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Goldilocks and Mrs. Ilych: A Critical Look at the “Philosophy of Hospice”

Published online by Cambridge University Press:  29 July 2009

Felicia Ackerman
Felicia Ackerman
Affiliation:
Professor of Philosophy in the Department of Philosophy, Brown University, Providence, Rhode Island. A recipient of an O'Henry award, many of her published short stories deal with issues in medical ethics.
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Extract

Anyone who thinks contemporary American society is hopelessly contentious and lacking in shared values has probably not been paying attention to the way the popular media portray the hospice movement. Over and over, we are told such things as that “Humane care costs less than high-tech care and is what patients want and need,” that hospices are “the most effective and least expensive route to a dignified death,” that hospice personnel are “heroic,” that their “compassion and dedication seem inexhaustible,” and that “few could argue with the powerful message that it is better [for dying patients] to leave wrapped in the love of family and care givers than locked in the cold, metallic embrace of a machine.“

Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 6 , Issue 3 , Summer 1997 , pp. 314 - 324
Copyright
Copyright © Cambridge University Press 1997

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References

Notes

1. Spiegel, D. Compassion is the best medicine. Op-ed, New York Times 1994Google Scholar;January 10.

2. See also Ackerman, F. Letter to the Editor New York Times 1994Google Scholar;January 25 for criticism of this view.

3. Shavelson, L. What the dying really need. Op-ed, New York Times 1996Google Scholar;March 8.

4. Goldberg, V. Looking straight into the eyes of the dying. New York Times 1996;March 31.Google Scholar

5. See note 4. Goldberg, 1996.Google Scholar

6. See note 4. Goldberg, 1996. As I argue in my letter to the editor (New York Times 1996;April 27)Google Scholar, this illustrates the media's tendency to put forth the ‘hospices are good; high-tech care for the dying is bad’ line with about as much sophistication as the “four legs good, two legs bad” motto of Orwell's Animal Farm.

7. The criticisms that do occur are generally from advocates of assisted suicide, who stress the limitations of comfort care and thus do not “argue with the powerful message” quoted above. For example, see Ouill, T. Death and Dignity. New York: W.W. Norton and Co, 1993:76–97.Google Scholar

8. These principles come from Manard, B, Perrone, C. Hospice Care: An Introduction and Review of the Evidence. Arlington, VA: National Hospice Organization, 1994:4.Google Scholar The term ‘philosophy of hospice’ is theirs. I have divided their first principle into my first two and changed the order of some of the other principles to reflect the order in which I discuss them. Also, I have added some material from a list of National Hospice Organization standards for hospice care in Outerbridge, D, Hersh, A. Easing the Passage. New York: Harper Collins, 1991:109–10Google Scholar to my Principle 5 and some material from statements by hospice staff in the Home Box Office documentary, Letting Go: A Hospice Journey, which is distributed by the National Hospice Organization, to my Principle 1.

9. “The National Hospice Organization makes a distinction between a terminal disease—a disease which ultimately leads to death—something we will all encounter at some point, and a terminal illness, which is a physician's prognosis of impending death. The NHO adds a prognosis of death within six months to its working definition of eligibility.” See note 8. Outerbridge, , Hersch, 1991:107–8.Google Scholar

10. See Bernardin, J. Death as a friend. New York Times Magazine 1996;December 1:112–5.Google Scholar

11. These are the words of hospice medical director Dr. Fred Schwartz in Letting Go: A Hospice Journey. See note 8.

12. See note 10. Bernardin, 1996:114.Google Scholar

13. The phrase comes from Nagel T. Death. In: Nagel, T. Mortal Questions. New York: Cambridge University Press, 1979:1.Google Scholar

14. National Hospice Organization. About hospice. Arlington, VA: National Hospice Organization, 1996:5.Google ScholarPubMed

15. See Ackerman, F. No, thanks, 1 don't want to die with dignity. Op-ed, Providence Journal-Bulletin 1990;May 19.Google Scholar

16. See Ackerman, F. Buddies. Commentary 1994;December:54.Google Scholar Note also that disbelief in an afterlife is not even necessary for a rational fear of death. Even believers in an afterlife may rationally fear death, for example, because they do not want to leave their familiar lives and loved ones, because they fear a bad fate in the afterlife, or because their belief in the afterlife is shaky, rather than being as strong and unswerving as Cardinal Bernardin's.

17. Nuland, S. How We Die. New York: Knopf, 1994:58.Google ScholarPubMed

18. It is even more problematic to follow Nuland in expecting such unilateral self-abnegation to be a basis for policy decisions and in using censorious terms like ‘vanity’ for terminally ill or old people who strive to extend their lives, but not for healthy young people who resent the old for “encroaching” on the “careers and resources” of the young. See note 17. Nuland, 1994:86–7Google Scholar, as well as Ackerman, F. No exit. The American Scholar 1995;64(1):131–2 and 134–5.Google Scholar Nuland's book is part of a growing literature that holds that the old and /or terminally ill should be willing to sacrifice their interests in high-tech life-prolongation or last-ditch attempts at cure in order to further (what the authors take to be) the common good. For additional examples of this kind of thinking, see Callahan, D. Setting Limits. New York: Simon and Schuster, 1987Google ScholarPubMed, and Callahan, D. What Kind of Life. New York: Simon and Schuster, 1990.Google Scholar I argue against this sort of view in Ackerman, F. What is the proper role for charity in healthcare? Cambridge Quarterly of Healthcare Ethics 1996;5:428.CrossRefGoogle Scholar See also note 15. Ackerman 1990; note 18. Ackerman 1995.

19. See note 13. Nagel, 1979:10.Google Scholar

20. See note 8. Outerbridge, , Hersh, 1991:107.Google Scholar

21. That is, one can be aware that he is terminally ill and be serene about it, while still doing everything to stave off death as long as possible. Judging from the book of her posthumously collected letters, The Habit of Being (New York: Farrar, Straus, and Giroux, 1979)Google Scholar, this seems to have been the attitude of Flannery O'Connor, who, like Cardinal Bernardin, had a strong Catholic faith.

Note also that the possibility of conflation of the three senses of “accepting death” is more than theoretical. For an account (although not in a hospice context) of how a seriously disabled man was referred for a psychiatric consultation on the grounds that his insistence on receiving high-tech lifesaving treatment meant that he was not “accepting death,” see Powell, R. Rationale or rationing? The Disability Rag and ReSource 1994;July/August:25.Google Scholar Consider also Daniel Callahan's claim that “attempts to oppose any cessation of [life-prolonging] treatment save for the most hopeless cases” amount to “implicit unwillingness … to accept death.” See note 18. Callahan, 1987:196–7.Google Scholar What sense of “accept death” would make this claim both true and nontrivial?

22. Brenneis, J et al. Hospice Code of Ethics. Arlington, VA: National Hospice Organization 1995:7.Google Scholar

23. See note 14. National Hospice Organization 1996:11.Google Scholar

24. Note that although the National Hospice Organization has the traditional hospice antipathy to suicide (as reflected in Principle 2, above) and holds that “the state has an interest in preserving life [although apparently not by “artificial” means!] even in the face of terminal illness,” the Coalition of Hospice Professionals dissents, holding that suicide can be a “competent and rational choice” under certain extreme circumstances. See Greenhouse, L. Before the court, the sanctity of life and death. New York Times 1996;January 5:5.Google Scholar As I have indicated, this paper deals with the “philosophy of hospice” espoused by the National Hospice Organization.

25. I owe this suggestion to Jincy Kornhauser.

26. See note 1. Spiegel, 1994.Google Scholar

27. See note 2. Ackerman, 1994.Google Scholar

28. Kolata, G. Living wills aside, dying cling to hope. New York Times 1997;January 15.Google Scholar

29. Danis, M. A prospective study of the impact of patient preferences on life-sustaining treatment and hospital cost. Critical Care Medicine 1996;24(11):1813.CrossRefGoogle ScholarPubMed

30. Slavin, M. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. British Medical Journal 1990;300:1458.CrossRefGoogle Scholar

31. See note 30. Slavin, 1990:1460.Google Scholar

32. See note 4. Goldberg, 1996.Google Scholar

33. For a rare media portrayal of a terminally ill man who lives at home with both a loving family and a life-prolonging ventilator, see Goldstein, G. How to live. Brown Alumni Monthly 1996;96(6):30–3.Google Scholar

34. See note 3. Shavelson, 1996.Google Scholar

35. For further discussion of this point, see note 15. Ackerman 1990, note 18. Ackerman 1996, and Velleman, J. Against the right to die. The Journal of Medicine and Philosophy 1992;17:665–81.CrossRefGoogle ScholarPubMed

36. The National Hospice Organization's promotional materials include An Analysis of the Cost Savings of the Medicare Hospice Benefit. Arlington, VA: National Hospice Organization, 1995.Google Scholar But this publication does not suggest that a desire to save Medicare money is supposed to figure in a patient's choice to use hospice care. See also note 8. Manard, , Perrone, 1994:18–32.Google Scholar

37. See note 15. Ackerman, 1990.Google Scholar

38. See Ackerman, F. The forecasting game. In: Abrahams, W, ed. Prize Stories 1990: The 0. Henry Awards. Garden City, New York: Doubleday, 1990:318–9.Google Scholar

39. See Ackerman, F. The significance of a wish. Hastings Center Report 1991;21(4):27–9.CrossRefGoogle ScholarPubMed

40. See Ackerman, F. Letter to the editor. New York Times 1987;November 4.Google Scholar

41. See Meilander, G. I want to burden my loved ones. First Things 1991;12–4.Google Scholar

42. I owe this objection to Sara Ann Ketchum. Note also that families can have mixed motives for wanting a terminally ill member to forgo life-prolonging high-tech care or experimental curative care, and my argument applies only to the part of the family's motivation that is self-interested.

43. One possible exception here, pointed out by Donna Harvey in discussion, might be a case involving an old couple, both of whom are frail, but only one of whom is terminally ill, and whose life savings would be exhausted by high-tech life-prolonging care for the terminal one, leaving nothing for the medical needs of the other. But this is a far cry from a case involving an “adult child” who claims to love his terminally ill parent, but who would, on balance, welcome that parent's forgoing expensive life-prolonging or experimental curative treatment in order to preserve the “adult child's” inheritance.

44. See note 14. National Hospice Organization 1996:11.Google Scholar

45. Letter to Lois Guise of Hospice Care of Rhode Island, 6 January 1989, made available to me by the author.

46. A possible objection to this interpretation of the Patient X case is that the hospice's failure to respond to the distress calls is traceable not to hospice policy, but simply to one incompetent employee, who used poor judgment in identifying emergencies. But why weren't enough resources devoted to basic patient care so that all employees could be told to treat any middle-of-the-night telephone call and request for pain relief as an emergency?

47. Tolstoy, L. The Death of Ivan Ilych. New York: New American Library of World Literature, 1960:10.Google Scholar

48. Kron, J. Designing a better place to die. New York Magazine 1976;March 1:43.Google Scholar

49. Dan Brock has pointed out in discussion that this example is just the tip of the iceberg when it comes to conflicts of interest between patients and their families and that potential conflicts multiply when families are home caregivers; e.g., if a patient must be laboriously hand-fed by someone else, a feeding tube would often be easier for the caregiver, but more unpleasant for the patient.

50. I know of no precise statistics on the matter, but Mary Louise Gotta, coordinator of volunteers at Hospice Care of Rhode Island, has estimated in conversation that approximately one-third of the volunteers she has trained in the past few years are members of former patients' families.

51. For an indication of how strange this practice can seem to those who do not take it for granted, consider the question of Richard Rodriguez's Mexican-American mother, “You mean that people tell a psychiatrist about their personal lives?” upon hearing his account of what psychiatry is (Rodriguez, R. Hunger of Memory. New York: Bantam, 1983:193)Google Scholar.

52. See note 8. Letting Go: A Hospice Journey. Note that this hospice social worker has taken it upon herself to decide the acceptable range of attitudes for hospice patients to have toward their parents. What if a hospice patient believes his parents did him great wrong and does not want to forgive, let alone thank them?

53. Dan Brock has suggested in discussion that a more charitable view of Ann Currier's remark would take it to be grounded in concern that Anna Turner might eventually want to do these things and would regret finding herself too debilitated for this. But the social worker's actual remark has no tentativeness, and it would be presumptuous of her simply to assume Anna Turner will be likely to want to do those things. The social worker's reference to “most patients” raises the question of whether she is really seeing Anna Turner as an individual.

54. Hospice chaplain Ros Gordon talking to a patient in Letting Go: A Hospice Journey. See note 8.

55. The information that the counseling component of hospice is optional was provided in conversation by Susan Buckley of the National Hospice Organization.

56. See note 3. Shavelson, 1996.Google Scholar

57. For a particularly subtle and sophisticated formulation of such concerns, see note 35. Velleman, 1992.Google Scholar

58. For example, see the references cited in notes 1, 3, and 4: Spiegel, 1994Google Scholar; Shavelson, 1996Google Scholar; and Goldberg, 1996.Google Scholar

59. See note 17. Nuland, . 1994Google Scholar. Also see note 18. Callahan, 1987, 1990.Google Scholar

60. Brock, D. Voluntary active euthanasia. Hastings Center Report 1992;22(2):19.Google ScholarPubMed

61. Although I know of no statistical data about how widespread such pressure is, it is not difficult to come up with evidence and examples. For instance, consider the media's promotion of hospice care and false dichotomy between “humane” and “high-tech” care (see notes 1–6).

62. For examples of pressure against life-sustaining high-tech care in specific cases, see the Powell case cited in note 21, as well as the case of a hospitalized shooting victim described in Belkin, L. The high cost of living. New York Times Magazine 1993;January 31.Google Scholar See also Ackerman, F. letter to the editor, New York Times Magazine 1993;February 21.Google Scholar

63. A recent survey reports that 60% of baby boomers believe they deserve an inheritance (Birnbaum, J. Of inheritance and ruptured relations: a final accounting. New York Times 1995;July 9)Google Scholar. This raises a question: When people believe they deserve an inheritance, how likely are they to refrain from trying to influence their terminally ill parents to forgo expensive life-prolonging care that will deplete that inheritance? See Ackerman, F. letter to the editor. New York Times 1995;August 6.Google Scholar

64. See note 15. Ackerman, 1990Google Scholar. Also see note 18. Ackerman, 1995 and 1996.Google Scholar

65. A similar point applies to the “slippery slope” argument that the legalization of physician-assisted suicide might lead to such abuses as the practice of nonvoluntary euthanasia on incompetent patients who would not want it. As with the danger of abuses in permitting surrogates to decide about withdrawing life supports, the solution is not to ban the practice, but to ensure “the appropriate principles and procedural safeguards for the exercise of decisionmaking authority by surrogates for incompetent persons in all decisions at the end of life.” (Italics in original.) See note 60. Brock, 1992:21.Google Scholar