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In Search of a Good Death: Observations of Patients, Families, and Providers


Abstract and Figures

Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.
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In Search of a Good Death: Observations of Patients, Families,
and Providers
Karen E. Steinhauser, PhD; Elizabeth C. Clipp, PhD, MS, RN; Maya McNeilly, PhD;
Nicholas A. Christakis, MD, PhD, MPH; Lauren M. McIntyre, PhD; and James A. Tulsky, MD
Despite a recent increase in the attention given to improv-
ing end-of-life care, our understanding of what consti-
tutes a good death is surprisingly lacking. The purpose of
this study was to gather descriptions of the components of
a good death from patients, families, and providers
through focus group discussions and in-depth interviews.
Seventy-five participants—including physicians, nurses,
social workers, chaplains, hospice volunteers, patients, and
recently bereaved family members—were recruited from a
university medical center, a Veterans Affairs medical cen-
ter, and a community hospice.
Participants identified six major components of a good
death: pain and symptom management, clear decision
making, preparation for death, completion, contributing
to others, and affirmation of the whole person. The six
themes are process-oriented attributes of a good death,
and each has biomedical, psychological, social, and spiri-
tual components. Physicians’ discussions of a good death
differed greatly from those of other groups. Physicians
offered the most biomedical perspective, and patients,
families, and other health care professionals defined a
broad range of attributes integral to the quality of dying.
Although there is no “right” way to die, these six
themes may be used as a framework for understanding
what participants tend to value at the end of life. Biomed-
ical care is critical, but it is only a point of departure toward
total end-of-life care. For patients and families, psycho-
social and spiritual issues are as important as physiologic
Ann Intern Med. 2000;132:825-832.
For author affiliations and current addresses, see end of text.
Professional organizations and the public have
recently made care of the dying a national pri-
ority (1–7). Despite this, however, we remain con-
fused about what constitutes a good death (8).
Some patients with terminal illnesses choose to
leave the conventional medical setting and receive
hospice care in their home, surrounded by family.
Others seek experimental chemotherapy in an in-
tensive care unit. In each of these vastly different
scenarios, the perception of the quality of death is
constructed by family, friends, and health care pro-
viders, not solely by the dying person. However,
little empirical evidence exists to document these
varied perspectives (9, 10).
We conducted this study to describe the at-
tributes of a good death, as understood by various
participants in end-of-life care. To evaluate the rel-
ative importance of these attributes, we compared
the perspectives of different groups of persons who
had experienced death in their personal or profes-
sional lives.
We used focus groups and in-depth interviews to
identify the attributes of a good death. These qual-
itative methods, which are common in exploratory
studies, generate hypotheses and provide rich de-
scriptive information about a phenomenon (11–13).
Researchers do not impose theoretical assumptions
a priori but instead let participants frame questions
from the “ground up.”
Over a 4-month period, we convened 12 focus
groups, each of which had an average of 6 partici-
pants. A full spectrum of persons involved with
end-of-life care—physicians, nurses, social workers,
chaplains, hospice volunteers, patients, and recently
bereaved family members—were included (Table 1)
(12). Groups were stratified by role. Participants
were recruited from Duke University Medical Cen-
ter, Durham Veterans Affairs Medical Center, and a
local community hospice in Durham, North Caro-
lina. Nonphysician providers were recruited from
convenience samples generated by e-mail and de-
partmental advertising. Physicians were recruited
from the attending staff of the Duke University
Medical Center, Department of Medicine. We strat-
ified physicians by level of appointment (assistant,
associate, or full professor), randomized the lists,
and recruited potential participants in order, ensur-
ing that the final group represented each career
level. Patients were recruited by telephone from an
ethnically stratified sample enrolled in oncology and
HIV clinics. Family members were recruited from a
stratified random sample of recently bereaved rela-
16 May 2000 Annals of Internal Medicine Volume 132 Number 10 825
tives of Veterans Affairs patients who had died 6
months to 1 year earlier. For each group, we con-
tinued to call potential participants until we ob-
tained 6 to 8 participants per group.
We conducted separate groups for African-
American and white patients, with trained facilita-
tors from the respective ethnic groups. Participants
were compensated for their time. The institutional
review boards of the Durham Veterans Affairs Med-
ical Center and the Duke University Medical Cen-
ter approved the study.
Data Collection
We asked focus group participants to discuss
their experiences with the deaths of family mem-
bers, friends, or patients and to reflect on what
made those deaths good or bad. When necessary,
we asked probing questions to clarify a comment or
obtain more detail (Appendix).
We took several steps to ensure reliability and
validity, which are often called “exhaustiveness” and
“trustworthiness” in qualitative research (11). First,
we conducted focus groups until the same themes
were repeated and no new themes emerged. Theme
exhaustiveness is reached when similar themes are
generated by participants from very different social
backgrounds. Next, after repeatedly analyzing focus
group transcripts, we conducted in-depth interviews
with two members from each group—the most and
least talkative participants. The most talkative par-
ticipants were usually willing to provide informa-
tion; the least talkative participants were inter-
viewed to elicit possible silent but dissenting
viewpoints. No new themes emerged through these
interviews, thereby confirming exhaustiveness. The
interviewees were presented with our analyses and
were asked to evaluate our interpretations. Trust-
worthiness is noted when participants respond affir-
matively to researchers’ interpretations (12).
Statistical Analysis
Focus groups and interviews were audiotaped
and transcribed. We did not use quantitative meth-
ods of inter-rater agreement. Instead, we followed a
grounded theory approach with a “constant compar-
isons” method and its related open and axial coding
techniques (10, 11). During open coding, four inves-
tigators independently read an example of a tran-
script and analyzed it for common and recurrent
themes pertaining to qualities of a good death.
These summaries were compared for theme agree-
ment and disagreement. One coder used qualitative
software (NUDIST, Scolari Sage Publications Soft-
ware, Thousand Oaks, California) to apply the cod-
ing scheme to the remaining transcripts. Through-
out the coding process, all four investigators
reviewed theme exemplars as a check on coding
validity. During axial coding, the investigators devel-
oped further conceptual domains by comparing
themes within and between transcripts (11). After
identifying more than 70 attributes, we collapsed the
full list into 6 broad domains. Although the 6
themes are presented as conceptually distinct, at-
tributes overlapped between domains. For example,
attention to spiritual concerns may be primarily as-
sociated with a process of “completion” but may
also affect patients’ physical pain.
The illustrative quotes have been edited for ease
of reading. We did not make any substantive changes
but deleted repeated words and corrected gram-
matical inconsistencies that are common in spoken
Focus group participants ranged in age from 26
to 77 years (mean age, 47 years) (Table 2). Sixty-
four percent were women, 70% were white, and
28% were African American. Most of the sample
was Protestant (61%), 18% was Roman Catholic,
and 8% identified themselves as Jewish. Six themes
emerged: pain and symptom management, clear de-
cision making, preparation for death, completion,
contributing to others, and affirmation of the whole
person (Table 3).
Pain and Symptom Management
Many focus group participants feared dying in
pain. Portrayals of bad deaths usually mentioned
inadequate analgesia during cure-directed therapies
Table 1. Focus Group Composition*
Participants Groups Participants Source
Nurses 3 27 VA Medical Center, Duke
University Medical
Center, community
Social workers 2 10 VA Medical Center, Duke
University Medical
Chaplains 1 6 VA Medical Center, Duke
University Medical
Hospice volunteers 1 8 Community hospice
Physicians 1 6 VA Medical Center, Duke
University Medical
Patients 3 14 VA Medical Center
oncology and AIDS
Bereaved family members† 1 4 Decedents of VA Medical
*VAVeterans Affairs.
† The family focus group data were supplemented by data from hospice volunteers, most
of whom were recently bereaved family members.
826 16 May 2000 Annals of Internal Medicine Volume 132 Number 10
that were perceived as too aggressive. One nurse,
discussing a patient, said:
His disease was very widespread. One of the interns or
residents said, “We don’t want you on morphine.
You’re going to get addicted.” I said, “You must be
joking. This guy is having pain, and he’s not going to
make it out of the hospital.” He stayed on the surgical
service and he died in 4 days, in pain.
Participants were concerned with both current
pain control and control of future symptoms. Intru-
sive thoughts of breakthrough pain or extreme
shortness of breath produced anxiety that could be
relieved with appropriate reassurance. One man
with AIDS said, “I don’t want to be in pain, and
I’ve discussed it with my doctor. He said, ‘Oh, don’t
worry about pain. We’ll put you on a morphine
drip.’ That sort of eased my mind.”
Clear Decision Making
Participants stated that fear of pain and inade-
quate symptom management could be reduced
through communication and clear decision making
with physicians. Patients felt empowered by partici-
pating in treatment decisions. One patient said:
This is my medical problem. Sometimes I don’t want
to stay on the rigid schedule, and he [the physician]
would say, “I would like for you to stay on that, but
you are the manager of your ship. You decide how fast
you want to paddle, if you want to go backwards,
sideways, or make a 360° turn.”
Alternately, descriptions of bad deaths frequently
included scenarios in which treatment preferences
were unclear. Patients felt disregarded, family mem-
bers felt perplexed and concerned about suffering,
and providers felt out of control and feared that
they were not providing good care. Decisions that
had not previously been discussed usually had to be
made during a crisis, when emotional reserves were
already low.
One social worker, speaking about her mother,
I had never talked to her about end-of-life issues. I’m
trying to communicate with my family over the phone.
“What do we do? She’s intubated, her labs are worse.”
The doctor said, “We really don’t think that she’s
going to make it, and we have to consider withdrawing
life support.” I said, “I’m sorry, but that’s not a deci-
sion I can make.”
One physician spoke about the anticipatory con-
versations she usually had with patients who had
advanced disease, using one particular patient as an
This person had mets everywhere. I explained to him,
“There’s nothing that’s going to bring your bones back.
In this situation, somebody would do CPR [cardiopul-
monary resuscitation]. That involves pumping on your
chest, and it would likely fracture your bones.” I was
very simple about it. I said, “The alternative, which I
would recommend, is we make sure we give you
enough pain medication that you will not suffer.” I find
that the more up-front I am, most people are appre-
ciative of that.
Preparation for Death
Participants voiced a need for greater prepara-
tion for the end of life. Patients usually wanted to
know what they could expect during the course of
their illness and wanted to plan for the events that
would follow their deaths. One patient said, “I have
my will written out, who I want invited to the fu-
neral. I have my obituary. That gives me a sense of
completion that I don’t have to put that burden on
someone else. It’s to prepare myself for it.”
Family members felt a need to learn about the
physical and psychosocial changes that would occur
as death approached. Participants spoke of scenar-
ios in which a lack of preparation adversely affected
patient care. One nurse said:
I can’t tell you how many times, working in the emer-
gency room, [that I saw] families [take a patient
home]; this patient was going to die at home. And,
when the last breath came, the families panicked. They
brought the patient into the emergency room and went
through the whole process [resuscitation]. Preparing
the family, assessing what they actually know, and fig-
uring out what you have to teach them is essential.
Finally, the most experienced nonphysician pro-
viders spoke about the importance of exploring
one’s own feelings about death and the ways in
Table 2. Characteristics of Focus Group Participants*
Characteristic Value
Age range, y26–77
Mean age, y46.8
Sex, %
Male 36
Female 64
Ethnicity, %
African American 28
Asian American 3
White 70
Religious affiliation, %
Protestant 61
Roman Catholic 18
Jewish 8
Other 3
No affiliation 11
Recruitment source, %
Veterans Affairs Medical Center 57
Duke University Medical Center 24
Community hospice 19
* Seventy-five persons participated. Values in some categories do not sum to 100%
because of rounding.
Table 3. Components of a Good Death
Pain and symptom management
Clear decision making
Preparation for death
Contributing to others
Affirmation of the whole person
16 May 2000 Annals of Internal Medicine Volume 132 Number 10 827
which these feelings influence the ability to care for
terminally ill patients. One nurse said:
When I was in nursing school, my older sister was
killed in a car accident. I never had to think about
death before that. It sent me on a personal quest. I
developed a comfort with it that sometimes made it
very frustrating to work with people who didn’t have
that understanding, who still looked at death as the
enemy. You all know which attendings can and can’t
go in and talk to the patients because it’s too uncom-
Most of the personal preparation described by
health care providers had occurred individually, out-
side the context of their formal training. Only one
physician in our study had received residency train-
ing in palliative medicine.
Participants confirmed the deep importance of
spirituality or meaningfulness at the end of life.
Completion includes not only faith issues but also
life review, resolving conflicts, spending time with
family and friends, and saying good-bye. A family
member of a recently deceased patient recalled the
He got home, and they got him out of the ambulance.
I remember him saying, “Oh, can I wait just a minute,
to remember the sunshine.” This for somebody who
hadn’t seen the sun in...Itwasalmost like we had a
party that evening. Everybody was there, and we sang
songs. He died that night, at home, and everybody was
In western culture, completion may primarily be
a process of individual life review that is subse-
quently shared with family and friends. For patients
from other cultures, completion may be more ex-
plicitly communal and may involve rituals that are
important to the family during the dying process
and after death. A nurse described her experiences
with the family of one such patient:
They asked to bring in their religious representative. It
was important to them that the patient be completely
bathed as she was dying as well as when she was dead.
I had some weird looks from physicians who were
saying, “You’re wasting your time. This wasn’t an ef-
fective intervention.” But it was, because when all was
said and done, they [the family] had accepted it.
Issues of faith were often mentioned as integral
to overall healing at the end of life and frequently
became more important as the patient declined
physically. However, we also heard that such issues
are highly individualistic and that cues about their
particular expression must be taken from the pa-
Contributing to Others
Several focus groups mentioned the importance
of allowing terminally ill persons to contribute to
the well-being of others. A hospice volunteer told
the following story:
They [patients] have the ability to help someone else
through me. One fellow liked to go out for rides. He
couldn’t walk around very well, but he invited another
patient to come out. She was very debilitated too. So,
the three of us would drive around the community. As
debilitated as some patients get, they’re still capable of
helping someone else or making someone else laugh.
Contributions can take the form of gifts, time, or
knowledge. As death approaches, many patients re-
flect on their successes and failures and discover
that personal relationships outweigh professional or
monetary gains. They are anxious to share that un-
derstanding with others. One family member said,
“I guess it was really poignant for me when a nurse
or new resident came into his room, and the first
thing he’d say would be, ‘Take care of your wife’ or
‘Take care of your husband. Spend time with your
children.’ He wanted to make sure he imparted that
there’s a purpose for life.”
Affirmation of the Whole Person
Participants repeatedly declared the importance
of affirming the patient as a unique and whole per-
son. Patients appreciated empathic health care pro-
viders. One patient said of his caretakers, “There’s
no question that they make me feel I can’t ask.”
Family members were comforted by and spoke with
great respect about those who did not treat their
loved ones as a “disease” but understood them in
the context of their lives, values, and preferences.
One family member related the following:
The residents always approached my father as if he
was a person and there weren’t any divisions between
them. They didn’t come in and say, “I’m Doctor so
and so.” There wasn’t any kind of separation or aloof-
ness. They would sit right on his bed, hold his hand,
talk about their families, his family, golf, and sports.
Health care providers’ descriptions of good
deaths also focused on their personal relationships
with patients and families. They were touched by
the fact that these relationships were present even
in the most dire medical crises. One physician told
the following story about a patient:
That last day I saw him in the emergency room, he was
looking at me with those roving eyes and gasping for
breath. I leaned over him and stroked his hair. He
looked at me and said, “How’s that new house of
yours?” I said, “I’m not really moved in.” And he said,
“You make sure you decorate it nicely.” It was a very
personal interchange. He was dying, and his last inter-
action with me was as a person, not as a doctor.
Distinctions in Perspectives of a Good Death
These six themes reflect the common ground
shared by participants. However, we also saw differ-
ences between groups. Social and professional roles
substantially shaped the views of our discussants. In
828 16 May 2000 Annals of Internal Medicine Volume 132 Number 10
fact, professional role distinctions were more pro-
nounced than sex or ethnic differences. For exam-
ple, all social workers spoke from a case manage-
ment perspective and were highly attuned to the
needs of the family as the unit of care. Chaplains
eloquently discussed ethical issues and were the
only group to relay the tension between individual
and community rights. Family members spoke from
the unique role of both patient advocate and recip-
ient of care. All six themes were present in patient,
family, and nonphysician health care provider focus
groups. In contrast, physicians’ discussions were uni-
formly more medical in nature, and no physicians
spoke of “contributing to others.” One physician
made a brief comment about completion, but other
members of the group did not expand on it.
Although death is a rite of passage in which we
will all participate—as family member, provider, or,
eventually, patient—we understand little of what is
valued at the end of life. Our study confirmed the
importance of four themes found in the palliative
care literature: pain and symptom management,
clear decision making, preparation for death, and
completion. Two new themes, contributing to others
and affirmation of the whole person, were unex-
pected and add to our understanding.
Every provider group offered regret-filled stories
of patients who died in pain. Such findings are
concordant with studies showing that 40% to 70%
of Americans have substantial pain in the last days
of their lives (14). Concern about undertreatment of
pain is consistent across surveys of physicians,
nurses, and recently bereaved family members (10,
15, 16). Our study also revealed a new dimension to
this theme: anticipatory fears about pain and symp-
tom control. Many dying persons are terrified of
waking in the middle of the night with intense pain
or air hunger. For them, a good death includes
providers who anticipate these fears.
Providers and families in our study also identified
the need for improved communication and clear
decision making and feared entering a medical crisis
without knowledge of patient preferences. Despite
the recent attention devoted to advance care plan-
ning, this remains a source of great consternation
(2, 17, 18). Medicine will never remove all uncer-
tainty from the decision-making process (19). How-
ever, if values and preferences are clarified, toler-
ance for that uncertainty may increase.
Focus group members were concerned about our
society’s tendency to deny death and demanded
greater preparation for dying. We heard many ex-
amples in which providers avoided end-of-life dis-
cussions because they did not want to remove hope.
However, patients and families feared bad dying
more than death. Bad dying was characterized by
lack of opportunity to plan ahead, arrange personal
affairs, decrease family burden, or say good-bye. For
dying patients and their families, preparation does
not preclude hope; it merely frames it. After a new
diagnosis, patients usually hope for a cure. How-
ever, they also hope for lack of pain, lucidity, good
quality of life, and a physician who is committed to
being with them throughout the care process.
We heard extensive discussion of the need for
“completion,” a process involving meaningful time
with family and close friends and attention to reli-
gious or spiritual beliefs. Terminally ill patients are
often able to view their current experience as part
of a broader life course trajectory. This may explain
why they often rate their quality of life higher than
observers, who often do not give appropriate weight
to patients’ emotional and spiritual development
during the dying process (20–24). Traditional mea-
sures used to assess end-of-life quality do not usu-
ally account for this growth potential (20).
Our study introduced two novel components of a
good death. First, a surprising number of partici-
pants spoke of the importance of terminally ill pa-
tients’ contributions to the well-being of others. We
fully expected to find that dying patients needed
care, but we did not consider the extent to which
they also needed to reciprocate. Social psychologists
describe this need for “generativity” as one of the
great emotional tasks of human development, par-
ticularly during later life (25). Dying patients need
to participate in the same human interactions that
are important throughout all of life. Second, focus
group participants continually discussed the need to
appreciate patients as unique and “whole persons,”
not only as “diseases” or cases. We were struck by
the very personal language of this theme and by
participants’ desire to simply be known.
These six themes add to our understanding of
what constitutes a good death and also generate
hypotheses that have implications for both medical
education and clinical practice. The culture of death
changed dramatically during the 20th century. When
people died primarily at home, family, community,
and clergy assumed responsibility. As the location of
death shifted to the hospital, physicians became the
gatekeepers (26, 27). As a result, death is now
viewed through the lens of biomedical explanation
and is primarily defined as a physiologic event (26,
28). Most medical education and training reinforces
this framework.
However, a strictly biomedical perspective is in-
complete. For most persons involved with care at
the end of life, death is infused with broader mean-
ing and is considered a natural part of life, not a
16 May 2000 Annals of Internal Medicine Volume 132 Number 10 829
failure of technology. All focus groups, except phy-
sicians, spoke extensively about the need for life
review and subsequent completion. This is not to
suggest that these themes are unimportant to phy-
sicians; rather, they are not a usual focus of treat-
ment. It may be useful to recognize that for most
patients and families who are confronting death and
dying, psychosocial and spiritual issues are as im-
portant as physiologic concerns. Patients and fami-
lies want relationships with health care providers
that affirm this more encompassing view.
In an economic environment that substantially
limits physicians’ time, developing such relationships
may seem unrealistic. However, in a previous study,
we noted that the median time for advanced direc-
tive discussions is less than 10 minutes, with no
apparent correlation between length of discussion
and discussion quality (29, 30). Furthermore, an
initial investment of time may improve the patient–
physician relationship and save time in future con-
versations. Time may also be used more efficiently if
providers have an a priori list of themes to touch
on, such as the six discussed here.
There is no single formula for a good death.
Many participants cautioned health care providers
against implying, “You’re not dying the right way
because you’re not dying the way we think you
should.” As one author has written, people die “in
character” (31). Professional providers who meet a
dying patient for the first time are at a disadvantage
because they catch only a cross-sectional glimpse of
the lifetime of experiences that are shaping the
dying process. Our data suggest that the quality of
dying is related to acknowledgment of that lifetime
We heard many stories of health care providers’
discomfort with death and dying. Whether such dis-
comfort is caused by feelings of failure, a desire for
professional distance, or inexperience, it can ad-
versely affect care. Delivering bad news or discuss-
ing other end-of-life issues is a skill that is rarely
natural; like other procedures, it must be learned
(32). Furthermore, providers must be able to ac-
knowledge and process the feelings that arise when
caring for dying patients (33). Programs designed to
facilitate this process are now common in police
departments and crisis intervention programs, two
occupational settings in which trauma and death are
always present (34–36). However, such programs
have not yet become a usual part of medical train-
ing or practice.
Physicians should also be reminded that they are
not alone when caring for dying patients; many
other health care providers (nurses, social workers,
and chaplains) are available for comprehensive care.
For example, physicians may ask a screening ques-
tion (such as “What role does faith or spirituality
play in your life?”) that displays awareness of these
important aspects. Physicians can then ask whether
the patient would like to speak in greater depth
with a chaplain. Although physicians may not be
responsible for resolving the psychosocial and spir-
itual needs of patients, acknowledging the presence
and complexity of these needs is a way of actively
affirming the whole person.
Our study has several limitations. Most patients
were recruited from a Veterans Affairs medical cen-
ter, and therefore our findings may not be general-
izable to other groups. Although our patients were
mostly men, they represented a broad range of ages,
educational levels, and socioeconomic backgrounds.
Many also received care in the private sector, and
their comments reflected experiences in many set-
tings. Family focus group members were also re-
cruited from the Veterans Affairs system. However,
we collected extensive discussions of family perspec-
tives during discussions with the hospice volunteer
group and follow-up interviews with patients. Dis-
cussions were limited to deaths from chronic illness
and did not include deaths caused by accident or
trauma. However, participants described deaths that
had occurred in hospices, hospitals, and at home.
Good and bad deaths occurred in all settings.
Our study has implications for clinicians, educa-
tors, and researchers. Although there is no “right”
way to die, the six themes identified here provide an
initial framework for addressing topics that are im-
portant to patients and families. In addition, bio-
medical aspects of end-of-life care are crucial but
merely provide a point of departure toward a good
death. When physical symptoms are properly palli-
ated, patients and families may have the opportu-
nity to address the critical psychosocial and spiritual
issues they face at the end of life.
Appendix: Protocol for Focus Group
Focus Group Ground Rules
We’re all here to discuss a topic of great interest to
you. But before we begin our discussion, I’d like to review
a few important points.
1. Please say exactly what you think. Don’t worry about
what I think or what your neighbor thinks.
2. Talk about your experience and feelings, and not
about what you have heard others say about this issue.
3. Express your opinions, but do not argue with other
4. This discussion is being taped, so please speak up
and speak clearly.
5. Let’s try to have only one person talking at one
time. I will try to ensure that everyone gets a turn to
share their opinions.
6. Finally, we’re here to have fun. I hope everyone will
830 16 May 2000 Annals of Internal Medicine Volume 132 Number 10
leave this group having had a worthwhile and stimulating
Today we want to talk about what constitutes a “good
death.” We are interested in finding out what you think
would make a death good and what would make a death
bad. We’re interested in this because we want to try to
improve people’s experiences at the end of life. In order
to do that, we need to understand what people feel are
the important things that would make a death good.
Many of you have been present for someone’s death.
We’re interested in finding out what kind of things you
think make a death good or bad.
Focus Group Questions
First, let me start by asking, has anyone seen someone
die in a way that you thought was particularly good or
Do you mind telling us about it?
Do you think it was a good death?
Do you think it was a bad death?
Why? What made it a good/bad death?
What kind of things do you think would make a death
a good death?
Probe Questions
Would it be important not to have pain at the time of
Who do you think you want to be with you when you
die? Would you like to be with others or alone?
How important would it be to have friends and family
What kind of role would you like your friends and
family to have in your death?
How important would it be to have clergy/religious
figures nearby?
How important do you think it would be to say good-
bye to people?
Where do you think it would be good to die? Would
you prefer to die at home, at a hospital, at a hospice?
How do you feel about being sedated?
How important would it be to know in advance what is
likely to happen when you die?
How can health care providers affect the quality of
What do you think are the roles of nurses, doctors,
and social workers in affecting the quality of death?
Imagine if you were to measure good compared with
bad deaths. Can you give two things you would measure?
How much control do you want over your death?
How do you feel about assisted suicide/euthanasia?
Do you think about how much money will be spent
related to your death?
What do you consider to be proper financial prepara-
tions related to your death? This might mean making
wills and planning for a funeral.
What are your feelings about the uncertainty that sur-
rounds death?
What are your feelings about the communication be-
tween the dying person, the person’s family, and the
person’s caregivers around the time of death?
What kinds of emotions do you think are normal
around the time of dying?
From the Durham Veterans Affairs Medical Center, Duke Uni-
versity, and the Institute for Multiculturalism, Durham, North
Carolina; and University of Chicago, Chicago, Illinois.
Disclaimer: The views expressed in this article are those of the
authors and do not necessarily represent the views of the De-
partment of Veterans Affairs.
Acknowledgments: The authors thank Ginette Nachman for tran-
scription support; Aileen Ward for focus group facilitation; and
the 75 patients, family members, and health care providers who
graciously shared their experiences of care at the end of life.
Grant Support: By the Veterans Affairs Health Services Research
and Development (96-006). Dr. Tulsky and Dr. Christakis were
Project on Death in America Soros Faculty Scholars. Dr. Tulsky
is supported by a Veterans Affairs Health Services Research
Career Development Award and a Robert Wood Johnson Gen-
eralist Physician Faculty Scholars Award.
Requests for Single Reprints: Karen E. Steinhauser, PhD, Veterans
Affairs Medical Center (152), 508 Fulton Street, Durham, NC
27705; e-mail,
Requests To Purchase Bulk Reprints (minimum, 100 copies): Bar-
bara Hudson, Reprints Coordinator; phone, 215-351-2657; e-mail,
Current Author Addresses: Drs. Steinhauser, Clipp, McIntyre, and
Tulsky: Veterans Affairs Medical Center (152), 508 Fulton
Street, Durham, NC 27705.
Dr. McNeilly: Duke University Medical Center, Box 3003,
Durham, NC 27710.
Dr. Christakis: University of Chicago, 5841 South Maryland
Avenue, MC2007, Chicago, IL 60637.
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... Understanding the way personhood or "what makes you, you" is conceptualised is pivotal to the practice of medicine. [1][2][3][4][5][6] Conceptions of personhood determine the moral and legal status of an individual, is central to the protection of rights and privileges and is pivotal to the maintenance of the distinctiveness of the individual at times of illness and incapacity. [1][2][3][4][5][6] Bishop Merrill states that, "A clearer notion of what constitutes personhood will produce better arguments for moral decisions and actions in clinical settings and in public policy. ...
... [1][2][3][4][5][6] Conceptions of personhood determine the moral and legal status of an individual, is central to the protection of rights and privileges and is pivotal to the maintenance of the distinctiveness of the individual at times of illness and incapacity. [1][2][3][4][5][6] Bishop Merrill states that, "A clearer notion of what constitutes personhood will produce better arguments for moral decisions and actions in clinical settings and in public policy. It will also shed light on issues as far-ranging as abortion, euthanasia, and quality assurance in clinical care." ...
... 6 Yet despite its vital role, personhood is poorly understood. [1][2][3][4][5][6] This need is particularly evident within the end-of-life setting where provision of patient-centred care, the maintenance of dignity and issues pertaining to a "good death" revolve around appropriate understanding of personhood. [7][8][9][10] Indeed the charge of explicating this concept has been brought into sharp focus with suggestions that a loss of personhood ought to be considered indifferentiable from biological death. ...
Understanding personhood or "what makes you, you" is pivotal to the provision of person-centred care. Yet the manner that personhood is conceived amongst patients varies significantly. This study aims to investigate conceptions of personhood in a multiracial, multicultural, multireligious setting. A mixed-methods study was conducted at National Cancer Centre Singapore, from January 2013 to April 2013. We used a validated questionnaire where English-speaking oncology patients rated the importance of 26 features of "personhood" on a 10-point Likert scale from 0 to 9, with 9-points being extremely important. This was followed by a semi-structured interview. Analysis of transcripts using the Grounded Theory revealed original data that inspired novel ideas about the nature of personhood, which precipitated a further study in April 2014. Our initial study of 100 patients revealed that personhood is conceived in a unique and novel manner. To study this, we interviewed a further 40 patients using a supplemental question to our original questionnaire. Our data affirmed our initial findings and evidenced a change in conceptions of personhood. Our evidence supports the Ring Theory of Personhood, which suggests that personhood is defined by innate, individual, relational, societal elements. It also evidences that personhood is temporally and contextually sensitive allowing for better appreciation of the evolving goals of care that frequently occur at end-of- life. Most importantly, this study reminds healthcare professionals on the importance of "treating persons" and looking beyond familial interests in maintaining the interests and dignity of the patient.
... Hallazgos de un estudio cuantitativo dentro del marco del mismo proyecto documentó, además, una falta de conocimiento y comunicación sobre deseos y voluntades anticipadas -otro indicador de falencias en comunicación efectiva- (17). Según las respuestas de los pacientes y según la literatura internacional, siempre será mejor tomar el tiempo de comunicar estas noticias difíciles para fortalecer la relación médico-paciente y mejorar el proceso de atención, cuidado y fin de vida del paciente y su entorno (18). ...
Full-text available
Objetivo: Identificar y analizar experiencias y opiniones que pacientes oncológicos sin opción curativa tienen respecto al sistema de salud en torno a sus cuidados paliativos y deseos de final de vida. Métodos: Estudio cualitativo con perspectiva crítico-constructivista. Se realizaron 22 entrevistas en profundidad a pacientes entre 28 y 78 años con algunos de los cánceres más frecuentes (mama, cuello uterino, colon, estómago, entre otros, con una expectativa de vida entre seis y doce meses) atendidos en el Hospital Universitario San José de Popayán, el Hospital Universitario San Ignacio y el Instituto Nacional de Cancerología en Bogotá. Resultados: Se identificaron dos categorías de experiencias y deseos de los pacientes: una acerca de la atención e información que desean recibir por parte del personal de salud y otra relacionada con el sistema de salud, que incluye problemas administrativos con las EPS, la importancia de brindar continuidad en la atención médica, la oportunidad en la entrega de medicamentos y la asignación de citas, y la infraestructura hospitalaria direccionada hacia la Institución donde desean ser atendidos. Conclusiones: Los resultados de este estudio contribuyen al entendimiento de las experiencias que los pacientes con cáncer no curable han tenido con el sistema de salud. Es necesario educar al personal de salud sobre la necesidad de indagar y discutir los deseos de sus pacientes para ofrecer ayuda pertinente que optimice su calidad de vida. Se debe mejorar la infraestructura de los centros de cuidados paliativos y urgencias, el agendamiento de citas y la entrega oportuna de medicamentos.
... Wishes implemented in the program emphasize life review, memory making, and the affirmation and celebration of the patient as a person, which have all been described as important components of a "good death." [43][44][45] The 3WP is individualized and caters to the non-medical needs of a patient and their family. Furthermore, it is novel in that it is an example of primary palliative care and implemented by bedside ICU clinicians. ...
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Background The end-of-life (EOL) experience in the intensive care unit (ICU) is emotionally challenging, and there are opportunities for improvement. The 3 Wishes Program (3WP) promotes the dignity of dying patients and their families by eliciting and implementing wishes at the EOL. Aim To assess whether the 3WP is associated with improved ratings of EOL care. Program Description In the 3WP, clinicians elicit and fulfill simple wishes for dying patients and their families. Setting 2-hospital academic healthcare system. Participants Dying patients in the ICU and their families. Program Evaluation A modified Bereaved Family Survey (BFS), a validated tool for measuring EOL care quality, was completed by families of ICU decedents approximately 3 months after death. We compared patients whose care involved the 3WP to those who did not using three BFS–derived measures: Respectful Care and Communication (5 questions), Emotional and Spiritual Support (3 questions), and the BFS-Performance Measure (BFS-PM, a single-item global measure of care). Results Of 314 completed surveys, 117 were for patients whose care included the 3WP. Bereaved families of 3WP patients rated the Emotional and Spiritual Support factor significantly higher (7.5 vs. 6.0, p = 0.003, adjusted p = 0.001) than those who did not receive the 3WP. The Respectful Care and Communication factor and BFS-PM were no different between groups. Discussion The 3WP is a low-cost intervention that may be a feasible strategy for improving the EOL experience.
... [11][12][13][14][15][16] Originally, RASS measures the degree of agitation and sedation, [17][18][19][20] and understanding potential associations of the RASS scores and other measures is valuable to determine whether RASS can be a general indicator of palliative sedation. Additionally, maintaining communication capacity is one of the important goals in palliative care, 21,22 but information about the relationship between the RASS score and communication capacity is lacking. ...
Background: Palliative sedation is sometimes needed for refractory symptoms, and the Richmond Agitation-Sedation Scale (RASS) is one of the key measures. The primary aim of this study was to explore the association between RASS and degree of distress quantified by other measures: Item "symptom control" of Support Team Assessment Schedule (STAS, item 2), Discomfort Scale for Dementia of Alzheimer Type (Discomfort Scale), and Noncommunicative Patient's Pain Assessment Instrument (NOPPAIN), as well as a communication capacity measured by the Communication Capacity Scale (CCS), item 4. Methods: This was a prospective observational study on terminally ill cancer patients with palliative sedation in a palliative care unit of a designated cancer hospital. Primarily responsible palliative care physicians rated RASS, Discomfort Scale, NOPPAIN, and CCS just before sedation and 1, 4, 24, and 48 hours after, and ward nurses rated STAS at the same time. Since the ward nurses evaluated STAS during palliative sedation, we regarded STAS as a standard of distress measure. Results: A total of 249 assessments were performed for 55 patients. RASS was moderately to highly associated with symptom intensity measured by STAS, discomfort measured by the Discomfort Scale, and pain measured by NOPPAIN (r = 0.63 to 0.73). But communication capacity measured by CCS is not parallel with RASS and demonstrated a valley shape. In 82 assessments with an RASS score of -1 to -3, 11 patients (13%) had physical symptoms of STAS of 2 or more. Conclusions: RASS can roughly estimate physical distress in patients with palliative sedation, but a measure to more precisely quantify the symptom experience is needed.
... .While some studies have elucidated what is important to patients at the end of life [7,9,10], there remains a dearth of literature on patient values earlier in serious illness. And, despite our recent data showing the acceptability and feasibility of eliciting values of newly-diagnosed cancer patients, the content of such discussions and how they might be used by the clinical team is not yet known. ...
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Background Advance care planning, the process through which patient values and goals are explored and documented, is a core quality indicator in cancer care. However, patient values are predominantly elicited at the end of life; patient values earlier in serious illness are not clearly delineated. The objective of this analysis is to assess the content of patient-verified summaries of health-related values among newly diagnosed cancer outpatients in order to develop a theoretical framework to guide future values discussions and optimize person-centered oncologic care. Methods Values summaries among patients with gastrointestinal (GI) cancers or myelodysplastic syndrome (MDS) were extracted from the medical record. Modified grounded theory analysis included interdisciplinary team coding of values summaries to identify key domains; code categorization; and identification of thematic constructs during successive consensus meetings. A final round of coding stratified themes by disease type. Results Analysis of 128 patient values summary documents from 67 patients (gastrointestinal [GI] cancers, n = 49; myelodysplastic syndrome [MDS], n = 18) generated 115 codes across 12 categories. Resultant themes demonstrated patients’ focus on retaining agency, personhood and interpersonal connection amidst practical and existential disruption caused by cancer. Themes coalesced into a theoretical framework with 5 sequenced constructs beginning with the cancer diagnosis, leading to 3 nesting constructs of individual identity (character), interpersonal (communication) preferences and needs, and social identity (connection), signifying sources of meaning and fulfillment. Values differences between GI cancer and MDS patients—including greater focus on normalcy, prognosis, and maintaining professional life among GI patients—reflected the distinct therapeutic options and prognoses across these disease groups. Conclusions Patient values reflect goals of meaning-making and fulfillment through individual agency and interpersonal supports in the setting of a newly diagnosed cancer. Early, nurse-led values discussions provide important and patient-specific data that are informative and likely actionable by clinicians in the delivery of person-centered care. Values can also facilitate discussions between patients and families and clarify patient preferences.
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The current study examined qualitative data from hospice clinicians’ perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians’ and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.
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Objective The objective of this study was to explore the perceptions of good death of the older adults living in Bang Nang Li Sub-District, Amphawa District, Samut Songkhram Province, Thailand. Method The data of the study was collected using in-depth interviews between October 2019 to January 2020. The data collected a total of 14 older adults who had firsthand experience in caring for terminally ill patients were recruited for the study. Content analysis was employed to analyze qualitative data. Results The results of this study revealed the perceptions of good death which were categorized into three main themes and eight sub-themes, including 1) death without suffering (not suffering from life support devices, dying with care); 2) Natural death (death with the end of life expectancy, death with illness or ailments); and 3) Death without the worries (preparation for death, spiritual and belief practice toward preparation for death, family and property management before death, death among family members and at their familiar place). Conclusion The findings of this research provided the insight to clarify the understanding of the perceptions on a good death of older adults. The findings can be used to support the practice and management of nursing education and health care providers who have to be involved in palliative care for terminally ill older adults.
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Filial piety has a long historical standing in Chinese communities. However, the filial piety practices of adult children at the end of a parent’s life are under-explored. This study aims to develop a measurement for filial piety representations of the adult children of Macao Chinese, whose parents are at the stage of end of life. By adopting a scale development and validation framework, a 19-item Filial Piety Representations at Parents’ End of Life Scale (FPR-EoL) was formulated based on a Dual Filial Piety Model and literature, through procedures of item identification, panel review, cognitive interviews, and pre-test. The FPR-EoL was examined on 274 individuals. Factor analysis showed four factors in the scale; respect and comfort, acceptance of death, spending final days, and disclosing bad news. The Cronbach’s alpha of FPR-EoL was 0.73, and the four factors were 0.73, 0.66, 0.58 and 0.77, respectively. Discriminant validity was examined between FPR-EoL, the Good Death Inventory (GDI) and the Filial Piety Scale (FPS). The results suggested that there were differences between the three scales. FPR-EoL is found to be a reliable, valid and novel measure of filial piety representations among Macao Chinese. It may be a potential tool to probe and achieve good death among older persons of Chinese ethnicity in clinical settings.
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Resumen Objetivo Valorar la formación, la percepción de preparación y las necesidades formativas en cuidados paliativos (CP) teóricas y prácticas de las enfermeras de atención primaria en España. Diseño Estudio descriptivo transversal. Emplazamiento Centros de atención primaria en España con acceso online. Participantes Enfermeras de atención primaria en España durante enero y febrero de 2021. De las 344 respuestas, 339 cumplían criterios de inclusión. Mediciones principales Se analizaron variables sociodemográficas, formación en CP, necesidades de formación mediante cuestionario online de Google Forms e Instrumento INCUE. Se realizaron análisis descriptivos y se compararon los resultados mediante test de simetría exacto y test de Mann-Whitney. Resultados Mayoritariamente mujeres (82,6%) con una media de edad de 45,5 años. El 86,1% de las enfermeras encuestadas tenían formación en CP, siendo básica en el 45,4%. Solo el 40,5% se sienten bastante o muy preparadas para cuidar de pacientes paliativos. Demandaban mayor formación en psicoemocional y duelo y afrontamiento de pérdidas. Superaron el bloque teórico el 83,76%, frente el 43,36% del práctico, detectándose mayores necesidades formativas en este último (p < 0,001). Las proporciones de capacitados variaban en función del nivel formativo. Conclusiones La formación enfermera en CP en atención primaria continúa siendo deficitaria sobre todo en su aplicación práctica, siendo necesaria formación dirigida para que repercuta en el cuidado de las personas con necesidades paliativas y sus familias.
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Background: Within United States cultures and societies, topics related to death and dying continue to be taboo, and opportunities for presence and engagement during end-of-life that could lead to a good death are avoided as a result. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives, so they may express their goals-of-care if they become too sick to communicate their wishes. One major effort in the United States towards encouraging such challenging discussions is the annual celebration of National Healthcare Decisions Day (NHDD). Objective: The present study explored ACP from a socio-cultural perspective, using Twitter as a communication tool. Methods: All publicly available tweets published between August 1st 2020 and July 30th 2021 (N= 9,713) were collected and analyzed using the computational, mixed-method, Analysis of Topic Model Network (ANTMN) approach. Results: Results revealed conversations, driven primarily by laypersons (96% of tweets originated from unverified accounts)surrounded three major themes: importance and promotion, surrounding language, and finally, systemic issues. Conclusions: Based on the results, we argue there is a need for awareness of what barriers people may face in engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies, including Medicare reimbursements, and trust among health care professionals, in the United States. This is incredibly important for clinicians and scholars across the globeto be aware of as westrive to re-envision ACP so that people are more comfortable engaging in ACP conversations. In terms of content of Tweets, we argue there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and NHDD hashtags could be harnessed to serve as a connecting point between organizations, physicians, patients and family members, to lay the groundwork for the trajectory towards a good death.
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Objectives.-To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. Design.-A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n=2652) or control group (n=2152). Setting.-Five teaching hospitals in the United States. Patients.-A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%. Intervention.-Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specially trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication. Results.-The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. During the phase II intervention, patients experienced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [CI], 0.90 to 1.15), physicians' knowledge of their patients' preferences not to be resuscitated (adjusted ratio, 1.22; 95% CI, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% CI, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15, 95% CI, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% CI, 0.99 to 1.12). Conclusions.-The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed.
A Sovereign ProfessionThe Rise of Medical Authority and the Shaping of the Medical System * The Social Origins of Professional Sovereignty * Medicine in a Democratic Culture, 17601850 * The Expansion of the Market * The Consolidation of Professional Authority, 18501930 * The Reconstitution of the Hospital * The Boundaries of Public Health * Escape from the Corporation, 19001930 The Struggle For Medical CareDoctors, the State, and the Coming of the Corporation * The Mirage of Reform * The Triumph of Accommodation * The Liberal Years * End of a Mandate * The Coming of the Corporation
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient's death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data. collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures. J Pain Symptom Manage 1999;17:114-119. (C) U.S. Cancer Pain Relief Committee, 1999.
Following a review of the literature on quality of life indicators a comparative study of patients in a continuing care unit and a general medical ward showed that patients' needs and concerns are highly individualistic. The MacAdam assessment of suffering was found to be a useful diagnostic and therapeutic tool, particularly in the areas relating to a patient's mood or spirits.
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient's death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.