Some observations on post-coma unawareness patients and on other forms of unconscious patients: Policy proposals

Medicine and Law

Volumn 16, Issue 3, 1997, Pages 451-471

  Cohen Almagor, Raphael ^a,b  

^a UNIVERSITY OF HAIFA   (Israel)

^b The Van Leer Jerusalem Institute   (Israel)

Author keywords

[No Author keywords available]

Indexed keywords

ARTIFICIAL VENTILATION; AWARENESS; BRAIN DEATH; CLINICAL PROTOCOL; COGNITION; COMA; HEALTH CARE POLICY; HUMAN; HUMAN RIGHTS; ISRAEL; MEDICAL ETHICS; MEDICOLEGAL ASPECT; NEUROTRAUMATOLOGY; PATIENT RIGHT; PERSISTENT VEGETATIVE STATE; POST COMA UNAWARENESS; QUALITY OF LIFE; RESOURCE ALLOCATION; REVIEW;

EID: 0031544935     PISSN: 07231393     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (46)

1. Ronald E. Cranford and David Randolph Smith, "Consciousness: The Most Critical Moral (Constitutional) Standard for Human Personhood", XIII American J. of Law and Medicine, Nos. 2-3 (1987), at 233-234.
2. prefer to speak of the patient's loved ones rather than of the patient's family. For further discussion see Cohen-Almagor, "The Patients' Right to Die in Dignity and the Role of their Beloved People", 4 Annual Review of Low and Ethics (1996), 213-232.
3. Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", 263 JAMA, No. 3 (January 19, 1990), 426-430, at 428.
4. Cf. statements of Safar and Meisel in "Philosophical, Ethical and Legal Aspects of Resuscitation Medicine. III. Discussion", 16 Critical Care Medicine, No. 10 (1988), 1069-1076, at 1069, 1074.
5. Cf. The Hastings Center, Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington, Ind.: Indiana UP, 1987), 112; Task Force on Ethics of the Society of Critical Care Medicine, "Consensus Report on the Ethics of Foregoing Life-Sustaining Treatments in the Critically III", 18 Critical Care Medicine (1990), 1435-1439; Robert D. Truog, Allan S. Brett, and Joel Frader, "The Problem with Futility", 326 New England J. of Medicine, No. 23 (1992), 1560-1564, at 1563. For critical review of this approach see S.J. Youngner, "Futility in Context", 264 JAMA, No. 10 (1990), 1295-1296.
6. Cf. The Hastings Center, Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington, Ind.: Indiana UP, 1987), 112; Task Force on Ethics of the Society of Critical Care Medicine, "Consensus Report on the Ethics of Foregoing Life-Sustaining Treatments in the Critically III", 18 Critical Care Medicine (1990), 1435-1439; Robert D. Truog, Allan S. Brett, and Joel Frader, "The Problem with Futility", 326 New England J. of Medicine, No. 23 (1992), 1560-1564, at 1563. For critical review of this approach see S.J. Youngner, "Futility in Context", 264 JAMA, No. 10 (1990), 1295-1296.
7. Cf. The Hastings Center, Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington, Ind.: Indiana UP, 1987), 112; Task Force on Ethics of the Society of Critical Care Medicine, "Consensus Report on the Ethics of Foregoing Life-Sustaining Treatments in the Critically III", 18 Critical Care Medicine (1990), 1435-1439; Robert D. Truog, Allan S. Brett, and Joel Frader, "The Problem with Futility", 326 New England J. of Medicine, No. 23 (1992), 1560-1564, at 1563. For critical review of this approach see S.J. Youngner, "Futility in Context", 264 JAMA, No. 10 (1990), 1295-1296.
8. Cf. The Hastings Center, Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington, Ind.: Indiana UP, 1987), 112; Task Force on Ethics of the Society of Critical Care Medicine, "Consensus Report on the Ethics of Foregoing Life-Sustaining Treatments in the Critically III", 18 Critical Care Medicine (1990), 1435-1439; Robert D. Truog, Allan S. Brett, and Joel Frader, "The Problem with Futility", 326 New England J. of Medicine, No. 23 (1992), 1560-1564, at 1563. For critical review of this approach see S.J. Youngner, "Futility in Context", 264 JAMA, No. 10 (1990), 1295-1296.
9. J.C. Hackler and F.C. Hiller, "Family Consent to Orders Not to Resuscitate, Reconsidering Hospital Policy", 264 JAMA (1990), 1281-1283; Gaetano F. Molinari, "Persistent Vegetative State, Do Not Resuscitate... and Still More Words Doctors Use"; 102 J. of Neurological Sciences (1991), 125-127. T. Tomlinson and H. Brody, "Futility and the Ethics of Resuscitation", 261 JAMA (1990), 1276-1280.
10. J.C. Hackler and F.C. Hiller, "Family Consent to Orders Not to Resuscitate, Reconsidering Hospital Policy", 264 JAMA (1990), 1281-1283; Gaetano F. Molinari, "Persistent Vegetative State, Do Not Resuscitate... and Still More Words Doctors Use"; 102 J. of Neurological Sciences (1991), 125-127. T. Tomlinson and H. Brody, "Futility and the Ethics of Resuscitation", 261 JAMA (1990), 1276-1280.
11. J.C. Hackler and F.C. Hiller, "Family Consent to Orders Not to Resuscitate, Reconsidering Hospital Policy", 264 JAMA (1990), 1281-1283; Gaetano F. Molinari, "Persistent Vegetative State, Do Not Resuscitate... and Still More Words Doctors Use"; 102 J. of Neurological Sciences (1991), 125-127. T. Tomlinson and H. Brody, "Futility and the Ethics of Resuscitation", 261 JAMA (1990), 1276-1280.
12. Another problematic issue is concerned with the notion of futility. Schneiderman and colleagues argued that a treatment should be considered futile when 100 consecutive patients do not respond to it. Truog and his colleagues wonder how similar must the patients be? They press the question of whether in assessing the efficacy of mechanical ventilation to treat pneumonia it is sufficient to simply recall the 100 most recent patients who received artificial ventilation for pneumonia, or must this group be stratified according to age, etiologic organism, or coexisting illness. Clearly, they summarize, many of these factors will make an important difference. Cf. L.J. Schneiderman, N.S. Jecker, and A.R. Jonsen, "Medical Futility: Its Meaning and Ethical Implications", 112 Ann. Intern. Medicine (1990), 949-954; Robert D. Truog et. al., "The Problem with Futility", supra n. 6. at 1561.
13. Another problematic issue is concerned with the notion of futility. Schneiderman and colleagues argued that a treatment should be considered futile when 100 consecutive patients do not respond to it. Truog and his colleagues wonder how similar must the patients be? They press the question of whether in assessing the efficacy of mechanical ventilation to treat pneumonia it is sufficient to simply recall the 100 most recent patients who received artificial ventilation for pneumonia, or must this group be stratified according to age, etiologic organism, or coexisting illness. Clearly, they summarize, many of these factors will make an important difference. Cf. L.J. Schneiderman, N.S. Jecker, and A.R. Jonsen, "Medical Futility: Its Meaning and Ethical Implications", 112 Ann. Intern. Medicine (1990), 949-954; Robert D. Truog et. al., "The Problem with Futility", supra n. 6. at 1561.
14. See testimonies of doctors in Israel and Canada in Cohen-Almagor, "Reflections on the Intriguing Issue of the Right to Die in Dignity", 29 Israel Law Rev. No. 4 (1995), 677-701.
15. Charles I. Sprung and Leonid A. Eidelman, "Judicial Intervention in Medical Decision-making: A Failure of the Medical System?", 24 Critical Care Medicine, No. 5 (1996), 730-732, at 730. Sprung et al note that one study showed that outpatients refused life-sustaining treatments in the case of persistent vegetative state in 85% of their responses. I assume that most of them are not aware of the possibility, meager as it is, of returning to some form of life.
16. Ronald E. Cranford and David Randolph Smith, "Consciousness: The Most Critical Moral (Constitutional) Standard for Human Personhood", supra n. 2. at 242.
17. "Position of the American Academy of Neurology on Certain Aspects of the Care and Management of the Persistent Vegetative State Patient", 39 Neurology (1989), 125-126.
18. "Persistent Vegetative State: Report of the American Neurological Association Committee on Ethical Affairs", 33 Annals of Neurology, No. 4 (April 1993), 386-390.
19. Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. at 427.
20. Zeev Groswasser, and Leon Sazbon, "Outcome in 134 Patients with Prolonged Posttraumatic Unawareness", 72 Journal of Neurosurg (1990), 81-84, at 81.
21. For further discussion see Gaetano F. Molinari, "Brain Death, Irreversible Coma, and Words Doctors Use", 32 Neurology, No. 4 (1982), 400-402, and Bryan Young, Warren Blume and Abbyann Lynch, "Brain Death and the Persistent Vegetative State: Similarities and Contrasts", 16 The Canadian J. of Neurological Sciences, No. 4 (November 1989), 388-393.
22. For further discussion see Gaetano F. Molinari, "Brain Death, Irreversible Coma, and Words Doctors Use", 32 Neurology, No. 4 (1982), 400-402, and Bryan Young, Warren Blume and Abbyann Lynch, "Brain Death and the Persistent Vegetative State: Similarities and Contrasts", 16 The Canadian J. of Neurological Sciences, No. 4 (November 1989), 388-393.
23. M. Keatings, "The Biology of the Persistent Vegetative State, Legal and Ethical Implications for Transplantation: Viewpoints from Nursing", 22 Transplantation Proceedings, No. 3 (1990), 997-999, at 998.
24. See S.J. Youngner, C.S. Landefeld, C.J. Coulton, B.W. Juknialis and M. Leary, "'Brain Death' and Organ Retrieval: A Cross-sectional Survey of Knowledge and Concepts Among Health Professionals", 261 JAMA, No. 15 (1989), 2205-2210. For further discussion see D. Wikler and A.J. Weisbard, "Appropriate Confusion over 'Brain Death'", 261 JAMA, No. 15 (1989), 2246; and Gaetano F. Molinari, "Persistent Vegetative State, Do Not Resuscitate... and Still More Words Doctors Use", 102 J. of the Neurological Sciences (1991), 125-127.
25. See S.J. Youngner, C.S. Landefeld, C.J. Coulton, B.W. Juknialis and M. Leary, "'Brain Death' and Organ Retrieval: A Cross-sectional Survey of Knowledge and Concepts Among Health Professionals", 261 JAMA, No. 15 (1989), 2205-2210. For further discussion see D. Wikler and A.J. Weisbard, "Appropriate Confusion over 'Brain Death'", 261 JAMA, No. 15 (1989), 2246; and Gaetano F. Molinari, "Persistent Vegetative State, Do Not Resuscitate... and Still More Words Doctors Use", 102 J. of the Neurological Sciences (1991), 125-127.
26. See S.J. Youngner, C.S. Landefeld, C.J. Coulton, B.W. Juknialis and M. Leary, "'Brain Death' and Organ Retrieval: A Cross-sectional Survey of Knowledge and Concepts Among Health Professionals", 261 JAMA, No. 15 (1989), 2205-2210. For further discussion see D. Wikler and A.J. Weisbard, "Appropriate Confusion over 'Brain Death'", 261 JAMA, No. 15 (1989), 2246; and Gaetano F. Molinari, "Persistent Vegetative State, Do Not Resuscitate... and Still More Words Doctors Use", 102 J. of the Neurological Sciences (1991), 125-127.
27. "Position of the American Academy of Neurology on Certain Aspects of the Care and Management of the Persistent Vegetative State Patient", supra n. 12. at 125.
28. Ronald E. Cranford and David Randolph Smith, "Consciousness: The Most Critical Moral (Constitutional) Standard for Human Personhood", supra n. 2. at 239.
29. Discussions with Professor Tweeddale, 1 September 1995.
30. Joseph S. Alpert, "Persistent Vegetative State", 151 Arch. Intern. Med. (May 1991), 855-856.
31. Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. 426-430.
32. For further discussion see Cohen-Almagor, "Autonomy, Life as an Intrinsic Value, and Death with Dignity", 1 Science and Engineering Ethics, No. 3 (1995), 261-272.
33. Higashi and his colleagues reported a series of 110 patients who were in PVS (PCU) for over 3 months. By the end of the first year, 41% had died and 8.2% had recovered consciousness. Cf K. Higashi et al, "Epidemiological Studies on Patients with a Persistent Vegetative State", 40 J. Neurol Neurosurg Psychiatry (1977), 876-885. See also K. Higashi et al., "Five-Year Follow Up of Patients with Persistent Vegetative State", 44 J. Neurol Neurosurg Psychiatry (1981), 552-554; W. Arts, H.R. van Dongen, J. van Hof-van Duin, and E. Lammens, "Unexpected Improvement after Prolonged Posttraumatic Vegetative State", 48 J. Neurol Neurosurg Psychiatry (1985), 1300-1303; Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. 427-428. See also B. Steinbock, "Recovery from Persistent Vegetative State?: The Case of Carrie Coons", 19 Hastings Center Report, No. 4 (1989), 14.
34. Higashi and his colleagues reported a series of 110 patients who were in PVS (PCU) for over 3 months. By the end of the first year, 41% had died and 8.2% had recovered consciousness. Cf K. Higashi et al, "Epidemiological Studies on Patients with a Persistent Vegetative State", 40 J. Neurol Neurosurg Psychiatry (1977), 876-885. See also K. Higashi et al., "Five-Year Follow Up of Patients with Persistent Vegetative State", 44 J. Neurol Neurosurg Psychiatry (1981), 552-554; W. Arts, H.R. van Dongen, J. van Hof-van Duin, and E. Lammens, "Unexpected Improvement after Prolonged Posttraumatic Vegetative State", 48 J. Neurol Neurosurg Psychiatry (1985), 1300-1303; Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. 427-428. See also B. Steinbock, "Recovery from Persistent Vegetative State?: The Case of Carrie Coons", 19 Hastings Center Report, No. 4 (1989), 14.
35. Higashi and his colleagues reported a series of 110 patients who were in PVS (PCU) for over 3 months. By the end of the first year, 41% had died and 8.2% had recovered consciousness. Cf K. Higashi et al, "Epidemiological Studies on Patients with a Persistent Vegetative State", 40 J. Neurol Neurosurg Psychiatry (1977), 876-885. See also K. Higashi et al., "Five-Year Follow Up of Patients with Persistent Vegetative State", 44 J. Neurol Neurosurg Psychiatry (1981), 552-554; W. Arts, H.R. van Dongen, J. van Hof-van Duin, and E. Lammens, "Unexpected Improvement after Prolonged Posttraumatic Vegetative State", 48 J. Neurol Neurosurg Psychiatry (1985), 1300-1303; Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. 427-428. See also B. Steinbock, "Recovery from Persistent Vegetative State?: The Case of Carrie Coons", 19 Hastings Center Report, No. 4 (1989), 14.
36. Higashi and his colleagues reported a series of 110 patients who were in PVS (PCU) for over 3 months. By the end of the first year, 41% had died and 8.2% had recovered consciousness. Cf K. Higashi et al, "Epidemiological Studies on Patients with a Persistent Vegetative State", 40 J. Neurol Neurosurg Psychiatry (1977), 876-885. See also K. Higashi et al., "Five-Year Follow Up of Patients with Persistent Vegetative State", 44 J. Neurol Neurosurg Psychiatry (1981), 552-554; W. Arts, H.R. van Dongen, J. van Hof-van Duin, and E. Lammens, "Unexpected Improvement after Prolonged Posttraumatic Vegetative State", 48 J. Neurol Neurosurg Psychiatry (1985), 1300-1303; Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. 427-428. See also B. Steinbock, "Recovery from Persistent Vegetative State?: The Case of Carrie Coons", 19 Hastings Center Report, No. 4 (1989), 14.
37. Higashi and his colleagues reported a series of 110 patients who were in PVS (PCU) for over 3 months. By the end of the first year, 41% had died and 8.2% had recovered consciousness. Cf K. Higashi et al, "Epidemiological Studies on Patients with a Persistent Vegetative State", 40 J. Neurol Neurosurg Psychiatry (1977), 876-885. See also K. Higashi et al., "Five-Year Follow Up of Patients with Persistent Vegetative State", 44 J. Neurol Neurosurg Psychiatry (1981), 552-554; W. Arts, H.R. van Dongen, J. van Hof-van Duin, and E. Lammens, "Unexpected Improvement after Prolonged Posttraumatic Vegetative State", 48 J. Neurol Neurosurg Psychiatry (1985), 1300-1303; Council on Scientific Affairs and Council on Ethical and Judicial Affairs, "Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support", supra n. 4. 427-428. See also B. Steinbock, "Recovery from Persistent Vegetative State?: The Case of Carrie Coons", 19 Hastings Center Report, No. 4 (1989), 14.
38. As mentioned, I use the term 'family' in a broad manner, referring not only to the blood relatives but also to the patient's beloved people and those who are concerned with his or her condition.
39. Discussions with Dr. Sazbon, 19 October 1993, and 7 November 1993.
40. Zeev Groswasser, and Leon Sazbon, "Outcome in 134 Patients with Prolonged Post-traumatic Unawareness", 72 Journal of Neurosurg (1990), 81-84.
41. Leon Sazbon, Fanny Zagreba, Jacob Ronen, Pablo Solzi, and Hanan Costeff, "Course and Outcome of Patients in Vegetative State of Nontraumatic Aetiology", 56 Journal of Neurology, Neurosurgery, and Psychiatry (1993), 407-409.
42. Leon Sazbon et al., "Course and Outcome of Patients in Vegetative State of Nontraumatic Aetiology", supra n. 29, 407-409.
43. The hospital was established during the 1960s through the generosity of Paula Bart, whose rationale was to take care of those who reached the final stage of their lives, whose families did not or could not assist them, enabling them to die in dignity. Lichtenstaedter is run by a public fellowship. Expenses are usually paid either by the different health insurance companies or by the Ministry of Health, together with the help of the families. On average, sustaining a patient at Lichtenstaedter costs some NIS 300 ($100) per day. Most families have to pay NIS 63 per day (some $20). The Lichtenstaedter fellowship mobilizes funds from private sources for the purpose of development.
44. I am well aware of the criticism that might be voiced, saying that in a reality of limited resources it is impossible to provide expensive medical treatment that has little probability of saving or restoring life. A detailed discussion about the economic considerations involved in this issue is beyond the scope of this essay. I deal with these considerations in my upcoming article "Democracy and Medicine: The Responsibility of the State to Its Patients". Here I only say that if we will provide adequate rehabilitative care to PCU patients from the start maybe we could improve the prognosis of these patients. I also say that my argument is ethical rather than utilitarian. The state may set priorities but it should not totally abandon certain patients. Every patient counts and we should do our best to save every single life. This principle is acknowledged in the medical tradition, in the liberal tradition as well as in the Jewish and Christian traditions.
45. Cf. Abraham Ohry, "The Locked-in Syndrome and Related States", 28 Paraplegia (1990), 73-75.
46. Clare Dyer, "'Vegetative' Patient Wakes up after Seven Years", The Guardian (March 16, 1996).