Hands On/Hands Off: Why Health Care Professionals Depend on Families but Keep Them at Arm's Length

Edson M. , Wit (New York: Faber and Faber, 1999): At 11.

“New York Hospitals,” New York Times, Dec. 31, 1900, at 12; quoted in Rosner D. , A Once Charitable Enterprise: Hospitals and Health Care in Brooklyn and New York, 1885–1915 (Cambridge and New York: Cambridge University Press, 1982): At 78.

Zuckerman C. , End of Life Care and Hospital Legal Counsel: Current Involvement and Opportunities for the Future. (New York: Milbank Memorial Fund and United Hospital Fund, 1999): At 8.

Galanti G. , Caring for Patients from Different Cultures: Case Studies from American Hospitals, 2nd Edition. (Philadelphia: University of Pennsylvania Press, 1997): At 55.

Wright L.M. Leahy M. , “Maximizing Time, Minimizing Suffering,” Journal of Family Nursing (August 1999): 259–74.

Veatch R.M. , “Medical Codes and Oaths: History,” Encyclopedia of Bioethics, vol. 3 (995): At 1426.

See, for example, such major court cases addressing end of life care as Cruzan v. Director, 497 U.S. 261, 110 S.Ct. 2841 (1990); In re Conroy, 98 N.J., 486 A.2d 1209 (1985); and In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976); for seminal cases addressing informed consent, see, for example, Canterbury v. Spence 464 F.2d 772 (D.C. Cir. 1972) and Cobbs v. Grant, 104 Cal. Rptr. 505, 502 P.2d 1 (1972); for major treatises addressing patient autonomy in health care decision making see, for example, President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions. (Washington: U.S. Government Printing Office, 1982); Meisel A. , The Right To Die (New York: John Wiley & Sons, Inc, 1989 and subsequent cumulative supplements); for a major federal legislative initiative to support patient autonomy, see The Patient Self-Determination Act (OBRA 1990): The Omnibus Budget Reconciliation Act of 1990, Pub. L. 101–508, § 4206,4751 (OBRA), 42 U.S.C. § 1395 cc(f) & 42 U.S.C. § 1396 a (a) (Supp. 1991).

Ruddick W. , “Family Wishes and Patient Autonomy,” Hastings Center Report, 10, no. 5, (1980): 21–22. Ruddick's later works take a much more family-centered approach. See, for example, “Transforming Homes and Hospitals,” in Bringing the Hospital Home: Ethical and Social Implications of High-Tech Home Care, Arras J.D. , ed. (Baltimore: Johns Hopkins University Press, 1995): 166–79.

The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions (Washington, DC, 1983): 127.

Id. at 128.

Nelson H.L. Nelson J.L. , The Patient in the Family: An Ethics of Medicine and Families (New York: Routledge, 1995); Brock D. , “What Is the Moral Authority of Family Members to Act as Surrogates for Incompetent Patients?” The Milbank Quarterly, 74 (1996): 599–618; Hardwig J. , “Is There a Duty to Die?” Hastings Center Report, 27, no. 2 (1997): 34–42; Hardwig J. , “What About the Family?” Hastings Center Report, 20, no.2 (1990): 5–10; Blustein J. , “The Family in Medical Decisionmaking,” Hastings Center Report, 23, no. 3 (1993):. 6–13; Jecker N.S. , “Being a Burden on Others,” Journal of Clinical Ethics, 4, no. 1 (1993): 16–20.

Emanuel E.J. , The Ends of Human Life: Medical Ethics in a Liberal Polity (Cambridge: Harvard University Press, 1991): At 56–57, 89. Despite his critique of the family as a social institution, Emanuel dedicated his book to his parents, “a contribution toward fulfilling the Fifth Commandment.” He is also principal investigator of a recent study of terminal illness that documents the essential role of family. See note 21.

Zuckerman , supra note 3.

Levine C. , “AIDS and Changing Definitions of Family,” in Nelkin D. Willis D.P. Parris S.V. , A Disease of Society: Cultural & Institutional Responses to AIDS (New York: Cambridge University Press, 1991): At 48.

Waltman R.E. , “Turn Patients' Next-of-Kin into Partners, Not Adversaries,” Medical Economics, August 11, 1997: 81–92.

Marvel M.K. Morphew P.K. , “Levels of Family Involvement by Resident and Attending Physicians,” Family Medicine, 25, no. 1 (1993): 26–30.

Rolland J. , Families, Illness, and Disability: An Integrative Treatment Model (New York: Basic Books, 1994); Levitt J.M. , “The Conceptualization and Assessment of Family Dynamics in Terminal Care,” The Hospice Journal, 2, no. 4 (1986): 1–18.

See, for example, Hickson G.B. , “Obstetricians' Prior Malpractice Experience and Patients' Satisfaction with Care,” JAMA, 272, no. 20 (1994): 1583–1587; Beckman H.B. , “The Doctor-Patient Relationship and Malpractice: Lessons from Plaintiff Depositions,” Archives of Internal Medicine, 154 (1994): 1365–70.

Hoffman C. Rice D. Sung H. , “Persons with Chronic Conditions: Their Prevalence and Costs,” JAMA, 276, no. 18 (1996): 1473–79.

Arno P. Levine C. Memmott M.M. , “The Economic Value of Informal Caregiving,” Health Affairs 18, no.2 (1999): 182–88.

Emanuel E. , “Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill Patients,” N. Engl. J. Med. 341 (1999): 956–63.

Reinhardt U. , “Sending More through Cost Control: Our Obsessive Quest to Gut the Hospital,” Health Affairs, no. 15 (1996): 146–54; American Hospital Association, Hospital Statistics, 1999 Edition (Chicago, 1999), Table 1, p. 3.

Arno P. Bonuck K. Padgug R. , “The Economic Impact of High-Tech Home Care,” in Arras , ed., Bringing the Hospital Home, supra note 8, at 222.

Gordon S. , “The Impact of Managed Care on Female Caregivers in the Hospital and Home,” Journal of the American Medical Womens' Association, 52, no.2 (1997): 76.

Quoted in Anders G. , “Who Pays Cost of Cut-Rate Heart Care?” Wall Street Journal, October 15, 1996: At B10.

“More HMOs Order Outpatient Mastectomies,” Wall Street Journal, Marketplace feature, November 6, 1996, at B1.

FitzPatrick M. , letter in series, “Cruel Medical Care is Good for Business,” Wall Street Journal, November 27, 1996, at A11.

Institute of Medicine, Nursing Staff in Hospitals and Nursing Homes: Is It Adequate? Washington DC: National Academy Press, 1996, as cited in Gordon S. , Life Support: Three Nurses on the Front Lines (New York: Little Brown, 1997): At 265.

Lagnado L. , “Patients Give Hospitals Poor Score Card,” Wall Street Journal, January 28, 1997, at B1.

Doty P. , “Informal Caregiving,” in Evashwick C. , ed., The Continuum of Long-Term Care: An Integrated Systems Approach (Albany, NY: Delman Publishers, 1995): 125–41.

U.S. Census Bureau, Survey of Income and Program Participation, August 1997; Marks N. , “Caregiving Across the Lifespan: National Prevalence and Predictions,” Family Relations , no. 45 (1996): 27–36; National Alliance for Caregiving, Family Caregiving in the U.S.: Findings from a National Survey, June 1997; National Long-Term Care Surveys 1982, 1984, and 1989, as cited in Manton K.G. Corder L.S. Stallard E. , “Estimates of Change in Chronic Disability and Institutional Incidence and Prevalence Rates in the U.S. Elderly Population from the 1982, 1984, and 1989 National Long-Term Care Survey,” The Journals of Gerontology, 48, no. 4, (1993): S153–S166.

Stone R. Cafferata G.L. Stangl J. , “Caregivers of the Frail Elderly: A National Profile,” The Gerontologist, 27, no.5 (1987): 616–26.

Marks , supra note 32.

Hoffman , supra note 19.

Haupt B.J. Jones A. , “The National Home and Hospice Care Survey: 1996 Summary,” National Center for Health Statistics, Series 13, no. 141 (1999): 22.

Astudillo W. , “How Can Relations Be Improved Between the Family and the Support Team During the Care of Terminally Ill Patients?” Support Care for Cancer, 3 (1995): At 72.

Higginson I. Wade A. McCarthy M. , “Palliative Care: Views of Patients and Their Families,” British Medical Journal, 30 (1990): At 277.

Kristjanson L.J. , “Family Members' Perceptions of Palliative Cancer Care: Predictors of Family Functioning and Family Members' Health,” Journal of Palliative Care, 12, no. 4 (1996): At 20.

In another context R. Macklin objects: “There is something vaguely disturbing about the idea of ‘treating the family.’ The notion of ‘treatment’ is ambiguous. It can mean ‘the performance of therapy,’ but it also has a nonmedical sense, meaning ‘dealing with’ or ‘behaving toward.’ [In a case involving a critically ill infant who was unlikely to survive the surgery the mother wanted] she criticized the medical team because ‘“treating the family’ had assumed as much importance as treating the patient.” Macklin R , Mortal Choices: Ethical Dilemmas in Modern Medicine (Boston: Houghton Mifflin, 1987): At 132.

Charlton R. Dolman E. , “Bereavement: A Protocol for Primary Care,” British Journal of General Practice, 45, no. 397 (1995): 427–30; Prigerson H.G. Bierhals A.J. Kasl S.V. , “Traumatic Grief as a Risk Factor for Mental and Physical Morbidity,” American Journal of Psychiatry, 154, no. 5 (1997): 616–23.

Cohen-Almagor R. , “Patients' Right to Die in Dignity and the Role of their Beloved People,” Annual Review of Law and Ethics , Band 4, 1996, Berlin: Duncker & Humblot. Cohen-Almagor considers three U.S. court cases. In the Spring case, involving a family's request to discontinue dialysis for Earl Spring, who in the court's words was “heavily sedated to restrain his hostile impulses, uncooperative toward his arduous maintenance program, insensible of his family and his situation,” Cohen-Almagor concludes that “we should be cautious of incidents in which the best interests of the patient's beloved people come at the expense of the best interests of the patient.” Acknowledging that the Spring family (wife and son) was close-knit and loved Earl Spring and appealed to the court “to keep their own sanity, their own lives,” Cohen-Almagor, like several other commentators on this case, concluded that the patient's interest in a longer life was strong enough to outweigh any other interests.

Goffman E. , Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (Garden City, NY: Anchor Books, 1961): At 76.

Carr J. M. Fogarty J. P. , “Families at the Bedside: An Ethnographic Study of Vigilance,” Journal of Family Practice, 48 no.6 (1999): 433–38.

Bonnel W.B. , “Not Gone and Not Forgotten: A Spouse's Experience of Late-Stage Alzheimer's Disease,” Journal of Psychosocial Nursing, 34, no. 8 (1996): 24–27.

Foner N. , “Relatives as Trouble,” in The Culture of Long-Term Care, by Henderson H.N. Vesperi M.D. (Westport, CT: Bergin & Garvey, 1995): At 172.

Charon R. , “Let Me Give a Listen to Your Heart,” in Gordon S. Benner P. Noddings N. , eds., Caregiving: Readings in Knowledge, Practice, Ethics, and Politics (Philadelphia: University of Pennsylvania Press, 1996): At 294.

Id. at 288–89.

Glaser B.G. Strauss A.L. , Time for Dying (Chicago, Aldine Publishing Company, 1968): At 151.

Eichhorn D.J. Meyers T.A. Mitchell T.G. Guzzetta C. E. , “Opening the Doors: Family Presence during Resuscitation,” Journal of Cardiovascular Nursing, 10, no. 4 (1996): 59–70.

Dubler N.N. , “The Doctor-Proxy Relationship: The Neglected Connection,” Kennedy Institute of Ethics Journal, 5, no. 4 (1995): 289–306.

Pearlman R.A. Uhlmann R.F. Jecker N.S. , “Spousal Understanding of Patient Quality of Life: Implications for Surrogate Decisions,” Journal of Clinical Ethics, 3, no. 2 (1992): 114–21; Seckler A.B. Meier D.E. Mulvihill M. Cammer-Paris B.E. , “Substituted Judgment: How Accurate Are Proxy Predictions?” Annals of Internal Medicine, 115 (1991): 289–94; Tomlinson T. Howe K. Norman M. Rossmiller D. , “An Empirical Study of Proxy Consent for Elderly Persons,” The Gerontologist, 30 (1990): 54–61; Uhlmann R.F. Pearlman R. A. Cain K.C. , “Physicians and Spouses' Predictions of Elderly Patients' Treatment Preferences,” Journal of Gerontology, 43 (1988): 115–21; Zweibel N.R. Cassel C. K. , “Treatment Choices at the End of Life: A Comparison of Decisions by Older Patients and their Physician-Selected Proxies,” The Gerontologist, 29 (1989): 615–21.

Sulmasy D.P. Terry P.B. Weisman C.S. , “The Accuracy of Substituted Judgment in Patients with Terminal Diagnoses,” Annals of Internal Medicine, 128, no.8 (1998): 621–29.

Post L.F. Blustein J. Dubler N.N. , “Introduction: The Doctor-Proxy Relationship: An Untapped Resource,” Journal of Law, Medicine & Ethics, 27 (1998): 5–12.

Capron A.M. , “Foreword,” in Zucker M.B. Zucker H.D. , eds., Medical Futility and the Evaluation of Life-Sustaining Interventions (Cambridge: Cambridge University Press, 1997): ix–xii.

Prip W. Moretti A. , “Medical Futility: A Legal Perspective,” in Zucker Zucker , eds. supra note 54: 136–54.

Meisel A. , The Right to Die, 2nd ed., vol. 2 (New York: John Wiley & Sons, 1995).

Hines S.C. Gover J.J. Holley J.L. , “Dialysis Patients' Preferences for Family-Based Advance Care Planning,” Annals of Internal Medicine, 130 (1999): 825–28.

Brock , supra note 11: 599–618.

Id. at 612.

Brophy P. , “Death with Dignity?” in Zucker Zucker , supra, note 54: 15–23.

See, for example, Groopman J. , “The Last Deal,” The New Yorker, September 8, 1997: 62–74. In his account of treating a cancer patient after an aggressive experimental regimen has ended in a relapse, and the patient is clearly dying, Groopman orders emergency CAT scans to see if the cancer is encroaching on the spinal cord. He says that it would be terrible for the patient to die “paralyzed and incontinent.” While this may be a common view, many people with spinal cord injuries live long and productive lives even though paralyzed and incontinent.

Singer P.A. Martin D.K. Kelner M. , “Quality End-of-Life Care: Patients' Perspectives,” JAMA, 281 (1999): 163–68.

Covinsky K.E. , “Is Economic Hardship on the Families of the Seriously Ill Associated with Patient and Surrogate Care Preferences?” Archives of Internal Medicine, 156, no. 15 (1996): 1737–41.

Collopy B. Dubler N.N. Zuckerman C. , “Toward an Ethic of Accommodation,” Hastings Center Report, 20, no. 2, (1990); Dill A.E. P. , “The Ethics of Discharge Planning for Older Adults: An Ethnographic Analysis,” Social Science and Medicine, 41, no. 9 (1995): 1289–99.

Levine C. , Rough Crossings: Family Caregivers' Odysseys through the Health Care System (New York: United Hospital Fund, 1998).

Jacobson J. A. Francis L.P. Battin M.P. , “Dialogue to Action: Lessons Learned from Some Family Members of Deceased Patients at an Interactive Program in Seven Utah Hospitals,” Journal of Clinical Ethics, 8, no. 4 (1997): 359–71.

Carillo J.E. Green A.R. Betancourt J.R. , “Cross-Cultural Primary Care: Patient-Based Approach,” Annals of Internal Medicine, 130 (1999): 829–34.

Duffy F.D. , “Dialogue: The Core Clinical Skill.” Annals of Internal Medicine, 128, no. 2: 139–41.

Tilden V.P. Tolle S.W. Garland M.J. Nelson C.A. , “Decisions about Life-Sustaining Treatment: Impact of Physicians' Behavior on the Family,” Archives of Internal Medicine, 155, no.6 (1995): 633–38.

Dubler N.N. Marcus L.J. , Mediating Bioethical Disputes: A Practical Guide (New York: United Hospital Fund, April 1994); Alpers A. Lo B. , “Avoiding Family Feuds: Responding to Surrogate Demands for Life-Sustaining Interventions,” Journal of Law, Medicine & Ethics, 27, no. 1 (1999): 74–80.