‘‘I’m Sitting Here By Myself...’’: Experiences of Patients
with Serious Illness at an Urban Public Hospital
Virginia Dzul-Church, M.D.,1Jenica W. Cimino, B.A.,1Shelley R. Adler, Ph.D.,2
Piera Wong, R.N., M.S., C.N.S.,3and Wendy G. Anderson, M.D., M.S.4
Objective: To describe experiences of serious illness including concerns, preferences, and perspectives on im-
proving end-of-life (EOL) care in underserved inpatients.
Methods: Qualitative analysis of 1-hour interviews with inpatients at a public hospital whose physician ‘‘would
not be surprised’’ by the patient’s death or intensive care unit (ICU) admission within a year. Patients who were
non-English speaking, lacked mental capacity, or had uncontrolled symptoms were excluded. A semistructured
interview guide was developed and used for all interviews. We digitally recorded, transcribed, and conducted a
thematic analysis of the interviews.
Results: Twenty patients participated. Difficult events such as estrangement, homelessness, substance abuse,
and imprisonment shaped patients’ approaches to serious illness. This influence manifested in interpersonal
relationships, conceptualizations of death and concerns about dying, and approaches to coping with EOL.
Because patients lacked social support, providers played significant roles at EOL. Patients preferred honest
communication with providers and sharing in medical decision-making. A prolonged dying process was feared
more than sudden death. Concerns included pain, dying in the hospital, and feeling unwelcome in the hospital.
Patients coped by advocating for their own care, engaging with religion/spirituality, and viewing illness as
similar to past trauma. Participants suggested that providers listen to their concerns and requested accessible
chaplaincy and home-based services.
Conclusions: Providers should consider that difficult life events influence underserved patients’ approaches to
dying. Attention to patients’ specific preferences and palliative care in public hospitals and locations identified as
home may improve care for patients who lack social support.
pies that are inconsistent with their preferences.1,2Although
there is little research about the end of life of patients with
underrepresented cultural and disadvantaged educational
and socioeconomic backgrounds, limited data suggest that
these patients have worse experiences than the general pop-
ulation.3–15For example, studies indicate that ethnic and ra-
hospice is underutilized by minorities.9,10,17,18The homeless
underuse hospice for financialand logistical reasonsand have
high rates of mental illness and substance abuse that com-
plicate the dying process.19
t the end of life, most Americans suffer from pain and
other distressing symptoms and receive medical thera-
Palliative care services were developed to improve pa-
tients’ end-of-life experience by addressing physical, emo-
tional, and existential suffering.20–24Because palliative care is
patient-centered, understanding patient experiences is crucial
for designing and improving palliative care services.Previous
research elucidates elements of a ‘‘good death’’ in insured
populations with sufficient social support.25However, our
understanding of what constitutes a quality death for urban
underserved patients is incomplete.26Descriptive studies of
the homeless found unique attitudes, end-of-life preferences,
and barriers to care, but the study participants did not have
life-limiting illness.13,14,26–28Although the disenfranchised
frequently receive end-of-life care in the hospital, little re-
search focuses on the experiences of underserved patients
in this setting.22Therefore, we interviewed seriously ill
1School of Medicine,2Family and Community Medicine and Osher Center for Integrative Medicine,4Division of Hospitalist Medicine and
Palliative Care Program, UCSF, San Francisco, California.
3Department of Hematology/Oncology and Public Health Department, San Francisco General Hospital, San Francisco, California.
Accepted January 14, 2010.
JOURNAL OF PALLIATIVE MEDICINE
Volume 13, Number 6, 2010
ª Mary Ann Liebert, Inc.
inpatients at an urban public hospital and conducted a qual-
itative analysis to better understand their concerns, prefer-
ences, and perspectives on improving end-of-life care.
Setting and participants
The study was conducted at a university-affiliated public
hospital in San Francisco, California, which is a center of care
for underserved patients including homeless, ethnic and ra-
cial minority, and immigrant populations. During the data
collection phase, November 2008 through January 2009, the
hospital did not have inpatient palliative care services. We
included patients with a terminal illness diagnosis whom the
senior housestaff physician would not be surprised if the
patient died or was admitted to the intensive care unit (ICU)
within 1 year.29We excluded patients who were non-English
speaking, mentally incapacitated, unaware of their diagnosis,
or otherwise unable to consent to or participate in the inter-
view process. Patients were recruited from six nursing units
that serve the internal medicine and family medicine de-
partments. Senior housestaff were contacted on a daily basis
to identify eligible patients, who were then approached in
their hospital room and screened for participation. The Uni-
versity of California, San Francisco, Committee on Human
Research and the San Francisco General Hospital Dean’s Of-
fice granted approval for this study and all participants gave
written informed consent.
A semistructured interview guide (available upon request)
was developed and used for all interviews. The guide con-
sisted of open-ended questions about the patient’s life and
understanding of his/her disease, the impact of the illness,
perspectives on death and dying, and suggestions about how
to improve care. A single interviewer (V.D.C.) conducted all
interviews, which were approximately 1 hour in length. All
interviews were digitally recorded and transcribed verbatim.
We collected data and analyzed transcripts concurrently,
conducting interviews until themes repeated and new themes
did not emerge.30–33
We conducted a thematic analysis of all interview tran-
cripts.25,30–35First, two researchers (V.D.C. and J.W.C.) inde-
pendently read all transcripts to identify attributes. These
primary coders then compared attributes, grouped them into
preliminary themes, and created an initial codebook by col-
lapsing the themes into categories. The codebook was itera-
tively modified by applying it to sequential subgroups of
transcripts to ensure that each code was explicit and clear,
then checked for reliability by another researcher (S.R.A.),
who used it to code a subset of transcripts. In a first-pass of
coding, the two primary coders independently applied the
final codebook to all transcripts, involving another coder
(W.G.A.) to resolve discrepancies. During a second-pass of
coding, we further explored associations among themes by
comparing within and among codes in all transcripts to elu-
cidate conceptual domains. Through this process, the initial
categories were collapsed into the format presented in the
results section: a description of the participants’ lives, how
their past histories influenced end-of-life, and their sug-
gestions about how to improve end-of-life care. Last, we
compared domains that emerged from this study to those
supported by previous literature exploring end-of-life con-
cerns both in general and underserved populations.13,14,25,26
We used ATLAS.ti version 5.2 (Atlas.ti, Berlin, Germany)
software for coding and tracking of themes and exemplar
Of 333 patients who were screened during the data col-
lection period, 32 were eligible. Ten could not be approached
because theyweredischarged (n¼9)ortransferredtotheICU
(n¼1). Twenty patients (91% of 22 who were approached)
consented and were interviewed. The participants’ socio-
demographic characteristics are shown in Table 1. Their mean
age was 54.5 years (range, 38–78 years); 65% (n¼13) were
men, 30% (n¼6) women, 5% (n¼1) male-to-female trans-
gender, 35% (n¼7) Hispanic, and 30% (n¼5) African
American. One third (n¼7) were homeless or marginally
housed, and 25% (n¼5) had active and 60% (n¼12) had past
substance abuse. Participants’ gender, ethnicity/race, living
arrangements, and substance abuse profiles represented the
English-speaking population served by the study hospital.36
Participants’ life-limiting diagnoses were: cancer (55%,
n¼11), end-stage liver disease (25%, n¼5), chronic obstruc-
tive pulmonary disease and congestive heart failure (10%,
Table 1. Sociodemographic Characteristics
of Study Participants
54.5 (38–78)Age, mean (range)
Ethnicity, n (%)
Race, n (%)
Black or African American
American Indian/Alaska Native
Other (mixed Latino/Pacific Islander)
Living arrangements, n (%)
Live with relatives
Live with spouse or partner only
Live in health related facility
Diagnosis, n (%)a
End-stage liver disease
Chronic obstructive pulmonary disease
Congestive heart failure
Substance abuse, n (%)
aDiagnoses sum to more than n¼20 because some patients had
more than one terminal diagnosis.
2 DZUL-CHURCH ET AL.
n¼2), and human immunodeficiency virus/acquired im-
mune deficiency syndrome (HIV/AIDS); 10%, n¼2).
Difficult life histories
Participants’ lives were marked by difficult life events: loss
of relationships, homelessness, substance abuse, imprison-
cervical cancer discussed losing custody of her children after
I went to a rehabilitation program to get my kids back, and I
check...and I relapsed...so I lost my babies again.
A man dying of alcohol-induced liver failure discussed his
life as a convict:
...I mean damn near every jail in California...I think I’ve
been in every jail there is on this side of the bay. Being a tough
guy and all that crap. I loved misery.
A homeless heroin addict with advanced HIV/AIDS
shared a traumatic experience when asked if she had finished
[School] wasn’t much my thing. My dad went to prison for
killing my mom when I was nine.
These difficult life histories manifested at end-of-life in
three domains: interpersonal relationships, conceptualization
of death and concerns about dying, and approaches to coping
Participants who lacked family and friends yearned for
company and support at end of life. They expressed regret
about estrangement from meaningful relationships and iso-
lation,loneliness, andself-reproach. Oneparticipant,wholost
her children due to drug addiction, spoke hypothetically to
one of her estranged daughters:
loved you...I was in my addiction...But I just pray that all
my kids find it in their heart to forgive me...that wouldbe the
most comfortin the world right there for me.I don’t care about
no pain, no nothing, as long as I have my babies again.
Another participant expressed regret for losing contact
with his wife and son because of alcoholism:
I made a horrible life on this earth. I’ve got no right to even be
accepted on this planet. I don’t deserve to live...I see misery.
Nothing happy, nothing sacred...it’s all blues. I wake up
dreaming about death. I go to sleep dreaming about death. I
count the days and miss my son. I miss my wife.
A participant from Puerto Rico, who had been living in the
United States alone for over 30 years, discussed his loneliness:
I’m sitting here by myself. And just like everybody else, I need
the company of somebody and to have the family. I need my
In the setting of minimal social support, relationships with
health care providers were a source of comfort. One partici-
pant, estranged from his family and dying of esophageal
cancer, described his medical providers and himself as
members of one ‘‘team’’ united for a common purpose:
There’s good work to be done. It’s like a team effort. If you’re a
team and they’re all together working with the patient itself,
it’s going to work out really good.
Another man credited his survival to his close relationship
with his doctor:
I [appreciate him]. He is the man as far as I’m concerned. [He
helped me by] just being there...just being himself. If he
here right now...probably dead or something.
Conceptualization of death and concerns
Participants described previous exposures to death as
sudden and violent in nature. Sudden death was the expected
and thus, less frightening way to die. Because a prolonged,
painful dying process went against this conceptualization of
death, it was terrifying. One man discussed the attributes of
sudden versus prolonged death:
I guess it depends on what disease you have, if it’s a long
drawn out thing or if you die fast. Cancer to me is kind of a
medium thing...it doesn’t kill you fast but it kills you slow-
ly...live fast...it’skindof likealmostyoudiefast.I’ve almost
died already a couple times...you die fast. That’s good.
This participant illustrated the agony of a prolonged dying
Cancer is the worst thing that can happen to a man...espe-
especially when he can’t do nothing about it except hope and
pray that he either gets well or dies...I cry like a little baby. I
Pain was a concern in the dying process, and patients were
aware that their past histories could worsen their pain and
symptom management. One heroin addict dying of HIV/
I don’t see any reason why I should be in pain. They ain’t got it
under control. They keep thinking because I’m a heroin addict
I’m trying to get more pills...I can go buy my own shit, you
know? If I wanted to get drugs from them, I would have did it
in a little bit more of a sophisticated way than this...
With regard to the location of end-of-life care, participants
discussed dying at a place identified as home, which might be
marginal housing, but were resigned to dying in the hospital.
Although he preferred dying at home near his estranged
family, when asked if dying in the hospital was acceptable to
him, one man said:
Not something I planned on, no. But it’s pretty much going to
be inevitable. I don’t got too much ways to look at it.
Those with family felt that dying in the hospital would be
less burdensome for their loved ones. Another participant
discussed how dying in the hospital would be better for his
family, but had not yet clarified his preferences with them:
It would be more convenient for my family if I was to pass
away here [the hospital], because then they could start my
funeral arrangements going...No [I haven’t talked about
these things with them].
Participants also discussed concerns about treatment of
their bodies after death. One woman expressed her concerns
for the placement of her remains:
PATIENTS WITH SERIOUS ILLNESS AT AN URBAN PUBLIC HOSPITAL3
I don’t even have a casket, or even where they’re going to bury
me or nothing. That’s also essential too, because then if you
don’t know if they’re going to put you close to, I don’t know;
maybe the garbage.
Approaches to coping with serious illness
Patients coped with serious illness by comparing it to past
experiences, advocating for themselves, and relying on reli-
gion orspirituality. They viewed serious illnessas similarly or
less challenging when compared to prior struggles. One
woman shared the moment in her life that changed her per-
spective on ‘‘bad news’’:
I was 11 years old and my mother dropped dead. So after that,
when news comes, news comes. Nothing can’t [affect] me after
Participants also voiced the need for self-advocacy
in meeting their goals of care. One woman discussed a
health care encounter during which she engaged in self-ad-
She was screaming at me, and I didn’t like that. But I told the
doctor about it...afterwards, the nurse was nicer to me; she
realized I speak up, that I wouldn’t keep my mouth shut.
Others described how their disempowered social standing
manifested as helplessness in the hospital. For example, one
man did not speak up when he felt uncomfortable during
bathing by staff:
...Better to be thought of as a fool than to open your mouth
and remove all doubt, I ain’t trying to make nothing out of
it...[they were] acting more like kids than profession-
als...like they weren’t looking at the whole person.
Another man commented on his concern for dis-
empowered patients and the role of self-advocacy in the
to do anything about [their care], or not smart enough to do
anything about [their care], don’t voice their opinions and they
just take it. But I’m not one to take it.
Religion and spirituality played a significant part in the
repertoire of coping strategies. One homeless woman de-
scribed how important her belief in God and Heaven was in
her daily life and the dying process:
[God] keeps me safe and sane. Keeps me from jumping over a
bridge...and I tell him how I feel. I feel a little terrified...the
onlythingI’m goingtomissisthe streets.I’mgoingto missmy
buddies.Mostof themdied,so mostof themaregoingto beup
there waiting for me.
Suggestions for improving care
Participants suggested improved relationships with pro-
viders (doctors, nurses, and aides), accessible chaplaincy
services, and home-based services. Regarding relationships
with providers, participants described feeling unwelcome in
I can see where the wheels are turning and people are thinking
should he be here? Is he costing us too much? Is he an outpa-
tient? Or is he a hospice patient? Don’t make him too com-
be in a hospital. That’s not what we do—I can feel it from the
staff. Their job is not to wipe my butt.
Another patient echoed this concern:
Some of these people look at me like I’m over here trying to
rent a room. Well...this is not a hotel. This is not like just
calling up room service, or saying, ‘‘Can you make my Jacuzzi,
They felt the experience could be improved by a more
humanistic approach. One woman expressed:
I think every patient deserves to be treated with love and re-
spect...think of them not that they’re just kind of specimens,
but they’re human beings...ask the patient what they feel...I
want to talk to somebody maybe about what I’m feeling that
day, just to have a conversation with them.
Participants voiced their perception of a therapeutic effect
of being listened to in the context of the study interview.
When asked how the doctors could make him more com-
fortable, one participant said to the interviewer:
Talk to me like you’re doing. That makes me happy.
The need for more accessible chaplaincy services was also a
suggestion for improvement:
...they could bring the father here more often so you get
communion. Because they want people going downstairs [for
mass]...if you go in a wheelchair, usually you don’t have
underwear on—when you get up to get communion...ev-
everybody’s looking at your rear end.
Last, patients desired home-based medical services, re-
room occupancy (SRO), a form of marginal housing. One
woman requested medical/ palliative services at her SRO:
I need a doctor to come see me...a nurse or whatever. I’m
getting too weak to [take care of myself]. It’s coming...the
hair...make [me look pretty again].
To better understand the end-of-life experience of urban
underserved patients we interviewed 20 English-speaking
seriously ill patients at a public hospital. We found that dif-
ficult life histories impacted end-of-life experiences and
patient–provider interactions in the domains of interpersonal
relationships, conceptualization of death and concerns about
dying, and approaches to coping with end-of-life.
Participants felt improving relationships with providers,
accessible chaplaincy services, and home-based services
would enhance care. These results contribute to understand-
ing the experiences of serious illness and frame the provision
of palliative care services in this population.
Our participants identified factors similar to those in the
study by Steinhauser et al.25of what constitutes a ‘‘good
death’’ (that study did not focus on underserved patients):
pain and symptom management, clear decision-making,
preparation for death, completion, and affirmation of the
whole person. Our participants’ life-situations often com-
promised actualizing these values. Drug addiction often
complicates pain management, and our participants per-
ceived providers’ reluctance to provide adequate pain
4DZUL-CHURCH ET AL.
medication because of drug abuse histories.37–40Similar to
Steinhauser and coauthors25findings, this cohort preferred
open communication with providers about diagnosis/prog-
nosis and participation in medical decision-making. How-
ever, at times communication with providers felt rushed, and
lacked focused listening. Preparation for death was seen as
important, but there was little action to plan for death with
respect to location of death and disposal of remains. The de-
sire for completion involved estrangement and loss of rela-
tionships, but participants lacked opportunity or resources to
make amends and attain completion. Finally, patients wanted
affirmation of the whole person, treating each patient as a
unique, complex person in the context of their histories and
the whole person was not considered.
We identified themes similar to Song and associ-
ates’13,14,26,27work with homeless persons who were not se-
riously ill: a desire to discuss end-of-life concerns, seeing
death as a sudden and often violent phenomenon, concerns
about dying alone, fear that the body will not be respected
after passing away, poor social support, poor provider
attitudes causing barriers for care such as pain management,
and the importance of religion. We confirm how lacking or
strained relationships are common in this population and
greatly influence the end-of-life experience. Patients that live
estranged lives did not necessarily want similarly isolated
deaths. This influences both completion and interaction with
providers. Our participants saw providers as ‘‘family’’ or
‘‘team’’ members who could provide support and focused
listening. Ostensibly,due tominimalsocialsupporttheroleof
the provider is more intimate than one might find in the
Some of our findings diverged from Song and coworkers.
Whereas Song’s participants feared a violent death, our par-
ticipants feared a prolonged death—painful, alone, and
muddled with regrets. For our participants, the experience of
prolonged illness contradicts a possible conceptualization of
death in this population. Whereas sudden death, normally
observed in everyday life, is not feared, dying of terminal
illness is terrifying.
Perceptions of ‘‘unwelcomeness’’ in health care encounters
have been discussed involving nonseriously ill participants
‘‘unwelcome’’ remains true while hospitalized and can be
burdensome and undeserving of care, specifically regarding
assistance with activities of daily living. This must be reme-
died for underserved patients for whom the hospital and staff
may be the last ‘‘home’’ and relationships experienced before
While our participants’ histories often decreased the qual-
ity of their end-of-life experiences, they also provided coping
strategies. Serious illness was another obstacle for our par-
ticipants, paling in comparison to loss of relationships, per-
sonal violence, and addiction. This led to an acceptance of
death as a ‘‘what happens, happens’’ phenomenon—just an-
other difficulty to overcome. The importance of self-advocacy
to achieve preferences for care was a prominent theme. Many
of these patients are self-reliant and resourceful for every-day
survival and use these techniques to navigate the health care
system while hospitalized. However, the opposite was also
seen; those ‘‘beaten down’’ by life feel powerless to advocate
for their well-being in the hierarchical hospital system. We
encourage providers to be aware of this phenomenon, check-
in with patients, and be prepared to be patient advocates.
Our study provides hope that the experience of seriously
ill patients in public hospitals can be improved. Patient-
suggested improvements, including better communication
with providers, home-based medical services, and chaplaincy
access, are targets of hospice and palliative care services.20–23
With regard to relationships with providers, patients re-
quested that someone sit and listen to them; this had a ther-
apeutic effect and is a primary component of palliative care.
Prominent despair and hopelessness at end-of-life may
reflect frequent psychiatric comorbidity in this population
and managing psychiatric illness is another way interdisci-
plinary palliative services can improve care. Additionally,
chaplaincy services are an essential component of palliative
participants, can provide a huge measure of comfort. Similar
to past studies,25though our participants accepted passing
away in the hospital, many preferred to pass away at home,
even though the ‘‘home’’ they identified was often marginal
housing or the streets. Providing home-based medical ser-
vices can be challenging for homeless or marginally housed
patients, but may be key to improving the quality of dying for
patients whose identity and social support are in these loca-
Other literature supports the idea that inpatient and home-
based/shelter-based palliative care at public hospitals can
fulfill a gap in care and address unique needs in these popu-
lations.19,22,42These services can help providers attend to the
‘‘welcomeness’’ perceived by patients, the great interpersonal
needs, and preparing for a relatively prolonged dying process
in comparison to conceptual expectations of death. Having
interdisciplinary palliative care services in these settings can
facilitate more personal, less rushed communication with
these patients, who may view the hospital staff as a more
significant part of their end-of-life experience than the general
Our study has limitations. First, we focused on the English-
speaking subset as a starting point, but non-English speakers
are a significant segment of the urban underserved and face
distinct barriers to communication and provision of care.
Second, caregiver and provider perspectives were not elicited
and are important aspects of end-of-life care. Future studies
should include the experiences of non-English–speaking pa-
tients, providers and caregivers to further understand cross-
cultural and multiperspective aspects of end-of-life care.
Additionally, our study enrolled more men than women for
unclear reasons. Although the public hospital reports serving
equal numbers of men and women (of all languages36), it may
be that the English-speaking population or patients with se-
rious illness at this hospital are predominantly male. Never-
theless, our study sufficiently represented women. Finally,
our study was conducted at one location, which limits the
diversity of end-of-life experiences that are represented. Lar-
ger studies at more locations are needed to confirm our
findings. Our results could be used to design surveys or pa-
tient satisfaction instruments that are sensitive to the needs of
the subset of underserved populations represented in this
In conclusion, when caring for underserved inpatients
at end-of-life, providers must consider the ways in which
PATIENTS WITH SERIOUS ILLNESS AT AN URBAN PUBLIC HOSPITAL5
difficult histories influence the patient experience. Although
each end-of-life experience is unique, there are established
‘‘universal’’ components of a quality death.25Underserved
patients may require more intensive, tailored approaches to
care given prolific difficult life events and minimal social
support. Good communication, attention to patients’ specific
preferences and inpatient/home-based palliative care services
in public hospitals may improve the experience for margin-
alized patients with serious illness.
The study expenses and Ms. Dzul-Church’s stipend were
supported by The Pathways to Careers in Clinical and
Translational Research (PACCTR) program, which is funded
by National Institutes of Health grant 1 TL1RR024129-03, the
Doris Duke Charitable Foundation, and University of Cali-
fornia, San Francisco. Dr. Anderson was supported by a Ju-
nior Faculty Career Development Award from the National
Palliative Care Research Center.
Author Disclosure Statement
No competing financial interests exist.
1. The SUPPORT Principal Investigators: A controlled trial to
improve care for seriously ill hospitalized patients. The
study to understand prognoses and preferences for out-
comes and risks of treatments (SUPPORT). JAMA 1995;274:
2. Pantilat SZ, Isaac M: End-of-life care for the hospitalized
patient. Med Clin North Am 2008;92:349–370, viii–ix.
3. Im EO, Guevara E, Chee W: The pain experience of Hispanic
patients with cancer in the United States. Oncol Nurs Forum
4. Im EO, Lim HJ, Clark M, Chee W: African American cancer
patients’ pain experience. Cancer Nurs 2008;31:38–46; quiz
5. Im EO, Liu Y, Kim YH, Chee W: Asian American cancer
patients’ pain experience. Cancer Nurs 2008;31:E17–23.
6. Cleeland CS, Gonin R, Baez L, Loehrer P, Pandya KJ: Pain
and treatment of pain in minority patients with cancer. The
Eastern Cooperative Oncology Group Minority Outpatient
Pain Study. Ann Intern Med 1997;127:813–816.
7. Daneault S, Labadie JF: Terminal HIV disease and extreme
poverty: A review of 307 home care files. J Palliat Care 1999;
8. Degenholtz HB, Thomas SB, Miller MJ: Race and the inten-
sive care unit: Disparities and preferences for end-of-life
care. Crit Care Med 2003;31(5 Suppl):S373–378.
9. Gibson R: Palliative care for the poor and disenfranchised: A
view from the Robert Wood Johnson Foundation. J R Soc
10. Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS:
Knowledge, attitudes, and beliefs about end-of-life care
among inner-city African Americans and Latinos. J Palliat
11. Tamayo-Sarver JH, Hinze SW, Cydulka RK, Baker DW:
Racial and ethnic disparities in emergency department an-
algesic prescription. Am J Public Health 2003;93:2067–2073.
12. NIH: National Institutes of Health State-of-the-Science
Conference Statement on Improving End-of-Life Care. 2004.
html.htm (Last accessed October 4, 2009).
13. Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ah-
luwalia JS: Dying on the streets: Homeless persons’ concerns
and desires about end of life care. J Gen Intern Med 2007;
14. Song J, Ratner ER, Bartels DM: Dying while homeless: Is it a
concern when life itself is such a struggle? J Clin Ethics 2005;
15. Hughes A: ‘‘Can you give me respect?’’: Experiences of the
Urban Poor with Advanced Disease [School of Nursing
dissertation]. San Francisco, CA: University of California,
San Francisco, 2007.
16. Morrison RS, Wallenstein S, Natale DK, Senzel RS, Huang
LL: ‘‘We don’t carry that’’—Failure of pharmacies in pre-
dominantly nonwhite neighborhoods to stock opioid anal-
gesics. N Engl J Med 2000;342:1023–1026.
17. Crawley L, Payne R, Bolden J, Payne T, Washington P,
Williams S: Palliative and end-of-life care in the African
American community. JAMA 2000;284:2518–2521.
18. Smith AK, Davis RB, Krakauer EL: Differences in the quality
of the patient-physician relationship among terminally ill
African-American and white patients: Impact on advance
care planning and treatment preferences. J Gen Intern Med
19. Kushel M, Markowitz AJ, McPhee SJ: End-of-life care for
homeless patients: ‘‘She says she is there to help me in any
situation.’’ JAMA 2007;297:305.
20. Hallenbeck J: Palliative Care Perspectives. New York: Oxford
University Press, 2003.
21. Field MJ: Approaching Death: Improving Care at the End of Life.
Field MJ. Washington, D.C.: National Academy Press, 1997.
22. Kvale EA, Williams BR, Bolden JL, Padgett CG, Bailey FA:
The Balm of Gilead Project: A demonstration project on end-
of-life care for safety-net populations. J Palliat Med
23. O’Mahony S, Blank AE, Zallman L, Selwyn PA: The benefits
of a hospital-based inpatient palliative care consultation
service: Preliminary outcome data. J Palliat Med 2005;8:
24. Ciemins EL, Blum L, Nunley M, Lasher A, Newman JM: The
economic and clinical impact of an inpatient palliative care
consultation service: A multifaceted approach. J Palliat Med
25. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA,
McIntyre LM, Tulsky JA: In search of a good death: Ob-
servations of patients, families, and providers. Ann Intern
26. Song J, Ratner ER, Bartels DM, Alderton L, Hudson B, Ah-
luwalia JS: Experiences with and attitudes toward death and
dying among homeless persons. J Gen Intern Med 2007;22:
27. Song J, Wall MM, Ratner ER, Bartels DM, Ulvestad N,
Gelberg L: Engaging homeless persons in end of life prep-
arations. J Gen Intern Med 2008;23:2031–2036; quiz 2037–
28. Tarzian AJ, Neal MT, O’Neil JA: Attitudes, experiences, and
beliefs affecting end-of-life decision-making among home-
less individuals. J Palliat Med 2005;8:36–48.
29. Koropchak CM, Pollak KI, Arnold RM, et al.: Studying
SCOPE Trial. Palliat Med 2006;20:813–819.
30. Strauss A, Corbin J: Basics of Qualitative Research. Thousand
Oaks, CA: Sage Publications, 1990.
6 DZUL-CHURCH ET AL.
31. Creswell JW: Research Design: Qualitative, Quantitative and
Mixed Methods Approaches. Thousand Oaks, CA: Sage Pub-
32. Steinhauser KE, Barroso J: Using qualitative methods to ex-
plore key questions in palliative care. J Palliat Med 2009;12:
33. Evans WG, Cutson TM, Steinhauser KE, Tulsky JA: Is there
no place like home? Caregivers recall reasons for and ex-
perience upon transfer from home hospice to inpatient fa-
cilities. J Palliat Med 2006;9:100–110.
34. Braun V, Clarke V: Using thematic analysis in psychology.
Qual Res Psychol 2006;3:77–101.
35. Charmaz K: Constructing Grounded Theory. London: Sage
36. O’Connell GM: San Francisco General Hospital Annual
Report to the Health Commission. San Francisco: San
Francisco General Hospital; December 2005, pp. 1–15.
accessed October 4, 2009).
37. Collins ED, Streltzer J: Should opioid analgesics be used in
the management of chronic pain in opiate addicts? Am J
38. Glajchen M: Chronic pain: Treatment barriers and strategies
for clinical practice. J Am Board Fam Pract 2001;14:211–218.
39. Hill CS, Jr.: The barriers to adequate pain management
with opioid analgesics. Semin Oncol 1993;20(2 Suppl 1):1–5.
40. Modesto-Lowe V, Johnson K, Petry NM: Pain management
in patients with substance abuse: Treatment challenges for
pain and addiction specialists. Am J Addict 2007;16:424–425.
41. Wen CK, Hudak PL, Hwang SW: Homeless people’s per-
ceptions of welcomeness and unwelcomeness in healthcare
encounters. J Gen Intern Med 2007;22:1011–1017.
42. Podymow T, Turnbull J, Coyle D: Shelter-based palliative
care for the homeless terminally ill. Palliat Med 2006;20:
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