Respect for autonomy, advance directives, and minimally conscious state

Bioethics

Volumn 25, Issue 9, 2011, Pages 505-515

  Varelius, Jukka ^a  

^a UNIVERSITY OF TURKU   (Finland)

Author keywords

Advance directive; Autonomy; Disorder of consciousness; Minimally conscious state; Patient

Indexed keywords

ARTICLE; DECISION MAKING; HUMAN; LIVING WILL; MEDICAL ETHICS; PERSISTENT VEGETATIVE STATE; PERSONAL AUTONOMY; PSYCHOLOGICAL ASPECT;

ADVANCE DIRECTIVE ADHERENCE; DECISION MAKING; ETHICS, MEDICAL; HUMANS; PERSISTENT VEGETATIVE STATE; PERSONAL AUTONOMY;

EID: 80054031137     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/j.1467-8519.2009.01799.x     Document Type: Article

References (65)

1. A description of a similar case of a person in minimally conscious state is found in E. Phipps & J. Whyte. Medical Decision-Making with Persons Who Are Minimally Conscious: A Commentary. Am J Phys Med Rehabil Catherine's case is however not purported to be like that one in all relevant respects.1999; 78: 77-82
2. A. Buchanan. Advance Directives and the Personal Identity Problem. Philos Public Aff 1988; 17: 277-302
3. C.B. Cohen. Philosophical Challenges to the Use of Advance Directives. In Handbook of Bioethics. G. Khushf, ed. Dordrecht: Kluwer Academic Publishers: 291-3142004
4. J.K. Davis. How to Justify Enforcing a Ulysses Contract When Ulysses is Competent to Refuse. Kennedy Inst Ethics J 2008; 18: 87-106
5. J.K. Davis. 2007. Precedent Autonomy, Advance Directives, and End-Of-Life Care. In The Oxford Handbook of Bioethics. B. Steinbock, ed. New York, NY: Oxford University Press: 349-374
6. R. Dresser. Dworkin On Dementia: Elegant Theory, Questionable Policy. Hastings Cent Rep 1995; 25: 32-38
7. R. Dworkin. 1993. Life's Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom. New York, NY: Alfred A. Knopf; R. Dworkin. 2004. Replies: Seana Valentine Shiffrin. In Dworkin and His Critics. J. Burley, ed. Malden, MA: Blackwell Publishing: 366-370
8. J. Savulescu & D. Dickenson. The Time Frame of Preferences, Dispositions, and the Validity of Advance Directives for the Mentally Ill. Philos Psychiatr Psychol 1998; 5: 225-246
9. S.V. Shiffrin. 2004. Autonomy, Beneficence, and the Permanently Demented. In Dworkin and His Critics. J. Burley, ed. Malden, MA: Blackwell Publishing: 195-217
10. R. Spellecy. Reviving Ulysses Contracts. Kennedy Inst Ethics J 2003; 13: 373-392; G. Widdershoven & R. Berghmans. Advance Directives in Psychiatric Care: A Narrative Approach. J Med Ethics 2001; 27: 92-97
11. Sometimes dementia proceeds into minimally conscious state, but the mental abilities of the dementia patients who fall into minimally conscious state can be relevantly different from those of Catherine. Sometimes it is also rather unclear precisely what kind of mental abilities the persons discussed as dementia patients are taken to possess
12. In terms of psychiatric patients, the problems discussed in those debates usually relate to things like mood and lack of contact with reality rather than on the patients' level of consciousness and its diminishment and/or fluctuation, and it is unclear to what extent these two foci are relevantly similar to each other.
13. J.K. Davis. 2007. Precedent Autonomy, Advance Directives, and End-Of-Life Care. In The Oxford Handbook of Bioethics. B. Steinbock, ed. New York, NY: Oxford University Press: 349-374.
14. G. Dworkin. 1988. The Theory and Practice of Autonomy. New York, NY: Cambridge University Press: 5-6
15. B. Jennings. 2007. Autonomy. In The Oxford Handbook of Bioethics. B. Steinbock, ed. New York, NY: Oxford University Press: 72-89.
16. T.L. Beauchamp & J.F. Childress. 2001. Principles of Biomedical Ethics, 5th edn. New York, NY: Oxford University Press: 58.
17. Under a different name, a classic defence of the value of individuals' making autonomous choices is found in J.S. Mill. 1985. On Liberty. Harmondsworth UK: Penguin Books Ltd. Depending on the interpretation, Mill saw that value either as instrumental to wellbeing, constitutive of wellbeing in a wide sense, or intrinsic. For more recent arguments in support of the significance of autonomy see L. Haworth. 1986. Autonomy: An Essay in Philosophical Psychology and Ethics. New Haven, NJ: Yale University Press; J. Harris. Consent and End of Life Decisions. J Med Ethics 20032910-15
18. R. Kraut. 2007. What is Good and Why: The Ethics of Wellbeing. Cambridge MA: Harvard University Press: 196
19. Ocourse, allowing the same possibility for others entails limits on how a person may conduct her life in matters regarding others.
20. Not all philosophers accept that advance directives promote, or are compatible with, autonomy. It has been argued that that pre-commitment without the possibility of re-evaluating it later is comparable to voluntary slavery (T. May. Slavery, Commitment, and Choice: Do Advance Directives Reflect Autonomy? Cambridge Quarterly of Healthcare Ethics However, when the persons who issued them have become incapable of autonomously deciding for themselves, it is unclear how adhering to their advance directives could violate their autonomy. It can also be asked, is it necessarily better from the point of view of one's autonomy that others decide on one's behalf after one has lost capacity for autonomous decision-making? Allowing others to decide might well become nearer to slavery than adhering to one's advance directive.1999; 8: 358-363
21. This includes assuming that when Catherine issued her advance directive she was sufficiently informed about the characteristics of living an incapacitated life to qualify as autonomous with respect to the matter. Wrigley argues that there is a principled problem with advance directives as, according to him, autonomy requires a fully informed choice, but no autonomous individual can be fully aware of what it is like to live in the conditions in which the advance directive is meant to apply (A. Wrigley. Personal Identity, Autonomy and Advance Statements. J Appl Philos A central difficulty with this argument is that requiring that making a self-governing choice presupposes possessing a particular objectively defined amount of information is incompatible with understanding autonomy in the procedural terms referred to here. For the reasons explained below, in such procedural understanding of self-government, how much information a person must have so as to qualify as autonomous with respect to a decision is ultimately up to his own judgment.200724381-396
22. J.T. Giacino. & al. The Minimally Conscious State: Definition and Diagnostic C riteria. Neurology 2002; 58: 349-353.
23. J.J. Fins. Rethinking Disorders of Consciousness: New Research and Its Implications. Hastings Cent Rep 200535: 22-24
24. Lessons from the Injured Brain: A Bioethicist in the Vineyards of Neuroscience. Camb Q Healthc Ethics 2009187-13
25. R.E. Cranford. What is a Minimally Conscious State? West J Med 2002 176: 129-130.
26. J.J. Fins. Lessons from the Injured Brain: A Bioethicist in the Vineyards of Neuroscience. Camb Q Healthc Ethics 2009187-1310.
27. However, related to the fact that the consciousness of all MCS patients is not minimal, it has also been suggested that the expression 'minimally conscious state' might be a misleading name for this diagnostic category (see J.L. Bernat. Chronic Disorders of Consciousness. Lancet 20063671181-1192
28. The shortly recovering patients are or shortly become like normal agents in moral terms too. The cases of coma patients and patients in vegetative state have already been discussed in medical ethics literature and it appears that being in those states is not as urgent to the patients themselves as being in MCS can be for patients like Catherine (see also J.J. Fins. Rethinking Disorders of Consciousness: New Research and Its Implications. Hastings Cent Rep20053522-24
29. W.J. Winslade. Research on Minimally Conscious Patients: Innovation or Exploitation. J Head Trauma Rehabil 200419178-179
30. When the level of awareness of a MCS patient is significantly lower than that of Catherine, and/or he is conscious much more intermittently, in moral and prudential terms, his case can be relevantly similar to that of a vegetative patient.
31. For example, Dresser advocates this kind of stand in connection with the advance directives of some dementia patients
32. M. Harvey. Advance Directives and the Severely Demented. J Med Philos 20063147-64.
33. MacLean presents several arguments valuable from the viewpoint of assessing those criticisms (A. MacLean. Advance Directives, Future Selves and Decision-Making. Med Law Rev 200614291-320
34. E.R. Kuppelman. Dementia and Dignity: Towards a New Method of Surrogate Decision Making. J Med Philos 20022765-85
35. There is also empirical evidence to the effect that a person recovering from MCS can remember the life she had when she was normally aware and worry about the consequences of having been incapacitated.
36. As it is rather implausible that it would cease to exist when she succumbs to MCS and then re-emerge again when she recovers from it, it is credible that an individual's self can survive her falling to MCS. However, as no sufficient empirical data on the issue is available, it cannot be determined whether the patient's self survives in all cases of MCS. Accordingly, my argument does not presuppose that.
37. These approaches, however, appear problematic in themselves (see, D.W. Brock. Commentary on 'The Time Frame of Preferences, Dispositions, and the Validity of Advance Directives for the Mentally Ill.' Philos Psychiatr Psychol and with respect to Catherine's case, as, for example, there may not be a coherent sense of dispositional preference in which it could be said that Catherine still has the preference to avoid living an incapacitated life.19985249-253
38. A.E. Buchanan & D.W. Brock. 1989. Deciding for Others: The Ethics of Surrogate Decision-Making. Cambridge, UK: Cambridge University Press.
39. M.K. Kuzcewski. Whose Will Is It Anyway? A Discussion of Advance Directives, Personal Identity, and Consciousness in Medical Ethics. Bioethics 1994827-48.
40. Adopting a communitarian conception of the self is arguably not incompatible with accepting the procedural conception of autonomy described above (cf., e.g., J. Christman. Relational Autonomy, Liberal Individualism, and the Social Constitution of Selves. Philos Stud 2004117143-164
41. E. Olsen. 1997The Human Animal. Oxford: Oxford University Press.
42. D. Shoemaker. The Insignificance of Personal Identity for Bioethics. Bioethics, forthcoming; and D. DeGrazia. Human Identity and Bioethics. New York, NY: Cambridge University Press.2005
43. He maintains that this respect cannot ground a plausible argument for advance directives, because wills and trusts are not, in morally relevant respects, similar to advance directives. It is, however, not necessary for a defence of advance directives in terms of our respect for deceased persons to refer to any legal notions. Furthermore, as law is not the criterion of moral acceptability, even if legal rules differ from what is considered morally justified in connection with advance directives that need not be a problem for the view that advance directives have moral significance.
44. J. Feinberg. The Moral Limits of the Criminal Law 3: Harm to Self. Oxford: Oxford University Press.
45. W. Glannon. Neurostimulation and the Minimally Conscious State. Bioethics 20082237-345
46. That, of course, is highly questionable.
47. For an argument to the effect that such ability to care can suffice for possessing (a morally considerable degree of) autonomy see A. Jaworska. Ethical Dilemmas in Neurodegenerative Disease: Respecting Patients at the Twilight of Agency. In Neuroethics: Defining the Issues In Theory, Practice, and Policy, J. Illes, ed. Oxford: Oxford University Press87-101
48. A. Jaworska. Caring and Full Moral Standing. Ethics 2007117460-497
49. A. Jaworska. Caring and Internality. Philos Phenomenol Res 200754529-568
50. Although it can be taken to support the main argument of this paper, I now put this way of arguing to the effect that Catherine's current wishes can be autonomous aside and pursue another line of argument to the same conclusion.
51. Determining how much difference deciding in one way rather than another would make does not presuppose taking a stand on how significant the given consequences of a person's decision would be. Detecting the (probable) causal consequences is normally sufficient and judgments pertaining to their value can be left to the decision-maker. I return to this point below.
52. T.L. Beauchamp. Who Deserves Autonomy and Whose Autonomy Deserves Respect? In Personal Autonomy: New Essays in Personal Autonomy and its Role in Contemporary Moral Philosophy, J.S. Taylor. ed. Cambridge, UK: Cambridge University Press: 310-329: and T. Van Willigenburg. Protecting Autonomy as Authenticity Using Ulysses Contracts. J Med Philos 200530395-409.
53. J.M. Fischer. The Cards That Are Dealt You. J Ethics 200610107-129
54. R. Noggle. 2005. Autonomy and the Paradox of Self-Creation: Infinite Regresses, Finite Selves, and the Limits of Authenticity. In Personal Autonomy: New Essays in Personal Autonomy and Its Role in Contemporary Moral Philosophy, J.S. Taylor. ed. Cambridge, UK: Cambridge University Press87-108.
55. H.E. Baber. Adaptive Preference. Social Theory and Practice 200733105-126
56. W. Bruckner. In Defense of Adaptive Preferences. Philosophical Studies 2009142307-324.
57. Someone might maintain that though Catherine's wish to continue living is autonomous, she is currently sufficiently childlike for the above described parent-child analogy to be applicable in her case. Accordingly, this line of thinking could continue, we ought to take it that the former Catherine who issued the advance directive has the right to decide here.
58. It seems reasonable to assume that the sense of wellbeing relevant to Catherine's case, as it is interpreted in terms of the parent-child analogy, refers to what is good for Catherine as she is in her childlike state. And it is plausible that allowing her to continue enjoying the pleasures that interacting with the people around her and watching television bring her is more conducive to the wellbeing of Catherine considered as a child than is letting her die.
59. J.K. Davis. How to Justify Enforcing a Ulysses Contract When Ulysses is Competent to Refuse. Kennedy Inst Ethics J 20081887-106
60. More precisely, Davis maintains that actively to respect an agent's autonomy when she competently refuses to obey her Ulysses contract we should act so that the circumstances of her life are consistent with her concurrent wishes over the longest period of time, qualified by reference to the intensity of the wishes and the severity of the conflict (Ibid.). The reference to intensity of the wishes and the severity of their conflict appears problematic. As intense desires can be heteronomous, the intensity of a desire can be quite irrelevant from the point of view of autonomy. If the question is about giving more weight to more autonomous wishes, we face the problems just discussed above.
61. Why focus solely on former wishes when also concentrating on concurrent wishes has intuitive plausibility and accords with a more or less widely accepted conception of self-government, etc.
62. Collective Moral Imagination: Making Decisions for Persons with Dementia. J Med Phil200429435-450
63. I thus now assume that continuing a person's story can consist of allowing his life to end.
64. Someone might maintain that those values ought to be given priority because they are the autonomous values that have structured most of Catherine's adult life. However, as demonstrated by the above case of the catholic turned atheist, accepting that how long a person has had the values ought to be conclusive here has rather confusing implications. As Catherine's current wish to continue living is autonomous, even adding to the equation the fact that she issued the advance directive does not show that respect for her autonomy allows ignoring the desire she now has.
65. In terms of hard paternalistic grounds, let us consider two possibilities (There may be more, but the two suffice for making my point). First, it could be maintained that the good life for a person consists of fulfilling (the) wishes she has when she is normally autonomous. (For the sake of argument, I now ignore the problems of this conception of the nature of prudential value.) Therefore, Catherine's advance directive ought to be obeyed even though doing that would conflict with her current autonomous wish. Second, it could be argued that continuing to live with the degree of autonomy Catherine currently has is good for her at least partly because that life involves the measure of autonomy and therefore Catherine's current autonomous wish ought to be adhered to even if that were incompatible with respecting her advance directive. However, to be plausible the first stand should explain why the satisfaction of only those autonomous desires Catherine had when she was healthy would be relevant to her wellbeing. The credibility of the second approach, in its turn, presupposes showing that continuing to live with the degree of autonomy now possible for Catherine is the best for her even though it would conflict with what she wished when she was normally autonomous. Unless their proponents are able to meet their respective challenges, adopting either of these two approaches does not amount to more than talking about the problem at hand under the rubric of wellbeing and insisting that only one of the conflicting intuitions it involves is plausible.