Advance Care Planning and Public Engagement. Notes


  1. Pew Research Center (2006). More Americans Discussing -- and Planning -- End-of-Life Treatment. Available at

  2. Postman N (1992). Technopoly: The Surrender of Culture to Technology. New York, NY: Vintage Books. Postman argues three interrelated reasons why Americans are enamored with medical technology: (1) The American entrepreneurial character embraces technology (i.e., innovation and invention are basic goods); (2) Technological innovation equates to progress, resulting in the development and proliferation of medical technologies; (3) American culture has gradually adopted the belief that technology is the foundation of the medical profession.

  3. Callahan D (1987). Setting Limits. New York, NY: Simon and Schuster. p143.

  4. Knaus W (1996). The SUPPORT Project: To improve Care at the End of Life. Fanlight Productions, video, ISBN 1-57295-177-X, Catalog # DVD-177.

  5. Casarett D, Kapo J, Caplan A (December 15, 2005). "Appropriate use of artificial nutrition and hydration -- Fundamental principles and recommendations." New England Journal of Medicine, 353(24):2607-2612.

  6. Christakis NA (1999). Death Foretold: Prophecy and Prognosis in Medical Care. University of Chicago Press.

  7. Fleishman M. Economic Grand Rounds: Issues in Psychopharmacosocioeconomics.

  8. Schackman BR, et al. (November 2006). "The lifetime cost of current human immunodeficiency virus care in the United States." Medical Care, 44(11):990-997.

  9. Centers for Disease Control (2007). The State of Aging and Health in American 2007. Available at

  10. Perkins HS (July 3, 2007). "Controlling death: The false promise of advance directives." Annals of Internal Medicine, 147:55-57. See also: "The 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, 274:1591-8 (1995). Galambos CM (1998). "Preserving end-of-life autonomy: The Patient Self-Determination Act and the Uniform Health Care Decisions Act." Health Soc Work, 23:275-81. Volicer L, Cantor MD, Derse AR, Edwards DM, Prudhomme AM, Gregory DC, et al. (2002). "National Ethics Committee of the Veterans Health Administration. Advance care planning by proxy for residents of long-term care facilities who lack decision-making capacity." J Am Geriatr Soc, 50:761-7.

  11. Sabatino CP (October 2007). Advance Directives and Advance Care Planning: Legal and Policy Issues. Commissioned Paper. Available at

  12. Cruzan v. Director, Missouri Department of Health, 497 U.S. 261, 110 S.Ct. 2841 (1990). aff’g Cruzan v. Harmon, 760 S.W.2d 408 (Mo. 1988).

  13. Participant discussion: Take Stock Summit. Oak Brook: IL. (June 29, 2007).

  14. Lax E (2004). The Mold in Dr. Florey’s Coat: The Story of the Penicillin Miracle. New York, NY: A John Macrae Book/Henry Holt & Co.

  15. Callahan D (October 2003). What Price Better Health? Hazards of the Research Imperative. Berkely, CA: University of California Press.

  16. Chernoff R (August 2006). "An overview of tube feeding: From ancient times to the future." Nutrition in Clinical Practice, 21:408-410.

  17. "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain-death." Journal of the American Medical Association, 205:337-340 (1968).

  18. Rothman DJ, et al., eds. (1995). Medicine and Western Civilization. Rutgers University Press. p421.

  19. Jennett B, Plum F (1972). "Persistent vegetative state after brain damage. A syndrome in search of a name." Lancet, 1:734-7.

  20. Annas GJ (1975). The Rights of Hospital Patients. New York, NY: Avon.

  21. Annas GJ (March 5, 1998). "A National Bill of Patients’ Rights." New England Journal of Medicine, 338(10):695-700 (author’s emphasis).

  22. Feifel H, ed. (1959). The Meaning of Death. New York, NY: McGraw-Hill.

  23. Pius XII (November 24, 1957). "The prolongation of life: Allocution to the International Congress of Anesthesiologists." The Pope Speaks 4.4, (1958):395-398.

  24. Hecht MB, Shiel WC Jr. Advance Medical Directives. Accessed on July 26, 2007 at

  25. Duane Quinlan J (2005). My Joy, My Sorrow: Karen Ann’s Mother Remembers. St. Anthony Messenger Press.

  26. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (July 1981). Defining Death: A Report of the Medical, Legal and Ethical Issues in the Determinations of Death. Washington, DC: US Government Printing Office.

  27. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (March 1983). Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC: US Government Printing Office.

  28. Capron AM (2002). The Legal Column. Governmental Bioethics Commissions: The Nature of the Beast. (Capron served as executive director of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research during its entire existence, 1979-1983.) Accessed on July 26, 2007 at

  29. Capron, ibid.

  30. Capron, ibid.

  31. Pew Research Center, op. cit.

  32. Federal Patient Self Determination Act 1990. 42 U.S.C. 1395 cc (a).

  33. American Bar Association, Division for Public Education. Accessed on July 27, 2007 at

  34. Hampson LA, Emanuel, EJ (2005). "Perspective: The prognosis for changes in end-of-life care after the Schiavo Case." Health Affairs, 24(4):972-975. (Author’s note: Discrepancy in the percent of Americans listed by the authors of this 2005 article versus the numbers cited in the current report is due to difference data sources and their timing.)

  35. Commonwealth Fund survey data.

  36. Annals of Internal Medicine Article (2007).

  37. Hampson and Emanuel, ibid.

  38. Linda Emanuel personal communication (July 19, 2007).

  39. Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V (2004). "Family perspectives on end-of-life care at the last place of care." JAMA, 291:88-93.

  40. Jennings B, et al., eds. (2005). "Improving end-of-life care: Why has it been so difficult?" Special Report. The Hastings Center. See also: Pearlman RA, Starks H, Cain KC, Cole WG (2005). "Improvements in advance care planning in the Veterans Affairs System: Results of a multifaceted intervention." Arch Intern Med, 165:667-74.

  41. Shalowitz DL, et al. (March 13, 2006). "The accuracy of surrogate decision-makers: A systematic review." Archives of Internal Medicine.

  42. Sabatino CP (October 2007). Advance Directives and Advance Care Planning: Legal and Policy Issues. Commissioned Paper. Available at

  43. Center for Practical Biothics (unpublished). An End-of-Life Coalition and Leadership Survey, Ten Years of Work, 2006 [Preliminary Findings]. Reported at the Take Stock Summit, June 29, 2007.

  44. Miller S, et al. (July 2007). Palliative Care/Hospice for Persons with Terminal and/or Chronic Progressive Illness: The Role of State and Federal Policy in Shaping Access and Quality for Persons Receiving Long-Term Care. A Report Funded by the JEHT Foundation, Center for Gerontology and Health Care Research, Department of Community Health, The Warren Albert Medical School of Brown University.

  45. That is not to say that successful community based efforts such as Compassion Sabbath® or other individual faith based activities are without merit. But based on a thorough review of the literature there are no known broadly sponsored programs by major institutional religions in the United States within the past 25 years.

  46. Flory J, et al. (2004). "Place of death: US trends since 1980." Health Affairs, 23(3):194-200.

  47. Flory et al., ibid.

  48. Sager MA, et al. (February 16, 1989). "Changes in the location of death after passage of Medicare's prospective payment system. A national study." N Engl J Med, 320(7):433-9.

  49. Degenholtz HB, et al. (2004). "Brief communication: The relationship between having a living will and dying in place." Annals of Internal Medicine, 141:113-117.

  50. Miller et al., op cit.

  51. Miller et al., op cit.

  52. Miller et al., op. cit.

  53. The Care of Patients with Severe Chronic Illness: A Report on the Medicare Program by the Dartmouth Atlas Project. Accessed on July 27, 2007 at

  54. Dartmouth Atlas, ibid.

  55. Dartmouth Atlas, ibid.

  56. Multiple studies report this finding beginning with SUPPORT.

  57. Pan CX, Morrison RS, Meier DE, Natale DK, Goldhirsch SL, Kralovec P, Cassel CK (2001). Journal of Palliative Medicine. 4(3):315-324.

  58. Carney J (July 22, 2005). Testimony: National Commission on Quality Long Term Care, Public Hearing. Available at

  59. Casarett et al, op. cit. See also: Gillick MR (2000). "Rethinking the role of tube feeding in patients with advanced dementia." N Engl J Med, 342:206-10. Shamberger RC, Brennan MF, Goodgame JT Jr, et al. (1984). "A prospective, randomized study of adjuvant parenteral nutrition in the treatment of sarcomas: Results of metabolic and survival studies." Surgery, 96:1-13. Popp MB, Fisher RI, Wesley R, Aamodt R, Brennan MF (1981). "A prospective randomized study of adjuvant parenteral nutrition in the treatment of advanced diffuse lymphoma: Influence on survival."Surgery, 90:195-203. Daly JM, Weintraub FN, Shou J, Rosato EF, Lucia M (1995). "Enteral nutrition during multimodality therapy in upper gastrointestinal cancer patients." Ann Surg, 221:327-38. Finucane TE, Christmas C, Travis K (1999). "Tube feeding in patients with advanced dementia: A review of the evidence." JAMA, 282:1365-70. Mitchell SL, Kiely DK, Lipsitz LA (1998). "Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems?" J Gerontol A Biol Sci Med Sci, 53:M207-M213. Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS (2001). "High short-term mortality in hospitalized patients with advanced dementia: Lack of benefit of tube feeding." Arch Intern Med, 161:594-9. McCann RM, Hall WJ, Groth-Juncker A (1994). "Comfort care for terminally ill patients: The appropriate use of nutrition and hydration." JAMA, 272:1263-6.

  60. AARP (May 2000). Fixing to Stay: A National Survey of Housing and Home Modification Issues.

  61. Braynel C, Gao L, Dewey M, Matthews FE. Investigators Medical Research Council Cognitive Function and Ageing Study, Dementia before Death in Ageing Societies -- The Promise of Prevention and the Reality.

  62. Harry B. Developing Cultural Self-Awareness. In CASAnet Library: Cultural Competency. Accessed on July 29, 2007 at

  63. Balch B. National Right to Life Committee comments made at the Take Stock Summit, June 29, 2007.

  64. Balch, ibid.

  65. CPB Coalition study results, op. cit.

  66. Available at

  67. Available at

  68. Available at

  69. Available at

  70. See for additional information and reports on the roles of Attorney General including the 2004 report in promoting best practice and the 2003 report on quality.

  71. Centers for Disease Control, op. cit.

  72. Perkins et al., op. cit.

  73. Pew, op. cit.

  74. Modern Healthcare Magazine, Aside and Insides (April 16, 2007).

  75. Available at

  76. Sabatino CP (October 2007). Advance Directives and Advance Care Planning: Legal and Policy Issues. Commissioned Paper. Available at: See also:

  77. Available at

  78. National Institute for Health. NIH State-of-the-Science Conference Statement on Improving End-of-Life Care. 21(3), December 6-8, 2004. Available at

  79. Perkins, op. cit.

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