Dancing with Broken Bones: Poverty, Race, and Spirit-filled

Dying in the Inner City

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forgiveness, gratitude, and love at the end of life. Suffering misfortune that few of us
can imagine, the people whose stories Moller tells reveal the inherent dignity and the
indomitable nature of the human spirit.”
—Ira Byock, MD, author of Dying Well, and Director of Palliative Medicine,
Dartmouth-Hitchcock Medical Center

“For most of us, the lives and deaths of the urban homeless remain invisible and
largely unfathomable. Dr. Moller and his colleagues have had the courage to enter
this world, and to even take medical students with them! In Dancing with Broken
Bones, we too are invited along to witness its tragedies and its humanity. In these
remarkable real-life narratives, we can contemplate what a dignified death might
look like in the face of extreme poverty and homelessness. In doing so, we are invited
to reconsider what is important in our own privileged lives and deaths, and how we
should be caring for those who are far less fortunate.”
—Timothy E. Quill, MD, Professor of Medicine, Psychiatry and Medical
Humanities, Palliative Care Program and Program for Biopsychosocial Studies,
University of Rochester School of Medicine

“Dr. Moller has shed light on the forgotten world of illness and dying in the urban
poor. Through eloquence, grace, and wit, he makes us face what to many is too pain-
ful to contemplate—death that is painful, lonely, and unwanted. This book will serve
as a landmark in the death and dying literature, forcing health professionals and
society at large to work harder toward an equitable system of healthcare for the
living, and the dying.”
—David E. Weissman, MD, Palliative Care Center, Medical College of Wisconsin

“The grace and dignity of humanity is pervasive and memorable in these stories of
living with poverty and fatal illness, but I hope that we are also profoundly moved to
relieve the tragic circumstances that poverty and inept healthcare arrangements
inflicted upon the people whose stories David Moller tells.”
—Joanne Lynn, MD, The Washington Home Center for Palliative Care Studies,
RAND Health, and Americans for Better Care of the Dying
Dancing with Broken Bones
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Dancing with Broken Bones
Poverty, Race, and Spirit-filled
Dying in the Inner City
revised & expanded edition

David Wendell Moller

1
1
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Library of Congress Cataloging-in-Publication Data

Moller, David Wendell.
Dancing with broken bones : poverty, race, and spirit-filled dying in the inner city/David Wendell
Moller.—Rev. & expanded ed.
p.; cm.
ISBN 978-0-19-976013-8 (pbk.) 1. Urban poor—United States—Death—Case studies.
2. Terminal care—United States—Case studies. 3. Death—Social aspects—United States. I. Title.
[DNLM: 1. Terminal Care—United States—Case Reports. 2. Death—United States—Case Reports.
3. Poverty—United States—Case Reports. 4. Poverty Areas—United States—Case Reports.
5. Spirituality—United States—Case Reports. 6. Urban Health—United States—Case Reports. WB 310]
HV4045.M65 2011
362.17'50869420973—dc22 2011004586
__________________________________________________________________________________

987654321
Printed in the United States of America on acid-free paper
In memory of the lives and deaths of the patients
who made this book possible

and

In celebration of those who sacrifice

in honoring the sanctity of all life
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 Poorly Lived,
And poorly died,
Poorly buried
And no one cried.

John Treeo

Pauper’s gravestone as reported by Nathaniel Hawthorne

This page intentionally left blank
 preface

A smile gently graced the face of Ernest as he lay dying. “I feel time is short. I’m
getting close to the fence,” he calmly remarked.
Ernest grew up in the Deep South. He was born in a cabin on November 28, 1917,
in Stevenson, Alabama, that had neither indoor plumbing nor electricity. Home
birth was not unusual in the context of rural Southern poverty at that time. In fact,
home was the place where many in his community, including his siblings, came into
this world. One practical result of not being born in a hospital was that a birth cer-
tificate was never issued to him. Neither was a Social Security number ever assigned.
For most Americans, the idea of not having a birth certificate or Social Security
number would be unfathomable, but for Ernest as a young boy in rural Alabama, it
mattered little. These were merely bureaucratic documents that were inconsequen-
tial to his daily struggle to survive.
Throughout his youth, Ernest lived estranged from the economic and cultural
mainstream. The struggle he and his family faced was real, and life was hard. His
immense physical strength as a boy was an asset that enabled him to work long hours
in the fields and survive the physical rigors of agrarian poverty. Being poor and black
in the segregated South, however, was the curse of his birthright. He lived within a
network of extended family relations for which poverty was not only a present reality
but was both the past and future as well. In fact, the roots of his poverty were directly
traceable to slavery and the life on the plantation that his ancestors lived.
Seeking relief from economic and social hardship and in pursuit of a brighter
future, he migrated north in 1932, winding up in New York City’s Harlem. As a black
man with exclusively rural-based survival skills, employment opportunities did not
abound for Ernest. He survived the best he could, hustling and doing odd jobs. For
eighteen months, his home was a corner newsstand, the day-old papers serving as
his pillow and blanket. He reminisces about this time matter-of-factly and mostly
without bitterness, yet his descriptions of the insufferable heat in the summer, how
he would lie shivering during the cold of the winter, and the hardness of the concrete
floor that served as his mattress and bed declare the degree of physical discomfort
that he endured.
In the years that followed, he moved to and throughout the Midwest. Relationships
with various girlfriends and wives resulted in nine children. Mental health problems

xi
 xii Preface

led to violations of the law and subsequent incarcerations from which he ultimately
escaped. His escape led to a life on the lam, a life he lived for more than three decades.
He worked hard throughout these years, typically as a laborer and sometimes driv-
ing a cab. A false Social Security number was used to obtain employment and driver’s
licenses. In fact, in some of the union-based labor jobs he held, Social Security taxes
were withheld from his pay and presumably deposited into someone else’s account.
How he was able to get away with this deception for all those years is something we
will never know.
During his time in Alabama, lacking documentation and identification meant
nothing. For most of his adult life, through street savvy and skill, he was able to
fudge and make do with false documents and a false identity, but all his success in
deception came crashing down after being diagnosed with untreatable lung cancer.
His physicians in the public hospital, where he was being treated as an “indigent
patient,” referred him to hospice after the diagnosis was made. Hospice immediately
rejected him as a patient, however, because he was not enrolled in Medicare and they
would not be reimbursed for their services. It seemed that the consequences of living
marginalized and undocumented were finally catching up with him.
It was at this point that I first met Ernest. Linda, the social worker in the palliative
care program at County Hospital, had heard about his situation and was on her way
to make a home visit. She invited me along.
He was living in public housing with a friend who was a resident of the building.
House rules allowed him to stay there two weeks, after which he would be required
to move. In her initial assessment, Linda probed a bit about his family background,
residential and work history, eligibility for various services, and what he understood
about his illness. While initially evading most of her questions, he was straightfor-
ward in discussing his diagnosis and prognosis. “I have lung cancer, and they tell me
it can’t be treated,” he stated, looking directly into her eyes. They talked for a while
about how he was feeling and whether he was experiencing distressing symptoms or
pain. Slowly the conversation returned to the seriousness of his illness, and he explained
with ease and certainty that while he wanted to live as long as he could, death did not
frighten him. “I see a mansion in the sky, and it is calling me,” he said. “It has bright
lights; it’s up there,” he noted while looking upward toward the heavens.
In the following days, Linda went to work on his most pressing problem: finding
somewhere for him to live. This was not an easy task given his lack of income, insur-
ance, and identification, but the director of a residence for homeless men discharged
from the hospital stepped up to the plate. Mark provided a safe and comfortable
place for Ernest to live, despite the fact that he was undocumented. Ernest integrated
smoothly into his new environment. He was always glad to receive visitors. I would
bring by medical students who were participating in a home-based educational
 xiii Preface

program designed to unveil the stories and needs of the inner-city dying poor. These
visits were always appreciated, and he seemed to revel in his role as teacher to the
next generation of physicians. Linda visited frequently, and they quickly became
friends. As Ernest grew to trust her, he revealed much about life—its struggles, fail-
ures, and hopes. What mattered most to him at this point was eternal salvation. He
was fearful of going to hell as punishment for the imperfect way in which he lived.
This was a concern that would become somewhat haunting as he anticipated the
ending of his life.
As he grew sicker, and in particular because he was becoming incontinent, he was
told that he would not be able to remain in this transitional residence much longer.
A nursing home placement seemed to be the most appropriate option, but given his
undocumented status, it would also be difficult to arrange. Linda, having anticipated
the need weeks before, had been contacting nursing homes throughout the city. By
dint of heroic effort, she was able to arrange for Ernest, as a charity case, to become
a resident at the nursing home affiliated with County Hospital. This is where Ernest
continues to live, having been there for the past five months.
Throughout his stay Ernest has yearned for social and spiritual connectedness.
His pain and other troubling symptoms have been controlled remarkably well. From
a physical standpoint, he has been generally comfortable, but his spiritual fears and
sense of isolation, especially early on, have been sources of distress. In response,
Barbara, the palliative care team chaplain, established a productive partnership with
him. Along with a religiously devout volunteer, she worked energetically and suc-
cessfully on self-forgiveness, stressing that “God has forgiven, now it is time for you
to do the same.” As a result of strong spiritual support, he started to forgive himself
and his fears of punishment have been eased, and he is now growing able to face the
end of his life with astonishing equanimity.
Linda continues to see him faithfully three times a week. He has grown to love her
deeply, and she him. He waits urgently between visits for her to arrive and is always
sad to see her go. “I pray for my friends every night, and it always brings a smile to
my face,” he says appreciatively.
Just this week he said to her, “I’m moving. Will you help me?” Asked to where he
was moving, he replied, “Heaven.” “Of course I will,” she assured him. Thus, it would
seem that a life that started out grimly, laced with poverty and racism, is ending
peacefully in the nurturing arms of those who work by choice in a public hospital
system in service to the most vulnerable.
This brief snapshot illuminates some of the defining issues of a deeply hidden
experience: dying while living within the confines of urban poverty. Coming to
terms with dying is difficult enough. When poverty, alienation, and disempower-
ment surround the confrontation with mortality, suffering is often exacerbated and
 xiv Preface

further hidden. Even though the general drift of our times is toward denial and
avoidance of dying, recently there has been a splendid outpouring of writing wherein
physicians, psychologists, mystics, and others have explored dying as an opportu-
nity for growth and enlightenment. A common thread that ties much of this work
together is how meaningful self-discovery, self-growth, and self-fulfillment can
emerge in the midst of struggle and suffering. While there is much that is important
in these efforts to break the silence that surrounds death and dying in America,
there is also an unintended bias toward chronicling the experience of those who
are empowered—perhaps even heroic in dying, such as Morrie Schwartz, the hero
in Tuesdays With Morrie. Many of these works discuss the ways individuals and fam-
ilies craft personalized responses to dying and death that involve creative and com-
forting expressions. They make us feel good as we observe their courage and
resilience, as we relate to the sense of empowerment they display. Perhaps, as some
have suggested, the baby boom generation, as it moves through the life cycle, will
begin to transform the ways Americans die. The same sense of empowerment and
individualism that has served the boomers in life, it is speculated, is laying the foun-
dation for transporting the ways of death into expressions that are both inwardly and
outwardly creative and self-assertive. In this framework baby boomers are seeking
responses to death that are consistent with the privileges of affluence and self-
determination that have marked their lives. In fact, the PBS series with Bill Moyers
on the state of dying in America emphasized this phenomenon in its very title: On
Our Own Terms.
There are, however, individuals throughout American society who do not possess
the resources to shape and enact their deaths according to their own wishes, desires,
and terms. Among these are people in the inner city whose lives have been shackled
by poverty. These individuals frequently find themselves unable to assert control
over dying. For them, anger, mistrust, and sadness prevail throughout the process.
Lacking inspiration and revealing despair, their unsettling stories are typically
ignored. In many ways the essence of their struggle in dying is defined by the strug-
gle of having lived in poverty. Even when strength, resilience, and unbroken spirit
govern the course of dying, the stories of the inner-city poor remain untold. Neglect
in dying is therefore reflective of neglect in life, as the life stories of the poor usually
remain unheard and unseen in the everyday flow of American life. It is also fair to
note that unlike Morrie Schwartz’s narrative, their stories do not make us feel good,
a fact that in turn makes them something that most people want to avoid.
In this regard, the purpose of this book is to give a voice and provide a face
to their lives and suffering. In giving a voice to their sorrow, the injustice of poverty,
the evil of racism, and the harm inflicted by inequality will be exposed. Its intent is
also to illustrate their uniqueness as persons in the hope that others will be better
 xv Preface

able to understand and respect their lives, so as to be better positioned to provide

more empathic and culturally competent care near the end of life for this vulnerable
population.
The material presented in Dancing with Broken Bones is the result of three research
initiatives. The first, funded by the Open Society Institute, provided the opportunity
to conduct extensive focus groups with patients, families, providers, and community
members. The second, funded by the Indiana University Research Venture Fund,
enabled a longitudinal study to be done. Patients were identified by staff physicians
as having a life prognosis of twelve months or less. The doctors initially discussed the
purpose of the project with patients. Those who expressed an initial willingness to
participate received further details about the effort and the role they would play.
After agreeing to participate, patients were followed throughout their illnesses to
death. The third project was an elaboration of the second, whereby stories of patients
and families were mined in longitudinal fashion, and student physicians were
brought along to their homes for teaching purposes. The role of the students was to
listen to the stories in the context of home and family so they could arrive at “mind-
ful” understandings of how patients as persons are influenced by their economic,
racial, and cultural backgrounds. This effort was made possible by the support of a
grant from the Clarian Values Fund. Saint Luke’s Foundation of Kansas City sup-
ported an additional home-based educational initiative related to the project.
Those who participated consented to share their stories, having their narratives
audio taped and photos taken throughout the course of their illness experience.
Institutional Review Board consent for each of these related projects was obtained.
Interactions with everyone who participated were loosely structured. The goal was
to establish a relationship with individuals, following and observing them as they
progressed through the process of dying. All conversations, whether in the home or
elsewhere, were taped and transcribed in their entirety. Not only did I read the tran-
scripts in writing this book, I listened to the tapes. Listening quietly to the conversa-
tions that I had previously been part of once again often provided a deepened
understanding of the underlying feelings and experiences of patients and loved ones.
Although some patients expressed a desire to have their real names used, all last
names have been fictionalized.
Throughout this work I found that as relationships developed, trust blossomed.
To a person, all who chose to participate continued to do so with enthusiasm, even
gratitude. They were appreciative of the fact that others were interested in them and
their stories. In allowing their experiences to be recorded and subsequently told,
they chose to give a gift to others. A message I read in their eyes, all the more urgent
for not being spoken, ran something like this: understand not only with your minds
and eyes as you read the narratives and look at the pictures, but with your hearts and
 xvi Preface

souls as well. They hoped, I am sure, that in their dying they might be able to make
a difference, perhaps thereby achieving a final triumph in a life during which they
had been a matter of indifference to so many.
The stories you are about to read portray an invisible, complicated, and some-
times contradictory world. As the experiences of patients and families are revealed,
the uniqueness of each individual will become apparent. Additionally, the portraits
that emerge make vivid not just individual faces. They also reflect the moods, char-
acters, and environments of the individuals. In this way, light is shed on both the
internal and external world of the experience of dying in inner-city poverty. In
extracting generalizations about the “invisible” experience of dying poor, some of
which are hinted at in the brief vignette of Ernest with which I began, the following
points can be made:

• Poverty inflicts substantial harm throughout life.

• Poverty exacerbates indignity and suffering throughout dying.
• Patients and families are often mistrustful and angry about care received.
• Communication problems between physicians and patients are pervasive.
• Patients are grateful for care received.
• Faith plays a prominent role in providing strength and resilience throughout
dying.
• Social isolation intensifies suffering.
• Hidden and sometimes unexpected sources of strength and support emerge from
family and community.
• The emergency room is often the front door to health care.
• The organization of care is frequently fragmented and lacks continuity.
• Funerals are extremely important rituals, and their cost creates enormous stress.

In sum, the urban dying poor are often marginalized by their circumstances, the
result of which is needless and exacerbated suffering. They are fractured by poverty
and racial barriers, but often possess an ironic and perhaps even unexpected capac-
ity to achieve a unique grace and dignity in dying. In this way, it may be said about
them that they dance with broken bones.
 acknowledgments

This book would never have been possible without the support of others. There are
many people to thank. Foremost are the individuals whose stories appear in the fol-
lowing pages. I am grateful to these patients. They have been the greatest teachers in
my life, providing special memories and memorable moments. In many ways they
became unique “friends” in their willingness to participate in a project that was so
deeply personal. As our uncommon relationships grew, they willingly and openly
invited me into some very private parts of their lives. They were happy to know
someone who showed an interest in them, and they wanted their stories to be told so
others might benefit. They will always retain a very special place in my heart for their
generosity, for their willingness to teach, and for making what began as a research
initiative into a life-changing experience for me as a person and professional.
These are miraculous times in health care, and the hospital has become the place
where lives are transformed. It is where heart muscles are kept beating, cancers combat-
ted, and organs transplanted. It is not pressing too far to state, however, that techno-
logical achievement has outpaced and out-resourced the capacity for compassionate
care, applied ethical focus, and commitment to serving the health of all. Thus in the
quest to cure disease and stave off death, we must not overlook the human dimensions
of medicine. This is where the mission and values of narrative medicine, the humani-
ties, the social sciences, and bioethics come into play. Each, with their own special
insights, establishes a framework for understanding the importance of whole-person
care, humanism, and cultural competence in medical practice and education.
I am blessed to have had the support and encouragement of many people whose
influence on my life inform the pages of this book. I am grateful for the ways in
which we share common values around social justice, service to others, and human-
ism in both health care practice and medical education. These individuals represent
all that is right and good about the healing professions and it is my privilege to
thank:

H. Danny Weaver for his support of my efforts to infuse authentic learning expe-
riences in humanism, medical humanities, and bioethics into the curriculum at
KCUMB

xvii
 xviii Acknowledgments

Doug Rushing for his wise counsel and unwavering support

Mike Johnston, Sarah Parrot, Rick Magie, Don McCandless, Josh Cox, John
Dougherty, Maurice Oklaus, and Rick Ogden for being role models for medical
humanism

Bob, “Schwabby,” Schwab for being a trusted confidant and for his investment in
our shared concerns about the importance of the humanities in medicine

Mark McPhee for his appreciation of the role of human values in the practice and
teaching of medicine

Peg Nelson for her friendship and her tireless service to her patients

Jeff Wieman for his continuing support

Rick Butin for his humble ways of serving the poor

Greg, Linda, and Jodi for their commitment to the poor

I would like to express deep gratitude to my editor, Abby Gross, for her commitment
to the Dancing with Broken Bones project. I would also like to thank Deb Mitchell for
her assistance in shepherding me through the tsunami of chaos we regularly face in
our work together.
It has been said that the poor will always be with us, yet despite their seemingly
inevitable presence in American life, they are little understood. As an internal medi-
cine resident remarked when making his first home visit to see a patient who was
dying from Lou Gehrig’s disease, “Even though I knew these neighborhoods existed,
I never really knew these neighborhoods.” A colleague added, “I will never think
about poor people in the same way again.” In this spirit of transformation, as the
stories and lives of the dying poor are revealed and honored in Dancing with Broken
Bones, I hope that others will come to the realization articulated years ago by Mother
Teresa: “The poor, I do not tire of repeating this, are wonderful.”
 contents

Introduction: Dancing with Broken Bones: A Revisit 3

1. Crossing the Tracks 27

2. Dying Poor: An Invisible World of Chaos and Complexity 38

3. Dying in the Public Hospital System: Institutional Arrangements

and Provider Perspectives 59

4. Courage Through Suffering: Narrative Snapshots

of the Dying Poor 81

5. Triumph and Faith Through Harsh Reality and

Personal Tragedy: Lucille Angel 124

6. Life on the Brink: Mr. and Mrs. Wheeler 142

7. A Conclusion: Conscious Listening, Mindful

Presence—A Lesson Learned 183

Epilogue: An Urban Thoreau 188

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Dancing with Broken Bones
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 introduction
dancing with broken bones: a revisit

POVERTY AND DYING: CONVERGENCE OF HUMAN MISERY

AND SOCIAL INVISIBILITY

Ralph Ellison once wrote:

I am an invisible man. No, I am not a spook like those who haunted Edgar Allen
Poe, nor am I one of your Hollywood-movie ectoplasms. I am a man of sub-
stance, of flesh and bone, fiber and liquids—and I might even be said to possess
a mind. I am invisible, understand, simply because people refuse to see me.

The stories in Dancing with Broken Bones also bespeak invisibility. They declare that,
in a culture that seeks avoidance of the realities that surround both poverty and
dying, the urban dying poor are invisible because people “refuse to see them.”
There is great hardship—materially, emotionally, and socially—in living with
poverty. The poor, although ever with us, are not “of us.” To be poor in America is to
be exiled to a place of shame, ridicule, judgment, even disdain. Despite President
Lyndon B. Johnson’s “War on Poverty” in the 1960s, poverty remains a pervasive
part of the American landscape. Instead of a dedicated soul-searching about our
commitment to reducing poverty, the trend over the subsequent decades has been
toward blaming the poor for being poor and a widespread indifference to their
plight. In this framework of blaming the victim, those living in poverty are viewed as
being weighed down by some combination of irresponsibility, incompetence, and
bad luck. This proclivity to blame the poor for their plight establishes a foundation