Considerations of human dignity figure prominently in discussions of health care, and are central in the debate with regard to end-of-life care and the issue of physician-assisted suicide. In this paper I reflect on my experience as a person living with multiple sclerosis in order to explore ways in which prevailing cultural values contribute to the loss of dignity that accompanies incurable illness and disability. I suggest that authentic Christian community may offer an alternative culture with a radically different value system, one that enhances human dignity.
Get full access to this article
View all access options for this article.
References
1.
I have lived with multiple sclerosis for more than 30 years. Over the years, my illness has affected my ability to see, to sense, to move, to stand up, to sit up, to maintain my balance, to walk, and to control my bowels and bladder. My disease has progressed to the point that I use a motorized wheelchair full-time.
I am thinking here of values that are prevalent in North American culture and in Western scientific medicine although, to the extent that these values have spread to other parts of the world, these comments also apply to the meaning of illness in other cultures.
4.
Agich notes that, although “autonomy is acknowledged by many authors to involve a family of meanings,” the model of autonomy described in this paper is, in fact, the “standard,” “mainstream,” model whose “importance and pervasiveness can hardly be overestimated.” See: AgichG.J.Chronic illness and freedom. In: ToombsS.K., BarnardD., CarsonR.A. (eds). Chronic Illness: from experience to policy.Indiana: Indiana University Press, 1995; pp. 133, 136, 138.
5.
Engelhardt points out that, in a culture that celebrates autonomy as the cardinal value, the preservation of dignity is identified with self-determination or self-rule. See: EngelhardtHT. The Foundations of Christian Bioethics.The Netherlands: Swets & Zeitlinger, 2000; pp. 43–44, 311, 312.
6.
It is not my intent in this paper to provide a philosophical critique of the mainstream model of autonomy, nor to provide an alternative model, as important as these tasks might be. Rather, I am limiting my comments to the ways in which this prevailing and culturally widespread notion of autonomy directly contributes to the loss of dignity experienced by those like myself who live with progressively debilitating illness and disability. I recognize that, as is the case with the concept of dignity, there is much philosophical debate about the definition of “autonomy” and its relevance in the context of medical ethics. See, for example, Engelhardt HT. The Foundations of Bioethics. New York: Oxford University Press, 1986; Beauchamp TL, Childress JF. Principles of Biomedical Ethics. New York: Oxford University Press, 2001; Engelhardt HT. The Foundations of Christian Bioethics. The Netherlands: Swets & Zeitlinger, 2000. For a philosophical and sociohistorical critique of the prominence of the principle of autonomy in medical ethics, see: Pellegrino ED, Thomasma DC. For the Patient's Good: the restoration of beneficence in health care. New York: Oxford University Press, 1988; Brody H. The Healer's Power. New Haven: Yale University Press, 1992. For a philosophical discussion of the implications of the principle of autonomy for chronic illness, see: AgichGJ. Chronic illness and freedom. In: ToombsS.K., BarnardD., CarsonR.A. (eds). Chronic Illness: from experience to policy.Indiana: Indiana University Press, 1995; pp. 129–153.
7.
AgichG.J., op. cit., p. 133.
8.
AgichG.J., op. cit., p. 133.
9.
Agich notes the mainstream view of autonomy “involves a view of persons as isolated and independent rational and competent decision makers who are, by definition, involved in the ceaseless pursuit of the fulfillment of their own preferences, for without such pursuit and fulfillment, autonomy would be a vacuous concept on this view.” op. cit., p. 133.
10.
RobillardA.R.The Meaning of a Disability: the lived experience of paralysis.Philadelphia: Temple University Press, 1999.
11.
FineM., AschA. (eds). Women with Disabilities: essays in psychology, culture and politics.Philadelphia: Temple University Press, 1988.
12.
A dominant focus of standard accounts of autonomy is choice. According to this model, if an individual is to be truly autonomous, he or she should be afforded unrestricted and unfettered choice from a given range of options—the crucial condition being that such choice is “not constrained in any way.” AgichG.J., op. cit., p. 136.
13.
ToombsS.K.The Meaning of Illness.The Netherlands: Kluwer Acad Pub, 1992.
14.
ToombsS.K.Sufficient unto the day: a life with multiple sclerosis. In: ToombsS.K., BarnardD., CarsonR.A. (eds). Chronic Illness: from experience to policy.Indiana: Indiana University Press, 1995; pp. 3–23.
15.
As a personal example, a close relative tragically cited this, and the fear of being a burden to others, as the primary reasons for taking his life.
16.
It has been suggested to me that these personal examples of “developing concrete and appropriate strategies of control” hint at a more sophisticated notion of autonomy than the mainstream view. Such a notion would, of course, be very different from the prevailing model, in that it would have to allow for the realities of unavoidable limitation, dependence, and necessary restriction of choice—all of which denote the explicit loss of autonomy in the mainstream view. Such strategies do exemplify the exercise of control (albeit limited control) on the part of the patient, and this is an important aspect of enhancing dignity in palliative care settings.
17.
ChochinovH., LanderM.Desire for death in the terminally ill. In: JoishyS.K. (ed). Palliative Medicine Secrets.Philadelphia: Hanley & Belfus, Inc., 1999; pp. 185–187.
18.
HahnH.The politics of physical differences: disability and discrimination. J Soc Issues1988; 44: 39–47.
19.
OliverM.Understanding Disability: from theory to practice.New York: St. Martins Press, 1996.
20.
ToombsS.K.Reflections on bodily change: the lived experience of disability. In: ToombsS.K. (ed). Handbook of Phenomenology and Medicine.The Netherlands: Kluwer Acad Pub2001; pp. 247–261.
21.
CorbetB.Physician assisted death: are we asking the right questions?New Mobility, May 2003.
22.
Since euthanasia became legal in the Netherlands in 2002, there have been political moves to liberalize the laws to include those who are not terminally ill. See, for example, the article at <http://www.cnn.com/2002/WORLD/europe/04/01/netherlands.euthanasia>. Among those organizations that advocate the legalization of PAS and euthanasia elsewhere, there is support for including those who are not terminally ill. See: Corbet B. Physician assisted death: Are we asking the right questions? New Mobility, May 2003. In 1992 the Dutch Pediatric Association issued guidelines for killing severely handicapped newborns. See article on euthanasia in the Netherlands. International Task Force on Euthanasia and Assisted Suicide, p. 4. <http://www.internationaltaskforce.org/fctholl.htm>.
23.
My purpose in this section of the paper is to share my lived experience of incurable debilitating illness in the context of the practices and values of a nondenominational Christian community, and to show how these particular values and practices are dignity enhancing. It is not possible in the context of this paper to provide a detailed account of the vision, roots, and cultural position of our community (nor is it the appropriate place to do so). I should perhaps explain that we draw probably the greatest portion of our beliefs, and lifestyle and values from the Anabaptist tradition, although there have been additional major influences such as Pietism and others. I recognize, of course, that our lived community is unique in some respects, but my intent is to show how the countercultural core values of our community of Christians consistently enhance dignity, even in the face of debilitating illness and death. What I have written should not be construed as a judgment on the merits or demerits of the experience of others who live in other cultural contexts. Nor should it be taken as implying that these are the only practices that can enhance dignity in the care of the terminally ill.
24.
John 15:13. The scriptural references in this section are included at the request of a reviewer. All are taken from the New American Standard Bible. California: Foundation Publications, Inc., except where a different translation is noted in the text.
25.
John 13:12–15; Eph. 5:1–2.
26.
Col. 3.
27.
Matt. 5:3–11.
28.
1 Cor. 13:1–13; Col. 3:12–15.
29.
Isa. 53:2.
30.
Ps. 39:4–5; Ps. 144:4; James 4:14.
31.
Isa. 53:3–5.
32.
Matt. 1:23; Isa. 7:14.
33.
Proverbs 3:5–7.
34.
Matt. 26:39; Mark 14:33–36; Luke 22:41–44.
35.
2 Cor. 12:7–9.
36.
It has been suggested to me that, in voluntarily laying down His life, Jesus was “exercising a sort of transcendent self-determination” which exemplifies a kind of “autonomy.” While I do not have space to fully respond to this suggestion in this context, I would interpret Jesus’ example of self-sacrificial love, and His voluntary submission to God and the givens in His life as an example of freely relinquishing one's claims to absolute autonomy or self-rule—of setting aside the “active pursuit of fulfillment of one's own desire” and “the ceaseless pursuit of the fulfillment of [one's own] preferences” which characterize the exercise of autonomy in our culture (see notes 5, 9, 12 above)—in submission to the rule of love. This is certainly the view that shapes my experience as a Christian and that informs our vision as a Christian community.
37.
Matt. 10:38–39, 16:24–25; Mark 8:34–35; Luke 9:23–24, 14:27.
38.
Rom. 8:35–39.
39.
Heb. 12:1–2.
40.
EngelhardtH.T.The Foundations of Christian Bioethics.The Netherlands: Swets & Zeitlinger, 2000; p. 312.
