1. Personhood and Palliative Sedation:
A Community of Christ Response
By
Andrea J. Chatburn
Date: May 12, 2010
Approved:
_____________________________________________________________
David Wendell Moller, Ph.D., Chair and Professor
Department of Bioethics
_____________________________________________________________
Richard O. Randolph, Ph.D., Associate Professor
Department of Bioethics
A thesis submitted in partial fulfillment of the requirements for the degree of
Masters of Arts in Bioethics in the
Department of Bioethics of the College of Biosciences at
Kansas City University of Medicine and Biosciences
2010

2. 2
Thank you to my husband John,
whose patience and incredible support
allowed me to both pursue this degree
and finish such a project.
Thank you also to the following individuals who took the time to allow me to
interview them for this project. They shared both their theology and their intimate stories of
the deaths of loved ones. I acknowledge that these are both sacred and precious memories,
and I thank them for sharing them with me.
David Brock
Tony Chvala-Smith
Charmaine Chvala-Smith
Don Compier
JoAnn Fisher
Barbara Howard
Jennifer Brock-Olson
Thank you to Mrs. B and her family, whose name and personal details have been
changed for the purposes of this paper. I will never forget you.

3. 3
Author’s Statement
This topic is at the forefront of my own consciousness as a burgeoning new doctor
and bioethicist in my own search to find ways to “be with,” sit with, listen to, and comfort
my patients who are nearing the end of life. The concept of a “good death” has emerged in
the American cumulative consciousness over the past two decades. It is increasingly relevant
with the current politics of health care reform and the changing demographic and landscape
in our country’s aging population. My interactions with patients, nurses, chaplains, and
attending physicians at the Kansas City Hospice House have shaped my image of the doctor I
would like to become. Patients like Mrs. B, whom is mentioned in this paper, are imprinted
on my memory and I will carry those experiences with me as I embark on a new career in
medicine.
Additionally, I would like to recognize that choice and comfort in dying looks very
different for those on the political and financial margins of life. Those dying in refugee
camps, from natural disasters like the recent earthquakes in Haiti and Chili, of consequences
of 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 cause
death differ between countries in the Global North versus the Global South simply because of
access to basic human rights such as clean water. Let us not forget that human rights are
being violated around the world daily, and that many do not have the luxury of contemplating
such questions as those below.

4. 4
Table 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

5. 5
Every family does dying differently. But, how do we ethically care for someone who
is 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. B
Mrs. B was a patient of mine during a rotation in hospice as a third year medical
student. She was a woman in her early fifties with three young adult children and an
attentive, solemn husband. When she arrived at the inpatient hospice house in mid-may, she
arrived asking for physician aid in dying, commonly referred to as “assisted suicide.” The
attending doctor and her nurses reminded her that her request is not legal in the state of
Missouri, and then proceeded to sit with her and ask questions to tease out the reasons behind
her request. Mrs. B admitted she was depressed and did not want to suffer. Uncontrolled
pain and nausea were her deepest fears. She did not want to be a burden on her family and
wished that her children would continue doing their regular summer activities rather than
visit with her.
After treating her depression and keeping up with her pain and nausea with various
drugs (while maintaining an acceptable level of social interaction per Mrs. B’s wishes) she
admitted that she was glad she had not undergone physician aid in dying. She was able to
have 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 the
military. She suspected that he was going to propose to his girlfriend at any time, and hoped
he 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

6. 6
cheese every few days and sipped just enough water to take her morning medications. She
seemed very comfortable, and her needs were well attended. This continued for several more
weeks.
Six weeks after her admission to the hospice house, Mrs. B’s son visited from his
military post to celebrate Mrs. B’s birthday. A single bite of chocolate and vanilla marbled
grocery store cake with fluffy white icing and blue lettering was the only food Mrs. B had
eaten in three weeks. She reiterated that she hadn’t expected to be alive for this birthday, but
was glad she was. Admittedly, her hospice care providers were surprised she had reached
this milestone as well.
Seven weeks after her admission to the hospice house, Mrs. B began to have pain and
nausea 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 could
not sleep for over 40 hours, despite sedating medications. There were brief moments of
communication 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 by
something not physically identifiable. It is pain caused by emotional, social, psychological,
and relational distress.1
Unfortunately, most doctors cannot separate physical and existential
pain in healthy patients, let alone those who are dying. 2
Mrs. B’s husband and mother continued to sit with her around the clock and were on
their 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).

7. 7
and just wanted her to feel at peace. Mrs. B had approached what is called “terminal
restlessness.” This is pain, anxiety, and agitation that run deep and elude constant symptom
management from the best that palliative medicine has to offer. It is truly frustrating and
disheartening for all involved.
Once again, Mrs. B asked for physician aid in dying. She simply could not
understand 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 a
legal option. She stated that she was glad she had important conversations with her loved
ones over the past several weeks, but now there was nothing more to do. Her suffering was
now meaningless. Relentlessly, she asked “why am I still here?” This is the crux of
existential pain.
The levels of medication Mrs. B was on to control her elusive symptoms ought to
have been enough to sedate any other patient to the point of unconsciousness, but Mrs. B was
both lucid and in constant agitation. Mrs. B was now asking for sedation as a way to control
her symptoms by relieving her of consciousness. She underwent a form of Palliative
Sedation for the intent of relieving both her physical and existential symptoms, but not to
hasten or cause death.3
Palliative sedation, which includes a spectrum of levels of medical sedation to relieve
pain, was an option for Mrs. B because of her terminal restlessness. Although still
controversial, both statements by the U.S. Supreme Court4,5
and 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).

8. 8
show that palliative sedation does not directly or inadvertently cause death due to either
medication side effects or the patient not being able to eat or drink while sedated. Remember
that 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’s
body was sustained on such little nutrient. Several days later, Mrs. B—still sedated—died
peacefully with her husband, daughter, and mother around her, lifted up in sacred
community.
Mrs. B is the catalyst for my asking, “how ought we be with the one who is dying in
ways that respect their inherent worth as a person?” How does being sedated impact how we
form community? How do we ethically respect the dying person’s autonomy, especially
throughout the process of palliative sedation? These questions are essential to discovering
how to “share the peace of Jesus Christ”10
and to live and act in ways consistent with an ethic
of Christ’s peace.11
Even though one who is sedated is not actively interacting with the community
around them, I would like to suggest that the Community of Christ Enduring Principles
provide a great template for “being with” the one who is dying. Palliative sedation is not
6
M Maltoni, et al, "Palliative sedation therapy does not hasten death: results from a
prospective 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).
10
Stephen M. Veazey, "Share the Peace of Jesus Christ," Community of Christ World
Conference (Independence, Missouri, 2005).
11
Danny A. Belrose, Vulnerable to Grace: A Study and Worship Resource Exploring
Doctrine and Covenants Section 163 (Independence, Missouri: Community of Christ, 2008).

9. 9
something that is taken lightly. I will explore an end of life application of the following
Enduring 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 with
someone who, like Mrs. B, has chosen the rare but important option of Palliative Sedation at
the end of life for terminal restlessness.
Method: The Quadrilateral
My method for examining the Enduring Principles of the Community of Christ is
informed by an understanding of the Wesleyan Quadrilateral. The Wesleyan Quadrilateral is
often used to do theology.12
Traditionally, the Quadrilateral has been utilized as a way of
understanding 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 in
Figure 1. Some imagine the four voices as leading to a spiral. I will use the voices within
the 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, I
would like to propose an expanded quadrilateral, which includes the voice of medicine within
the quadrilateral. The circle surrounding the Quadrilateral represents the context of the
postmodern community in which we live and make medical decisions. A postmodern
community context is appropriate both for describing the Community of Christ interactions
with one another and for palliative medicine within the more modern realm of aggressively
curative medicine. It allows the circle to be colored by culture.
The current culture of medicine in the United States represents a very modern
viewpoint. Modernity splits persons into separate physical and spiritual entities, whereas
12
Christian theology has always relied on the four voices of scripture, tradition, reason, and
experience. It is now popularly referred to as the “Wesleyan Quadrilateral.”

10. 10
postmodernity directly challenges this, recognizing the inseparable interconnectedness of the
two. In this way, Palliative medicine represents a postmodern voice within the medical
community. Palliative medicine is at the forefront of the bio-psycho-social model of
medicine; it allows us to look at life and death differently.
Reason
For Wesley, reason was a tool, not an “independence source of knowledge.”13
In this
way it was, for him, different from the other three principles of scripture, tradition, and
experience. The technology and science of medicine are akin to scripture and tradition as a
source 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, with
double-headed arrows pointing to each of the four points of the quadrilateral, suggesting that
reason is a tool for understanding each of the other principles. Likewise, the double-headed
13
Rebekah 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.

11. 11
arrow suggests that they are in conversation with one another, informing one another as
understanding grows. Perhaps Wesley would have suggested that the arrows represent the
spiritual senses14
by which we perceive and discern.
Experience
Just as the science of medicine is akin to scripture and tradition, the art of medicine is
parallel to the value of experience. In exploring the role of experience for Wesley, Methodist
theologian Randy Maddox recognizes that the term “experience” can be very ambiguous,
meaning one of three things:15
1. Conscious awareness of being affected by an event or action
2. Sympathetic understanding derived from similar subjective experience[s]
3. Practical skill developed through repeated performance
He then suggests that the culmination of these three understandings of experience “lead to
practical/moral wisdom derived from life-long learning.”16
I would suggest that although
each person’s experiential background, which comes from age, education, and life events is
different, each of these aspects is valued. Truly, every one and every family does dying
differently. I suggest this lead toward a balanced respect for individuals in light of their own
experiences.
For the purposes of the topic of care of persons at the end of life, I will use the
Quadrilateral to examine the Enduring Principles in a preliminary fashion only. Scripture,
tradition, experience, and reason are embedded in my analysis, and medicine is represented
by the topic of palliative sedation, which is the common thread throughout the paper.
14
Ibid., 92.
15
Randy Maddox, "The Enriching Role of Experience," in Wesley and the Quadrilateral:
Renewing the Conversation, 108 (Nashville, Tennissee: Abingdon Press, 1997).
16
Ibid.,110.

12. 12
The Enduring Principles are newly articulated recurrent values that come to the
forefront of Community of Christ theology. Although “history informs but does not dictate
our faith and beliefs,”17
the Enduring Principles are consistent with the greater tradition that
historically 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 Enduring
Principles are the ethic, which informs our living. 18
I will be using the lens of the
Quadrilateral discussed above as the means by which I will explore the Enduring Principles
and how they apply to the end of life.
Enduring Principles
The Community of Christ Enduring Principles have been described as being “at the
heart of how [the church] expresses [itself].”19
Throughout the past year, the Enduring
Principles article series has provided the Community of Christ with insight and foundations
for enhancing our communities, congregations, and the world in which we live. They teach
in a new way, our community’s own value system. Now is the time to apply them to the
activities 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 has
either pain due to a chronic illness or is nearing the end of life. When Palliative medicine is
offered at the end of life, it is used synonymously with hospice.
17
Stephen M Veazey, "Perspectives on Church History," Community of Christ,
www.cofchrist.org/OurFaith/history.asp (accessed April 7, 2010).
18
Belrose, 22-25, 42.
19
Barbara P. Howard, "Enduring Principles: Blessings in Community," Community of Christ,
www.cofchrist.org/EnduringPrinciples/community.asp (accessed April 5, 2010).

13. 13
The activities of my life and career path continually interact with those who are
journeying 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 answer
the question, “What ought community look like for one at the End of Life?” How ought we
be with Mrs. B during her end of life journey, especially when her pain is elusive?20
Blessings in Community
The Enduring Principle that proclaims the blessings we find in community must first
begin with the way we view God in the Trinity: Jesus Christ, the Holy Spirit, and God, the
three are one. Imago dei; we were made “in the image of God.” St. Augustine, Bishop of
Hippo in the fourth century, was first to suggest this.21
Augustine described the love inherent
within the relationship of the God, Jesus, and the Holy Spirit calling them “the lover, the
[beloved], and love.”22
God provides a perfect example of love for community in the loving
relationship shown in the model of the Trinity.23
Similarly, God provided a model for living
20
In conversations with Tony Chvala-Smith, Community of Christ Theologian, he
suggested that the sacrament of baptism within the Community of Christ shows some
parallels to palliative sedation in that it is an example of “autonomously forfeiting one’s
autonomy to be acted upon by a community [sedated/baptized].” In baptism, one decides
autonomously, as Community of Christ currently does not accept infant baptism, to submit
oneself to God and the community. There is a moment in baptism where once the individual
chooses; they then take a passive role in community as the sacrament of baptism is
performed. The individual chooses to go through this, chooses to be in the community—both
with God and the church—and then lets the community love them simply because they are a
member of the community. Similarly, in one’s relationship with God there are moments of
submission and passivity. Additionally within the Trinity there are moments of submission
and passivity with the primary example of Jesus Christ submitting to death by crucifixion, as
it is the will of God.
21
Sondra Ely Wheeler, Stewards of Life: Bioethics and Pastoral Care (Nashville, Tennissee:
Abingdon Press, 1996).
22
Saint Augustine, Bishop of Hippo, The Works of Saint Augustine, The Trinity, ed. Edmund
Hill, trans. Edmund Hill, Vol. 5 (Hyde Park, New York: New City Press, 1991).
23
Don Compier, "Enduring Principles: Trinity: God is Love," Community of Christ,
www.cofchrist.org/EnduringPrinciples/trinityLove.asp (accessed March 21, 2010).

14. 14
in community via the community formed by the Trinity. Don Compier, Dean of the
Community of Christ Seminary, suggests that if we are made in the image of God, and God
shows perfect love in community, then we are made in the image of the Trinity and therefore
community; we were created in the image of sacred community.24
I am loved, therefore I am. I am part of community, therefore I am. God exists in
community, and we were created in the image of God, therefore we were created to live in
community. Sondra Wheeler, in her exploration of a Christian bioethic, states that “in our
capacity not merely to exist but to know reflectively that we exist, to love and choose what
we pursue and to know that we are doing so, we reflect the three Persons of the Trinity. It is
how we bear the image of God.”25
During the dying process of a friend, Barbara Howard described how a core group of
five people—thirty individuals in total—who called themselves “The Tribe,” learned to be
with dying.26
They ensured that someone was with their dying friend and her partner around
the clock, making certain to nurture both their physical and spiritual needs. My Benedictine
friends call this “sitting vigil.”27
This is what a community can do to assure that a beloved
friend 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
24
Don Compier, Dean, Community of Christ Seminary, Graceland University, interview by
Andrea J. Chatburn, Independence, Missouri (April 2010).
25
Wheeler 44.
26
Barbara P. Howard, interview by Andrea J. Chatburn, Independence, Missouri (April
2010).
27
This author had the opportunity to go on a retreat on end of life spirituality at the
Benedictine Monastic communities in Atchison, KS in May 2009. The underlying value for
this community was how they “sit vigil” with their fellow monastics who are dying, assuring
that no one dies alone.

15. 15
community of even two. The Tribe embodied sacred community, which reflects the image of
God.
The Tribe sought to make the journey through the end of life of their dying friend as
rich as possible. Barbara and other members of The Tribe describe how during their vigil
process, they felt a “buoyancy” in the midst of a dark time in the life of a friend. She
attributes this feeling of lightness in time of heavy emotional feelings to the strength the
community, or The Tribe, unintentionally provided for one another while attending to a
friend. The blessing of community given to the dying individual lives on within the women
of The Tribe as they continue to share with one another in the blessings of community, even
years later. We are made in the image of the Trinity, and created to be in community with
one another.
To paraphrase Daniel Day Williams,28,29
We either suffer inside of community or outside of community. When a community
shares the suffering of one in its midst, the inherent love, which comes from God and
is modeled in the Trinity by God’s love for Godself, can be transformed into
something 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 during
her end of life journey, especially when her pain is elusive.
Pursuit of Peace
Palliative medicine doctor and author Ira Byock emphasizes that those who are dying
often seek peace with their friends and family members by saying the Four Things: “Please
28
Daniel Day Williams, The Spirit and the Forms of Love (New York, New York: Harper &
Row, 1968) 185-191.

16. 16
forgive me, I forgive you, Thank you, and I Love You.”30,31
and has witnessed that “By
saying these things, people often feel better prepared to say good-bye.”
Byock offers the Four Things as essential conversations for the dying individual and
for their loved ones who live on, saying,32
“The Four Things have lent strength, renewed faith, and rekindled hope in the face of
uncertainty. They affirm our deep connection to one another. Through well- chosen
words, we can celebrate our communality, our humanity, and our individual
uniqueness.”
I would like to suggest that these are necessary conversations as the dying individual seeks
peace for themselves and with the ones they love. It is also essential for their loved ones who
move onward into future relationships while remembering the legacy of the dead, seeking
God’s peace.
The word shalom has been used frequently in the Community of Christ, most
poignantly in the recently canonized passage in Doctrine and Covenants 163:2a, which
states,33
2 a. Jesus Christ, the embodiment of God’s shalom, invites all people to come and
receive 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 all
of the dimensions of salvation.
Although this translates literally to “peace” in English, there is recognition that the word
shalom exceeds any description available in the English language. The Hebrew word shalom
means “completeness, wholeness, health, peace, welfare, safety, soundness, tranquility,
30
Ira Byock, The Four Things That Matter Most: A Book About Living (New York, New
York: Free Press, 2004) 12.
32
Byock, 17.
33
Community of Christ, Book of Doctrine and Covenants (Independence, Missouri: Herald
Publishing House, 2000) 163:2a.

17. 17
prosperity, perfectness, fullness, rest, harmony, the absence of agitation.”34
How ought we
seek God’s shalom with Mrs. B during her end of life journey, especially when her pain is
elusive?
In his commentary on this passage, Danny Belrose states, “God’s peace has to do
with personhood, not property or comfort or convenience, or ambience. It has to do with
personhood that recognizes the inestimable worth of each soul and their interconnectivity.”35
The act of sitting with the dying and offering loving presence can be a way to embody God’s
shalom. To honor the one who is dying and to dare to allow oneself to be uncomfortable
around death but value the peace that the Four Things offer is a way of embodying God’s
shalom.
When remembering the death of his younger sister, David Brock described the agony
and conflict she felt when her family members disagreed regarding her care.36
The night that
Dave’s sister died was the night disagreements were paused and the Four Things enabled
good-byes. Family and close friends remember her husband getting out his guitar for the first
time in a long time and singing love songs to her as she let go. We are truly connected to one
another, and it seems that peace was had on the night that Dave’s sister died. This peace
lives 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. This
is how we ought to seek God’s shalom with Mrs. B during her end of life journey, especially
when her physical or existential pain is elusive.
34
Belrose, 22.
35
Ibid., 23.
36
David R. Brock, Presiding Evangelist, Community of Christ, interview by Andrea J.
Chatburn, Independence, Missouri (April 2010).

18. 18
Worth of Persons
The Enduring Principle that emphasizes the worth of all persons seeks to call our
attention to the giftedness and inherent worth of all those who are pushed to the margins of
society. In some instances, those who have a terminal illness and are in the last months of
their life are marginalized. They are sometimes forgotten because others do not wish to
acknowledge their illness and deterioration or are simply uncomfortable with death.
In the recent Community of Christ canonizations of passages in the Doctrine and
Covenants, sections 163 and 164, it calls individuals to have solidarity with those who are
marginalized. In a commentary on the Enduring Principles, Robin Linkhart states, “God
lives vibrantly in the margins of society—margins that humans create to stratify, classify,
rank, and appoint worth.”37
She 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 are
marginalized.38
In his commentary on section 163, Danny Belrose uses the image of the
circle, saying, “we are called to welcome all who abide within the circle of God’s love—a
circle without a circumference [no one is on the outside looking in. Everyone is accepted.]—
where all life is sacramental.”39
All life is sacramental. Sacraments are times when we have
an increased expectation to encounter the divine, to commune with God.40
Truly, in
moments of grieving, grace, forgiveness and community at the end of life, all life can be,
ought to be sacramental.
37
Robin Linkhart, "Enduring Principles: All Are Called," Community of Christ,
www.cofchrist.org/EnduringPrinciples/called.asp (accessed March 21, 2010).
38
Letty M. Russell, Church in the Round: Feminist Interpretation of the Chruch (Louisville,
Kentucky: Westminster/John Knox Press, 1993).
39
Belrose, 77.
40
John G. VanDerWalker, Look to the Sacraments, Thesis for Master of Arts in Religion
(Independence, Missouri: Community of Christ Seminary, 2009).

19. 19
Creating communities where all are involved, where all life is sacramental and a
special invitation is extended to those who are otherwise cast out of inviting society requires
one to have solidarity with the marginalized. In this case, the marginalized is the dying
individual, 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 flesh
of 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 of
the other, her vulnerability is your own.”
The late William Bartholome, a pediatrician and co-founder of the Center for
Practical Bioethics in Kansas City, wrote in his journal as he was dying of esophageal cancer
that despite his recent realization that he existed “in a web of relationships that support and
nourish [him],”42
society routinely “denies aging, mortality and death.” He reports the
feeling of isolation in this way:43
“Because I am “marked” by living with … a terminal illness, I am seen and
responded to as an “Other”—as someone to be avoided. Aside from my [family] I
have 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 that
lurks inside me.”
Those who are at the end of life are marginalized by a society in denial of mortality, enticed
by the modern ideal of eternal youth. A postmodern view of society ought to see dying as a
natural part of one’s living, seamless and intertwined; one influences the other. A
postmodern society would look similar to Mrs. B’s family, sitting with her and having
necessary parting conversations despite their own youth. A postmodern society would be
modeled after The Tribe and the Benedictine Monastics in Atchison, KS who sit vigil.
41
Laurie 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.
42
William Bartholome, "Living in the Light of Death," University of Kansas Bulletin, Vols.
45,2:52 (Kansas City, Kansas, 1995).
43
Ibid.

20. 20
Listening to the stories those at the end of life have to share not only honors their
worth as a person but also offers a legacy of stories for those who celebrate their memory
after death. Sitting with those who are dying recognizes that they are more than just a
skeleton with intermittent raspy breaths. Sitting with those who are dying is an
acknowledgement of our own mortality. Sitting with those who are dying offers sacred space
for an expectation to encounter the divine; it can be sacramental. This is how we ought to
value the inherent worth of Mrs. B during her end of life journey, especially when her pain is
elusive.
Conclusion
Every individual has his or her own vision of what a “good death” looks like. I urge
you 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 of
presence 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 can
transform suffering.
When imagining a good death, no one anticipates having Terminal Restlessness. It is
a rare, tragic situation. From a medical perspective, palliative sedation is an ethical treatment
for Terminal Restlessness when the level of sedation is proportional to the patient’s
intractable suffering and when the intent is to relieve symptoms.44
I believe that the ethic
presented by the Enduring Principles offers a valuable guide for how to be with the one who
44
American Academy of Hospice and Palliative Medicine , "Statement on Palliative
Sedation," September 15, 2006, www.aahpm.org/positions/sedation.html (accessed April 11,
2010).

21. 21
is sedated, which adds an additional layer to the ethical validity of Palliative Sedation at the
end of life for the above-prescribed purposes.
I would also like to provocatively suggest that from a Community of Christ
perspective, perhaps one ought not undergo palliative sedation if they do not first accept the
blessings of community or are unwilling to do the work of dying, which could include
Byock’s Four Things. From this perspective, with the lens of the Enduring principles, it
would not be ethical for those who desire palliative sedation at the end of life to do so for the
purpose of increased isolation. Although autonomy is highly valued, autonomous individuals
exist within community. To be marginalized is one thing, but to actively shun the
community 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 oneself
and one’s community, with the help of Byock’s Four Things, preferably before one is in a
state of reduced consciousness. The Four Things facilitate conversations that cultivate peace
throughout life. Ideally, the patient with Terminal Restlessness ought to undergo sedation
having had these crucial conversations with loved ones. Mrs. B did this, and I think it helped
her be at peace with her own decision to undergo palliative sedation. It appeared to help her
family 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 the
dying individual and the role it plays in community interactions, especially when the
individual is autonomously forfeiting their autonomy to undergo palliative sedation.
Recognizing the inherent worth of those who are dying and sometimes marginalized means
inviting them into the circle of God’s love. Mrs. B’s family showed this by bringing

22. 22
celebratory balloons, presents, and a birthday cake to Mrs. B’s hospice room where she could
be with a part of the circle. Her young adult children showed this by engaging in
conversations that forced them to acknowledge both her imminent mortality and the reality of
their eventual mortality, despite a popular denial.
The Enduring Principle of Blessings in Community and the example of The Tribe
provide a template for what it means to sit with the one who is dying. Sedation and reduced
consciousness are appropriately a mystery. I am not sure what Mrs. B experienced after
undergoing Palliative Sedation. I would like to believe that those who are unconscious can
still hear, feel, and sense those around them and the love that is hopefully inherent in that
community. I also know that the love shared in sacred community can transform suffering
for those who live on and continue to share memories of their beloved who has died. I hope
that 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 were
in diminished states of consciousness, they were in community simply because there were
individuals who cared for them sitting with them, whispering in their ear, attending to their
physical 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 even
when his grandfather had diminished consciousness due to a coma,45
he was very aware that
he was “known by grandfather” in a way that seemed to transcend consciousness.46
Similarly, I would propose that the love shown by Tony while sitting vigil was known to his
45
Due to natural end of life reduced consciousness, not from intentional palliative sedation.
46
Anthony Chvala-Smith, Community of Christ Theologian, interview by Andrea J.
Chatburn, Independence, Missouri (April 2010).

23. 23
grandfather. Love and community shared at the end of life goes both ways. Sacramental
community transcends consciousness.
These Enduring Principles are an ethic—a way of living with and in Christ’s peace in
a community, with the perfect example of community found in the Trinity. This is a peace
that seeks to be with those who are marginalized, to sit with those who are dying, to offer a
ministry of presence and create sacred community. This is how we ought to care for the
dying in a way that respects the worth of persons, joins them on the pursuit of peace, and
allows them to enjoy the blessings of sacred community—a community for which they were
created, in the image of God.

24. 24
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