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Advocacy for The Mentally Impaired Elderly: A Case Study Analysis

Published online by Cambridge University Press:  24 February 2021

Jeanie Kayser-Jones
Affiliation:
University of Colorado; University of California at San Francisco; University of California at Berkeley. Department of Physiological Nursing, School of Nursing, and Medical Anthropology Program, Department of Epidemiology and International Health, School of Medicine, University of California, San Francisco
Marshall B. Kapp
Affiliation:
Johns Hopkins University; George Washington University; Harvard University. Department of Medicine in Society, Wright State University School of Medicine; University of Dayton School of Law, Dayton, Ohio

Abstract

The authors present a case study to illustrate how a mentally impaired but socially intact nursing home resident, who had no one to act as an advocate for her, was denied appropriate treatment for an acute illness which ultimately resulted in her death. The case raises important questions about advocacy for the mentally-impaired, acutely-ill institutionalized patient. This Article explores the role of the advocate, how advocates are selected, what qualities and talents they should possess, and what responsibilities should be assigned to them. The authors suggest that nursing home residents should be encouraged to engage in self-advocacy to the greatest extent possible. The competent elderly should be urged to name their preferred advocates. Individuals who serve in advocacy roles should be advised to seek information regarding the patient's wishes from those who know the patient well. Furthermore, there is a need for quality education and training of those who serve in advocacy roles on behalf of nursing home residents, and state laws need to specify the responsibilities of persons who serve as advocates.

Type
Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University1989

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Footnotes

*

This research was funded by the National Institute on Aging, Research Grant No. AG05073, J.S. Kayser-Jones, Principal Investigator.

References

1 D. CRANE, THE SANCTITY OF SOCIAL LIFE: PHYSICIANS TREATMENT OF CRITICALLY I II PATIENTS (1975).

2 HASTINGS CENTER REP., GUIDELINES ON THE TERMINATION OF LIFE-SUSTAINING TREATMENT AND THE CARE OF THE DYING (1987)[hereinafter GUIDELINES]; U.S. CONG., OFFICE OF TECH. ASSESSMENT, LIFE-SUSTAINING TECHNOLOGIES AND THE ELDERLY (July 1987)[hereinafter LIFE-SUSTAINING TECHNOLOGIES]; PRESIDENT's COMM'N FOR THE STUDY OF ETHICAL PROB. IN MED. & BIOMED. BEHAVIORAL RES., DECIDING T O FOREGO LIFE-SUSTAINING TREATMENT (1983) [hereinafter PRESIDENT's COMM'N].

3 Rice & Feldman, Living Longer in the United States: Demographic Changes and Health Needs of the Elderly, 61 MILBANK MEM. FUND Q. HEALTH & SOC'Y, 362 (1983).

4 NATIONAL INST, ON AGING, OUR FUTURE SELVES: A RESEARCH PLAN TOWARD UNDERSTANDING AGING (1978).

5 SeeJarvik, Diagnosis of Dementia in the Elderly: A 1980 Perspective, 1 ANNUAL REV. GERONTOLOGY & GERIATRICS 80 (1980).

6 C.JOHNSON & L. GRANT, THE NURSING HOME IN AMERICAN SOCIETY (1985).

7 See GUIDELINES, supra note 2, at 78-84; LIFE-SUSTAINING TECHNOLOGIES, supra note 2; PRESIDENT's COMMISSION, supra note 2, at 136-53, 193, 309-87, 389-437.

8 For a full discussion of advance directives, see GUIDELINES, supra note 2, at 78-84

9 For the sake of brevity, all temperatures referred to in this paper will be stated in degrees Fahrenheit. Due to the patient's condition, all temperatures were taken rectally.

10 Research investigators who are also health care professionals may experience role conflict and ethical dilemmas for several reasons. First, the role of the investigator is complicated because she brings to the research setting some degree of professional expertise and a set of values and expectations of herself and of other health care providers. The investigator is aware of the clinical problem, can evaluate the care, and has some knowledge of the consequence of taking or not taking action in a given situation. Second, because the investigator is identified as a health care professional as well as a research scientist, other health care workers, patients, and their families may have certain expectations of her. Third, health care professionals are bound by a professional code of ethics. These codes, although unique to each profession, state the fiduciary principle that the professional must act to safeguard the patient at all times.

11 See generally Uhlmann, Clark, Pearlman, Downs, Addison & Haining, Medical Management Decisions in Nursing Home Patients: Principles and Policy Recommendations, 106 ANNALS INTERNAL MED. 879 (1987); Rango, , The Nursing Home Resident with Dementia: Clinical Care, Ethics, and Policy Implications, 102 ANNALS INTERNAL MED. 835 (1985);Google Scholar PRESIDENT's COMM'N, supra note 2, at 108-11.

12 See, e.g., Alessandroni, , Who Decides for Patients Who Can't? 8 GENERATIONS 27 (1984)Google Scholar

13 Cohen, Nursing Homes and the Least-Restrictive Environment Doctrine, in LEGAL AND ETHICAL ASPECTS OF HEALTH CARE FOR THE ELDERLY 173, 177-78 (M. Kapp, H. Pies & A. Doudera eds. 1986).

14 See, e.g., Clark, Individual Autonomy, Cooperative Empowerment, and Planning for Long-Term Care, Decision Making, 1 J . AGING STUDIES 65 (1987); Clark, Autonomy, Personal Empowerment, and Quality of Life in Long-Term Care, J. APPLIED GERONTOLOGY (In Press).

15 Hoyt & Davies, Meeting the Need for Clear Guidelines: Protecting Vulnerable Adults from Improper Limitation of Medical Treatment in Institutions, in 4 LAW & INEQUALITY 355 (1986); Jost, The Problem of Consent for Placement Care and Treatment of the Incompetent Nursing Home Resident, 26 ST. LOUIS U.LJ. 63 (1981).

16 Opperman, , Michigan's Bill of Rights for Nursing Home Residents, 27 WAYNE L. REV. 1203 (1981).Google Scholar

17 42 U.S.C. § 3030d (a)(10) (1987). For a general description of the nursing home ombudsman program, see A. MONK, L. KAYE & H. LITWIN, RESOLVING GRIEVANCES IN THE NURSING HOME: A STUDY OF THE OMBUDSMAN PROGRAM (1984). Cf. Civil Rights of Institutionalized Persons Act (CRIPA), 42 U.S.C. § 1997 (1982).

18 42 U.S.C. § 3030d (a)(6) (1987).

19 See generally Nathanson, , Legal Services for the Elderly, in ENCYCLOPEDIA OF AGING 381 (G. Maddox ed. 1987).Google Scholar

20 For a discussion regarding advocacy efforts targeted at the mentally disabled, see generally S. HERR, RIGHTS AND ADVOCACY FOR RETARDED PEOPLE (1983); Luckasson & Ellis, Representing Institutionalized Mentally Retarded Persons, 7 MENTAL DISABILITY L. REP. 49 (1983); Mickenberg, , The Silent Clients: Legal and Ethical Considerations in Representing Severely and Profoundly Retarded Individuals, 31 STAN. L. REV. 625 (1979);Google Scholar Wilson, Beyer & Yudowitz, Advocacy for the Mentally Disabled, in NATIONAL INST, OF MENTAL HEALTH, MENTAL HEALTH ADVOCACY: AN EMERGING FORCE IN CONSUMERS RIGHTS (L. Koplow & H. Bloom eds. 1978); see also 42 U.S.C. §§ 6012 (protection and advocacy system for the developmentally disabled), 9501 (protection and advocacy system for mentally ill persons) (1982).

21 See, e.g., Steinbrook & Lo, Decision Making for Incompetent Patients by Designated Proxy: California's New Law, 310 NEW ENG. J. MED. 1598 (1984) (discussing California's Durable Power of Attorney for Health Care Act, which explicitly requires the agent to decide as the principal would have decided if capable).

22 See, e.g., Brophy v. New England Sinai Hosp., Inc., 398 Mass. 417, 497 N.E.2d 626 (1986).

23 Under the “substituted judgment” standard, the proxy decisionmaker is expected to “don the mental mantle” of the incompetent patient, to decide as the patient would have decided if, for one magic moment, the incompetent person were suddenly competent again. Superintendent of Belchertown v. Saikewicz, 373 Mass. 728, 752, 370 N.E.2d 417,431 (1977).

24 Under the “best interests” standard, the proxy decisionmaker decides to pursue that course that the proxy believes to serve and protect the best interests of the incompetent patient. See PRESIDENT's COMMISSION, supra note 2, at 134. For a critique of the substituted judgment/best interests distinction, see Guthiel & Appelbaum, , Substituted Judgment: Best Interests in Disguise, 13 HASTING CENTER REP. 8 (1983).Google Scholar

25 Certainly, some judicial precedent exists for the purported use of substituted judgment even where the patient's own autonomous wishes are not — and could not — be known. For example, the Massachusetts courts have set forth factors to be considered in making such judgments. See Superintendent of Belchertown v. Saikewicz, 373 Mass. 728, 735, 370 N.E.2d 417, 422 (1977); In re Hier 18 Mass. App. 200, 209, 464 N.E.2d 959, 964 (1984).

26 See, e.g., Solnick, , Proxy Consent for Incompetent Non-Terminally III Adult Patients, 6 J. LEGAL MED. 1 (1985).Google Scholar

27 See generally B. HOSFORD, BIOETHICS COMMITTEES: THE HEALTH CARE PROVIDER'S GUIDE (1986); INSTITUTIONAL ETHICS COMM. & HEALTH CARE DECISION MAKING (R. Cranford & A. Doudera eds. 1984).

28 See Weisman, , A Nursing Home's Experience with an Ethics Committee, 29Google Scholar NURSING HOMES, Sept.-Oct. 1980, at 2; see also M. KAPP, PREVENTING MALPRACTICE IN LONG-TERM CARE: STRATEGIES FOR RISK MANAGEMENT 158-61 (1987).

29 See, e.g., Veatch, Limits of Guardian Treatment Refusal: A Reasonableness Standard, 9 AM. J.L. & MED. 427 (1984) (discussing the proper role of health professionals, hospital ethics committees and courts in the decisionmaking process).

30 Capron, Authority of Others to Decide About Biomedical Interventions With Incompetents, in WHO SPEAKS FOR THE CHILD? THE PROBLEMS OF PROXY CONSENT (W. Gaylin & R. Macklin eds. 1982).

31 LIFE-SUSTAINING TECHNOLOGIES, supra note 2, at 110.

32 Id. at pp. 133-37 (citing Capron, Authority of Others to Decide About Biomedical Interventions with Incompetents, in WHO SPEAKS FOR THE CHILD? THE PROBLEM OF PROXY CONSENT (W. Gaylin & R. Macklin eds. 1982)).

33 For definitions of decisionmaking mental competence, see, e.g., Culver, The Clinical Determination of Competence, in LEGAL AND ETHICAL ASPECTS OF HEALTH CARE FOR THE ELDERLY 277 (M. Kapp, H. Pies 8c A. Doudera eds. 1986).

34 See, e.g., F., COLLIN, J., LOMBARD & A., MOSES, DRAFTING THE DURABLE POWER OF ATTORNEY: A SYSTEMS APPROACH (1984); Note, Appointing an Agent to Make Medical Treatment Choices, 84 COLUM. L. REV. 985 (1984).Google Scholar

35 For a listing of state statutes permitting living wills to be used as proxy directives, see SOCIETY FOR THE RIGHT TO DIE, THE PHYSICIAN AND THE HOPELESSLY III PATIENT: LEGAL, MEDICAL AND ETHICAL GUIDELINES 25 (1985).

36 For a discussion of the health care professional's role in helping patients to do advance planning, see generally Schneiderman & Arras, Counseling Patients to Counsel Physicians on Future Care in the Event of Patient Incompetence, 102 ANNALS INTERNAL MED. 693 (1985); Uhlmann, Clark, Pearlman, Downs, Addison & Haining, supra note 11, at 882-84.

37 Cf. Wingard, Jones & Kaplan, Institutional Care Utilization by the Elderly: A Critical Review, 27 GERONTOLOGIST 156, 161 (1987)Google Scholar (availability of caregivers reduces risk of institutionalization).

38 See, e.g., Superintendent of Belchertown v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977); see also In re Storar, 52 N.Y.2d 363, 420 N.E.2d 54 (1981) (involving decisionmaking for a profoundly retarded man in a non-nursing home environment); In re Hier, 18 Mass. App. 200, 464 N.E.2d 959 (1984)(nursing home resident with a long history of mental illness).

39 See Areen, The Legal Status of Consent Obtained from Families of Adult Patients to Withhold or Withdraw Treatment, 258 J. AM. MED. ASS'N 229 (1987).

40 Id.; Comment, The Role of the Family in Medical Decisionmaking for Incompetent Adult Patients: A Historical Perspective and Case Analysis, 48 UNIV. PITT. L. REV. 539 (1987).

41 For cases explicitly stating that families must act in good faith, see Barber v. Superior Ct., 147 Cal. App. 3d 1006, 195 Cal. Rptr. 484 (1983); Foody v. Manchester Mem. Hosp., 40 Conn. Supp. 127, 482 A.2d 713 (1984); John F. Kennedy Mem. Hosp. v. Bludworth, 452 So. 2d 921 (Fla. 1984).

42 See Baron, , The Case/or the Courts, 32Google Scholar J. AM. GERIATRICS SOC'Y 734 (1984); Marzen, , Medical Decisionmaking for the Incompetent Person: A Comprehensive Approach, 1Google Scholar ISSUES L. & MED. 293 (1986).

43 42 U.S.C. § 3030d (a)(10) (1987 & Supp. 1988).

44 See generally A. MONK, L. KAYE & H. LITWIN, RESOLVING GRIEVANCES IN THE NURSING HOME: A STUDY OF THE OMBUDSMAN PROGRAM (1984).

45 98 N.J. 321, 486 A.2d 1209 (1985).

46 Id. at 382, 486 A.2d at 1242.

47 For persuasive critiques of this aspect of the Conroy decision, see Annas, , When Procedures Limit Rights: From Quinlan to Conroy, 15Google Scholar HASTINGS CENTER REP. 24 (1985); Curran, Defining Appropriate Medical Care: Providing Nutrients and Hydration for the Dying, 313 NEW ENG. J. MED. 940 (1985).

48 In re, Peter, 108 NJ. 365, 529, A.2d 419 (1987)(ombudsman no longer required to refuse permission to discontinue a nursing home resident's artificial feeding just because the resident was likely to survive for more than one year with such feeding). In this case, the New Jersey nursing home ombudsman had investigated and found that all requirements set by the court in Conroy for removal of nasogastric feeding tubes had been met, with the exception of the provision that the individual is likely to die in one year. The ombudsman also found that Mrs. Peter and her family would want the tubes removed, but since the one year provision was not met, felt constrained to object to the guardian's request for removal. He stated:

These findings create a dilemma with which I have to struggle … . On the other hand, my role as ombudsman requires me to advocate for and protect the patient's rights and interests. I am convinced in this case that Hilda Peter would not have wanted to continue life in this way, and were she competent, her right to chose would be respected.

Sullivan, Ombudsman Bars Removal of a Feeding-Tube in Jersey, N.Y. Times, Mar. 7, 1986, at B2, col. 1.

49 Broderick, , One-Legged Ombudsman in a Mental Hospital: An Over-the-Shoulder Glance at an Experimental Project, 22 CATH. U.L. REV. 517 (1973).Google Scholar

50 See Society for the Right to Die, Brief of Amicus curiae — Brophy v. New England Sinai Hospital, Inc., 35 J. AM. GERIATRICS SOC'Y 669 (1987).

51 See 42 U.S.C. § 3030d(a)(10)(stating the original purpose of the nursing home ombudsman was to “receive, investigate, and act on complaints … and to advocate for well being of residents).]

52 Cf. Brown, Public Hospitals on the Brink: Their Problems and Their Options, 7 J. HEALTH POL., POL'Y & L. 927 (1983).

53 See, e.g., In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985). 54 Wyatt v. Stickney, 344 F. Supp. 373 (M.D. Ala. 1972).

55 Litwin, Kaye & Monk, Conflicting Orientations to Patient Advocacy in Long-Term Care, 24 GERONTOLOGIST 275 (1984);Google Scholar Monk & Kaye, The Ombudsman Volunteer in the Nursing Home: Differential Role Perceptions of Patients’ Representative for the Institutionalized Aged, 22 GERONTOLOGIST 194 (1982).

56 See Rengo, The Double-Edged Sword of Nursing Home Advocacy, in PUBLIC CONCERNS, COMMUNITY INITIATIVES: THE SUCCESSFUL MANAGEMENT OF NURSING HOME COMMUNITY INFORMATION PROGRAMS 18-20 (C Ewig & J. Grigg eds. 1985)(discussing the three crucial duties of the nursing home ombudsman as investigation, mediation, and information gathering); see also Broderick, supra note 47, at 530-32.

57 BLACK's LAW DICTIONARY 635 (5th ed. 1979)(defines “guardian ad litem” as “a special guardian appointed by the court to prosecute or defend, in behalf of an infant or incompetent, a suit to which he is a party, and such guardian is considered an officer of the court to represent the interests of the infant or incompetent in the litigation“); Baron, , Assuring ‘Detached but Passionate Investigation and Decision': The Role of Guardians Ad Litem in Saikewicz-Type Cases, 4Google Scholar Am. J.L. & Med. 111 (1978).

58 Cf. Baron, supra note 4, at 736 (arguing in support of this view that: (1) judges must make and explain decisions based on principles; (2) judicial decisions are impartial; (3) the adversary quality of the proceedings assures that all sides are considered; and (4) the public nature of the proceedings protects the patient); Solnick, Withdrawing and Withholding of Life- Support in Terminally III Patients, Part II, 4 MED. & L. 1 (1985) (arguing that to protect the incompetent patient's interest in the continuation of medically appropriate treatment and to protect the patient's right to refuse or withdraw treatment, an adversary proceeding before a court should be required by statute in order to assure that all sides of the issue are argued fully). The same arguments made in favor of court appointment of the substitute decisionmaker should apply with full force to the selection of a guardian ad litem, who is an officer of the court.

59 Cf. Mariner, , Decision Making in the Care of Terminally III Incompetent Persons: Concerns About the Role of the Courts, 32Google Scholar J. AM. GERIATRICS SOC'Y 739 (1984)(indicating dismay over judicial involvement in life-sustaining medical treatment decisions for incurably ill patients who cannot express their own preferences, and preferring that the role of the courts be restricted to reviewing the decisionmaking of others, such as family or medical professionals, in order for there to be procedural fairness). Arguments against routine court appointment of proxy decisionmakers should apply with full force to routine appointment of resident advocates, whose very effectiveness in advocacy depends on independence.

60 Cf Veatch, supra note 29, at 442-49 (1984) (expressing a strong preference for the deference toward the decisions of “bonded guardians,” such as those with whom the patient previously enjoyed a positive relationship, in the area of acute medical decisionmaking for incompetent patients).

61 Cf. Iris, Guardianship and the Elderly: A Multiperspective View of the Decisionmaking Process, GERONTOLOGIST (Special Supplement)(In Press); Morrissey, , Guardians Ad Litem: An Educational Program in Virginia, 22 GERONTOLOGIST 301 (1982).Google Scholar In addition, the Retirement Research Foundation, through the second phase of its initiative in “Autonomy in Long Term Care,“ currently is funding a project at the University of New Mexico's Institute for Public Law, to identify and train volunteers to act as guardians ad litem to fulfill the substitute medical decisionmaking role on behalf of elderly hospital patients who have no family or friends to act in the proxy capacity. See Retirement Res. Found., Personal Autonomy in Long Term Care Initiative Newsletter Issue 1, at 3 (Nov. 1987).

62 On the guardian's role to advocate for the ward's best interests, see, Veatch, supra note 29, at 440-41; Tyson v. Richardson, 103 Wis. 397, 399, 79 N.W. 439, 441 (1899)(best interests of infant); Kingsbury v. Buckner, 134 U.S. 650, 678-81 (1890)(best interests of infant).

63 On the guardian's role to advocate consistently with the ward's substituted judgment, see, Veatch, supra note 29, at 439-40. See generally Baron, , supra note 42.Google Scholar

64 For development of the concept of “spoken choice,” see Zuckerman, , An Attorney's View, 11 GENERATIONS 60 (1987);Google Scholar Zuckerman, , Conclusions and Guidelines for Practice, 11 GENERATIONS 67 (1987).Google Scholar

65 Contra In rejobes, 210 N.J. Super. 543, 510 A.2d 133 (1986)(court refused to appoint a “life advocate“); Matter of Spring, 380 Mass. 629, 405 N.E.2d 115 (1980)(probate court appropriately decided that treatment should be withheld); Superintendent of Belchertown v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977) (court applied substituted judgment standard to determine that incompetent patient, if competent, would have elected not to accept chemotherapy). For an analysis sympathetic to appointment of a mandatory pro-life guardian ad litem, see Note, Can a ‘Life Advocate’ Impair the Constitutional Right to Reject Life-Prolonging Medical Treatment', 17 CUMBERLAND L. REV. 553 (1986-87).

66 See W. SCHMIDT, K. MILLER, W. BELL & E. NEW, PUBLIC GUARDIANSHIP AND THE ELDERLY (1981); Schmidt, , The Evolution of a Public Guardianship Program, 12Google Scholar J. PSYCHIATRY & L. 349 (1984).

67 See, e.g., Cal. Prob. Code §§ 2353-2357 (West 1979 & Supp. 1989); 111. Ann. Stat. c. 110 1/2, ¶¶ 11 11-3, 11-5, 11-10.1, 11-13, 13-1 - 13-5 (Smith-Hurd Supp. 1988); Me. Rev. Stat. Ann. tit. 18A, §§ 5-301 - 5-313 (West 1979 & Supp. 1988).

68 See Schmidt, supra note 66, at 355-59.

69 The National Society of Patient Representatives is an affiliate of the American Hospital Association. Its regular publication is Patient Representative. See NATIONAL SOC'Y PATIENT REPRESENTATIVES, PATIENT REPRESENTATION IN CONTEMPORARY HEALTH CARE (1985) (National Soc'y Patient Representatives is an affiliate of the American Hospital Association).

70 On the conflict of interest tension experienced by a hospital patient representative, see S. TERKEL, WORKING 646-47, 650 (1974).

71 Sarah Lawrence College in Riverdale, New York offers a degree program in patient advocacy.

72 Medicare Part A currently pays for skilled nursing facility care if it is needed on a daily basis following a hospital stay of at least three days, up to one hundred lifetime days of care. 42 U.S.C. § 1395d (a)(2)(A) (1987). Waivers of the three-day hospitalization requirement are permitted, id. at §§ 1395d (a)(2)(B) & (f). In 1985, Medicare paid for approximately two percent of this nation's total nursing home bill. See Burda, , The Nation Looks for New Ways to Finance Care for the Aged, 61Google Scholar HOSP., Sept. 20, 1987, at 48.

73 Medicaid, the federal and state combined health care financing program for the indigent, pays for skilled nursing and intermediate care. 42 U.S.C. §§ 1396d (c), (d) & (f) (1987).

In 1984, Medicaid paid approximately forty-two percent of the nation's nursing home bill. U.S. GEN. ACCOUNTING OFFICE, LONG-TERM CARE INSURANCE: COVERAGE VARIES WIDELY IN A DEVELOPING MARKET 10 (May 1987) [hereinafter U.S. GEN. ACCOUNTING OFFICE].

74 Private third-party insurance for long-term care is quite underdeveloped at present. It comprised around only one percent of the total nursing home bill in 1984. U.S. GEN. ACCOUNTING OFFICE, supra note 73, at 10. Regarding efforts to develop this potential source of long-term care funding, see id.; Burda, supra note 72, at 54.

75 Private payments by residents or their families accounted for more than fifty percent of total nursing home payments in 1984. U.S. GEN. ACCOUNTING OFFICE, supra note 73, at 10.

76 See Zischka & Jones, Volunteer Community Representatives as Ombudsmen for the Elderly in Long-Term Care Facilities, 24 GERONTOLOGIST 9 (1984).

77 See Veatch, supra note 29, at 441.

78 See Alessandroni, supra note 12, at 29.

79 Cf. Kapp, Promoting the Legal Rights of Older Adults: Role of the Primary Care Physician, 3 J. LEGAL MED. 367, 373-75 (1982) (discussing how physicians should cooperate with attorneys representing older patients to promote the medicolegal well-being of those patients).

80 On the legal significance of explicit institutional policies and procedures concerning such matters, see Matter of Rquena, 213 N.J. Super. 443, 517 A.2d 869 (1986). The New Jersey court held that where there is conflict between a resident's known preference for discontinuation of medical treatment and a nursing home's unwritten, unofficial, unannounced policy in favor of continuation of such treatment, the resident's wishes must prevail. The court, however, that the result might be the same if the institutional policy has been officially adopted, put in writing, and made known to prospective residents and their families prior to admission.

The Congressional Office of Technology Assessment has produced a document explicating the legal and ethical implications of health care institutional policies and procedures concerning medical treatment issues. The coauthor of this article, Marshall B. Kapp, served as Chair of the OTA Working Group on this project. See OFFICE OF TECH. ASSESSMENT, U.S. CONG. INSTITUTIONAL PROTOCOLS FOR DECISIONS ABOUT LIFE-SUSTAINING TREATMENTS (July 1988).

81 See Brown & Thompson, Nontreatment of Fever in Extended Care Facilities, 300 NEW ENG. J. MED. 1246, 1249 (1979)(nurses were less likely to report a fever if the patient required extensive nursing care).

82 See, e.g., Johnson, , Life, Death, and the Dollar Sign: Medical Ethics and Cost Containment, 252Google Scholar J. AM. MED. ASS'N 223 (1984); see also Kapp, , Hospital Reimbursement by Diagnosis Related Groups: Legal and Ethical Implications for Nursing Homes, 14Google Scholar J. LONG-TERM CARE ADMIN. 20 (1986).

83 See supra note 35.

84 See supra notes 33-34.

85 See Kayser-Jones, , Distributive Justice and the Treatment of Acute Illness in Nursing Homes, 23Google Scholar Soc. Sci. & MED. 1279 (1986)(discussing the important role of the nursing assistant in the decision-making process.

86 See, e.g., A.B.A. COMM. ON LEGAL PROBLEMS OF THE ELDERLY & NATIONAL CITIZENS' COALITION FOR NURSING HOME REFORM, ENFORCING NURSING HOME RESIDENTS’ RIGHTS: A NEW ROLE FOR THE PRIVATE BAR (1982).

87 Cf. A.B.A. COMM. ON LEGAL PROBLEMS OF THE ELDERLY, STATEMENT OF RECOMMENDED JUDICIAL PRACTICES (E. Wood ed. 1986).