Abstract
In my wallet I always keep my membership card of a road service company, my organ donor card, a blood group card, and a ragged piece of paper stating my living will.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Notes
- 1.
All states in the USA have legislation governing advance directives, as do most of the Canadian provinces, a number of Australian states, New Zealand, and a number of European countries, including Denmark, the UK, the Netherlands, Belgium, France, Spain, Austria, Hungary, Serbia, Georgia and recently Germany. The Netherlands is the only country which gives some legal status to positive advance directives.
- 2.
Family doctors have similar attitudes (Vezzoni 2005, ch. 8).
- 3.
It may be that the availability of a negative advance directive doesn’t make much of a difference in this case because nursing home doctors are inclined to act as they request anyway, even without being requested (Teno et al. 1994). But according to van Delden et al. (2011, pp. 151 ff), Dutch doctors tend to take the directive into account in identifying the relevant values of the patient, and hence his ‘best interests’, even if most of them don’t know that it is (pro tanto) legally binding and, even if they know, don’t recognize its authority.
- 4.
Only recently for the first time an appeal to the living will has been made in such a case, because the consultant and the review committee considered the patient incompetent at the time of his actual request. In all other cases the actual request has been assessed to be well-considered. Only 20% of Dutch doctors know that the law does not require this to be the case (Van Delden et al. 2011, p. 165).
- 5.
Berghmans (1998) calls epistemic failure inevitable.
- 6.
- 7.
When Davis (1999) advocates pre-emptive suicide for people who expect their advance directive to be disregarded, Gedge (2004) even interprets this as an act of aggression of the former against the later self, as do Hertogh et al. (2008), in their reply to critics. That of course presupposes that the later self has the will to live or at least an overriding interest in survival. Davis’ worry, however, concerns people who are prepared to overrule her authority because they have such beliefs as regards later selves.
- 8.
Such views do not take into account the fundamental difference between the personal value of life, that is, the value life has for the one living it, and a possible impersonal value (Cf. Sect. 10.7 below).
- 9.
An important predecessor is Rhoden (1990).
- 10.
A third is to argue that the critical interest is only the interest of the former person, which now has been replaced by the interests, critical or only experiential, of the present individual. I consider that argument in the first paragraphs of Sect. 10.6.
- 11.
Perhaps to be identified with scale 7 on the Functional Assessment Staging Scale (Mitchell 2007).
- 12.
On content-independence as the essence of authority see den Hartogh (2002, ch. 7) with references.
- 13.
Buchanan and Brock (1990, ch. 3) and Kuhse (1999), however, suggest that a person may have authority about the fate of his post-person successor, his “living remains”, just like he has authority about what happens to his estate and his mortal remains. But we do not normally consider even radically incompetent people to be at the disposal of others in this way; they have interests of their own and therefore moral status, whether they are persons or non-persons.
- 14.
I will also put aside some pragmatic objections commonly made. The most common objection probably is that advance directives do not enable a doctor to identify a unique decision because they always require interpretation (E.g. Widdershoven and Berghmans 2001; Gastmans and Denier 2010). It is worth observing about such doubts that they invariably only reflect a worry of possibly being too early, never of being too late. Of course I do not dispute that advance directives may be so inadequately formulated that they are of no use at all, see for an interesting example Crippen (2000), and commentary by Truog. However, every law requires interpretation, but only legal realists think that this implies that judicial decisions are not constrained by law. According to research by Rurup et al. (2005) doctors generally are able to recognize the conditions for which the living will has been made. Their claim to the contrary as registered by other researchers may mainly reflect a reluctance to comply with it. Because of this common reluctance, it is essential to give the durable power of attorney to a trusted friend or relative, and extensively discuss future decisions with that person.
- 15.
But cf. Post’s example of Mrs. S who agrees to cohabit with Mr. R falsely believing him to be her husband of 40 years marriage (Post 1995).
- 16.
Apparently also subscribed to by Dworkin (1993, pp. 229–231).
- 17.
McMahan (2002, pp. 496ff) accepts the deprivation account and therefore agrees that the Alzheimer patient has experiential interests in survival. That patient may also, as testified by his living will, still have critical interests in non-survival, but because the psychological continuity between his last and his present self is extremely reduced, on McMahan’s view of prudential concern, these interests should be radically discounted. See footnote 34.
- 18.
It is worth noting that Epicurus himself basically understood the value of a life in a structural way, as a quest for ataraxia. For that reason he could found a school and even leave a will, actions for which Cicero already accused him of inconsistency.
- 19.
As will become clear in Sect. 10.4, I do not wish to make very strong claims as regards these ‘structural elements’, as narrativists sometimes are tempted to do. I certainly do not presuppose “a self that is steadfastly committed to a stable set of identity-defining values and convictions, a self that expresses continuity over time, a self that is separate from all other selves and that essentially decides alone”, as Koppelman (2002) describes the view she opposes. For discussion see also Delaere (2010, ch.2).
- 20.
“…to affirm that severely demented patients retain an interest in experiencing simple pleasures while alive is quite different from saying that these patients retain an interest in being kept alive, so as to experience whatever pleasures are available to them” (Brock 1988, p. 90). Kuhse (1999) makes the same point. But most of the literature simply presupposes that it is a matter of showing compassion to the pleasantly demented to allow her to live, see e.g. Kadish (1992).
- 21.
For example, MacQuarrie (2005, p. 434), lists “annoyance, anger, hurt, shock, sadness, and exasperation” as the common emotional responses of Alzheimer patients to their situation; cf. the list in Kitwood (1997, p. 78). Because these emotions to some extent are adequate responses, they should not simply be considered symptoms to be treated, e.g. by anti-depressants.
- 22.
- 23.
For a more general analysis of denial, including so-called anosognosia, as a coping strategy see MacQuarrie (2005).
- 24.
The analysis is also inconsistent with the view that the suffering of Alzheimer patients is largely the result of ‘malignant social psychology’ (Kitwood 1990). For example, the restrictions on their freedom which Alzheimer patients understandably resent, are often necessary in order to prevent unacceptable risks to others. To the (considerable) extent that this view really is true, moreover, it only highlights the frailty of agency which to that extent is dependent on the good will of others.
- 25.
I do not deny that the beliefs and emotions of an Alzheimer patient may still match reality. But if they do, this will largely be a matter of accident. Sabat gives his professor to some extent a deserved sense of self-respect by including him in his research on the inner life of Alzheimer patients (Sabat 1998). But the professor would have the same feelings if no such research was actually going on.
- 26.
As a result either of the psychological mechanism, described by Hertogh, or simply of the progressive loss of his mental faculties.
- 27.
It is therefore mistaken to think that we do not and cannot know whether a patient in an advanced state of Alzheimer’s still sticks to her request (Dresser 1995; Harvey 2006; Gastmans and De Lepeleire 2010). If the counterfactual question is asked: what would the person have chosen if he had still been able to choose anything, we should observe that the answer is irrelevant, because in that case she would not be in the condition for which her living will has been made.
- 28.
It is interesting that Jaworska (2007) does not analogously claim that the capacity for caring which she ascribes to patients in an advanced stage of Alzheimer amounts to a capacity for autonomy. But she does argue that such cares, as those of small children, should be taken into consideration.
- 29.
- 30.
Maclean (2008) shows that British courts tend to countenance a physician’s rejection of a living will when the physician appeals to the best interests of the patient. On his view this tendency undermines the Mental Capacity Act 2005, because he interprets that law as exclusively aiming at promoting respect for autonomy. Dutch law explicitly permits the doctor to depart from the directive for “well-founded reasons”, but this should not be taken to mean that the doctor can simply act on his own judgement of the patient’s best interests. Perhaps the British law should be interpreted in a similar way, as giving the living will a limited authority.
- 31.
- 32.
My view is that the interests of a past self do not only count for less than the interests of the present self, as Jaworska (2007) proposes. Rather, as such they count for nothing. In Parfit’s famous example of the Russian count the dilemma for the count’s wife is only created by her promise to disregard his present preferences, not by his former preferences as such. Similarly, if we frustrate a child’s present desires in order to protect his future flourishing, we do not solve a conflict of interests between stages of the self in favour of the future self either, because the child already has an interest in his future condition. The concept of ‘interest’ is backwards transitive. I therefore agree with Dworkin (2004, p. 367), when he comments that both Shiffrin and Jaworska do not really accept that the child, the adult and the Alzheimer patient are one and the same person.
- 33.
The denial of the possibility of posthumous interests often rests on the mistaken idea that they would involve some kind of reverse causality, see Sect. 10.3.
- 34.
McMahan (2002) denies this, see footnote 17. But he then goes on to claim that the value of the coherent character of my life as a whole should still override these interests. But if that value is not a personal value to me, as I will be at that time, it can only be either an impersonal value, or a personal value to my irrevocably past self. On neither interpretation this seems sufficient to justify killing someone.
- 35.
Blustein (1999), Koppelman (2002) and Nys (2012, this collection) advocate leaving the decision to arbitrate between the former and the later self to surrogates, significant others who have co-authored and therefore are still able to continue authoring the story of my life. Perhaps that is wise counsel, but, as Nys recognizes, that doesn’t mean that these surrogates have any authority to decide unless I have given it to them.
- 36.
As observed in footnote 3 most Dutch physicians only accept the living will as a source of relevant information, not as a binding document.
- 37.
Authors who believe that recognizing the authority of advance directives amounts to overrating this value (see Sect. 10.2) fail to properly distinguish between the value of and the right to autonomy, cf. Feinberg (1986, ch. 18). The right may protect the value, but it can also be founded on many other considerations (den Hartogh 2000).
- 38.
- 39.
It may be no more than an accident of history that the Dutch euthanasia law is basically founded on this idea of a conflict of duties, but this foundation at least reflects doctors’ feelings, and may well be the appropriate moral framework for evaluating physician-assisted death.
- 40.
- 41.
The question requires a more extensive discussion which until now I have only provided in Dutch (den Hartogh 2009).
- 42.
Cf. footnote 31. He also states that such extreme suffering is not “unbearable” in the sense of the Dutch euthanasia law because this notion requires doctor and patient to agree about the unbearableness (Cf. van Delden 2004). Both van Delden and he note that on this interpretation the law is incoherent, because the request of a living will which the law recognizes as authoritative, can then never be granted. To me that rather seems a decisive reason to reject this interpretation of the law.
References
Arneson, R. 2005. Joel Feinberg and the justification of hard paternalism. Legal Theory 11: 259–284.
Berghmans, R.L.P. 1998. Advance directives for non-therapeutic dementia research: Some ethical and policy considerations. Journal of Medical Ethics 24: 32–37.
Blustein, J. 1999. Choosing for others as continuing a life story: The problem of personal identity revisited. The Journal of Law, Medicine & Ethics 27: 20–31.
Brock, D. 1988. Justice and the severely demented elderly. The Journal of Medicine and Philosophy 13: 73–99.
Buchanan, A., and D. Brock. 1990. Deciding for others: The ethics of surrogate decision making. New York: Cambridge University Press.
Carey, S. 1985. Conceptual change in childhood. Cambridge: MIT Press.
Cassell, E. 1991. The nature of suffering. New York: Oxford University Press.
Cheston, R., and M.P. Bender. 1999. Understanding dementia. London: Jessica Kingsley Publishers.
Crippen, D., M. Levy, R. Truog, L. Whetstine, and J. Luce. 2000. Debate: What constitutes ‘terminality’ and how does it relate to a living will? Critical Care 4: 333–338.
Davis, D.S. 1999. Rational suicide and predictive genetic testing. The Journal of Clinical Ethics 10: 316–323.
Davis, J. 2004. Precedent autonomy and subsequent consent. Ethical Theory and Moral Practice 7: 267–291.
Dawson, A., and A. Wrigley. 2010. A dead proposal: Levi and Green on advance directives. The American Journal of Bioethics 10(4): 23–24.
Delaere, P.J.J. 2010. Practical identity: An essay on personhood, autonomy, and pathology. Dissertation, Erasmus University, Rotterdam.
Den Hartogh, G.A. 2000. Introduction. In The good life as a public good, ed. G.A. den Hartogh, 1–28. Dordrecht: Kluwer.
Den Hartogh, G.A. 2002. Mutual expectations: A conventionalist theory of law. The Hague: Kluwer.
Den Hartogh, G.A. 2009. Gij zult niet doodslaan. Algemeen Nederlands Tijdschrift voor Wijsbegeerte 101: 164–195.
Dresser, R.S. 1984. Bound to treatment: The Ulysses contract. The Hastings Center Report 14(3): 13–16.
Dresser, R.S. 1995. Dworkin on dementia-elegant theory, questionable policy. The Hastings Center Report 25(6): 32–38.
Dresser, R.S. 2003. Precommitment: A misguided strategy for securing death with dignity. Texas Law Review 81: 1823–1848.
Dresser, R.S., and J.A. Robertson. 1989. Quality of life and non-treatment decisions for incompetent patients: A critique of the orthodox approach. Law, Medicine & Health Care 17: 23–44.
Dresser, R.S., and P.J. Whitehouse. 1994. The incompetent patient on the slippery slope. The Hastings Center Report 24(4): 6–12.
Dworkin, R. 1993. Life’s dominion: An argument about abortion and euthanasia. London: Harper Collins.
Dworkin, R. 2004. Replies to critics. In Dworkin and his critics, with replies by Dworkin, ed. J. Burley. Oxford: Blackwell.
Fagerlin, A., and C.E. Schneider. 2004. Enough. The failure of the living will. The Hastings Center Report 34(2): 30–42.
Feinberg, J. 1986. Harm to self. Oxford: Oxford University Press.
Fried, T.R., J. O’Leary, P. Van Ness, and L. Fraenkel. 2007. Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment. Journal of the American Geriatrics Society 55(7): 1007–1014.
Gastmans, C., and J. De Lepeleire. 2010. Living to the bitter end? A personalist approach to euthanasia in persons with severe dementia. Bioethics 24: 78–86.
Gastmans, C., and Y. Denier. 2010. What if patients with dementia use decision aids to make an advance euthanasia request? The American Journal of Bioethics 10(4): 25–26.
Gedge, E.B. 2004. Collective moral imagination: Making decision for persons with dementia. The Journal of Medicine and Philosophy 29: 435–450.
Gezondheidsraad. 2002. Dementie. Den Haag: Gezondheidsraad.
Goering, S. 2007. What makes suffering “unbearable and hopeless”? Advance directives, dementia and disability. The American Journal of Bioethics 7: 62–63.
Harvey, M. 2006. Advance directives and the severely demented. The Journal of Medicine and Philosophy 31: 47–64.
Hertogh, C.M.P.M. 2006. Advance care planning and the relevance of a palliative care approach in dementia. Age & Ageing 35: 553–555.
Hertogh, C.M.P.M. 2008. The role of advance euthanasia directives as an aid to communication and shared decision-making in dementia. Journal of Medical Ethics 35: 100–103.
Hertogh, C.M.P.M., R.M. Dröes, and M.E. De Boer. 2006. Dementie sluit praten over euthanasie niet uit. Medisch Contact 61: 15–17.
Hertogh, C.M.P.M., M.E. de Boer, R.M. Dröes, and J.A. Eefsting. 2007. Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients with dementia. The American Journal of Bioethics 7(4): 48–56.
Hertogh, C.M.P.M., M.E. de Boer, R.M. Dröes, and J.A. Eefsting. 2008. Beyond a Dworkinian view of autonomy and advance directives in dementia. Response to open peer commentaries. The American Journal of Bioethics 8(4): 4–6.
Hope, T. 1992. Advance directives about medical treatment. British Medical Journal 304: 398.
Jaworska, A. 1999. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Affairs 28: 105–138.
Jaworska, A. 2007. Caring and full moral standing. Ethics 117: 460–497.
Kadish, S.H. 1992. Letting patients die: Legal and moral reflections. California Law Review 80: 857–888.
Kitwood, T. 1990. The dialects of dementia with particular reference to Alzheimer’s disease. Ageing Society 10: 177–196.
Kitwood, T. 1997. Dementia reconsidered: The person comes first. Philadelphia: Open University Press.
Kleijer D.J. 2005. “Het wordt geregeld…”, Een onderzoek naar (zelf)regulering bij het staken of onthouden van een levensverlengende behandeling op Intensive Cares in Nederland. Dissertation, RUG, Groningen.
Koninklijke Nederlandsche Maatschappij tot bevordering der Geneeskunst (Commissie Aanvaardbaarheid Levensbeëindigend handelen). 1997. Medisch handelen rond het levenseinde bij wilsonbekwame patiënten. Houten: Bohn Stafleu Van Loghum.
Koppelman, E. 2002. Dementia and dignity: Towards a new method of surrogate decisionmaking. The Journal of Medicine and Philosophy 27: 65–85.
Kuhse, H. 1999. Some reflections on the problem of advance directives, personhood, and personal identity. Kennedy Institute of Ethics Journal 9: 347–364.
Levi, B.H., and M.J. Green. 2010. Too soon to give up: Re-examining the value of advance directives. The American Journal of Bioethics 10(4): 3–22.
MacLean, A. 2008. Advance directives and the rocky waters of anticipatory decision-making. Medical Law Review 16: 1–22.
MacQuarrie, C.R. 2005. Experiences in early stage Alzheimer’s disease: Understanding the paradox of acceptance and denial. Aging & Mental Health 9: 430–441.
McMahan, J. 2002. The ethics of killing. Oxford: Oxford University Press.
Meulenberg, F. 2006. ‘Column’. Medisch Contact 6(13) 31 maart.
Mitchell, S. 2007. A 93-year-old man with advanced dementia and eating problems. Journal of the American Medical Association 298: 2527–2536.
Nederlandse Vereniging van Verpleeghuisartsen. 1997. Medische zorg met beleid. Handreiking voor de besluitvorming over verpleeghuisgeneeskundig handelen bij dementerende patiënten. Utrecht: NVVA.
Nolan, M., T. Ryan, P. Enderby, and D. Reid. 2002. Towards a more inclusive vision of dementia care practice and research. Dementia 1: 193–212.
Nys, T.R.V. 2012. The wreckage of our flesh: Dementia, autonomy, and personhood. In Justice, luck and responsibility in health care: Philosophical background and ethical implications for end-of-life care, ed. Y. Denier et al. Dordrecht: Springer.
Post, S. 1995. Alzheimer disease and the “then” self. Kennedy Institute of Ethics Journal 5: 307–321.
Post, S. 2000. Key issues in the ethics of dementia care. Neurologic Clinics 18: 1011–1022.
Regionale toetsingscommissies euthanasie. 2011. Jaarverslag 2010. Den Haag: Regionale toetsingscommissies euthanasie.
Rhoden, N.K. 1990. The limits of legal objectivity. North Carolina Law Review 68: 845–865.
Rurup, M.L., B.D. Onwuteaka-Philipsen, A. Van der Heide, G. Van der Wal, and P.J. Van der Maas. 2005. Physicians’ experiences with demented patients with advance euthanasia directives in the Netherlands. Journal of the American Geriatrics Society 53: 1138–1144.
Rurup, M.L., H.R.W. Pasman, and B.D. Onwuteaka-Philipsen. 2010. Euthanasieverklaringen bij Dementie. Nederlands Tijdschrift voor Geneeskunde 154: A 1273.
Sabat, S.R. 1998. Voices of Alzheimer’s disease sufferers: A call for treatment based on personhood. The Journal of Clinical Ethics 9: 38–51.
Sabat, S.R., and R. Harré. 1992. The construction and deconstruction of the self in Alzheimer’s disease. Ageing and Society 12: 443–461.
Schermer, M. 2003. In search of the “good life” for the demented elderly. Medicine, Healthcare and Philosophy 6: 35–44.
Shiffrin, S.V. 2004. Autonomy, beneficence, and the permanently demented. In Dworkin and his critics, with replies by Dworkin, ed. J. Burley. Oxford: Blackwell.
Teno, J.M., J. Lynn, R.S. Phillips, D. Murphy, S.J. Youngner, P. Bellamy, A.F. Connors Jr., N.A. Desbiens, W. Fulkerson, and W.A. Knaus. 1994. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? The Journal of Clinical Ethics 5: 23–30.
The, A.M., R. Pasman, B. Onwuteaka-Philipsen, M. Ribbe, and G. Van der Wal. 2002. Withholding the artificial administration of fluids and food from elderly patients with dementia: Ethnographic study. British Medical Journal 325: 1–5.
Van Delden, J.J.M. 2004. The unfeasibility of requests for euthanasia in advance directives. Journal of Medical Ethics 30: 447–451.
Van Delden, J.J.M., A. Van der Heide, S. Van de Vathorst, H. Weyers, and D.G. Van Tol. 2011. Kennis en opvattingen van publiek en professionals over medische besluitvorming en behandeling rond het einde van het leven. Den Haag: ZonMw.
Velleman, J.D. 1991. Well-being and time. Pacific Philosophical Quarterly 72: 48–77.
Vezzoni, C. 2005. The legal status and social practice of treatment directives in the Netherlands. Dissertation, RUG, Groningen.
Widdershoven, G.A.M., and R.L.P. Berghmans. 2001. Advance directives in dementia care: From instructions to instruments. Patient Education and Counseling 44: 179–186.
Williams, B. 1973. The Makropoulos case: Reflections on the tedium of immortality. In Id., Problems of the self. Philosophical papers, Cambridge: Cambridge University Press.
Wrigley, A. 2007. Personal identity, autonomy and advance statements. Journal of Applied Philosophy 24(4): 381–396.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2013 Springer Science+Business Media Dordrecht
About this chapter
Cite this chapter
den Hartogh, G. (2013). The Authority of Advance Directives. In: Denier, Y., Gastmans, C., Vandevelde, A. (eds) Justice, Luck & Responsibility in Health Care. Library of Ethics and Applied Philosophy, vol 30. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-5335-8_10
Download citation
DOI: https://doi.org/10.1007/978-94-007-5335-8_10
Published:
Publisher Name: Springer, Dordrecht
Print ISBN: 978-94-007-5334-1
Online ISBN: 978-94-007-5335-8
eBook Packages: Humanities, Social Sciences and LawPhilosophy and Religion (R0)