Abstract
The following question opened the critical line of the interviews: “Some of the most worrisome data in the two Dutch studies are concerned with the hastening of death without the explicit request of patients. There were 1000 cases (0.8%) without explicit and persistent request in 1990, and 900 cases (0.7%) in 1995. What is your opinion?”
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References
The term PVS is used in reference to patients who are in a twilight zone between life and death. Those patients have suffered brain injuries from different causes: trauma, cerebral anoxia from hypotension or cardiac arrest, cerebrovascular accidents, or dementia. They have periods of wakefulness and physiological sleep/wake cycles, but at no time is the patient aware of himself or herself or the environment. Neurologically, being awake but unaware is the result of a functioning brain stem and the total loss of cerebral cortical functioning. No voluntary action or behavior of any kind is present. On this group of patients, and my ethical objections to the term PVS, see R. Cohen-Almagor, “Some Observations on Post-Coma Unawareness Patients and on Other Forms of Unconscious Patients: Policy Proposals,” Medicine and Law, Vol. 16, No. 3 (1997): 451–471; “Language and Reality at the End of Life,” Journal of Law, Medicine and Ethics, Vol. 28, No. 3 (Fall 2000): 267–278, and The Right to Die with Dignity: An Argument in Ethics, Medicine, and Law (Piscataway, NJ.: Rutgers University Press, 2001). For further deliberation, see Carl Zimmer, “What if there is something going on in there?,” New York Times (September 28, 2003).
Cf. Jan H. Veldink, John H.J. Wokke, Gerrit van der Wal, J.M.B. Vianney de Jong and Leonard H. van den Berg, “Euthanasia and Physician-assisted Suicide among Patients with Amyotrophic Lateral Sclerosis in the Netherlands,” New Engl J. Med., Vol. 346, No. 21 (May 23, 2002): 1638–1644.
See Herbert Hendin, Seduced by Death (New York: W.W. Norton, 1997), pp. 88–89. Jaap Visser argues in answering this question that in many of these cases, the patients had living wills. In contrast, van Delden claimed that a very small number of these patients had a living will. The 1990 study reports that about onequarter of the patients had previously “indicated something” regarding life termination. Cf. P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, Health Policy Monographs (Amsterdam: Elsevier, 1992), p. 69. Van der Wal, van der Maas et al. report that in about half of these cases, either the decision was discussed with the patient earlier in the illness or the patient had expressed a wish for euthanasia if suffering became unbearable. In the other cases, the patient was deemed incompetent. Cf. Paul J. van der Maas, Gerrit van der Wal, Ilinka Haverkate et al., “Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995,” New Eng. J. of Med., Vol. 335, No. 22 (November 28, 1996), p. 1701. John Griffiths says that this category of patients is highly heterogeneous, including severely defective newborn babies, long-term coma patients, and persons who at some earlier time have expressed a general wish for euthanasia but who in the final stages of the process of dying are no longer capable of expressing their will. John Griffiths, “The Slippery Slope: Are the Dutch Sliding Down or Are They Clambering Up?,” in David C. Thomasma et al. (eds.), Asking to Die, op. cit., p. 98.
For further deliberation, see Gerrit van der Wal, “Unrequested Termination of Life: Is It Permissible?,” Bioethics, Vol. 7, No. 4 (1993): 330–339.
In another forum, van Delden explained that the type of patients involved were cancer patients with brain metastases and, consequently, were rendered incompetent. It would give “a false picture of Holland if one thought that we put away demented people or the weak ones in society. It really is the patient who is dying and already fading away.” Proceedings of Euthanasia and Assisted Suicide in the Netherlands and in Europe, Maastricht, June 10–11, 1994 (Luxembourg: Office for Official Publications of the European Communities, 1996), p. 47.
According to van der Wal, van der Maas et al., life was shortened by 24 hours at most in 33% of these cases, and in a further 58% it was shortened by one week at most. Cf. Paul J. van der Maas, Gerrit van der Wal, Ilinka Haverkate et al., “Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995,” op. cit., p. 1702. The 1990 study reports that in 21% of the cases, life was shortened by one to four weeks; in 7% of the cases, life was shortened by one to six months; and in a small number of cases, life was shortened by more than half a year. These patients were not in the terminal stage of their illness. Cf. P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, op. cit., pp. 66, 183. See also Loes Pijnenborg, Paul J. van der Maas, J.J.M. van Delden and Caspar W.N. Looman, “Life-terminating Acts without Explicit Request of Patient,” Lancet, Vol. 341 (May 8, 1993): 1196–1199.
For farther deliberation, see R. Berghmans, “Advance Directives and Dementia,” in R. Cohen-Almagor (ed.), Medical Ethics at the Dawn of the 21 st Century (New York: New York Academy of Sciences, 2000), Vol. 913 of the Annals: 105–110.
Cf. Luc Deliens, Freddy Mortier, Johan Bilsen, Marc Cosyns, Robert Vander Stichele, Johan Vanoverloop and Koen Ingels, “End-of-life Decisions in Medical Practice in Flanders, Belgium: A Nationwide Survey,” Lancet, Vol. 356 (November 25, 2000): 1806–1811.
Personal communication on August 27, 2000.
Paul J. van der Maas, Gerrit van der Wal, Ilinka Haverkate et al., “Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995,” op. cit., p. 1704, Table 4.
P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, (op. cit.), p. 64.
According to the 1990 report, the patient had given some indication about terminating life in 28% of cases. Interestingly, this consideration is mentioned by physicians in only 17% of cases. Apparently, it was not so much the wish of the patient but the circumstances that made the physician appreciate the patient’s wish. Cf. P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, op. cit., p. 64.
C.I. Dessaur and C.J.C. Rutenfrans wrote that a young doctor expressed objections to the use of pacemakers in people older than seventy-five years and declared that society may not be burdened with the duty of keeping old people alive. Cf. “The Present Day Practice of Euthanasia,” Issues in Law and Medicine, Vol. 3, No. 4 (Spring 1988), at 402.
J.H. Segers, “Elderly Persons on the Subject of Euthanasia,” Issues in Law & Medicine, Vol. 3 (November 4, 1988): 407–424; R. Fenigsen, “A Case Against Dutch Euthanasia,” Hastings Center Report, Vol. 19 (Supp.) (1989): 24–26. Fenigsen argues (p. 24) that spouses have coerced their husbands or wives to undergo “voluntary” euthanasia.
R. Fenigsen, “A Case Against Dutch Euthanasia,” Ibid, 22–30.
Richard Fenigsen, “Physician-Assisted Death in the Netherlands: Impact on Long-Term Care,” Issues in Law & Medicine, Vol. 11, No. 3 (1995): 293–294.
Herbert Hendin, Seduced by Death, op. cit., p. 93.
John Keown, “The Law and Practice of Euthanasia in the Netherlands,” The Law Quarterly Review, Vol. 108 (January 1992), p. 63; idem, “Euthanasia in the Netherlands: Sliding Down the Slippery Slope?,” Notre Dame J. of Law, Ethics and Public Policy, Vol. 9 (1995), p. 412.
Martien T. Muller, Gerrit K. Kimsma and Gerrit van der Wal, “Euthanasia and Assisted Suicide: Facts, Figures and Fancies with Special Regard to Old Age,” Drugs & Aging, Vol. 13, No. 3 (September 1998), p. 185.
Cf. P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, op. cit., pp. 44, 137. In both tables, the first age category is 0-49; the second 50–64. The same age categories are used in Table 3 of the 1995 study. Cf. Paul J. van der Maas, Gerrit van der Wal, Ilinka Haverkate et al., “Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995,” op. cit., p. 1703.
Martien Tom Muller, Death on Request (Amsterdam, Vrije Universiteit Thesis, 1996), p. 18. See also Table 3 in Paul J. van der Maas, Gerrit van der Wal, Ilinka Haverkate et al., “Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995,” op. cit., p. 1703, and Table 2 in Gerrit van der Wal and P.J. van der Maas, “Empirical Research on Euthanasia and Other Medical End-of-Life Decisions and the Euthanasia Notification Procedure,” in David C. Thomasma et al. (eds.), Asking to Die, op. cit., p. 172.
Dick J. Hessing, John R. Blad and Roel Pieterman, “Practical Reasons and Reasonable Practice: The Case of Euthanasia in the Netherlands,” J. of Social Issues, Vol. 52, No. 2 (1996), p. 155.
Bert Keizer, Dancing with Mister D (London: Black Swan, 1997), p. 258. Keizer also testifies that only a small percentage of his patients really want to die (emphasis mine, RCA). Ibid., p. 268.
Bert Keizer, Dancing with Mister D, pp. 301–302. See also pp. 306, 312.
P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, op. cit., p. 134.
According to the 1990 study, GPs consulted with patients’ relatives in 97% of the cases, and specialists consulted with relatives in 85% of cases. Cf. P.J. van der Maas, J.J.M. van Delden, and L. Pijnenborg, Euthanasia and other Medical Decisions Concerning the End of Life, op. cit., p. 47. According to the 1995 death-certificate study, “relatives or others” were consulted only in 70% of euthanasia and assisted-suicide cases. Paul J. van der Maas, Gerrit van der Wal, Ilinka Haverkate et al., “Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995,” op. cit., p. 1704. Interestingly, another study shows that patient’s relatives were “contacted” in more than 90% of the euthanasia and assisted-suicide cases. Gerrit van der Wal, Paul J. van der Maas, Jacqueline M. Bosma et al., “Evaluation of the Notification Procedure for Physician-Assisted Death in the Netherlands,” New Eng. J. of Med., Vol. 335, No. 22 (November 28, 1996), p. 1709.
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(2005). Worrisome Data. In: Euthanasia in the Netherlands. International Library of Ethics, Law, and the New Medicine, vol 20. Springer, Dordrecht. https://doi.org/10.1007/978-1-4020-2251-7_7
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