Recognizing the Value of Suffering in Caring for Terminally Ill Patients

Jason T. Eberl, Ph.D.

Suffering and Hope Conference University of St. Thomas November 10-13-2005

Introduction

A number of issues surround the care of patients, particularly those who are terminally ill, to minimize their experience of pain and suffering. Advocates of active euthanasia or physician-assisted suicide argue that a patient’s intractable pain and suffering is a sufficient motivation and justification for them to end their lives.1 Others, who deny any justification for active euthanasia or physician-assisted suicide, nonetheless hold that various forms of so-called “passive euthanasia,” including the non-utilization of life- sustaining treatment, the use of palliative medication which may hasten a patient’s death, and terminal sedation, are morally acceptable means of alleviating pain and suffering.2 In this paper, I present reasons why a terminally ill patient,3 enduring extreme levels of pain and suffering, can nevertheless find an instrumental value to their suffering for both religious and non-religious goals. I will first delineate the concepts of “pain” and “suffering” and then demonstrate that pain and suffering at any level may have an instrumental value. I conclude with guidelines for how patients and their caregivers can respond to the experience of extreme pain and suffering.

Pain and Suffering

“Pain” and “suffering” are distinct concepts that are both often judged to be intrinsically evil. Pain is primarily a physical sensation; it is what follows beyond this mere sensation that constitutes suffering: “Suffering would seem to involve a rational awareness of pain and as a consequence the frustration of many of one’s life-projects”;4 “Suffering … ordinarily refers to a person’s psychological or spiritual state, and is characteristically marked by a sense of anguish, dread, foreboding, futility, meaninglessness, or a range of other emotions associated with a loss of meaning or control or both”;5 “In sum, people in pain frequently report suffering from pain when they feel out of control, when the pain is

1 See Derek Humphry, “The Case for Rational Suicide” The Euthanasia Review 1/3 (1986). 2 See Jason T. Eberl, “Aquinas on Euthanasia, Suffering, and Palliative Care” The National Catholic Bioethics Quarterly 3/2 (2003). 3 I concern myself here only with the case of terminally ill patients who are conscious and able to experience and respond to their pain and suffering. All references to the “patient” should be understood as one who is terminally ill, but is not in a comatose or terminally sedated state. 4 John Donnelly, “Suffering: A Christian View” in Infanticide and the Value of Life, ed. Marvin Kohl (Buffalo, NY: Prometheus Books, 1978): 166. Cf. Mary Rawlinson, “The Sense of Suffering” The Journal of Medicine and Philosophy 11 (1986): 42-43, 47-48, 56. 5 Daniel Callahan, The Troubled Dream of Life: In Search of a Peaceful Death (Washington, D.C.: Georgetown University Press, 2000), 95. 2

overwhelming, when the source of the pain is unknown, when the meaning of the pain is dire, or when the pain is apparently without end.”6 Pain perception includes physical and conscious mental factors that can be constitutive of suffering. Suffering, however, is a psychological state that goes beyond the mere perception that one is in pain: Suffering, furthermore, is not a purely physical matter. Physical pain, even though it is often associated with and often provokes suffering, is not in itself enough to cause suffering. To suffer, an emotional response to a given situation by a given individual is necessary. Suffering cannot be reduced to pain, nor is pain necessarily equivalent to suffering.7

Pain and suffering are intrinsically evil in the sense that they have no value in themselves to a person who experiences them, or to those who observe her having such an experience. Rather, the only value found in physical pain and psychological suffering is the instrumental value each may have for the sake of some desirable goal. For example, pain may serve as a “warning signal” that one’s body is not functioning properly and the subsequent suffering may motivate a person to have the “malfunction” corrected. If, however, no such instrumental value is present, then pain and suffering have no purpose or value, and ought to be avoided as they are inherently distressing to a person who experiences them.8

It is apparently the case that the terminally ill endure pain and suffering which have no instrumental value. A patient at the end-stage of lung cancer experiences great pain and suffering. While a person’s physical sensation of chest pain when she breathes may be useful in indicating to her that her lungs are not functioning properly, a patient at the end- stage of lung cancer is already aware that her lungs are not functioning properly. The pain she experiences with each breath no longer serves the instrumental function of informing her that her lungs are malfunctioning. Furthermore, the suffering she experiences as a result of her pain sensation, that would, in other cases, motivate a person to seek medical treatment, does not serve such a purpose here; the patient has already sought treatment and has reached the limits of what medicine can do to correct the malfunction. Hence, pain and suffering in the case of the terminally ill seem to lose their instrumental value, and are thus nothing other than intrinsically evil.

Instrumental Value of Suffering

Both religiously-based and non-religiously-based reasons can be given for the instrumental value of suffering. I will canvass the major religiously-based reasons that

6 Eric Cassell, The Nature of Suffering and the Goals of Medicine (New York: Oxford University Press, 1991), 36. 7 Erich H. Loewy, Suffering and the Beneficent Community: Beyond Libertarianism (Albany: SUNY Press, 1991), 4. 8 I should note that, in the most technical understanding of the term, “suffering” is not inherently distressing or unpleasant: “To suffer … is simply to allow, to be open, not to impose the ego-will or interfere, to suffer reality to be and to show forth” (Herbert Fingarette, “The Spiritual Value of Suffering” in The Aesthetic Turn, ed. Roger Ames (Chicago: Open Court, 2000): 79). The particular form of suffering of interest in this paper, however, is that which is harmful or potentially destructive to the sufferer. 3

have been formulated and then proceed to a detailed discussion of how one may locate value in suffering without an appeal to religious notions.

Different religious traditions have embraced the “spiritual value” of suffering and the acceptance of it as an essential aspect of human existence. For example, “It is well established in Jewish writings that there is no human being without suffering”;9 and, in the Samurai Code, “Bushido, the chivalric way of the warrior, embraced extreme suffering as the ultimate badge of … personal integrity.”10 St. Ignatius Brianchaninov, a nineteenth century Father of the Russian Orthodox Church, states, “A sorrowless earthly life is a true sign that the Lord has turned His face from a man, and that he is displeasing to God, even though outwardly he may seem reverent and virtuous.”11 In the Christian tradition, the spiritual value of suffering lies primarily in its redemptive character, by which individual human persons and humanity as a whole achieve salvation.12

The redemptive character of suffering can take many forms. In some religious traditions, particularly Judaism, suffering is seen partly as a punishment and a source of atonement for sins.13 Representing the Roman Catholic tradition, Pope John Paul II emphasizes the spiritually healing nature of suffering in characterizing it as redemptive: “Suffering must be for conversion, that is, for the rebuilding of goodness in the [sufferer], who can recognize the divine mercy in this call to repentance.”14

Besides the redemption of an individual human person, suffering also plays in essential role in the Christian understanding of the redemption of sinful humanity. Referring to Christ’s suffering crucifixion and death, John Paul II states, Precisely by means of this suffering he must bring it about “that man should not perish, but have eternal life.” Precisely by means of his Cross he must strike at the roots of evil, planted in the history of man and in human souls. Precisely by means of his Cross he must accomplish the work of salvation. This work, in the plan of eternal Love, has a redemptive character.15

On this understanding of the universally redemptive character of Christ’s suffering and death, human suffering is also redeemed such that it too has salvific power:

In the Cross of Christ not only is the Redemption accomplished through suffering, but also human suffering itself has been redeemed … Every man has his own share in the Redemption. Each one is also called to share in that suffering through which the Redemption was accomplished … each

9 Avraham Steinberg, “The Meaning of Suffering: A Jewish Perspective” in Jewish and Catholic Bioethics: An Ecumenical Dialogue, ed. Edmund Pellegrino and Alan Faden (Washington, D.C.: Georgetown University Press, 1999): 78. 10 Lonnie Kliever, “Dax and Job: The Refusal of Redemptive Suffering” in Dax’s Case: Essays in Medical Ethics and Human Meaning (Dallas: Southern Methodist University Press, 1989): 192. 11 Alexey Young, “Natural Death and the Work of Perfection” Christian Bioethics 4/2 (1998): 171. 12 See H. Tristram Engelhardt, Jr., The Foundations of Christian Bioethics (Lisse: Swets & Zeitlinger, 2000), 314. 13 See Steinberg 1999, 78-79. 14 John Paul II, Salvifici doloris (1984), 12. 15 John Paul II 1984, 16. 4

man, in his suffering, can also become a sharer in the redemptive suffering of Christ.16

St. Paul writes, “I am now rejoicing in my sufferings for your sake, and in my flesh I am completing what is lacking in Christ’s afflictions for the sake of his body, that is, the church.”17 Thus, as Kevin Donovan concludes, “It can be permissible and even laudable for one to choose to forego pain relief with its associated problems and embrace one’s suffering in communion with the sufferings of Christ.”18

Another aspect of the Christian understanding of human suffering is as a trial, by which the virtuous nature of individual human persons can be exercised: Suffering as it were contains a special call to the virtue which man must exercise on his own part. And this is the virtue of perseverance in bearing whatever disturbs and causes harm. In doing this, the individual unleashes hope, which maintains in him the conviction that suffering will not get the better of him, that it will not deprive him of his dignity as a human being, a dignity linked to awareness of the meaning of life.19

Such an exercise of virtue provides a benefit not only to the sufferer, but also to those who witness her display of perseverance: “When this body is gravely ill, totally incapacitated, and the person is almost incapable of living and acting, all the more do interior maturity and spiritual greatness become evident, constituting a touching lesson to those who are healthy and normal.”20 Suffering thus allows for virtue to be exercised by the sufferer with respect to herself, by the sufferer with respect to others by her example, and also by caregivers with respect to the sufferer.

Recognizing a positive value to unavoidable suffering need not require one to accept a virtue theory of morality or adopt a religious perspective toward suffering. Other moral theories, such as that formulated by Immanuel Kant, recognize the possession and exercise of autonomy as central to moral living and happiness. Proponents of active euthanasia or physician-assisted suicide argue that a patient’s suffering may be eased by her capacity to control her own fate, by determining when and how she dies through an act of suicide.21 But one can also exercise control over her own fate by searching for the possible meaning and value of her suffering, rather than denying such a possibility: “When I have options to my suffering, suffering is greatly reduced. A sense of impotence, a lack of control over my own destiny, aggravates suffering or, sometimes,

16 John Paul II 1984, 19. 17 Colossians 1:24, New Revised Standard Version. 18 G. Kevin Donovan, “Decisions at the End of Life: Catholic Tradition” Christian Bioethics 3/3 (1997): 201. That it may be laudable for a person to elect to experience fully her suffering and avoid its alleviation does not imply that it is incumbent upon one to do so. Rather, the point is that when unavoidable suffering is forced upon a person, she may accept this fact of her existence in the hope of it serving as an instrumental good. 19 John Paul II 1984, 23. 20 John Paul II 1984, 26. 21 See Humphry 1986, 175. 5

can convert pain to suffering.”22 An exercise of autonomous self-determination can also be a virtuous activity in terms of its leading to a richer, more integrated experience of one’s own selfhood. Theodore Fleischer contends, “In our response to the mystery of suffering, we define ourselves, find our integrity and ultimately shape our ethos.”23

The cultivation of virtue and exercise of autonomy focuses upon the value that suffering can have for a patient in relation to herself. But value also exists in terms of a patient’s relationship to her surrounding community and humanity as a whole: We do define ourselves in suffering both as individuals and as participants in the shared human condition … It is in suffering that we sense profoundly that our afflictedness at once is both intensely private and isolative, and yet held in common with all humanity. Our creatureliness, our lack of control, our consanguinity, our individuality and our co- humanity confront us in suffering … Suffering is not ours to control in the sense of its random intrusion into our lives. It is ours to control in terms of how we respond to it individually and collectively.24

The autonomy that may be exercised in response to suffering is not a control over whether one is affected by such evil, but how one responds to it. Furthermore, suffering affects, and an autonomous response can be exercised by, not only an individual human person, but also the human community as a whole.

Every human person suffers and must often individually confront her own suffering:

Suffering, in a sense, separates persons from community. Suffering persons tend to withdraw into themselves and to feel alienated from a community going on with its daily lives and tasks while they suffer. When communities ignore those within their embrace who are suffering and when they treat them uncaringly or callously the integrity and solidarity of community is shattered.25

Recognizing the universal suffering of all humanity, though, allows for a universal response to suffering to be autonomously exercised by all human persons. At both the level of recognition and the level of autonomous exercise, solidarity can be formed among human persons. This can lead to an improvement in interpersonal relationships as this feature of the universal human condition is recognized. By communally recognizing the finitude of human life and the universal experience of suffering, a collective response can be formulated and exercised by all human persons. Autonomy at the level of the individual does not disappear, but is exercised in communion with all other individual human persons. In this way, the solidarity of the human community is formed and expressed not only in the universal passive experience of pain, suffering, and death, but

22 Loewy 1991, 11. See Theodore Fleischer, “Suffering Reclaimed: Medicine According to Job” Perspectives in Biology and Medicine 42/4 (1999): 475. This presumes that a patient is able to exercise self-control and autonomy, as opposed to being mindlessly swept up in unbearable suffering. 23 Fleischer 1999, 485. 24 Marsha Fowler, “Suffering” in Death and Dying: A Christian Appraisal, ed. John Kilner, et al. (Grand Rapids: Eerdmans, 1996): 49. 25 Loewy 1991, 13. 6

also in the universal active response to such experiences: “The suffering individual and the community in which such suffering occurs cannot be separated. When community supplies solidarity and purpose, suffering is transmuted.”26

The formation and expression of a virtuous character, the exercise of autonomy, and the development of human solidarity may all serve to limit the negative impact of unavoidable suffering upon a patient. Through the expression of her virtuous character and the exercise of her autonomy, a patient may gain a sense of self-esteem. By developing a virtuous character and feeling a sense of solidarity with other human persons, a patient is better equipped to have richer interpersonal experiences. She can feel a sense of communion with others and experience mutual love and respect between herself, her caregivers, and her surrounding community. Furthermore, by accepting the finitude of her existence, and not fighting against the unavoidability of pain, suffering, and death, such experiences lose their “sting,” so to speak. By exercising an autonomous response to these experiences that is more than an attempt to escape from them, a patient can gain power over them and control to what degree they affect her ability to live her life and continue to have positive experiences.

Such positive effects impact not only upon a patient herself, but also upon those who care for her. Caregivers27 are inspired to perform acts of love and compassion toward a suffering patient, which yields the development of virtue in them. Caregivers are also provided an opportunity to exercise their duty to serve the needs of a suffering patient. Through recognizing the universal features of pain, suffering, and death as common to all of humanity, caregivers can feel a sense of solidarity and communion with a patient and share mutual love and respect with her.

As a result of this opportunity to develop and express their virtuous character, exercise their duty to serve, and experience mutual love and respect, caregivers can experience an increased sense of self-esteem and overall self-fulfillment. Another positive effect upon caregivers is that they are provided an example of how to approach pain, suffering, and impending death, which can help them prepare for their own future experiences of such. A notable example in recent times is the suffering and death of Joseph Cardinal Bernardin, Archbishop of Chicago.28 As Andrew Greeley entitled his published eulogy, “He taught us how to die.”29 This means much more than just how Cardinal Bernardin approached his final days. It indicates the important example of how he suffered up to the point of his death. While Cardinal Bernardin did not want to suffer and certainly did not seek to suffer, he accepted suffering as part of his personal journey towards death. Thus, Cardinal Bernardin has performed a great service in teaching us how to properly approach suffering and death; similar words have been spoken about Pope John Paul II as he suffered for years from Parkinson’s disease until his death in April, 2005.

26 Loewy 1991, 6. See W.T. Reich, “Speaking of Suffering: A Moral Account of Compassion” Soundings 72/1 (1989): 83-108. 27 “Caregivers” includes medical professionals, family, friends, spiritual advisors, and any others who contribute to a patient’s overall well-being. 28 This example is taken from Eberl 2003, 339. 29 See Andrew Greeley, “He Taught Us How To Die” Denver Post, Nov. 17, 1996, G3. 7

Fleischer nicely summarizes the overall instrumental value of the suffering faced by a terminally ill patient:

Several years ago I spent a few months observing a palliative care team at the Jewish General Hospital in Montreal. While they offered no philosophical answers to questions about the meaning of suffering, these dedicated doctors and nurses personified the caring community that serves the suffering. When patients, families, and friends were hesitant to broach the subject openly, the team encouraged them to discuss candidly their experience of suffering and concerns about impending death, rather than to focus exclusively on technological interventions. Doctors, patients, and family members struggled together to achieve a balance between the treatment of pain and the achievement of other important goals. Often they agreed that as the battle against illness and death drew to a close, the patient should be provided the resources such as maintained consciousness, conversational ability and cognitive strength necessary to carry out the important emotional and spiritual work that has to be done before death.

On many occasions I watched the team assist patients to strengthen relationships with loved ones and to utilize their final days to find meaning in their life experience and suffering. Patients sometimes expressed their love for others publicly for the first time in their lives. In the midst of suffering, patients affirmed their integrity and dignity. When they refused to be distracted by technological solutions and instead sought to understand the role of suffering in their lives, they were finally able to truly express their autonomy.30

As this example shows, there can be an instrumental value to a patient’s suffering for both herself and her caregivers. But such value does not entail any specific course of action in approaching a suffering patient. Below, I offer some general guidelines that allow for a wide course of actions that are consistent with not prolonging a patient’s suffering through extraordinary means which may be burdensome or futile,31 but which are antithetical to active euthanasia or physician-assisted suicide.

30 Fleischer 1999, 486-7. 31 See Pius XII, “The Prolongation of Life” The Pope Speaks 4 (1958): 393-8; Sacred Congregation for the Doctrine of the Faith, Declaration on Euthanasia (Boston: St. Paul Books & Media, 1980); President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment: Ethical Medical, and Legal Issues in Treatment Decisions (Washington, D.C.: U.S. Government Printing Office, 1983), 88; Daniel A. Cronin, “The Moral Law in Regard to the Ordinary and Extraordinary Means of Conserving Life” in Conserving Human Life, ed. Russell E. Smith (Braintree, MA: The Pope John Center, 1989). 8

Guidelines for Approaching Suffering

I offer here two goals that, if striven for and achieved by a patient and her caregivers, can lead to the amelioration of suffering. The goals are (a) the creation of intimate interpersonal bonds between the patient and her caregivers, and (b) the realization of self- fulfillment on the part of the patient, which may include the same realization in her caregivers.

As noted above, one of the key aspects of a patient’s suffering is the loneliness and sense of abandonment she may experience as she seems to face her impending death alone. While it is true that no other person can enter into the psychological state of a person facing death, empathy and intimacy do not require sharing a patient’s first-person experience. One can face death alone, in her own mind, and yet have her solipsistic experience eased by the additional experiences of love and intimacy provided by those around her:

To walk into the suffering of another, to name the darkness, to help to give voice to the cry and its hope, and to share in the lament of another is to be present to the one who suffers. It is the first step in facing suffering … The only real response to suffering, the only answer to the experience of suffering, is found not in doing, but in being—in intimacy.32

Instead of doing an act which removes a suffering person from our midst, one can be with a suffering person and thereby ease the sense of abandonment they may feel:

As bystanders to the suffering, we have to accept its unavoidability for the sufferer. We cannot relieve that suffering. The demand in some cases is to accept the suffering that another must endure, not run from it. Patience, loyalty, steadfastness, fortitude are called for in dealing with the person who must suffer, to help and allow the person to do and be what he must, however heavy the burden on him and others. We are called upon to suffer with the other, to be a supportive presence.33

A patient’s sense of abandonment may even be exacerbated by the seemingly compassionate act of euthanasia or physician-assisted suicide, which is directed toward alleviating the suffering of the caregivers, as well as that of the patient: “Instead of coming to terms with who we are and the meaning of suffering, we have allowed it to repel us. We try safely to remove suffering from our awareness, not infrequently by removing the sufferer from our awareness”;34 “We cease helping to bear one another’s suffering, but eliminate altogether the person who suffers … we would enter a claim to change the nature of human relationships.”35 Active euthanasia or physician-assisted suicide may be the result of a patient’s feeling like a pariah that must be removed for the

32 Fowler 1996, 52. 33 Callahan 2000, 97. 34 Fowler 1996, 50. 35 Callahan 2000, 115-116. 9

sake of bettering her caregivers’ existence, already present due to the patient’s perception of her dependence upon her caregivers. I am not trying to describe and judge the intentional state of the caregivers who may consent to an act of euthanasia or physician- assisted suicide, but to show a likely state of mind of a patient that can negatively enhance her overall experience of suffering. If, on the other hand, a patient is able to perceive love and respect from those who suffer with her, she may come to realize that her existence does have meaning, and an increase in self-esteem with a decrease in the sense of abandonment can occur. This can, in turn, lead to an improvement in the quality of a patient’s interpersonal relationships, which would undoubtedly be harmed through her perception of abandonment.36

Above, I discussed the instrumental value of suffering as an exercise of autonomy. Those who support active euthanasia or physician-assisted suicide may claim that further acts of self-fulfillment are impossible for an intensely suffering patient and that the only autonomous act left that she could possibly perform is to bring about her own death. Jean Kitchel provides a counter-claim:

It seems to me that a most powerful affirmation of the self-determination, freedom, and transcendence of the person would lie precisely in acting against a natural aversion which is not in itself free or transcendent but rather is shared by every subject … Paradoxically, to embrace suffering … is to thwart suffering’s destructive assault on the sufferer by asserting the very freedom and self-determination which are under attack.37

The passive acceptance of suffering and inevitable death can lead to a patient’s feeling defeated, powerless, and having lost control over her destiny. While active euthanasia or physician-assisted suicide may restore some level of control to a patient, yet they include a resignation to suffering, a surrender to its power, by being an act of flight from it. Recognizing the instrumental value of suffering, turning it to a patient’s and her caregivers’ advantage, takes the power and control from suffering and death and puts it in the hands of the patient and her caregivers. It is a profound exercise of autonomy and self-fulfillment for one to promote the value of suffering, rather than to allow suffering to devalue a patient.

In order to deal best with her experience of pain, suffering, and death, a patient must learn how the acceptance of her suffering and death can have instrumental value for herself and others. A patient’s caregivers are called to recognize that a suffering patient is a person in need of respect and love, and not a broken machine in need of repair (especially since, in the case of the terminally ill, attempts at repair are futile). It is also incumbent upon them to assist the patient in realizing that she does not suffer and face death alone, there is value to her suffering, and how she approaches her suffering and death can be fulfilling to both herself and others by expressing virtue. Mary Rawlinson

36 See On Dying Well: An Anglican Contribution to the Debate on Euthanasia (London: Church Information Office, 1975), 22. 37 Jean Clare Kitchel, “The Value of Suffering: Pope John Paul II and Karol Wojtyla” Proceedings of the American Catholic Philosophical Association 60 (1986): 192. 10

contends that the surrounding community is called “to support the one who suffers in growth, sacrifice, or restitution by encouraging him in his suffering, for this suffering is consonant with and necessary to the production of the autonomous subject in the sufferer”;38 she concludes that “the goal and guide of our assistance ought always to be the restoration in the [sufferer] of the capacity to value, to take ends as his own and pursue them.”39 If caregivers are effective in assisting a patient to have a restored sense of autonomy, and if the patient recognizes that she can control her suffering by exploiting its instrumental value, then the patient can ameliorate her current existence by her active autonomous control over her passive experience of unavoidable suffering for the benefit of others and her own self-fulfillment.

Conclusion

There a number of religiously- and non-religiously-based goods that can result from suffering. The former include atonement for personal sins and union with the redemptive suffering and death of Christ for the sake of all humanity. The latter include a patient’s self-fulfillment, her experience of respect and love in solidarity with her caregivers and the rest of humanity, and her exercise of autonomous control over her experience of pain, suffering, and impending death.

Effective means of addressing unavoidable pain, suffering, and death can be utilized by a patient and her caregivers. If a patient is able to experience intimate love, respect, and empathy, she will cease to feel abandoned or forsaken. If a patient is able to recognize the instrumental value of her suffering, she may gain a sense of autonomous control over her experience such that can she can accept it as a friend or tame it as a pet, rather than expend her energy fighting it as an enemy or escaping it as a predator. In so doing, she may effectively prepare herself for a “good death” (the root of the term “euthanasia” [eu thanatos]).40

Jason T. Eberl, Ph.D. Indiana University-Purdue University Indianapolis

38 Rawlinson 1986, 59. 39 Rawlinson 1986, 60. 40 I am grateful to Fr. John Kavanaugh, SJ and Kevin Decker for helpful comments on an earlier draft of this paper. This paper benefited from presentations at the 30th Conference on Value Inquiry and “Suffering and Hope,” an interdisciplinary conference sponsored by the Center for Thomistic Studies at the University of St. Thomas in Houston, Texas.