data on Care at the End of Life. Brown University Center for Gerontology and Health Care Research 2004; Available at: URL: http://www.chcr.brown.edu/dying/factsondying.htm. Accessed November 15, 2004. 
  17. National Center for Health Statistics. Health, United States, 2003 with Chartbook on Trends in the Health of Americans. Hyattsville, Maryland: U.S. Department of Health and Human Services; 2003. 
  18. Rao JK, Anderson LA, Smith SM. End of life is a public health issue. Am J Prev Med 2002;23(3):215-20. 
  19. The Association of State and Territorial Chronic Disease Directors. The Role of State Health Departments in Addressing End-of-Life Issues. McLean, VA: Chronic Disease Directors Program; 2004. Report to the Centers for Disease Control and Prevention. 
  20. Christakis NA, Escarce JJ. Survival of Medicare patients after enrollment in hospice programs. N Engl J Med 1996;335(3):172-8. 
  21. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. Brooklyn, NY: National Consensus Project for Quality Palliative Care; 2004. 
  22. Kane RL, Wales J, Bernstein L, Leibowitz A, Kaplan S. A randomised controlled trial of hospice care. Lancet 1984;1(8382):890-4. 
  23. Mor V. Cancer patients' quality of life over the disease course: Lessons from the real world. J Chronic Dis 1987;40(6):535-44. 
  24. Miller SC, Mor V, Wu N, Gozalo P, Lapane K. Does receipt of hospice care in nursing homes improve the management of pain at the end of life? J Am Geriatr Soc 2002;50(3):507-15. 
  25. Miller SC, Mor V, Teno J. Hospice enrollment and pain assessment and management in nursing homes. J Pain Symptom Manage 2003;26(3):791-9. 
  26. Advance Care Planning-Part III: New Directions in Policy and Practice. State Initiatives in End-of-Life Care 2005;(23). 
  27.  Center for Practical Bioethics: Guidance at the Crossroads of Decision. Center for Practical Bioethics 2005; Available at: URL: http://www.practicalbioethics.org/. Accessed June 17, 2005. 
  28.  Hospice Care Standards, Education and Reimbursement, Policy No. 8101, American Public Health Association, (1981). 
  29. Tolle SW, Tilden VP. Changing end-of-life planning: The Oregon experience. J Palliat Med 2002;5(2):311-7. 
  30. About the Massachusetts Commission on End of Life Care. Massachusetts Commission on End of Life Care 2005; Available at: http://www.endoflifecommission.org/end_pages/about.htm. Accessed June 17, 2005. 
  31. Tilly J, Wiener J. Medicaid and End-of-Life Care. Last Acts National Program Office, Washington, DC 2001; Available at: http://www.urban.org/UploadedPDF/410409_Medicaid.pdf. 
  32. New Jersey Comprehensive Cancer Control Plan Fact Sheet. Office of Cancer Control and Prevention 2003; Available at: http://www.state.nj.us/health/ccp/njcccpfactsheet.pdf. Accessed June 17, 2005.

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