Governance









White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care

Table of Contents
  1. Introduction
  2. Competence
  3. Decision-Making Capacity
  4. A framework for assessing decision-making capacity
  5. Surrogate Decision-Making
  6. Advance Directives
  7. Guardianship
  8. An Ethical Framework for Surrogate Decision-Making
  9. Decision-making by mentally incapacitated long-term care facility residents
  10. The hierarchy of medical decision-making for incapacitated nursing home residents
  11. Guidance for guardians and other surrogates about medical decision-making
  12. What surrogates and health care provider should expect from each other
  13. Some Important Clinical Issues
  14. Summary and Conclusions
  15. References

References

  1. Applebaum P, Grisso T. Assessing patients' capacities to consent to treatment, N Engl J Med 1988;319:1635-1638.
  2. Applebaum P, Grisso T. Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York:Oxford University Press, 1998.
  3. Folstein MF, Folstein SE, McHugh PR. Mini-mental state: a practical method for grading the cognitive state of patients for the clinician, J Psych Research 1975;12:189-98.
  4. Janofsky JS, McCarthy RJ, Folstein MF. The Hopkins Competency Assessment Test: a brief method for evaluating patients' capacity to give informed consent, Hosp Comm Psychiatr 1992;43:132-136.
  5. Kapp MB. Ethical aspects of guardianship, Clin Geriatr Med 1994;10:501-512.
  6. Hayley DC, Cassel, Ck, Snyder L, Rudberg MA.. Ethical and legal issues in nursing home care, Arch Int Med 1996; 156: 249-256.
  7. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: "You got to go where he lives", JAMA 2001; 286(23):2993-3001.
  8. Uhlmann RF, Pearlman RA, Cain KC. Physicians' and spouses' predictions of elderly patients' resuscitation preferences, J Gerontol 1988;43(5):M115-M121.
  9. Hamel MB, Lynn J, Teno JM et al. Age-related differences in care preferences, treatment decisions, and clinical outcomes of seriously ill hospitalized adults: Lessons from SUPPORT, J Am Geriatr Soc 2000:48:S176-S182.
  10. Seckler AB, Meier DE, Mulvihill M, Paris BEC. Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991;115:92-98.
  11. Covinsky KE, Fuller JD, Yaffe K, et al. Communication and decision-making in seriously ill patients: Findings of the SUPPORT project, J Am Geriatr Soc 2000; 48:S187-S193.
  12. Marbella AM, Desbiens NA, Mueller-Rizner N, Layde PM. Surrogates' agreement with patients' resuscitation preferences: Effect of age, relationship, and SUPPORT intervention, J Crit Care 1998:13:140-145.
  13. Layde PM, Beam CA, Connors AF, et al. Surrogates' predictions of seriously ill patients' resuscitation preferences, Arch Fam Med 1995;4:518-523.
  14. Uhlmann RF, Pearlman RA. Perceived quality of life and preferences for life-sustaining treatments in older adults, Arch Int Med 1991;151:495-497.
  15. Sulmasy DP, Terry PB, Weisman CS, et al. The accuracy of substituted judgments in patients with terminal diagnoses, Ann Int Med 1998; 128:621-629.
  16. Kane RA. Ethics and long-term care: everyday considerations, Clin Geriatr Med 1994; 10(3):489-499.
  17. Miller TE, Coleman CH, Cugliari AM. Treatment decisions for patients without surrogates: rethinking policies for a vulnerable population, J Am Geriatr Soc 1997;45:369-374.
  18. Gillick M, Berkman S, Cullen L. A patient-centered approach to advance medical planning in the nursing home, J Am Geriatr Soc 1999;47:227-230.
  19. Lee MA, Brummel-Smith K, Meyer J, Drew N, London MR. Physician orders for life-sustaining treatment (POLST): Outcomes in a PACE program, J Am Geriatr Soc 2000; 48:1219-1225.
  20. Applebaum GE, King JE, Finucane TE. The outcome of ACPR initiated in nursing homes, J Am Geriatr Soc 1990:38:197-200.
  21. Finucane TE, Harper GM. Attempting resuscitation in nursing homes: policy considerations, J Am Geriatr Soc 1999;47:1261-1264.
  22. Malloy JR, Wigton RS, Meeske J, Tape TG. The influence of treatment descriptions on advance medical directive decisions, J Am Geriatr Soc 1992;40:1255-1260.
  23. Schonwetter RS, Walker RM, Kramer DR, Robinson BE. Resuscitation decision making in the elderly: The value of outcome data, J Gen Int Med 1993;8:295-300.
  24. Murphy DJ, Burrows D, Santilli S, Kemp AW, Tenner S, Kreling B, Teno J. The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation, N Engl J Med 1994;330:545-549.
  25. Kane RS, Burns EA. Cardiopulmonary resuscitation policies in long-term care facilities, J Am Geriatr Soc 1997;45:154-157.
  26. Department of Health and Human Services. Health Care Financing Administration, Division of Health Standards and Quality Regional Program Letter No. 97-04, Subject: Clarification of Advance Directive Requirements, April, 1997.
  27. Finucane, TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: A review of the evidence, JAMA 1999;282:1365-1370.
  28. Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia, N Engl J Med 2000; 342:206-210
  29. Mitchell Sl, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment, Arch Int Med 1997;157:327-332.
  30. Mitchell Sl, Kiely DK, Lipsitz LA. Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems? J Gerontol 1998;53(3):M207-M213.
  31. Gillick MR, Serrell NA, Gillick LS. Adverse consequences of hospitalization in the elderly, Soc Sci Med 1982;16(10):1033-1038.
  32. Hirsch CH, Sommers L, Olsen A, Mullen L, Winograd CH. The natural history of functional morbidity in hospitalized older patients, J Am Geriatr Soc 1990;38(12):1296-1303.
  33. Inouye SK, Wagner DR, Acampora D, Horwitz RI, Cooney LM, Hurst LD et al. A predictive index for functional decline in hospitalized elderly medical patients, J Gen Int Med 1993;8(12):645-652.
  34. Saliba D, Kington R, Buchanan J, Bell R, Wang M, Lee M et al. Appropriateness of the decision to transfer nursing facility residents to the hospital, J Am Geriatr Soc 2000; 48(2)154-163.
  35. Fried TR, Gillick MR, Lipsitz LA. Whether to transfer? Factors associated with hospitalization and outcome of elderly long-term care patients with pneumonia. J Gen Int Med 1995;10(5):246-250.
  36. Mylotte J.P., Naughton B., Saludades C., Maszarovics Z.Validation and application of the Pneumonia prognosis index to nursing home residents with pneumonia, J Am Geriatr Soc 1998;46(12),1538-1544.
  37. Thompson RS, Hall NK, Szpiech M, Reisenberg LA. Treatments and outcomes of nursing-home-acquired pneumonia, J Am Board Fam Pract 1997; 10(2):82-87.
  38. Peterson PK, Stein D, Guay DR, Logan G, Obaid S, Gruninger R et al. Prospective study of lower respiratory tract infections in an extended-care nursing home program: potential role of oral ciprofloxacin, Am J Med 1998;85(2):164-171.
  39. Volicer L, Brandeis G, Hurley AC. Infections in advanced dementia. In: Volicer L, Hurley A, eds. Hospice Care for Patient with Advanced Progressive Dementia. New York: Springer Publishing Company,1998.
  40. Fabiszewski KJ, Volicer B, Volicer L. Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients, JAMA 1990;263:3168-3172.
  41. Hurley AC, Volicer BJ, Hanrahan P, Houde S, Volicer L. Assessment of discomfort in advanced Alzheimer patients, Res Nurs Health 1992; 15:369-377.
  42. Hurley AC, Volicer B, Mahoney MA, Volicer L. Palliative fever management in Alzheimer patients: quality plus fiscal responsibility, Adv Nurs Sci 1993;16:21-32.

Volicer L, Cantor AR, Derse et al. J Amer Geriatr Soc 2002;50:761-767.

Fried TR, Gillick MR, Lipsitz LA. J Amer Geriatr Soc 1997;45:302-306.

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