Personhood and Palliative Sedation Master's Thesis Document
Personhood and Palliative Sedation:A Community of Christ ResponseByAndrea J. ChatburnDate: May 12, 2010Approved:_____________________________________________________________David Wendell Moller, Ph.D., Chair and ProfessorDepartment of Bioethics_____________________________________________________________Richard O. Randolph, Ph.D., Associate ProfessorDepartment of BioethicsA thesis submitted in partial fulfillment of the requirements for the degree ofMasters of Arts in Bioethics in theDepartment of Bioethics of the College of Biosciences atKansas City University of Medicine and Biosciences2010
2Thank you to my husband John,whose patience and incredible supportallowed me to both pursue this degreeand finish such a project.Thank you also to the following individuals who took the time to allow me tointerview them for this project. They shared both their theology and their intimate stories ofthe deaths of loved ones. I acknowledge that these are both sacred and precious memories,and I thank them for sharing them with me.David BrockTony Chvala-SmithCharmaine Chvala-SmithDon CompierJoAnn FisherBarbara HowardJennifer Brock-OlsonThank you to Mrs. B and her family, whose name and personal details have beenchanged for the purposes of this paper. I will never forget you.
3Author’s StatementThis topic is at the forefront of my own consciousness as a burgeoning new doctorand bioethicist in my own search to find ways to “be with,” sit with, listen to, and comfortmy patients who are nearing the end of life. The concept of a “good death” has emerged inthe American cumulative consciousness over the past two decades. It is increasingly relevantwith the current politics of health care reform and the changing demographic and landscapein our country’s aging population. My interactions with patients, nurses, chaplains, andattending physicians at the Kansas City Hospice House have shaped my image of the doctor Iwould like to become. Patients like Mrs. B, whom is mentioned in this paper, are imprintedon my memory and I will carry those experiences with me as I embark on a new career inmedicine.Additionally, I would like to recognize that choice and comfort in dying looks verydifferent for those on the political and financial margins of life. Those dying in refugeecamps, from natural disasters like the recent earthquakes in Haiti and Chili, of consequencesof sexual and violent abuse, of mental illness, of HIV/AIDS in Sub-Saharan Africa, of war,of poverty and starvation, or of any horrible combination of the above. Diseases that causedeath differ between countries in the Global North versus the Global South simply because ofaccess to basic human rights such as clean water. Let us not forget that human rights arebeing violated around the world daily, and that many do not have the luxury of contemplatingsuch questions as those below.
4Table of Contents Terminal Restlessness and Palliative Sedation: The Case of Mrs. B............................. 5 Method: The Quadrilateral......................................................................................................... 9 Reason.............................................................................................................................................10 Experience .....................................................................................................................................11 Enduring Principles....................................................................................................................12 Blessings in Community ............................................................................................................13 Pursuit of Peace............................................................................................................................15 Worth of Persons .........................................................................................................................18 Conclusion......................................................................................................................................20 Bibliography ...................................................................................................................................24
5Every family does dying differently. But, how do we ethically care for someone whois dying in our midst? How does the Community of Christ, as a Christian faith community,honor the worth of the dying person?Terminal Restlessness and Palliative Sedation: The Case of Mrs. BMrs. B was a patient of mine during a rotation in hospice as a third year medicalstudent. She was a woman in her early fifties with three young adult children and anattentive, solemn husband. When she arrived at the inpatient hospice house in mid-may, shearrived asking for physician aid in dying, commonly referred to as “assisted suicide.” Theattending doctor and her nurses reminded her that her request is not legal in the state ofMissouri, and then proceeded to sit with her and ask questions to tease out the reasons behindher request. Mrs. B admitted she was depressed and did not want to suffer. Uncontrolledpain and nausea were her deepest fears. She did not want to be a burden on her family andwished that her children would continue doing their regular summer activities rather thanvisit with her.After treating her depression and keeping up with her pain and nausea with variousdrugs (while maintaining an acceptable level of social interaction per Mrs. B’s wishes) sheadmitted that she was glad she had not undergone physician aid in dying. She was able tohave cherished conversations with her husband, mother, and children who were in town.Although pretending not to, Mrs. B continued to wait for a visit from her son who was in themilitary. She suspected that he was going to propose to his girlfriend at any time, and hopedhe would do so before visiting.It is common to gradually decrease one’s desire to eat or drink at the end of life.Three weeks after her admission to the hospice house, Mrs. B had eaten only a cube of
6cheese every few days and sipped just enough water to take her morning medications. Sheseemed very comfortable, and her needs were well attended. This continued for several moreweeks.Six weeks after her admission to the hospice house, Mrs. B’s son visited from hismilitary post to celebrate Mrs. B’s birthday. A single bite of chocolate and vanilla marbledgrocery store cake with fluffy white icing and blue lettering was the only food Mrs. B hadeaten in three weeks. She reiterated that she hadn’t expected to be alive for this birthday, butwas glad she was. Admittedly, her hospice care providers were surprised she had reachedthis milestone as well.Seven weeks after her admission to the hospice house, Mrs. B began to have pain andnausea that eluded a constant increase of even the strongest combinations of medications.She then began to have non-threatening hallucinations and periods of time when she couldnot sleep for over 40 hours, despite sedating medications. There were brief moments ofcommunication between Mrs. B and her caregivers, but they only revealed increasing pain,both physical and existential. Existential pain is what doctors call pain that is caused bysomething not physically identifiable. It is pain caused by emotional, social, psychological,and relational distress.1Unfortunately, most doctors cannot separate physical and existentialpain in healthy patients, let alone those who are dying. 2Mrs. B’s husband and mother continued to sit with her around the clock and were ontheir seventh week of sleeping on a cot in her room. They were at a loss for how to help her, 1Nancy Berlinger, "Taking "Existential Suffering Seriously," Journal of Pain and Symptom Management 34, no. 1 (July 2007): 108-‐110. 2 Timothy Kirk, N Coyle, S Poppito and R Bigoney, "Palliative Sedation and Existential Suffering: A Dialogue Between Medicine, Nursing, Philosophy, and Psychology," in American Academy of Hospice and Palliative Medicine Annual Convention (Boston, 2010).
7and just wanted her to feel at peace. Mrs. B had approached what is called “terminalrestlessness.” This is pain, anxiety, and agitation that run deep and elude constant symptommanagement from the best that palliative medicine has to offer. It is truly frustrating anddisheartening for all involved.Once again, Mrs. B asked for physician aid in dying. She simply could notunderstand why she was still alive and suffering. When asked to clarify, she stated that she“wanted it to end, wanted to just die already.” Again, she was reminded that this was not alegal option. She stated that she was glad she had important conversations with her lovedones over the past several weeks, but now there was nothing more to do. Her suffering wasnow meaningless. Relentlessly, she asked “why am I still here?” This is the crux ofexistential pain.The levels of medication Mrs. B was on to control her elusive symptoms ought tohave been enough to sedate any other patient to the point of unconsciousness, but Mrs. B wasboth lucid and in constant agitation. Mrs. B was now asking for sedation as a way to controlher symptoms by relieving her of consciousness. She underwent a form of PalliativeSedation for the intent of relieving both her physical and existential symptoms, but not tohasten or cause death.3Palliative sedation, which includes a spectrum of levels of medical sedation to relievepain, was an option for Mrs. B because of her terminal restlessness. Although stillcontroversial, both statements by the U.S. Supreme Court4,5and recent medical research6,7,8,9 3 Timothy E Quill, R Dresser and D W Brock, "The rule of double effect-‐-‐a critique of its role in end-‐of-‐life decision making," New England Journal of Medicine 337 (1997): 1768-‐71. 4 Washington v Glucksberg, 2258 (Supreme Court, 1997). 5 Vacco v Quill, 2293 (Supreme Court, 1997).
8show that palliative sedation does not directly or inadvertently cause death due to eithermedication side effects or the patient not being able to eat or drink while sedated. Rememberthat Mrs. B had only eaten a few cubes of cheese and a bite of birthday cake in seven weeks,and had merely sips of water. There is no good physiologic explanation as to why Mrs. B’sbody was sustained on such little nutrient. Several days later, Mrs. B—still sedated—diedpeacefully with her husband, daughter, and mother around her, lifted up in sacredcommunity.Mrs. B is the catalyst for my asking, “how ought we be with the one who is dying inways that respect their inherent worth as a person?” How does being sedated impact how weform community? How do we ethically respect the dying person’s autonomy, especiallythroughout the process of palliative sedation? These questions are essential to discoveringhow to “share the peace of Jesus Christ”10and to live and act in ways consistent with an ethicof Christ’s peace.11Even though one who is sedated is not actively interacting with the communityaround them, I would like to suggest that the Community of Christ Enduring Principlesprovide a great template for “being with” the one who is dying. Palliative sedation is not 6M Maltoni, et al, "Palliative sedation therapy does not hasten death: results from aprospective multicenter study," Annals of Oncology 20 (July 2009): 1163-69.7 Timothy E Quill, Ira Byock, et al, "Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids," Annals of Internal Medicine 132, no. 5 (March 2000): 408-‐14. 8 Linda Gazini, et al, "Nurses Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death," New England Journal of Medicine 349 (2003): 359-‐365. 9 R Macauley, et al, "Is it Time to Pull the Plug on the Principle of Double Effect?," in American Academy of Hospice and Palliative Medicine Annual Convention (Boston, 2010). 10Stephen M. Veazey, "Share the Peace of Jesus Christ," Community of Christ WorldConference (Independence, Missouri, 2005).11Danny A. Belrose, Vulnerable to Grace: A Study and Worship Resource ExploringDoctrine and Covenants Section 163 (Independence, Missouri: Community of Christ, 2008).
9something that is taken lightly. I will explore an end of life application of the followingEnduring Principles: Blessings in Community, Worth of Persons, and the Pursuit of Peace.The ethic presented by these values inform the how and when of living in community withsomeone who, like Mrs. B, has chosen the rare but important option of Palliative Sedation atthe end of life for terminal restlessness.Method: The QuadrilateralMy method for examining the Enduring Principles of the Community of Christ isinformed by an understanding of the Wesleyan Quadrilateral. The Wesleyan Quadrilateral isoften used to do theology.12Traditionally, the Quadrilateral has been utilized as a way ofunderstanding the interplay and importance of scripture, tradition, experience, and reason.The term quadrilateral refers to the image of either a foursquare or the tilted square image inFigure 1. Some imagine the four voices as leading to a spiral. I will use the voices withinthe Quadrilateral to aid in understanding and exploring some of the Enduring Principles.For the purpose of analyzing the topic of interactions with those at the end of life, Iwould like to propose an expanded quadrilateral, which includes the voice of medicine withinthe quadrilateral. The circle surrounding the Quadrilateral represents the context of thepostmodern community in which we live and make medical decisions. A postmoderncommunity context is appropriate both for describing the Community of Christ interactionswith one another and for palliative medicine within the more modern realm of aggressivelycurative medicine. It allows the circle to be colored by culture.The current culture of medicine in the United States represents a very modernviewpoint. Modernity splits persons into separate physical and spiritual entities, whereas 12Christian theology has always relied on the four voices of scripture, tradition, reason, andexperience. It is now popularly referred to as the “Wesleyan Quadrilateral.”
10postmodernity directly challenges this, recognizing the inseparable interconnectedness of thetwo. In this way, Palliative medicine represents a postmodern voice within the medicalcommunity. Palliative medicine is at the forefront of the bio-psycho-social model ofmedicine; it allows us to look at life and death differently.ReasonFor Wesley, reason was a tool, not an “independence source of knowledge.”13In thisway it was, for him, different from the other three principles of scripture, tradition, andexperience. The technology and science of medicine are akin to scripture and tradition as asource of knowledge and interpreting one’s physical and spiritual reality. In Figure 1,“reason” resides in the middle of the quadrilateral, in both parentheses and italics, withdouble-headed arrows pointing to each of the four points of the quadrilateral, suggesting thatreason is a tool for understanding each of the other principles. Likewise, the double-headed 13Rebekah L. Miles, "The Instrumental Role of Reason," in Wesley and the Quadrilateral:Renewing the Conversation, 77 (Nashville, Tennissee: Abingdon Press, 1997).Medicine & Science Tradition Experience (Reason) Scripture Postmodern Community Context Figure 1.
11arrow suggests that they are in conversation with one another, informing one another asunderstanding grows. Perhaps Wesley would have suggested that the arrows represent thespiritual senses14by which we perceive and discern.ExperienceJust as the science of medicine is akin to scripture and tradition, the art of medicine isparallel to the value of experience. In exploring the role of experience for Wesley, Methodisttheologian Randy Maddox recognizes that the term “experience” can be very ambiguous,meaning one of three things:151. Conscious awareness of being affected by an event or action2. Sympathetic understanding derived from similar subjective experience[s]3. Practical skill developed through repeated performanceHe then suggests that the culmination of these three understandings of experience “lead topractical/moral wisdom derived from life-long learning.”16I would suggest that althougheach person’s experiential background, which comes from age, education, and life events isdifferent, each of these aspects is valued. Truly, every one and every family does dyingdifferently. I suggest this lead toward a balanced respect for individuals in light of their ownexperiences.For the purposes of the topic of care of persons at the end of life, I will use theQuadrilateral to examine the Enduring Principles in a preliminary fashion only. Scripture,tradition, experience, and reason are embedded in my analysis, and medicine is representedby the topic of palliative sedation, which is the common thread throughout the paper. 14Ibid., 92.15Randy Maddox, "The Enriching Role of Experience," in Wesley and the Quadrilateral:Renewing the Conversation, 108 (Nashville, Tennissee: Abingdon Press, 1997).16Ibid.,110.
12The Enduring Principles are newly articulated recurrent values that come to theforefront of Community of Christ theology. Although “history informs but does not dictateour faith and beliefs,”17the Enduring Principles are consistent with the greater tradition thathistorically defines the Community of Christ. They represent formal institutional axioms.These principles currently resonate with the church’s evolving sense of identity and mission.As a church that seeks to live in ways that embody the peace of Jesus Christ, the EnduringPrinciples are the ethic, which informs our living. 18I will be using the lens of theQuadrilateral discussed above as the means by which I will explore the Enduring Principlesand how they apply to the end of life.Enduring PrinciplesThe Community of Christ Enduring Principles have been described as being “at theheart of how [the church] expresses [itself].”19Throughout the past year, the EnduringPrinciples article series has provided the Community of Christ with insight and foundationsfor enhancing our communities, congregations, and the world in which we live. They teachin a new way, our community’s own value system. Now is the time to apply them to theactivities of our living and our dying.Literally to cloak, to comfort: this is what it means to palliate. In medicine, the term“Palliative” refers to the special comfort and symptom management given to one who haseither pain due to a chronic illness or is nearing the end of life. When Palliative medicine isoffered at the end of life, it is used synonymously with hospice. 17Stephen M Veazey, "Perspectives on Church History," Community of Christ,www.cofchrist.org/OurFaith/history.asp (accessed April 7, 2010).18Belrose, 22-25, 42.19Barbara P. Howard, "Enduring Principles: Blessings in Community," Community of Christ,www.cofchrist.org/EnduringPrinciples/community.asp (accessed April 5, 2010).
13The activities of my life and career path continually interact with those who arejourneying near the end of life. In this, I find the Enduring Principles of Worth of Persons,the Pursuit of Peace, and Blessings in Community, particularly helpful in helping me answerthe question, “What ought community look like for one at the End of Life?” How ought webe with Mrs. B during her end of life journey, especially when her pain is elusive?20Blessings in CommunityThe Enduring Principle that proclaims the blessings we find in community must firstbegin with the way we view God in the Trinity: Jesus Christ, the Holy Spirit, and God, thethree are one. Imago dei; we were made “in the image of God.” St. Augustine, Bishop ofHippo in the fourth century, was first to suggest this.21Augustine described the love inherentwithin the relationship of the God, Jesus, and the Holy Spirit calling them “the lover, the[beloved], and love.”22God provides a perfect example of love for community in the lovingrelationship shown in the model of the Trinity.23Similarly, God provided a model for living 20In conversations with Tony Chvala-Smith, Community of Christ Theologian, hesuggested that the sacrament of baptism within the Community of Christ shows someparallels to palliative sedation in that it is an example of “autonomously forfeiting one’sautonomy to be acted upon by a community [sedated/baptized].” In baptism, one decidesautonomously, as Community of Christ currently does not accept infant baptism, to submitoneself to God and the community. There is a moment in baptism where once the individualchooses; they then take a passive role in community as the sacrament of baptism isperformed. The individual chooses to go through this, chooses to be in the community—bothwith God and the church—and then lets the community love them simply because they are amember of the community. Similarly, in one’s relationship with God there are moments ofsubmission and passivity. Additionally within the Trinity there are moments of submissionand passivity with the primary example of Jesus Christ submitting to death by crucifixion, asit is the will of God.21Sondra Ely Wheeler, Stewards of Life: Bioethics and Pastoral Care (Nashville, Tennissee:Abingdon Press, 1996).22Saint Augustine, Bishop of Hippo, The Works of Saint Augustine, The Trinity, ed. EdmundHill, trans. Edmund Hill, Vol. 5 (Hyde Park, New York: New City Press, 1991).23Don Compier, "Enduring Principles: Trinity: God is Love," Community of Christ,www.cofchrist.org/EnduringPrinciples/trinityLove.asp (accessed March 21, 2010).
14in community via the community formed by the Trinity. Don Compier, Dean of theCommunity of Christ Seminary, suggests that if we are made in the image of God, and Godshows perfect love in community, then we are made in the image of the Trinity and thereforecommunity; we were created in the image of sacred community.24I am loved, therefore I am. I am part of community, therefore I am. God exists incommunity, and we were created in the image of God, therefore we were created to live incommunity. Sondra Wheeler, in her exploration of a Christian bioethic, states that “in ourcapacity not merely to exist but to know reflectively that we exist, to love and choose whatwe pursue and to know that we are doing so, we reflect the three Persons of the Trinity. It ishow we bear the image of God.”25During the dying process of a friend, Barbara Howard described how a core group offive people—thirty individuals in total—who called themselves “The Tribe,” learned to bewith dying.26They ensured that someone was with their dying friend and her partner aroundthe clock, making certain to nurture both their physical and spiritual needs. My Benedictinefriends call this “sitting vigil.”27This is what a community can do to assure that a belovedfriend or family member does not die alone, as this is a common fear at the end of one’s life.The attention and ministry of presence given to one who is dying provides blessing in a 24Don Compier, Dean, Community of Christ Seminary, Graceland University, interview byAndrea J. Chatburn, Independence, Missouri (April 2010).25Wheeler 44.26Barbara P. Howard, interview by Andrea J. Chatburn, Independence, Missouri (April2010).27This author had the opportunity to go on a retreat on end of life spirituality at theBenedictine Monastic communities in Atchison, KS in May 2009. The underlying value forthis community was how they “sit vigil” with their fellow monastics who are dying, assuringthat no one dies alone.
15community of even two. The Tribe embodied sacred community, which reflects the image ofGod.The Tribe sought to make the journey through the end of life of their dying friend asrich as possible. Barbara and other members of The Tribe describe how during their vigilprocess, they felt a “buoyancy” in the midst of a dark time in the life of a friend. Sheattributes this feeling of lightness in time of heavy emotional feelings to the strength thecommunity, or The Tribe, unintentionally provided for one another while attending to afriend. The blessing of community given to the dying individual lives on within the womenof The Tribe as they continue to share with one another in the blessings of community, evenyears later. We are made in the image of the Trinity, and created to be in community withone another.To paraphrase Daniel Day Williams,28,29We either suffer inside of community or outside of community. When a communityshares the suffering of one in its midst, the inherent love, which comes from God andis modeled in the Trinity by God’s love for Godself, can be transformed intosomething almost sacramental.We are made in the image of the Trinity, and created to be in community with one another.Although all life involves suffering, through the sacramental love shared in community,suffering may be transformed. This is how we ought to be in community with Mrs. B duringher end of life journey, especially when her pain is elusive.Pursuit of PeacePalliative medicine doctor and author Ira Byock emphasizes that those who are dyingoften seek peace with their friends and family members by saying the Four Things: “Please 28Daniel Day Williams, The Spirit and the Forms of Love (New York, New York: Harper &Row, 1968) 185-191.
16forgive me, I forgive you, Thank you, and I Love You.”30,31and has witnessed that “Bysaying these things, people often feel better prepared to say good-bye.”Byock offers the Four Things as essential conversations for the dying individual andfor their loved ones who live on, saying,32“The Four Things have lent strength, renewed faith, and rekindled hope in the face ofuncertainty. They affirm our deep connection to one another. Through well- chosenwords, we can celebrate our communality, our humanity, and our individualuniqueness.”I would like to suggest that these are necessary conversations as the dying individual seekspeace for themselves and with the ones they love. It is also essential for their loved ones whomove onward into future relationships while remembering the legacy of the dead, seekingGod’s peace.The word shalom has been used frequently in the Community of Christ, mostpoignantly in the recently canonized passage in Doctrine and Covenants 163:2a, whichstates,332 a. Jesus Christ, the embodiment of God’s shalom, invites all people to come andreceive divine peace in the midst of the difficult questions and struggles of life.Follow Christ in the way that leads to God’s peace and discover the blessings of allof the dimensions of salvation.Although this translates literally to “peace” in English, there is recognition that the wordshalom exceeds any description available in the English language. The Hebrew word shalommeans “completeness, wholeness, health, peace, welfare, safety, soundness, tranquility, 30Ira Byock, The Four Things That Matter Most: A Book About Living (New York, NewYork: Free Press, 2004) 12.32Byock, 17.33Community of Christ, Book of Doctrine and Covenants (Independence, Missouri: HeraldPublishing House, 2000) 163:2a.
17prosperity, perfectness, fullness, rest, harmony, the absence of agitation.”34How ought weseek God’s shalom with Mrs. B during her end of life journey, especially when her pain iselusive?In his commentary on this passage, Danny Belrose states, “God’s peace has to dowith personhood, not property or comfort or convenience, or ambience. It has to do withpersonhood that recognizes the inestimable worth of each soul and their interconnectivity.”35The act of sitting with the dying and offering loving presence can be a way to embody God’sshalom. To honor the one who is dying and to dare to allow oneself to be uncomfortablearound death but value the peace that the Four Things offer is a way of embodying God’sshalom.When remembering the death of his younger sister, David Brock described the agonyand conflict she felt when her family members disagreed regarding her care.36The night thatDave’s sister died was the night disagreements were paused and the Four Things enabledgood-byes. Family and close friends remember her husband getting out his guitar for the firsttime in a long time and singing love songs to her as she let go. We are truly connected to oneanother, and it seems that peace was had on the night that Dave’s sister died. This peacelives on in their family as they continue to remember their sister despite disagreements.Family and friends facilitated peace, and it allowed the peace and love needed to let go. Thisis how we ought to seek God’s shalom with Mrs. B during her end of life journey, especiallywhen her physical or existential pain is elusive. 34Belrose, 22.35Ibid., 23.36David R. Brock, Presiding Evangelist, Community of Christ, interview by Andrea J.Chatburn, Independence, Missouri (April 2010).
18Worth of PersonsThe Enduring Principle that emphasizes the worth of all persons seeks to call ourattention to the giftedness and inherent worth of all those who are pushed to the margins ofsociety. In some instances, those who have a terminal illness and are in the last months oftheir life are marginalized. They are sometimes forgotten because others do not wish toacknowledge their illness and deterioration or are simply uncomfortable with death.In the recent Community of Christ canonizations of passages in the Doctrine andCovenants, sections 163 and 164, it calls individuals to have solidarity with those who aremarginalized. In a commentary on the Enduring Principles, Robin Linkhart states, “Godlives vibrantly in the margins of society—margins that humans create to stratify, classify,rank, and appoint worth.”37She goes on to suggest that God’s love is “radically inclusive.”Sacred community recognizes the worth of all persons and invites all to the table.The image of a circular table is symbolic of being inclusive, especially to those who aremarginalized.38In his commentary on section 163, Danny Belrose uses the image of thecircle, saying, “we are called to welcome all who abide within the circle of God’s love—acircle without a circumference [no one is on the outside looking in. Everyone is accepted.]—where all life is sacramental.”39All life is sacramental. Sacraments are times when we havean increased expectation to encounter the divine, to commune with God.40Truly, inmoments of grieving, grace, forgiveness and community at the end of life, all life can be,ought to be sacramental. 37Robin Linkhart, "Enduring Principles: All Are Called," Community of Christ,www.cofchrist.org/EnduringPrinciples/called.asp (accessed March 21, 2010).38Letty M. Russell, Church in the Round: Feminist Interpretation of the Chruch (Louisville,Kentucky: Westminster/John Knox Press, 1993).39Belrose, 77.40John G. VanDerWalker, Look to the Sacraments, Thesis for Master of Arts in Religion(Independence, Missouri: Community of Christ Seminary, 2009).
19Creating communities where all are involved, where all life is sacramental and aspecial invitation is extended to those who are otherwise cast out of inviting society requiresone to have solidarity with the marginalized. In this case, the marginalized is the dyingindividual, like Mrs. B. Ethicist Laurie Zoloth describes solidarity as: 41“Cleaving to another, recognizing that the other is the bone of the bone and the fleshof the flesh that is given in common… [all] of the yearning, all of the loss, is, in fact,my loss… [the] encounter is intensely personal. The death of the other, the illness ofthe other, her vulnerability is your own.”The late William Bartholome, a pediatrician and co-founder of the Center forPractical Bioethics in Kansas City, wrote in his journal as he was dying of esophageal cancerthat despite his recent realization that he existed “in a web of relationships that support andnourish [him],”42society routinely “denies aging, mortality and death.” He reports thefeeling of isolation in this way:43“Because I am “marked” by living with … a terminal illness, I am seen andresponded to as an “Other”—as someone to be avoided. Aside from my [family] Ihave no real social life. Yes I go to work every day and yes I have a large list of“friends,” but not people who are willing to embrace both me and the skeleton thatlurks inside me.”Those who are at the end of life are marginalized by a society in denial of mortality, enticedby the modern ideal of eternal youth. A postmodern view of society ought to see dying as anatural part of one’s living, seamless and intertwined; one influences the other. Apostmodern society would look similar to Mrs. B’s family, sitting with her and havingnecessary parting conversations despite their own youth. A postmodern society would bemodeled after The Tribe and the Benedictine Monastics in Atchison, KS who sit vigil. 41Laurie Zoloth, "First, Make Meaning: An Ethics of Encounter for Health Care Reform,"Tikkun, 4, Vol. 8 (Accessed on www.dyingwell.org/jpm0502.htm, 13 April 2010) 133-5.42William Bartholome, "Living in the Light of Death," University of Kansas Bulletin, Vols.45,2:52 (Kansas City, Kansas, 1995).43Ibid.
20Listening to the stories those at the end of life have to share not only honors theirworth as a person but also offers a legacy of stories for those who celebrate their memoryafter death. Sitting with those who are dying recognizes that they are more than just askeleton with intermittent raspy breaths. Sitting with those who are dying is anacknowledgement of our own mortality. Sitting with those who are dying offers sacred spacefor an expectation to encounter the divine; it can be sacramental. This is how we ought tovalue the inherent worth of Mrs. B during her end of life journey, especially when her pain iselusive.ConclusionEvery individual has his or her own vision of what a “good death” looks like. I urgeyou to share your vision of a good death with your loved ones, and listen to theirs.Hopefully, these same individuals will be those who provide you with the ministry ofpresence at the end of life. Together, you can sit with, be with, and listen with one another,creating sacred community. Through sacred community, sacramental love shared cantransform suffering.When imagining a good death, no one anticipates having Terminal Restlessness. It isa rare, tragic situation. From a medical perspective, palliative sedation is an ethical treatmentfor Terminal Restlessness when the level of sedation is proportional to the patient’sintractable suffering and when the intent is to relieve symptoms.44I believe that the ethicpresented by the Enduring Principles offers a valuable guide for how to be with the one who 44American Academy of Hospice and Palliative Medicine , "Statement on PalliativeSedation," September 15, 2006, www.aahpm.org/positions/sedation.html (accessed April 11,2010).
21is sedated, which adds an additional layer to the ethical validity of Palliative Sedation at theend of life for the above-prescribed purposes.I would also like to provocatively suggest that from a Community of Christperspective, perhaps one ought not undergo palliative sedation if they do not first accept theblessings of community or are unwilling to do the work of dying, which could includeByock’s Four Things. From this perspective, with the lens of the Enduring principles, itwould not be ethical for those who desire palliative sedation at the end of life to do so for thepurpose of increased isolation. Although autonomy is highly valued, autonomous individualsexist within community. To be marginalized is one thing, but to actively shun thecommunity around you (as long as it is not an emotionally or physically abusive community)is quite another.The Enduring Principle of Pursuit of Peace encourages us to find peace within oneselfand one’s community, with the help of Byock’s Four Things, preferably before one is in astate of reduced consciousness. The Four Things facilitate conversations that cultivate peacethroughout life. Ideally, the patient with Terminal Restlessness ought to undergo sedationhaving had these crucial conversations with loved ones. Mrs. B did this, and I think it helpedher be at peace with her own decision to undergo palliative sedation. It appeared to help herfamily accept her decision and be at peace, knowing they had those conversations, as well.The Worth of All Persons is acknowledged when we recognize the autonomy of thedying individual and the role it plays in community interactions, especially when theindividual is autonomously forfeiting their autonomy to undergo palliative sedation.Recognizing the inherent worth of those who are dying and sometimes marginalized meansinviting them into the circle of God’s love. Mrs. B’s family showed this by bringing
22celebratory balloons, presents, and a birthday cake to Mrs. B’s hospice room where she couldbe with a part of the circle. Her young adult children showed this by engaging inconversations that forced them to acknowledge both her imminent mortality and the reality oftheir eventual mortality, despite a popular denial.The Enduring Principle of Blessings in Community and the example of The Tribeprovide a template for what it means to sit with the one who is dying. Sedation and reducedconsciousness are appropriately a mystery. I am not sure what Mrs. B experienced afterundergoing Palliative Sedation. I would like to believe that those who are unconscious canstill hear, feel, and sense those around them and the love that is hopefully inherent in thatcommunity. I also know that the love shared in sacred community can transform sufferingfor those who live on and continue to share memories of their beloved who has died. I hopethat the buoyancy felt by The Tribe was perceived on some level by their dying friend.All those I interviewed suggested that they believed that while their loved ones werein diminished states of consciousness, they were in community simply because there wereindividuals who cared for them sitting with them, whispering in their ear, attending to theirphysical and existential comfort. I found this to be the case for Mrs. B as well.When remembering his grandfather’s last days, Tony Chvala-Smith shared that evenwhen his grandfather had diminished consciousness due to a coma,45he was very aware thathe was “known by grandfather” in a way that seemed to transcend consciousness.46Similarly, I would propose that the love shown by Tony while sitting vigil was known to his 45Due to natural end of life reduced consciousness, not from intentional palliative sedation.46Anthony Chvala-Smith, Community of Christ Theologian, interview by Andrea J.Chatburn, Independence, Missouri (April 2010).
23grandfather. Love and community shared at the end of life goes both ways. Sacramentalcommunity transcends consciousness.These Enduring Principles are an ethic—a way of living with and in Christ’s peace ina community, with the perfect example of community found in the Trinity. This is a peacethat seeks to be with those who are marginalized, to sit with those who are dying, to offer aministry of presence and create sacred community. This is how we ought to care for thedying in a way that respects the worth of persons, joins them on the pursuit of peace, andallows them to enjoy the blessings of sacred community—a community for which they werecreated, in the image of God.
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