Institutional Efforts to Promote Advance Care Planning in Nursing Homes: Challenges and Opportunities

Council on Ethical and Judicial Affairs, American Medical Association, Current Opinions (Chicago: American Medical Association, 1989); Orentlicher D. , “Advance Medical Directives,” JAMA, 263 (1990): 2365–67; Davidson K. , “Physician Attitudes on Advance Directives,” JAMA, 262 (1989): 2415–19; and Emanuel E. , “Advance Care Planning as a Process: Structuring the Discussions in Practice,” Journal of the American Geriatrics Society, 43 (1995): 440–46.

Senate Special Committee on Aging, U.S. Congress, A Matter of Choice: Planning Ahead for Health Care Decisions (Washington, D.C.: U.S. Government Printing Office, 1987); Office of Technology Assessment, Life-Sustaining Technology and the Elderly (Washington, D.C.: U.S. Government Printing Office, OTA-BA-306, 1988); and Committee on Finance, U.S. Congress, Hearing on End of Life Issues and Implementation of Advance Directives Under Health Care Reform (Washington, D.C.: U.S. Government Printing Office, 1994).

Emanuel L. , “Advance Directives for Medical Care: A Case for Greater Use,” N. Engl. J. Med., 324 (1991): 889–95; Society for the Right to Die, The Physician and the Hopelessly Ill Patient and Supplement (New York: Society for the Right to Die, 1988); and General Accounting Office, Patient Self-Determination Act (Washington, D.C.: U.S. Government Printing Office, GAO/HEHS-95-135, Aug. 1995).

See General Accounting Office, supra note 3.

Patient Self-Determination Act, 42 U.S.C. §§ 1395cc, 1396a (1994). Regulations were amended in 1995 by the Health Care Financing Administration (HCFA). See Advance Directives: Final Rule, 60 Fed. Reg. 33262-92 (1995).

In addition, PSDA placed several requirements on government agencies. Federal law required the secretary of Department of Health and Human Services (DHHS) to develop a national campaign with informational materials to inform the public of the option to complete advance directives. To fulfill this obligation, HCFA released a technical assistance information packet in September 1991 for health care providers as well as a press package that included a list of organizations and publications that had information on advance directives. DHHS also required each state to develop a written description of the state law concerning advance directives and has amended the Medicare Handbook to reflect the federal law's provisions. These actions are described in the Report to the Ranking Minority Member, Subcommittee on Health, Committee on Ways and Means, House of Representative. See General Accounting Office, supra note 3.

See Advance Directives: Final Rule, 60 Fed. Reg. 33262-92 (1995).

A variety of interest and advocacy groups gave congressional testimony concerning the bill that later became PSDA. The groups included the Catholic Health Association, the American Association of Critical-Care Nurses, the Central Conference of American Rabbis, the Elder Women's League, the Society of Critical Care Medicine, the American Hospital Association, the American Bar Association, and the American Medical Association. None of these groups opposed the intent of the law. Each supported the law as promoting human dignity and personal choice. Substantial opposition did arise to certain implementation issues. The most vigorous objection was voiced by HCFA's Gail Wilensky, who argued that improved public awareness about advance directives could be accomplished without linking it to an “intrusive, cumbersome Federal requirement.” See Senate Subcomm. on Medicare and Long Term Care, Living Wills. Hearing before the Senate Subcomm. on Medicare and. Long Term Care, 101st Cong. 11 (1990) (statement of Gail Wilensky, Ph.D., Administrator, HCFA).

Pinch W. , “Implementation of the Patient Self-Determination Act: A Survey of Nebraska Hospitals,” Research in Nursing and Health, 18 (1995): 59–66; and Silverman H. , “Implementation of the Patient Self-Determination Act in a Hospital Setting,” Archives of Internal Medicine, 155 (1995): 502–10.

La Puma J. Orentlicher D. Moss R. , “Advance Directives on Admission: Clinical Implications and Analysis of the Patient Self-Determination Act of 1990,” JAMA, 266 (1991): 402–05.

Morrison R. Morrison E. Glickman D. , “Physician Reluctance to Discuss Advance Directives,” Archives of Internal Medicine, 154 (1994): 2311–18.

Teno J. , “Do Formal Advance Directives Affect Resuscitation Decisions and the Use of Resources for Seriously Ill Patients,” Journal of Clinical Ethics, 5 (1994): 23–30; Office of the Inspector General, Patient Advance Directives: Facility and Patient Responses (Washington, D.C.: U.S. Department of Health and Human Services, OEI 06-91-01131, Aug. 1993); Janofsky J. Rovner B. , “Prevalence of Advance Directives and Guardianship in Nursing Home Patients,” Journal of Geriatric Psychiatry and Neurology, 6 (1993): 214–26; Elpern E. Yellen S. Burton L. , “A Preliminary Investigation of Opinions and Behaviors Regarding Advance Directives for Medical Care,” American Journal of Critical Care, 2 (1993): 161–67; Daly M. Sobal J. , “Advance Directives Among Patients in a House Call Program,” Journal of the American Board of Family Practice, 5 (1992): 11–15; Emanuel , supra note 3; and Cohen-Mansfield J. Droge J. Billig N. , “The Utilization of Durable Power of Attorney for Health Care Among Hospitalized Elderly Patients,” Journal of American Geriatrics Society, 39 (1991): 1174–78.

Hing E. , “Use of Nursing Homes by the Elderly: Preliminary Data from the National Nursing Home Survey,” Vital Health Statistics, 135 (1987): 1–12; and Van Nostrand J. Miller B. , “Selected Issues in Long Term Care: Profile of Cognitive Disability,” in Health Data in Older Americans (Hyattsville: National Center for Health Statistics, PHS 98-141, 1992): 21–30.

Lubitz J. Prihoda R. , “The Use and Costs of Medicare Services in the Last Two Years of Life,” Health Care Financing Review, 5 (1984): 117–31.

Hayley D. , “Ethical and Legal Issues in Nursing Home Care,” Archives of Internal Medicine, 156 (1996): 249–56.

Johnson S.H. , “The PSDA in Nursing Homes,” Hastings Center Report, 21, Supp. (1991): S3–S4.

See Emanuel , supra note 3; Pinch , supra note 9; and Silverman , supra note 9.

Terry M. Zweig S. , “Prevalence of Advance Directives and Do-Not-Resuscitate Orders in Community Nursing Facilities,” Archives of Family Medicine, 3 (1992): 141–45; Bradley E. , “Assessing Capacity to Participate in Discussions of Advance Directives in Nursing Homes: Findings from a Study of the Patient Self-Determination Act,” Journal of American Geriatrics Society, 45 (1997): 79–83; Mezey M. , “Implementation of the Patient Self-Determination Act (PSDA) in Nursing Homes in New York City,” Journal of American Geriatrics Society, 45 (1997): 43–49; and Walker L. , “Problems in Implementing the Patient Self-Determination Act in Nursing Homes,” Journal of Mental Health and Aging, forthcoming.

See General Accounting Office, supra note 3.

In Connecticut, as in most states, such institutional advance care planning forms are not considered formal advance directives. Analysis of Connecticut state law in this area revealed no legislation that requires or encourages the use of what we call institutional advance care planning forms by nursing homes.

Recent long-term care national statistics suggest that more than 60 percent of nursing home residents have some degree of cognitive impairment. See Nostrand Van Miller , supra note 13. However, because of the difficulty in measuring decisional capacity, this number may not be predictive of residents who are not capacitated to participate in advance care planning at the time of admission. In the six homes we studied, 58 percent of the residents were judged by the nursing assessment to be either partly (37.7 percent) or totally confused (20.3 percent) at admission.

Previous studies have shown that approximately 65 percent of nursing home residents do not have an advance directive within the first year of their admission to a nursing home. See Terry Zweig , supra note 18; and Bradley , supra note 18.

Empirical literature comparing nonprofit and for-profit nursing homes generally shows nonprofit homes to have higher quality and higher costs than for-profit homes. For a literature review, see Schlesinger M. Marmor T. Smithey R. , “Nonprofit and For-Profit Medical Care: Shifting Roles and Implications for Health Policy,” Journal of Health Politics, Policy and Law, 12 (1987): 427–57.

Reasons for nonparticipation included concurrent involvement in the state licensing process, recent layoffs of medical records staff, and expressed fear of resulting liability despite assurances of confidentiality.

Centers for Disease Control and Prevention, Vital and Health Statistics: Trends in the Health of Older Americans: United States, 1994 (Hyattsville: U.S. Department of Health and Human Services, Ser. 3, No. 30, Apr. 1995).

Department of Public Health, Hospital and Medical Care Division, State of Connecticut, Connecticut Nursing Home Directory (1991).

Katz S. , “Studies of Illness in the Aged, The Index of ADL: A Standardized Measure of Biological and Psychological Function,” JAMA, 185 (1963): 914–19. Activities of Daily Living (ADL) used for this study were bathing, dressing, toileting, transferring, continence, and feeding. Independence was measured as needing no assistance in any of these areas. This approach to measuring physical functioning is common in health services research.

Using data from this study, Bradley argue this may be evidence of inappropriate exclusion of oriented residents from advance care planning efforts. See Bradley , supra note 18.

Given that most of the advance directives were completed prior to admission, one could assume that residents complete advance directives when they are decisionally capable, even if they are decisionally incapacitated at the time of admission to a nursing home.

Teno J. Lynn J. , “Putting Advance Care Planning into Action,” Journal of Clinical Ethics, 7 (1996): 205–13.

Emanuel L. , “Advance Directives: Can Patients' Stated Treatment Choices Be Used to Infer Unstated Choices?,” Medical Care, 32 (1994): 95–105; and Brett A. , “Limitations of listing Specific Medical Interventions in Advance Directives,” JAMA, 166 (1991): 825–28.

Procedural requirements referred to here include the requirement to provide written information about advance directives at the time of admission and to document whether residents have advance directives.

Hoffmann D.E. Zimmerman S.I. Tompkins C. , “The Dangers of Directives or False Security Forms,” Journal of Law, Medicine & Ethics, 24 (1996): 5–17.