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GERIATRICS/ORIGINAL RESEARCH

Am I Doing the Right Thing? Provider Perspectives on Improving


Palliative Care in the Emergency Department
Alexander K. Smith, MD, MS, From the Division of General Medicine and Primary Care, Department of Medicine (Smith,
MPH Schonberg, Forrow, Phillips, McCarthy), and Department of Emergency Medicine (Fisher), Beth
Israel Deaconess Medical Center, Boston, MA; the Division of Psychosocial Oncology and Palliative
Jonathan Fisher, MD
Care, Dana-Farber Cancer Institute and Brigham and Womens Hospital, Boston, MA (Smith,
Mara A. Schonberg, MD, MPH Block); and the Department of Emergency Medicine, Brigham and Womens Hospital, and Division
Daniel J. Pallin, MD, MPH of Emergency Medicine, Childrens Hospital Boston, Boston, MA (Pallin).
Susan D. Block, MD
Lachlan Forrow, MD Dr. Smith is now with Division of Geriatrics, University of California, San Francisco, San Francisco,
CA.
Russell S. Phillips, MD
Ellen P. McCarthy, PhD, MPH

Study objective: Although the focus of emergency care is on the diagnosis and treatment of acute illnesses and
injuries or the stabilization of patients for ongoing treatment, some patients may benefit from a palliative approach.
Little is known about delivering palliative care in the emergency department (ED). We explore the attitudes,
experiences, and beliefs of emergency providers about palliative care in the ED, using structured qualitative methods.

Methods: We studied 3 focus groups with 26 providers, including 14 physicians (10 residents, 4 attending
physicians), 6 nurses, 2 social workers, and 4 technicians, working in 2 academic EDs in Boston. We used a
grounded theory approach to code responses, resolving discrepancies by consensus.

Results: Six distinct themes emerged: (1) participants equated palliative care with end-of-life care; (2)
participants disagreed about the feasibility and desirability of providing palliative care in the ED; (3) patients for
whom a palliative approach has been established often visit the ED because family members are distressed by
end-of-life symptoms; (4) lack of communication between outpatient and ED providers leads to undesirable
outcomes (eg, resuscitation of patients with a do-not-resuscitate order); (5) conflict around withholding life-
prolonging treatment is common (eg, between patients family and written advance directives); and (6) training in
pain management is inadequate.

Conclusion: Providers ranked improved communication and documentation from outpatient providers as their
highest priority for improvement. Attitudinal and structural barriers may need to be overcome to improve
palliative care in the ED. Despite targeted recruitment, attending physician participation was low. [Ann Emerg
Med. 2009;54:86-93.]

Provide feedback on this article at the journals Web site, www.annemergmed.com.


0196-0644/$-see front matter
Copyright 2008 by the American College of Emergency Physicians.
doi:10.1016/j.annemergmed.2008.08.022

INTRODUCTION We conducted a qualitative study to explore the perceptions,


Many patients with serious illness are treated in an experiences, and beliefs of ED providers about palliative care in
emergency department (ED) in the last month of life.1 In 2006, the ED. Qualitative research is hypothesis-generating research
the American Board of Emergency Medicine cosponsored that is particularly useful in situations in which little is known
palliative medicine as a recognized subspecialty.2 The highly about a particular field.5 Qualitative research provides a means
regarded Education and Palliative and End of Life Care Project of targeting future research by identifying areas of need. One
developed a new curriculum for emergency medicine limitation of qualitative studies is that sampling methodologies
professionals (EPEC-EM),3 evidence of mounting interest in prevent estimating frequencies in the larger population from
incorporating palliative care principles in the ED.2 Yet the ED which the sample is drawn. Thus, qualitative research is often
has not been a focus of palliative care research, leading to a call followed by quantitative research to test hypotheses and make
for more research in this area.4 empirical estimates.

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Smith et al Palliative Care in the Emergency Department

(see Appendix E1, available online at


Editors Capsule Summary
http://www.annemergmed.com). Questions were open ended
What is already known on this topic and the moderator used probes to clarify and further explore
Patients needing palliative care frequently present to responses. The guide began by asking participants about their
understanding of palliative care. Participants were then given a
the emergency department (ED).
definition of palliative care adapted from the American
What question this study addressed Academy of Hospice and Palliative Medicine7: The goal of
Using focus group methodology, this study palliative care is to prevent and relieve suffering and to support
examined the attitudes, experiences, and beliefs of the best possible quality of life for patients and their families,
regardless of the stage of the disease or the need for other
emergency providers about palliative care in the ED.
therapies. Palliative care can be delivered at the same time as
What this study adds to our knowledge life-prolonging care or as the main focus of care. Palliative care
ED providers expressed significant discomfort, is achieved through effective management of pain and other
conflict, and gaps in knowledge with issues distressing symptoms, while incorporating psychosocial and
spiritual care according to patient/family needs, values, beliefs
concerning palliative care in the ED.
and culture(s).
How this might change clinical practice Participants were asked their reactions to this definition, as
If these results are representative, improvements are well as their thoughts on the extent to which there is a shared
needed in communication between continuing care understanding of what palliative care means among emergency
medicine providers. Next, participants were asked to share their
physicians and the ED and in emergency physicians
experiences caring for patients with palliative care needs in the
understanding and management of patients ED, including specific probes about the reasons patients with
requiring palliative care. palliative care needs come to the ED and challenges and rewards
of caring for these patients. Finally, participants were provided
with a list of potential domains for improving palliative care in
MATERIALS AND METHODS the ED and asked to rank their top priorities from 1 (highest) to
Study Design 3. The list was developed by the multidisciplinary study team
We conducted a qualitative study using 3 focus groups of and was provided to stimulate conversation about potential
ED providers. We recruited physicians, nurses, social workers, interventions. Participants were encouraged to e-mail further
and technicians by e-mail from 2 academic EDs in Boston. We thoughts or comments to the investigators. E-mailed responses
include technicians because in these 2 EDs, technicians are were coded in the same manner as focus group transcripts (see
often involved in the triage of patients at the front desk. below). After review of the transcript from the first focus group,
Furthermore, in carrying out their duties (vital signs checks, several questions were added to the study guide to further clarify
moving patients, assisting nurses, fielding questions), ideas and explore specific areas in greater detail.
technicians in these EDs spend a great deal of time with patients
and families. We targeted recruitment of senior providers by Primary Data Analysis
using a purposive sampling technique (selecting participants Sessions were recorded and transcribed verbatim with a
with the potential to provide rich, detailed descriptions professional transcription service. Qualitative analyses were
pertinent to the study question).6 We intentionally mixed the conducted with an iterative process and following standard
provider specialties, experience levels (eg, attending and resident grounded theory techniques.6,8 Transcripts were coded by 3
physicians), and institutions of focus group participants. We physician coauthors (AKS, JF, and MAS) experienced in
believed that the potential benefits of cross-fertilization of ideas palliative, emergency, and general internal medicine,
and experiences across specialties and institutions outweighed respectively. These investigators coded a portion of the
the potential risks to full and open participation. A professional transcripts together to develop a common coding structure, and
focus group moderator led all groups and encouraged equal each coded the remainder of the transcripts independently.
participation by group members. Study investigators observed They reviewed transcripts line by line until a concept emerged
groups from behind a 1-way mirror. Focus groups lasted and a code was applied. Previously coded sections were reviewed
approximately 1 hour. Participants were given an honorarium for further interpretation, and concepts were collapsed into
for their time. themes. The few discrepancies (5) that occurred among coders
were resolved by consensus. New codes were added as necessary
Data Collection and Processing and previous transcripts recoded iteratively until no new insights
A multidisciplinary team of investigators from emergency, emerged. In qualitative research, sampling until the point of
palliative, and general internal medicine developed a focus redundancy or thematic saturation provides evidence of the
group guide based on their experiences in this topic area, credibility of developed theory and is an accepted sampling
expertise in qualitative research, and a review of the literature endpoint.6,8 Illustrative quotes have been edited for grammar.

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Palliative Care in the Emergency Department Smith et al

Table 1. Characteristics of providers enrolled in focus groups place to care for patients with palliative care needs. However,
(n26). other providers, particularly nurses, discussed the rewards of
Characteristic Value caring for patients with palliative care needs in the ED. Nurses
Age, y, median (range) 28 (2257) believed they were of particular importance for patients with
Years in practice, median (range) 2.5 (130) palliative care needs and families. One nurse described caring
Female, No. (%) 14 (54) for dying patients as a privilege: When you can pull back all of
Academic medical center 1 (vs 2), No. (%) 18 (69) the wires and everything and be in that room and comfort that
Provider type, No. (%)
Physician 14 (54)
family and make that patient comfortable, and give the perfect
Resident 10 (38) environment for what they needto me is a privilege. To be
Attending physician 4 (15) present when the patient dies is a very sacred experience.
Nurse 6 (23) A minority of physicians (2 attending physicians and 1
Social worker 2 (8) resident) described caring for patients with palliative care needs
Technician 4 (15)
as part of their professional responsibility. For example, one
resident physician e-mailed, The ED is not an ideal, or even
desirable place to begin the discussion of palliative careit may
This study was approved by the institutional review board of the take months or years after a diagnosis before someone decides to
Dana Farber Cancer Institute/Harvard Cancer Center, which change their care goals away from aggressive treatment;
covers all participating institutions. however, I feel it is our responsibility to assist patients who are
further along in this decision process.
RESULTS
When asked why patients with palliative care needs are
Characteristics of the study participants are presented in
treated in the ED, the common theme that emerged was that
Table 1. Although participants tended to be young, a minority
families bring their dying loved ones to the ED because they
of participants was older and had several years of experience
become scared, particularly in situations in which pain or
working in the ED. Slightly more than half of the participants
dyspnea worsen acutely. One physician described how some
were physicians. Six themes predominated (Table 2), and 7
families may feel unprepared to face the challenges of end-of-life
principal obstacles to providing palliative care in the ED were
care at home: It is one thing to come up with an advanced
identified (Table 3). Providers priorities for improving
directive; it is another thing to be faced with the actual situation
palliative care in the ED are reported in Table 4.
of Grandma or Mom at home having trouble breathing. There
Participants equated palliative care with an effort to reduce
is fear and hesitation once things are actually happening. A lot
symptoms in patients who were actively dying, a concept often
referred to by participants as comfort care. The following of times people just need a doctor, a caregiver, a nurse, a friend,
quote from a social worker is representative: I think palliative or a family member to help support them and say it is okay to
care is comfort care for people who are terminally ill and who get through this.
have decided to let nature take its course. Other less frequently A social worker observed that the patient, although
(endorsed by 6 or fewer participants) mentioned descriptors of symptomatic, is less often the one to initiate the visit to the ED:
palliative care included a focus on pain control, relief of Patients may be sitting there breathing at 40, but they usually
suffering, respect and dignity, and care of families, as well as arent the ones that initiated coming into the hospital, it is
patients. When presented with the structured definition of usually the family that is scared of what they are seeing.
palliative care, most providers were surprised to hear that Providers lamented that they often had no documentation
palliative care could be delivered concurrently with life- about outpatient communication about goals of care and were
prolonging care. Several providers (2 attending physicians, 3 uncertain that it had taken place before hospitalization. The
residents, 2 nurses, and 1 social worker) expressed frustration following quote from a physician is representative: Having
that the structured definition of palliative care seemed too broad these conversations in the ED causes a lot of consternation. I
to be clinically useful. One provider noted, This seems more of wonder, Am I doing the right thing by this person? Why hasnt
a definition of what good emergency care should be at any given somebody else talked to this person about it? Why does it come
stage than specific for palliative care. to me to end up talking to this person?
Providers described multiple attitudinal and structural When it did fall to ED providers to have goals of care
disadvantages to provision of palliative care in the ED discussions with patients and families, providers found these
(described in Table 3). Physician providers observed that conversations challenging, primarily because they had no
palliative care is neither a goal of emergency medicine trainees established relationship with these patients, who were often
nor a focus of their training. ED technicians observed that acutely decompensating. Another physician summed it up this
patients with palliative care needs may be prioritized below way: It is shocking how often I am the first person to
other patients, and long wait times may be particularly document DNR status in the chart . . . on an ER visit.
burdensome for these patients. In light of these disadvantages, Providers agreed that resuscitation of patients who they later
many providers questioned whether the ED was the appropriate discovered had requested do-not-resuscitate/do-not-intubate

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Smith et al Palliative Care in the Emergency Department

Table 2. Themes emerging from focus group discussions of emergency providers about palliative care (n26).
Proportion Endorsing Theme,
Theme Brief Explanation No. (%)
Palliative care is end-of-life care Providers concept of palliative care was more delimited than 17 (65)
that used in the palliative care field. Providers equated
palliative care with care of actively dying patients who have
elected an exclusively comfort-oriented approach to
treatment.
Disagreement about the feasibility and Although most participants observed disadvantages of the ED 22 (85)
desirability of providing palliative care as a setting for palliative care, some (particularly nurses)
in the ED discussed the rewards of caring for dying patients.
Families are distressed by end-of-life Patients for whom a primarily palliative approach has been 14 (54)
symptoms established visit the ED because family members are
inadequately prepared to cope with and treat distressing
end-of-life symptoms.
Lack of communication between Clinicians regret emergency resuscitation of patients with DNR 23 (88)
outpatient and ED providers leads to status and attributed its occurrence to poor communication.
undesirable outcomes Participants lamented about failures of primary providers to
have discussed end-of-life issues adequately before the ED
visit (eg, failure to establish resuscitation status). When
present, advance directives are often too general to be
useful.
Conflict around withholding life- Providers were disturbed by and uncertain how to resolve 19 (73)
prolonging treatment is common conflict between ED providers, patients, family members,
and written advance directives about withholding life-
prolonging interventions.
Training in pain management is Emergency medicine residents in particular were troubled by 10 (38)
inadequate inadequate training in pain and symptom management.

(DNR/DNI) status, although not common, happened too Participants stated that when advance directives documents
frequently. Physicians in particular were pained and troubled by were present, directives were often too general to be useful.
these experiences. They described being concerned about the Providers were frequently challenged by trying to translate
effect of these events on patients, families, and their general goals of care requests into specific treatment plans. One
relationships with outpatient providers. The following quote is physician explained, People have really different views of what
representative: I had 2 or 3 instances that involved a very angry comfort measures only means. Does that mean you can give
phone call from a primary care physician or an oncologist, who them fluids? Is that comfort, or is that intervention? Can you
understandably had had a several month conversation with this give them antibiotics? Is that comfort, is that intervention?
patient, finally getting him to move to this DNR/DNI comfort Providers rankings of priority areas for improvement are
measure state, and then they come in and now we have them outlined in Table 4. Providers thought that the primary focus of
intubated in the ICU, you know largely through future interventions should be on improving communication with
miscommunication. Part of the problem involves being able to and documentation from outpatient providers. Discussion revealed
communicate effectively with people who know the patients that ED providers had several goals in mind. Providers hoped that
bettertheir primary care providers, their oncologists but outpatient physicians would discuss goals of care with their
who arent there at the ER at the time the patient comes in. seriously ill patients, document these goals in a way that was clear
Participants cited both lack of communication and poor and available to ED providers, and be more accessible when ED
documentation as causative factors in cases of mistaken providers contacted them. Specific suggestions for improvement
resuscitation. Providers described multiple instances of were varied and came primarily from residents. Three residents
incomplete DNR paperwork. One physician stated, Paperwork suggested a palliative care hotline, similar to the toxicology
is confusing because you dont know if this [is] up-to-date, if hotline, to improve access to information about pain, symptom
you can deal with a copy, if you have [the] DNR slip, the management, and home-based services such as hospice. Two
original form, whose signatures are on it does this belong to residents suggested an intervention similar to the rape crisis
the patient? One nurse observed that the official Massachusetts intervention, training a group of nurses to provide excellent
DNR bracelets are flimsy, susceptible to water damage, and palliative care and be called on as needed.
rarely worn by patients. Furthermore, although physicians Providers reported multiple instances in which advance
described sometimes thinking that resuscitation was not in the directives were in conflict with the health care proxys wishes.
best interest of patients, they also described feeling legally One physician described such a conflict in caring for a nursing
compelled to resuscitate patients without clear DNR home patient with advanced dementia: The patient came with
documentation. a comfort measures only/do-not-hospitalize piece of

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Palliative Care in the Emergency Department Smith et al

Table 3. Obstacles to palliative care in the ED.


Categories Concepts Representative Quotes
Attitudinal 1. Palliative care not a major focus of ED providers This is an overgeneralization, but I think that palliative care has
a little bit of a negative connotation in the ED. If you think
about people who go into emergency medicine, they want to
sort of act and do, cure. When someone comes in and their
status is DNR or comfort care, it is not necessarily seen as
a priority or as a good thing. The first reaction is almost
Why are they here? Why are they bothering us? This is not
an emergency. [Physician] We get trained to think ABCs,
ABCs, ABCs. [Physician]
2. Emotionally challenging for providers I think that we are very comfortable with diagnosis and
treatments and doing things for people. Seeing the bigger
picture and just witnessing end of life is something that is a
little bit harder for us to deal with emotionally. [Physician]
3. Not being able to act is frustrating It is often difficult for me when a patient comes in and there is
a code status that prevents us from doing things. We are
trained to do something and we have a piece of paper that is
saying dont do that. [Physician]
Structural 4. Environment not appropriate I think the environment is very difficult, the way that it is set up
with stretchers and just cold simple rooms, it is loud, the guy
in the next room is screaming, either he is drunk or he is
having a psychotic break. [Nurse]
5. ED providers do not know patients as well as I would say generally people who are receiving palliative care
outpatient providers have long-term relationships with whoever is providing their
palliative care. When we see them in the emergency room we
have no idea who they are, no idea what sort of care they
have received in the past, what is working for them, what is
not working them, so it is just kind of a what do I do with
you? [Physician]
6. Patients with palliative care needs and families Not to say that they dont deserve the attention and everything,
sometimes considered a lower priority I just think it is the environment. There is so much going on
and I think unfortunately patients with palliative care needs
do get put on the back burner sometimes. If they dont need
a certain test, then it is easy to put them on the back
burner, and families get more and more needy because you
are not going to them. [Technician]
7. Long ED wait times particularly burdensome for They wait to see a doctor, they wait foreverthey get bumped,
patients with palliative care needs bumped, bumped down the list. These people go to hospitals
more than anybody else, they are there all of the time, day
after day they are coming for radiation, chemo, whatever . . .
to see them wait is very frustrating. [Technician] They are
sitting in a stretcher in a busy ER, listening to beep, beep,
beep all around them of all the monitors and machines.
They may be in pain, they may be feeling horrible, and there
is not much that we can do in that time. [Nurse]

paperworkvery demented patient, couldnt even speak in to put a breathing tube in you, and he went . . . [head shake
complete sentences, couldnt process anything that we said, and no] . . . and I said, Possibly you could die if we dont put the
that was her baseline according to all of the records that we breathing tube in you, they would like to put in a breathing
received. The family member reversed everything while I was on tube, and he went and shook his head no. So, then I said,
the phone, saying I do want her hospitalized, and I want you to Well, they called your son and your son wants the breathing
do everything possible. tube in, and he went . . . [head shake no] . . . So, the physicians
In another instance, a nurse described caring for an elderly behind me were stating that because his CO2 was so high he
patient with chronic obstructive pulmonary disease who arrived could not make a valid decision, and he needed to be intubated.
hypercapnic, with a clearly documented DNR order. Yet when But I said, Please at least call his son and let his son know what
physicians contacted the patients son and health care proxy by he is saying . . . just give me that.
telephone, he asked that his father be intubated. The nurse Improving communication skills training was the second most
described her effort to involve the patient in the decisionmaking commonly ranked priority area for improvement (Table 4).
process under stressful circumstances: I said The doctors want Providers commented that they would benefit from training in how

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Smith et al Palliative Care in the Emergency Department

Table 4. Providers priorities for improving palliative care in care is end-of-life care, families are distressed by end-of-life
the ED (n26). symptoms, lack of communication between outpatient and ED
Proportion providers leads to undesirable outcomes, and conflict around
Proportion Ranking Item as withholding life-prolonging treatment is common). For other
Ranking Item as First, Second, or themes, however, residents and attending physicians endorsed
Highest Priority, Third Priority,
themes differently. For example, while attending physicians
Priority Area No. (%) No. (%)
were evenly split about the desirability and feasibility of
Improved communication/ 13 (50) 24 (92) providing palliative care in the ED, only 1 of 10 residents
documentation from
outpatient providers
discussed palliative care in the ED as feasible and desirable.
Communication skills training 4 (15) 13 (50) Seven of 10 residents endorsed the theme that training in pain
Symptom management 2 (8) 12 (46) management was inadequate; no attending physicians endorsed
training this theme.
Palliative care consultations 2 (8) 10 (38) Other notable limitations include the small sample size and
in ED
Caring for hospice patients 2 (8) 6 (23)
the risk of selection bias. Most of the physician data are from
training residents, and this may not be reflective of more experienced
Triage system to identify 0 (0) 6 (23) attending physicians. Participants who viewed palliative care in
patients with palliative a favorable light may have been more inclined to participate,
care needs in the ED which may have led to selection bias in the recruitment of our
Other 2 (8) 4 (15)
sample. Although our professional moderator attempted to elicit
perspectives from each participant, some may have been
reluctant to voice their perspectives in a group setting.
to discuss and resolve conflicts between patients, families, and staff Nevertheless, because of its qualitative nature, the objective of
around withholding specific treatments and interventions. this study was to better understand perspectives, experiences,
Improved symptom management training was the third most and beliefs of ED providers, which could be used to generate
common ranked priority area for improvement (Table 4). hypotheses and better focus future areas of research to improve
Resident physicians in particular discussed the inadequacies of provision of palliative care in EDs.
current training in pain management. One resident said that he
had rarely been taught how to manage pain: One attending DISCUSSION
talked to me for 10 minutes about good ways to manage pain, We report on a qualitative analysis of perceptions,
how to approach it more systematically, and I really appreciated experiences, and beliefs of ED providers about the role of
it and it is very rare to get that sort of teaching about how to palliative care in EDs. In focus group discussions, ED providers
manage pain. Another physician stated, I think that if I really identified barriers to integrating palliative care into the ED, as
felt 100% comfortable that all of the patients that I have taken well as important areas for exploration and improvement.
care of while they were dying were completely comfortable, I Although providers believed that palliative care represents
would feel better about it, but I have had a lot of patients that I comfort-oriented care for patients at the end of life, they did
have taken care of that I wonder. . .did I really do everything, or not appreciate that palliative care is often delivered
did we just kind of let this person die? concurrently with life-prolonging care.7,9 Palliative care is
ideally initiated on diagnosis with serious illness, and the
LIMITATIONS balance between palliative and life-prolonging care is
Our study has important limitations. Most notably, our adjusted according to the patients goals of care, symptoms,
findings have limited generalizability. Our findings reflect the functional status, and potential for cure or life extension.10
perspectives of ED providers in 2 tertiary academic teaching Attention to pain control for patients with cancer
hospitals in Boston and may not reflect the views of ED undergoing active disease-modifying therapy is one example
providers in community hospitals or those working in hospitals of concurrent delivery of palliative and life-prolonging care.
in other regions of the United States. Although the hospitals The degree to which ED providers nationally understand the
represented in this study have active palliative care teams, broader focus of palliative care and that palliative care can be
interaction between these palliative care teams and the ED is delivered concurrently with life-prolonging care is unknown
rare. The extent to which each participant interacted with the and may present an important opportunity for education.
palliative care service is unknown. Beginning with a shared understanding of the broader goals
Despite purposive sampling to increase participation of and focus of palliative care is an important first step in
experienced attending physicians, our participants tended to be designing interventions to improve care.
younger, with a median of 2.5 years of clinical experience. The Providers, however, disagreed about the extent to which
degree of endorsement differed for some themes between palliative care can or should be incorporated into ED care.
attending physicians and residents. Residents and attending Structural barriers to the provision of optimal palliative care
physicians were in clear agreement on most themes (palliative in the ED were identified, such as a chaotic environment,

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Palliative Care in the Emergency Department Smith et al

competing demands, and long wait times. Providers observed interventions. Limitations in the effectiveness of efforts to
that outpatient providers know patients better than ED improve physician and patient communication around
providers, and in fact improved communication with advance care planning and documentation of advance
outpatient providers was ranked as the highest priority for directives have been noted.16,17 Despite these limitations,
intervention. Some providers believed that palliative care has a however, there is ample room for improvement. Policies that
negative connotation among ED providers, whose goals primarily require documentation of advance care planning
focus on stabilization, diagnosis, and disposition. Others, primarily conversations for all advanced cancer patients may encourage
nurses, disagreed, and thought that palliative care was consistent primary providers to have these conversations before ED
with the goals of emergency medicine and that caring for these attendance. Improvements in electronic medical records may
patients was an intensely rewarding experience. These findings are improve the accessibility of advance directives and
new, to our knowledge, and we hope they will open a dialogue discussions about advanced care planning, and similar to the
about the extent to which palliative care can and should be development of automatic alerts for potential adverse drug
incorporated into the ED. Concerns about ED wait times are well events, search algorithms could be developed to scan
substantiated11 and may have particular importance for patients patients electronic medical records on admission to the ED
with palliative care needs. Furthermore, these findings suggest that for previous advance care planning language such as DNR.18
nurses, who are on the front lines providing care for these patients Providers described multiple instances in which patients
in the ED, should have a prominent place in future interventions to wishes or written advance directives were in conflict with the
improve care. One possible starting point, suggested by a resident, wishes of family members. In each case, the patients
would be the training of palliative care nurse champions, similar documented DNR preference was overturned by family
to the expertise of nurses trained in rape crisis intervention. These members. Providers in our study were distressed and
nurses could be trained with a curriculum emphasizing conflicted about what to do in these cases but defaulted to
communication skills, palliative care ethics, and pain management. providing life-prolonging care, partly because of fears of
Providers believed that most patients with palliative care needs
litigation. These findings suggest a need to strengthen the
were brought into the ED because family members became scared.
ethical and legal framework to protect patients from
Although acutely worsened pain or dyspnea was often cited as the
unwanted resuscitation and to encourage communication
instigating reason for admission to the ED, providers thought that
between patients and family members about end-of-life-care
family members, rather than patients, were uncomfortable
wishes. Furthermore, providers expressed confusion about
managing these symptoms at home. This finding emphasizes the
how to translate general goals of care into specific treatment
high toll of home-based caregiving12-14 and raises questions about
preferences. Sorting out the subtleties of whether antibiotics,
whether earlier introduction of hospice, which provides support
intravenous fluids, or a central line placement is consistent
and education to family members, might play a role in reducing
with a goal of comfort is particularly difficult. Palliative care
family fear and preventing some of these admissions. Although
providers face these problems daily, and this presents an
going to the ED may be the best course for some patients, for
others, these findings suggest a need for strategies to treat symptoms opportunity for cross-specialty education and training.
effectively at home and prepare caregivers for distressing end-of-life Finally, providers, particularly resident trainees, were
symptoms. concerned that training in pain management is inadequate.
Providers identified a number of communication Providers expressed concern and regret that dying patients they
challenges in caring for patients with palliative care needs. had cared for received suboptimal pain management. Future
Providers found experiences resuscitating patients whom they interventions that improve pain management may be
later found to be DNR troubling. These experiences were particularly beneficial for racial and ethnic minorities, who are
emblematic of their concerns about inadequacies in at particular risk for undertreatment of pain.19
communication with outpatient providers about patients In summary, providers identified a number of barriers to
living with serious illness, including difficult-to-locate or optimal palliative care in the ED, as well as opportunities for
incomplete advance directives documentation. These cases, exploration and improvement. We are currently conducting
although infrequent, were occurring too commonly for these in-person qualitative interviews with patients who have
providers. In the Study to Understand the Prognoses and palliative care needs and are admitted through the ED and
Preferences for Outcomes and Risks of Treatments with their caregivers. Findings from patient and caregiver
(SUPPORT), nearly one third of hospitalized patients and interviews will complement and expand on the focus group
their treating physicians did not agree about preferences for findings from ED providers presented here. Future
resuscitation, and resuscitation was attempted for 1 of 20 interventions should focus on improving communication and
patients with a preference for DNR.15 documentation about goals of care with outpatient providers
Providers were nearly unanimous in their belief that and skills training in communication and symptom
improved communication and documentation from management. We believe that collaborative efforts between
outpatient providers should be a major focus of future emergency, palliative, and outpatient providers are the best

92 Annals of Emergency Medicine Volume , . : July


Smith et al Palliative Care in the Emergency Department

course to improving care for ED patients with serious illness 2. Meier DE, Beresford L. Fast response is key to partnering with
and for their families. the emergency department. J Palliat Med. 2007;10:641-645.
3. EPEC-EM. Available at: http://www.epec.net/EPEC/Webpages/
epecem.cfm. Accessed April 14, 2008.
The authors would like to thank Jo Ayoub, BA, for her expertise 4. Chan GK. End-of-life and palliative care in the emergency
moderating focus groups, Mary Quilty, BA, for administrative department: a call for research, education, policy and improved
assistance, and Malkeet Gupta, MD, for his thoughtful comments practice in this frontier area. J Emerg Nurs. 2006;32:101-103.
on an earlier draft of this article. 5. Goodacre S. Research methods: beyond the clinical trial. Ann
Emerg Med. 2003;42:56-65.
6. Maxwell JA. Qualitative Research Design: An Iterative Approach.
Supervising editor: Rita K. Cydulka, MD, MS Thousand Oaks, CA: Sage Publications; 1996.
Author contributions: AKS had full access to all of the data in 7. American Academy of Hospice and Palliative Medicine. Available
the study and takes responsibility for the integrity of the data at: http://www.aahpm.org/about/index.html#Definition. Accessed
April 15, 2007.
and the accuracy of the data analysis. AKS, JF, MAS, DJP,
8. Rice PL, Ezzy D. Qualitative Research Methods: A Health Focus.
SDB, LF, RSP, and EPM were responsible for study concept
New York, NY: Oxford University Press; 1999.
and design and revision of the article for important intellectual 9. A National Framework and Preferred Practices for Palliative and
content. AKS acquired the data. AKS, JF, and MAS were Hospice Care Quality: A Consensus Report. Washington, DC: NQF;
responsible for analysis and interpretation of data. AKS 2006.
drafted the article. LF obtained funding. AKS supervised the 10. Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl
study. AKS takes responsibility for the paper as a whole. J Med. 2004;350:2582-2590.
11. Wilper AP, Woolhandler S, Lasser KE, et al. Waits to see an
Funding and support: By Annals policy, all authors are required to
emergency department physician: US trends and predictors,
disclose any and all commercial, financial, and other 1997-2004. Health Aff (Millwood). 2008;27:w84-95.
relationships in any way related to the subject of this article, that 12. Covinsky KE, Goldman L, Cook EF, et al. The impact of serious
might create any potential conflict of interest. See the illness on patients families. SUPPORT Investigators. Study to
Manuscript Submission Agreement in this issue for examples of Understand Prognoses and Preferences for Outcomes and Risks
specific conflicts covered by this statement. This study was of Treatment. JAMA. 1994;272:1839-1844.
performed in its entirety while Dr. Smith was a general medicine 13. Emanuel EJ, Fairclough DL, Slutsman J, et al. Understanding
fellow at Beth Israel Deaconess Medical Center. This research economic and other burdens of terminal illness: the experience of
was supported by The Julie Henry Fund at Beth Israel Deaconess patients and their caregivers. Ann Intern Med. 2000;132:451-
Hospital. Dr. Smith was supported by an institutional National 459.
Research Service Award, #5 T32 HP11001-19. 14. Glajchen M. The emerging role and needs of family caregivers in
cancer care. J Support Oncol. 2004;2:145-155.
Publication dates: Received for publication April 30, 2008. 15. Teno JM, Hakim RB, Knaus WA, et al. Preferences for
Revision received August 11, 2008. Accepted for publication cardiopulmonary resuscitation: physician-patient agreement and
August 22, 2008. Available online October 18, 2008. hospital resource use. The SUPPORT Investigators. J Gen Intern
Med. 1995;10:179-186.
Reprints not available from the authors. 16. Prendergast TJ. Advance care planning: pitfalls, progress,
promise. Crit Care Med. 2001;29(2 suppl):N34-39.
Address for correspondence: Alexander K. Smith, MD, MS,
17. Fagerlin A, Schneider CE. Enough. The failure of the living will.
MPH, Division Geriatrics, UCSF, 4150 Clement St (181G), San
Hastings Cent Rep. 2004;34:30-42.
Francisco, CA 94121; 415-221-4810 extension 4684, fax: 18. Raschke RA, Gollihare B, Wunderlich TA, et al. A computer alert
415-750-6641; E-mail aksmith@ucsf.edu. system to prevent injury from adverse drug events: development
and evaluation in a community teaching hospital. JAMA. 1998;
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1. Earle CC, Neville BA, Landrum MB, et al. Trends in the 19. Pletcher MJ, Kertesz SG, Kohn MA, et al. Trends in opioid
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2004;22:315-321. emergency departments. JAMA. 2008;299:70-78.

Volume , . : July Annals of Emergency Medicine 93


Appendix E1. Focus group guide.

I. Panel Intoductions and Perceptions of a Palliative Care 10 min.


. Please introduce yourself by first name and occupation in the ED, and tell us what one
word or phrase comes to mind when you hear the term palliative care?
. (after hearing participants introductions and descriptions of palliative care, handout
definition) Please take a moment to read this definition of palliative care from the
leading palliative care organization: The goal of palliative care is to prevent and relieve
suffering and to support the best possible quality of life for patients and their families,
regardless of the stage of the disease or the need for other therapies. Palliative care can be
delivered at the same time as life-prolonging care or as the main focus of care. Palliative
care is achieved through effective management of pain and other distressing symptoms,
while incorporating psychosocial and spiritual care according to patient/family needs,
values, beliefs and culture(s). (adapted from the American Academy of Hospice and
Palliative Medicine website www.aahpm.org)
Reactions to this definition?
Would you say that a shared perception of palliative care exists among your ED
provider colleagues?

II. Reasons for ED visit 10 min.


. Tell us about palliative care patients that come to the ED and why?
What are the goals of palliative care patients in coming to the ED?
Have you seen hospice patients in the ED?

III. ED Care Experiences 20 min.


. What is it like caring for palliative care patients?
What are the rewards? What are the challenges?
Have there been cases where you have resuscitated seriously ill patients only to
discover later that they were DNR? Tell us about that.
Can you think of a specific example of a particularly challenging communication
issue with a palliative care patient or family?
How is the advance care planning documentation in the medical record?

V. Shaping future care trajectories, targeting interventions 15 min.


. Handout priorities for improvement handout
If you think about the future and being able to provide exceptional care for
palliative care patients in the ED, what would you say are the top priorities for
improving care? I want everybody to take a minute to rank the top three areas on
this handout in terms of targeted areas for improvement. What did people put as
the number one priority?
How might palliative care patients be identified over the course of an ED visit?
To what extent does palliative care belong in the ED?

93.e1 Annals of Emergency Medicine Volume , . : July

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