Ethical Accompaniment and End-of-Life Care

Abstract

I. INTRODUCTION

In order to address the moral ambiguities associated with end-of-life care, an ethos of solidarity is necessary. Solidarity implies a willingness to walk with and accompany those who have been alienated from the greater society by illness. End-of-life care that rejects physician-assisted suicide (PAS) as a viable alternative needs to be informed by a theology of accompaniment. This theology of accompaniment is the language of solidarity, which requires the companion, as a representative of the greater Christian community, to be present and attentive to the one near to death as the latter passes through death into new life. Accompaniment requires that the companion cultivate specific Christian virtues as he or she accompanies the terminally ill individual in the face of impending death.

The goal of this article is to develop an ethic of accompaniment based on a Thomistic conceptualization of the virtues of charity and fortitude. This virtue-based accompaniment leads to four types of practices the companion can engage in, with, and on behalf of the dying patient. Last, the article argues that ethical accompaniment at the end-of-life offers the following contributions, namely, the companion can function as a healthcare proxy, offers a viable alternative to PAS, and overcomes the loss of meaning associated with death through the Christian narrative.

II. A THEOLOGY OF ACCOMPANIMENT

Within healthcare settings, there can be a tendency to overemphasize patient autonomy to the exclusion of other values such as relationality and interdependence. This perspective is problematic, in that it is a highly individualized conception of the human person that does not take into account the social basis of human life and the interdependence of human beings. As human beings, we are born into a world radically dependent on others, and we usually exit this life in a similar manner. In between birth and death, we exist in a state of mutual interdependence. As we try to define ourselves, we co-construct our own reality, own interpretations of how the world works within a communal context, and end up with a set of beliefs about God, neighbor, self, and the world. Our associations help to form our identity, as well as the meaning we posit on certain events.

It is a fallacy to believe that individual autonomy and independence are the hallmarks of human existence. “Autonomy as the isolated power of self-determination is an illusion because true freedom is not absence of limits and constraints, but the ability to pursue cherished and important values and goals within the constraints that human life inevitably brings and the opportunities provided within specific relationships and communities” (Cahill, 2005, 99). At its best, autonomy does not lead to isolated independence but provides the condition for the possibility of freely engaging in meaningful relationships. In this context, autonomy is a freedom for, not a freedom from relationships. One’s social relationships should not render individuality obsolete, but rather provide the context for mutual flourishing and development.

It is contrary to the Christian ethos to view death as an autonomous act entered into by an independent individual. The needs and concerns of those close to the end-of-life should be considered, in relation to not only individual autonomy, independence, and personal rights, but also “in relation to their connectedness to others and the ethics of practices concerned with their care and wellbeing” (Lloyd, 2004, 247).¹ Here is where the theology of accompaniment needs to be operative. Accompaniment seeks to formulate an integrative approach that respects the individual’s desire for autonomy and independence, but at the same time connects that individual to the greater community. The companion’s presence articulates to the dying person that he or she is not alone, but rather is part of a community of care and concern. At the same time, through a process of listening, the companion empowers the patient to be an active agent in the dying process.

A theology of accompaniment affirms God’s presence in the midst of suffering and death, as well as the power displayed in the resurrection of Jesus. According to Mashau, Jesus not only identified with God’s people “but also accompanied them in their journey of life in pain and suffering until he hanged shamefully for them on the cross, buried and resurrected thereby affirming life for those who identify themselves with him” (2008, 31). God’s Spirit is present and active in human history through the process of accompaniment, even in the face of pain, suffering, and death. Similarly, accompaniment is a reminder that suffering and hardship in this life are not the sign of God’s rejection. In the person of Jesus of Nazareth, God entered into the world and definitively conquered the power of death.

To accompany a terminally ill individual is to be his or her companion. Etymologically, the term companion means to be “with bread.” From the Christian perspective, to be a companion is a manifestation of our commitment made in the Eucharist to be one body in Christ. The presence of the companion is a reminder that the terminally ill individual is an integral part of the mystical body of Christ, the Church. Just as in the physical body when one part is ill the entirety suffers, likewise, when a member of Christ’s body suffers, we all suffer. Additionally, the notion that a healthy person willingly and faithfully accompanies those who are dying and have no choice about their impending death, is in itself a sign of hope and commitment on the part of the community.

A theology of accompaniment brings the companion and the ill together in a relationship of mutual presence. Rooted in a love that fosters trust, this relationship provides a level of commitment whereby each, to the best of his ability, pledges to be available to the other to sit and listen. “Accompaniment simply speaks of being there; sharing failure along with success, despair along with hope, stagnation and decay along with growth… it speaks of treating people with sensitivity and of valuing the gift of friendship” (Palmer, 2010, 10). To be a companion requires time and commitment. It is a relationship that needs to be cultivated. As the patient draws closer to death, his or her ability to actively participate in the decision-making process is severely diminished. If the companion wishes to authentically represent the cares and concerns of the patient, then the former needs to know the latter’s narrative.

The constitutive praxis of accompaniment is authentically listening to the narrative of the dying person. One’s natural tendency is to want to do something; do something to “fix” the situation. Unfortunately, when death is nigh for the patient, there is no “fix” for the situation. For accompaniment, “this something that one must do” is to go against the innate instinct for action and engage in active listening. Listening and learning from the patient affirms his dignity as a person and empowers him when so many decisions have been taken out of his hands by the disease. “The listening relationship itself is an expression of compassion in that it serves as a means not only for coming to know the shape of the patient’s suffering, but also as a means for relieving that suffering” (Vogt, 2004, 60). In suffering a terminal illness, the individual experiences very directly the loss and limits of control (Schaper, 1984). While attentiveness is necessary when accompanying those who are terminally ill, “one must prevent attentiveness from becoming over-intrusive or a form of surveillance” (Lloyd, 2004, 248). The companion must negotiate the desire to be with and to accompany without overpowering or “disempowering” the one who is dying.

The art of listening from the perspective of the companion is analogous to the role of the musical accompanist in which he or she “follows, leads, provides context and support for one who is playing or singing a solo; a solo that is necessarily largely improvised as the piece moves along” (Schaper, 1984, 140).² Because there is no “score” for the dying process, it is essential for the patient to “lead” so that the companion can respect the uniqueness of the particular situation and accompany in a non-formulaic manner. “Each person suffers in a different way and must die in a different way. Christian compassion should accept this fact and be forbearing, not controlling in the context of care for the dying” (Vogt, 2004, 77). In this sense, the companion surrenders control over the dying process to the terminally ill, allowing the latter to lead while the companion remains in a supporting role.

Accompaniment moves from being with and listening to the dying person, to engaging that person in a prophetic way and to critique the patient when necessary. The companion has a responsibility not only to listen, but also to speak, and to facilitate communication. The closed environment of the shut-in terminally ill individual can result in a distortion of reality. Only a companion who has listened attentively and established the bonds of trust through friendship could critique the unreal interpretations of the patient. The companion also provides contact to the greater community and the outside world, in this way demonstrating to the patient that his or her situation is not the entire world. In order to fulfill this task, the companion needs to be informed and possess prudential judgment.

III. THE VIRTUES OF ACCOMPANIMENT

Essential to the theology of accompaniment is the cultivation of specific Christian virtues necessary for the companion to engage the terminally ill individual in a helpful and supportive manner. These required virtues are charity as friendship, mercy as an effect of charity, and fortitude as endurance and mutual patience. Charity is the foundation of a theology of accompaniment. For Thomas Aquinas, charity is first and foremost friendship with God that results in union (1948, ST, II:II, 23.5 and 23.4). Love is essentially a unitive force that brings the lover and beloved into communion.

Out of charity, one loves both the friend with whom one has friendship and one loves the good one wishes to a friend (Aquinas, II:II, 25.2). From this perspective, the companion loves the ill person and wills the good for that person, namely, his or her union with God. For Aquinas, the best way to love another person is to love him “for God’s sake” so they can enjoy God fully (1948, II:II, 25.1, 27.7, and 26.2). By loving one’s neighbor for God’s sake, one corrects the tendency to need love to be reciprocal. In this way, Aquinas is trying to eliminate the subtle selfishness that can emerge when one loves for what one will receive in return. While we hope that the beloved returns our love, this reciprocity is not required for charity, as love of friendship. “Friendship consists in loving rather than in being loved” (Aquinas, 1948, II:II, 27.1, Obj. 1.).

Charity directs the companion and leads from accompaniment to friendship. For Aquinas, who is appropriating Aristotle, there are three kinds of friendship, “directed respectively towards the delight, the useful, or the virtuous” (1948, II:II, 23.1, Obj. 3). Charity as love of friendship is the foundation for virtuous friendship, whereas love of concupiscence, which for Aquinas is morally neutral, results in the friendship of utility and the friendship of delight (1948, I:II, 26.4).³ All three types of friendship are operative within accompaniment as the relationship develops and grows. For example, utility occurs when the one being accompanied requires a physical need to be met, delight when the companion feels a sense of pleasure from the mutual relationship, and virtuous when the companion must make tough decisions about end-of-life care on behalf of the terminally ill person. The primary focus is the establishment of a virtuous friendship rooted in charity.

In opposition to Aristotle and Aquinas, who maintained that friendship needs to be based on equality, a theology of accompaniment is based on an unequal relationship between the companion and the one who is accompanied. It is unequal in the sense that the relationship is born out of the need for the terminally ill to be accompanied through the dying process. Although the relationship is in a certain sense unequal, it is still a mutual friendship based on providing the good for the terminally ill individual. The mutual love requisite for friendship is founded on the active listening that characterizes accompaniment. For Aquinas, what separates well-wishing from friendship is the love between friends and the importance of communication between friends (1948, II:II, 23.1). The mutuality of accompaniment is manifest in the fact that the companion loves the accompanied as a “second self.”

An example of love of friendship within accompaniment is present within the L’Arche communities. Founded in 1964 by Jean Vanier, L’Arche communities bring together individuals with intellectual disabilities, core members, and those who choose to accompany them, assistants. The purpose of these intentional communities is to foster “community, love, and friendship” with the telos of moving members from “chaos to inner peace” (Vanier, 1998, 22).⁴ L’Arche communities seek to create for both core members and assistants an environment in which they can cultivate a deeper sense of their own worth and value through “the bonds of friendship” (Reimer, 2009). Although the relationships formed and fostered in these communities are not of intellectual equals, the narratives of their members speak of a genuine friendship whereby assistants desire to “share their lives with devalued people, to establish real bonds with them” (Vanier, 1992, 7). Within L’Arche, accompaniment as friendship is characterized by “mutual vulnerability and openness one to the other” (Vanier, 1998, 28). According to Jean Vanier, accompaniment expresses “the reality of being alongside people as a companion and friend in order to help them grow in freedom and in the spirit of community” (1989, 249). For the L’Arche communities, charity as love of friendship is cultivated through “listening, caring, clarifying, affirming, and challenging” (Vanier, 1989, 250).

For Aquinas, mercy is an effect of charity that is directed towards one’s neighbor (1948, II:II, 30.1). Mercy results from charity, “for it is out of charity that we weep with them that weep” (Aquinas, 1948, II:II, 30.2). Mercy, for Aquinas, is an act of love that leads to solidarity and empathy. “He who loves another looks upon his friend as another self, he counts his friend’s hurt as his own, so that he grieves for his friend’s hurt as though he were hurt himself” (Aquinas, 1948, II:II, 30.2). Mercy is more than pity or sympathy, it is actually taking on the suffering of another as one’s one. Or, as James Keenan says, mercy is “the willingness to enter into the chaos of another” (2008, 4). Analogously, in the act of accompaniment, out of mercy for the terminally ill, the companion vicariously suffers as well.

Building on this notion of mercy and solidarity, Allen Verhey defines mercy as “keeping company with the suffering and dying… and walking humbly in the imaginations and affections of those in despair” (2003, 316). Verhey’s emphasis on humility is essential for mercy understood within the context of accompaniment. A potential risk of accompaniment is paternalism and the tendency of the companion to assume he or she has the best interest of the patient in mind, when in reality, the former is promoting his or her personal agenda. While mercy is an effect of charity, it must be normatively applied through the principle of respect (Farley, 2002). The principle of respect limits mercy by prohibiting the companion from doing any unjust harm to the ill person. Mercy is cultivated and nourished in a communal context. Through the influence of the Christian community, the companion discerns the prudential course of action and how to apply mercy with respect.

In the face of prolonged suffering, the companion must be willing to be present to and journey with the one who is dying. Aquinas used the example of attending to the needs of a sick friend as an example of fortitude (1948, II:II, 123.5). Accompaniment entails the virtue of fortitude as both endurance and mutual patience. For Aquinas, “the principal act of fortitude is endurance, that is, to stand immovable in the midst of dangers rather than to attack them” (1948, II:II, 123.6). To endure requires that one repress one’s fears. Fortitude in the sense of endurance is a type of secular faith, a way of living for the common good and the betterment of society. Unlike Aristotle, Aquinas does not primarily see fortitude as an act of courage or bravery. Instead of attacking the source of suffering, it is more virtuous to endure. Fortitude is not about one instance, it is an ongoing response to the encounter of suffering, either one’s own suffering or the suffering of a friend. Fortitude as endurance is manifest over time. Initially, it is unknown whether the one who rushes in to accompany the dying does possess fortitude. Only time will tell if the companion possesses the fortitude to endure the arduous process of accompaniment or whether the initial response, albeit sincere, was really a manifestation of foolhardiness.

Aquinas reminds us “the endurance of death is not praiseworthy in itself, but only in so far as it is directed to some good consisting in an act of virtue” (1948, II:II, 124.3). Rather than the soldier, for Aquinas, the archetype of fortitude is the martyr, the one willing to suffer unto death for his or her convictions in faith. However, to make a martyr out of all who endure suffering would be an example of “cheap grace.” Too often in the attempt to comfort the dying, the theodicy that the companion offers represents a sadistic God who requires the suffering of human beings. “This disease is the cross you have to bear.” Fortitude as endurance does not relish pain and suffering, but it does realize that suffering is a part of life and that through the experience of the resurrection death is not the final answer.

Fortitude as endurance needs to be cultivated through prayer and meditation. In the face of death, sometimes one can do nothing but be present and pray and in that prayer be brought closer to the one who is dying. Ignatius of Loyola calls the retreatant to do precisely this in the first meditation of week one of the Spiritual Exercises. Being present to Christ crucified on the cross leads one to:

Imagine Christ our Lord suspended on the cross before you, and converse with him in a colloquy: How is it that he, although he is Creator, has come to make himself a human being? How is it that he has passed from eternal life to death here in time, and to die in this way for my sins…? In this way gazing on him in so pitiful a state as he hangs on the cross, speak out whatever comes to your mind. (Ignatius, 1991, 138)

In this meditation, one must endure the encounter of Christ on the cross without any recourse to change the situation. “The Christian who stands in love with the other who suffers is a faithful friend and a witness to the other… To comfort means to respond with an active listening to the one who wants to express her or his affliction” (Keenan, 2008, 83). All the individual can do is be present to and suffer along with Christ the crucifixion. Companionship occurs in encountering the broken Jesus. One cannot change the situation, but only be intimate. In this way, endurance results in an intimacy and friendship born out of suffering. The Gospel of John presents the paradigm for enduring the suffering of another: “Standing by the cross of Jesus were his mother and his mother’s sister, Mary the wife of Clopas, and Mary of Magdala” (NRSV, John 19:25).

In addition to endurance, a theology of accompaniment requires mutual patience. For Aquinas, “the proper act of fortitude is to endure, and this belongs to patience… For it belongs to patience to suffer with an equal mind the evils inflicted by others” (1948, II:II, 136.4). Mutual patience implies that the companion be with, as long as necessary, the one who is suffering. According to Christopher Vogt, the principal cause of death in developed nations is from chronic diseases, which bring with them a corresponding long period of dying, approximately three years (2004, 54). It is obvious to see that the companion will face many encounters over this period of time that will try their patience, but it is imperative that the companion remain steadfast and not make the terminally ill feel as if they are a burden.

Mutual patience requires the dying person also to be patient with the process of death. The companion should seek to nurture and support the exercise of patience on the part of the terminally ill individual by modeling that behavior. Similarly, the one who is dying should not impose his or her view of when the end should come about, but patiently remain true to the narrative of meaning offered by the Christian community. “To be patient in a Christian manner is also to wait expectantly for God’s activity in the world to be revealed” (Vogt, 2004, 77). This does not mean an unrealistic expectation for a cure, but the openness for encountering moments of grace in the dying process.

IV. PRACTICES OF ACCOMPANIMENT

Ethical accompaniment leads to four modes of caring for those close to death. By cultivating the virtues of charity and fortitude, the companion can more readily engage in the practices of care. In using the term practices, I am building on the work of Alasdair MacIntyre, whereby practices are “coherent and complex forms of established cooperative human activity directed toward the goods internal to that form of activity” (1997, 187). The active presence and listening of accompaniment moves from seeing to doing, from observing and listening to self-involvement. The practices of accompaniment include providing services that meet the basic needs of the terminally ill, education, advocacy, and empowerment. These practices are represented in the graph below:

The Y-axis represents practices that maintain the status quo or lead to systemic transformation with regard to health and medical treatment. The X-axis represents actions done by either the companion or the patient. C1 and C2 are practices performed by the companion, whereas P1 and P2 are practices performed by the patient.

Quadrant C1, basic needs, are practices done by the companion that maintain the status quo; quadrant P1, education, are practices initiated by the patient that maintain the status quo; quadrant C2, advocacy, are actions performed by the companion for the patient that lead to systemic transformation; and quadrant P2 are practices done by the patient that also lead to transformation. Accompaniment is operative in the four quadrants of healthcare ministry, but as the patient comes closer to death, activity in the two right quadrants begins to diminish and the companion becomes the primary agent. As the patient becomes more of a passive agent, greater attention and respect are necessary.

Meeting the basic needs of the terminally ill is the first practice of accompaniment. This is some direct action of the companion on behalf of the dying individual. These activities do not transform the situation, but rather make it more bearable and humane. Examples of this type of practices include assisting with feeding, bathing, and dressing the patient. This quadrant represents the “corporal works” of accompaniment. By meeting the basic needs of the patient, the companion addresses the patient in the concrete need of his or her particular situation. While these practices do not require physical or intellectual rigor, they are indeed putting charity and endurance into action. For example, think of bathing and dressing your adult parent. Seeing the person on whom you were so dependent, now being utterly dependent on you can be both a moment of grace and a moment of suffering. You initially endure the feelings of shame associated with the nakedness of your dying parent. Out of love, the care with which you were bathed as a child now returns and rests on your loved one.

Education is the next set of practices engaged in by the terminally ill individual, and, assisted by the companion, that initially maintains the status quo of medical treatment. Through the process of education, the patient becomes more informed about his or her condition and the medical options available. Education can lead to empowerment when the patient is able to transcend the traps of technologically advanced therapies that only offer a prolonged existence without viably contributing to the patient’s well-being. In exploring medical options for end-of-life care, the companion can aid the patient in determining which medical procedures are licit and necessary and which are illicit and not required. A treatment can be refused if it appears to be useless, or in the language of the Catholic Church, if it is extraordinary and disproportionate, or if the treatment is overly burdensome (Congregation for the Doctrine of Faith, 1980, 8–9; United States Conference of Catholic Bishops, 2009, 26–28).

Theologian Gilbert Meilander further elaborates on the distinction between mandatory and optional treatment by claiming that the treatment, not the quality of life, nor the care of the patient, must be burdensome (2005, 60–64). His concern is protecting human beings “who lack some of the distinctively human cognitive capacities” (Meilander, 2005, 70). This is a very important consideration when dealing with terminally ill patients with severely diminished capacities. Does someone in a persistent vegetative state lose the “right” to be loved and cared for because the care might be considered burdensome or the quality of life is not considered acceptable? Personhood cannot be reduced to our cognitive abilities and/or contribution to society. Human worth is not based on a capacity, but on being loved by God.

In an effort to transform end-of-life care, accompaniment is present within advocacy. Broadly understood, advocacy is a type of activism related to a set of specific issues and concerns whereby one speaks on behalf of another whose voice has been excluded from the discourse. Inherit to the ethics of advocacy is the issue of power relations. The companion, as an advocate, attempts to bridge the gulf between the terminally ill individual and the healthcare providers and policy makers. As the companion becomes more immersed and invested in the situation, he or she takes on the role of the advocate and serves the terminally ill by being present where decisions are made so as to exercise a transformative influence on the complex options available for end-of-life care. Here is where it is essential that the initial phase of seeing and conversing has led to an authentic appreciation for the experience of the dying patient and that the advocate is promoting the reasonable best interests of the patient and not just the patient’s autonomous preferences.

The last set of practices aim to empower the patient to transform the status quo of end-of-life care. “The dying must be allowed to die in their own, unique way and empowered to face their own suffering” (Vogt, 2004, 66). While essential to a theology of accompaniment, empowering the dying patient appears to be one of the most difficult elements to achieve. As the patient nears death, his or her agency diminishes greatly. Empowerment takes on a new meaning. Empowerment is more than critically engaging the healthcare providers on behalf of the dying individual. It is action with and by the patient, amplifying his or her voice within the decision-making process. In empowering the patient, the companion undergoes the experience of a kenosis of power, so that his or her power and influence are transferred to the patient. The companion should see his or her role as empowering the dying to “exercise their freedom and to shape their plan of care” within certain limits established by the communal understanding of care (Vogt, 2004, 66). Christopher Vogt sees an affirmation of this emphasis on empowerment in the 1995 revision to Ethical and Religious Directives for Catholic Health Care Services. “The 1995 revision of the Directives is distinguished by a shift from a largely paternalistic ‘best-interest’ model of medical decision making toward a model that urges health care providers to endeavor to carry out the wishes of responsible patients within certain parameters” (Vogt, 2004, 66).

V. BENEFITS OF ETHICAL ACCOMPANIMENT

“Accompaniment of people through the process of dying is widely regarded as essential to the well-being of the dying person” (Lloyd, 2000, 183). The theology of accompaniment with its basis in virtue and the cultivation of practices presented above has concrete benefits when facing the ambiguities of end-of-life care. First, ethical accompaniment with its emphasis on active listening places the companion in a position where he or she could act as a healthcare proxy on behalf of the dying individual. Second, a theology of accompaniment offers itself as a viable alternative to PAS. Last, Christian accompaniment provides a means to overcome the absurdity of death and reconstruct meaning through the Christian narrative. This is the most difficult of tasks and sometimes rendered impossible, due to the potential loss of ability to sustain a coherent narrative because of dementia, disorientation, or the excruciating pain associated with the advanced stages of terminal illness.

The benefits of active listening and open communication between the companion and the terminally ill individual enable the companion to more readily know the desires of the patient with regard to end-of-life care. These benefits have been quantitatively demonstrated through the research of Daniel S. Gardner and Betty J. Kramer. The two conducted a study of terminally ill elderly individuals and their family caregivers in order to determine the level of congruence between the two groups with regard to end-of-life issues and care preferences (Gardner and Kramer, 2010). During the course of advanced and terminal illness, patients often rely on family members to identify and communicate their needs and concerns. Unfortunately, according to Gardner and Kramer, “the accuracy of family members’ assessments of dying patients’ concerns and preferences is uncertain” (2010, 275). With the patients and family members studied, there was both continuity and discrepancy between the perceived wishes of the patient and their actual desires.

The major areas of agreement or congruence with regard to end-of-life issues and care preferences were concerns about functional physical decline, providing/receiving “competent, consistent, and responsive” care, controlling, and minimizing pain, being treated with dignity and respect, and dying at home with minimal pain and without high-tech life support (Gardner and Kramer, 2010, 280–288). While many of the elderly emphasized this last point about extraordinary means, their family caregivers may not have shared the same beliefs, but were willing to accept the patients’ wishes. With regard to incongruence, many elderly patients struggled with “diminished autonomy and increasing dependence on others,” while the family caregivers did not view dependence in a negative light and “emphasized the benefits of relying on others” (Gardner and Kramer, 2010, 281). Closely related was the fear of the patient becoming a burden, which was not shared by their family members (Gardner and Kramer, 2010, 283–284). Other areas of discrepancy included the desire to be prepared for death and fulfilling spiritual care needs.

Strikingly, Gardner and Kramer found that “the level of congruence was much higher among families reporting open communication regarding dying and end-of-life care. None of the families with open communication and half of the families with communication constraints shared end-of-life concerns or preferences that were not congruent” (2010, 290). The major concerns of those dying were dependency and being a burden. By communicating these concerns with family members and receiving the reassurance that the dying individuals were in fact a blessing, not a burden led to more continuity about care preferences. Similarly, through the open and honest communication of accompaniment, the companion and the patient are more likely to be congruent about end-of-life concerns.

Because of the depth of the relationship and the prophetic dimension of accompaniment, the companion can reasonably act on behalf of the patient’s best interests and not be reduced to a parrot of the patient’s autonomy. Gilbert Meilander describes the relationship between the proxy and the patient like this:

Here is a person upon whom I have often been dependent for love and care in the past. Now, when I can no longer participate in decisions about my medical care, I am content to continue to be dependent upon his or her care. Talk with him or her about what is best for me. (2005, 83)

As a healthcare proxy, the companion discerns the proper course of end-of-life treatment. This does not mean abruptly ending suffering and pain by any means necessary. Death is not a reality to be controlled. On the other side of the spectrum, “often the value and meaning of life are equated with prolonging life as long as possible” (Cahill, 2010, 28). This, too, is not always the proper course of action. The companion, as healthcare proxy, needs to choose the course of treatment that best adheres to the embodied narrative of the dying person. Namely, in choosing to continue or abstain from particular procedures, is the companion affirming the values and beliefs that have grounded the terminal patient throughout his or her life?

Ethical accompaniment offers a viable alternative to PAS. “A more excellent way (than PAS) will include a ministry to the dying as members of families, as friends, as members of communities of faith, and as members of other communities” (Verhey, 2003, 341). In order to make this alternative of accompaniment real to the suffering person, it must be “mediated by communal practices of care” (Cahill, 2005, 101). As was demonstrated above, accompaniment leads the companion to care for the dying person in four distinct ways: providing basic services, education, advocacy, and empowerment.

Care for the dying is manifest through the compassion of the companion and the greater community. For Margaret Farley, who is building on the work of Martha Nussbaum, “compassion constitutes a bridge between ourselves and others” that manifests itself in a care that is rooted in love (2002, 65). Additionally, according to Meilander, “Christian compassion is not minimizing suffering, but maximizing care” (2005, 62). At the same time, Timothy Quill argues for PAS as a last resort, based on the compassion of the physician for the patient.

Quill suggests that the elimination of suffering and the maximization of patient autonomy should be at the heart of compassion. For Quill, the components of compassion include maximizing patient autonomy or control over their bodies and their dying, facilitating the relief of suffering, and promising to never abandon the patient (Vogt, 2004). In a last attempt to alleviate suffering, the patient can place the situation of dying under his or her control and request PAS. The problem with accentuating suffering as a criterion for PAS is that it is extremely subjective and not directly related to physical pain. Quill himself points out suffering is complex and might have a psychological, social, spiritual, or existential basis. According to Christopher Vogt, “in almost every case that Quill presents, the suffering he seeks to relieve in his patients does not arise from inadequate pain relief, but rather from what he terms existential sources” (2004, 58). Are these individuals who opt for PAS really suffering an “existential crisis,” or do they suffer from “demoralization syndrome: a diagnosable cognitive disorder characterized in its extreme form by morbid existential distress” (Kissane, 2004, 21–31)? David Kissane does not reject the possibility of rational suicide outright, but he argues that in order to diagnose demoralization syndrome, the doctor/patient relationship needs to be substantial so that the doctor can determine if what the patient is feeling is “rational” or a “morbid desire” brought about by a cognitive disease (2004, 22–24).

Advocates of PAS put forth compassion as a viable motivation in favor of PAS, whereas compassion as care is more in continuity with the ethos of a theology of accompaniment. Compassion “as the capacity to be moved by another’s misfortune” leads the companion to advocate for greater care for the dying individual (Vogt, 2004, 53). Based on this conceptualization of compassion, PAS is an abortive act that terminates life along with suffering. A theology of accompaniment seeks to diminish physical pain through care and alleviate suffering by vicariously partaking in it and offering some sort of meaning to the absurdity of suffering.

“Coming to terms with the prospect of one’s death is, overall, a process of integration” (Schaper, 1984, 139). Prolonged chronic illness is often accompanied by a type of suffering resulting in a loss of personal identity and meaning. This suffering is the experience of the breakdown of our systems of meaning and our stories about ourselves; it is essentially an erosion of meaning. According to Lisa Sowle Cahill, “special Christian virtues can be cultivated throughout life that prepare individuals to overcome the threat of meaninglessness, approach death in appreciation of a community of love and care, and sustain in the dying person the virtue of solidarity with the community” (2005, 100). Here is where the Christian narrative can play a pivotal role in the theology of accompaniment by providing an integrating narrative that enables the dying to make some sense out of their experience and not fall into the void of meaninglessness. The Christian narrative allows the patient to begin to reconstruct meaning from the experience of his or her illness. By placing oneself and one’s suffering within the redemptive suffering of Christ, the void of meaning is replaced by an eschatological hope for restoration and wholeness.

According to Meilander, “we should not imagine that suffering can be eliminated from human life or that it can have no point or purpose in our lives” (2005, 7). On the contrary, a suffering, crucified God is central to Christianity, and human suffering looks to the counter-cultural phenomenon of the cross as the interpretative paradigm for human suffering (Hauerwas, 2003). The memory of Christ serves a two-fold function: recalling the past in order to transform the future. First, the unjust suffering of Jesus calls into question past and present suffering which is undeniable in the world in which we live. Through the incarnation, God became human so that in the person of Jesus God could take up our suffering and transform it. The incarnation is proof that God is in the world where this suffering is located.

Second, the memory of Christ transforms the future through the resurrection, which grounds the hope that all people may be called to God. While human beings cannot eliminate suffering, no matter how hard we try, the resurrection demonstrates that the destructive power of suffering does not have the final say. “God defeats and destroys the negative powers of sickness and death, but God does it by claiming even that realm as his own- by entering it and bearing it to its own logical end” (Meilander, 2005, 123). The resurrection enables us to see the world otherwise, that the suffering and death of Good Friday is transformed into the glorious resurrection and newness of life that is Easter. According to Pastoral Care for the Sick,

the family and friends of the sick and those who take care of them, have a special share in the ministry of comfort… it is their task to strengthen the sick with words of faith and by praying with them, to commend them to the suffering and glorified Lord, and to encourage them to contribute to the well-being of the people of God by associating themselves willingly with Christ’s passion and death. (National Conference of Catholic Bishops, 1983, 34)

The companion serves as a vehicle for retelling the narrative of Christ’s death and resurrection in such a way that the patient might be able to unite his or her own suffering to that of Jesus. Additionally, the companion is a representative of the Church trained in the “communal act of remembering” and can be a source of “habits and practices necessary to sustain the care of those in pain over the long haul” (Hauerwas, 2003, 81).

The need to reconstruct meaning and reformulate one’s identity is necessary for the health of the patient. Those suffering from terminal illness often view their disease in relation to their understanding of God, namely, that the individual is being punished by God. Based on a two-year study involving 596 hospital patients at least 55 years old, specific religious beliefs could be seen as a predictor of mortality (Pargament et al., 2001). If the patient viewed their illness as God’s abandonment or that God no longer loves them, then the patient was less likely to recover from the illness. These negative operational beliefs were “predictors of increased risk for mortality after controlling for demographic, physical health, and mental health variables” (Pargament et al., 2001, 1881). This study demonstrates that positive views of God have a beneficial influence on health. Through a connection to the Christian narrative, an alternative view of God and suffering can supplant those false operational conceptions.

Christianity offers the terminally ill individual a meta-narrative with which he or she might resonate and be able to make one’s own, and the memory of Christ provides a paradigm for interpreting his or her suffering. At the same time, it is imperative not to romanticize the suffering of the patient as a participatory praxis in the crucifixion of Jesus. Jesus of Nazareth voluntarily underwent his suffering death in opposition to religious and political injustice, whereas those who are dying from terminal disease are in a situation that is not within their control. As Christians, we try to gain an understanding of the reality of human suffering, but not to justify it as a good unto itself. God does not want us to suffer; human suffering is not God’s plan. Additionally, advanced stages of terminal disease can render patients incapable of sustaining a coherent narrative of their life. If and when this occurs, the Christian narrative will not “solve” the inability to overcome disorientation, but perhaps could comfort the loved ones of the terminal patients as they try to come to terms with the situation.

In conclusion, a theology of accompaniment offers insights on how to journey with and be present to those who suffer from illness. In order to sustain the act of accompaniment, the companion must cultivate the virtues of charity and fortitude through the practices of the Christian community and prayer. These virtues enable the companion to engage in practices with and on behalf of the dying patient. Through a theology of accompaniment, companions can assist patients in learning new ways to re-narrate their story, and heal the way that their illness affects their personal identity. By listening to the patient’s narrative, the companion assists in the construction of a new narrative that includes the suffering of the illness without allowing the experience to be overwhelming or the disease to be the dominant feature in defining the individual. In attempting to overcome the threat of meaninglessness and the loss of identity, accompaniment offers creative and imaginative solutions and has the capacity to envision unprecedented options for moving forward toward death without resorting to PAS.

Footnotes

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