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https://doi.org/10.1177/0269216317733381
Palliative Medicine
2018, Vol. 32(1) 59 –68
© The Author(s) 2017
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DOI: 10.1177/0269216317733381
journals.sagepub.com/home/pmj
What happens during early outpatient
palliative care consultations for persons
with newly diagnosed advanced cancer?
A qualitative analysis of provider
documentation
Gulcan Bagcivan1,2, J Nicholas Dionne-Odom1, Jennifer Frost1,
Margaret Plunkett3, Lisa A Stephens4, Peggy Bishop4,
Richard A Taylor1, Zhongze Li5, Rodney Tucker6
and Marie Bakitas1,6
Abstract
Background: Early outpatient palliative care consultations are recommended by clinical oncology guidelines globally. Despite these
recommendations, it is unclear which components should be included in these encounters.
Aim: Describe the evaluation and treatment recommendations made in early outpatient palliative care consultations.
Design: Outpatient palliative care consultation chart notes were qualitatively coded and frequencies tabulated.
Setting/participants: Outpatient palliative care consultations were automatically triggered as part of an early versus delayed
randomized controlled trial (November 2010 to April 2013) for patients newly diagnosed with advanced cancer living in the rural
Northeastern US.
Results: In all, 142 patients (early = 70; delayed = 72) had outpatient palliative care consultations. The top areas addressed
in these consultations were general evaluations—marital/partner status (81.7%), spirituality/emotional well-being (80.3%), and
caregiver/family support (79.6%); symptoms—mood (81.7%), pain (73.9%), and cognitive/mental status (68.3%); general treatment
recommendations—counseling (39.4%), maintaining current medications (34.5%), and initiating new medication (23.9%); and
symptom-specific treatment recommendations—pain (22.5%), constipation (12.7%), depression (12.0%), advanced directive
completion (43.0%), identifying a surrogate (21.8%), and discussing illness trajectory (21.1%). Compared to the early group,
providers were more likely to evaluate general pain (p = 0.035) and hospice awareness (p = 0.005) and discuss/recommend hospice
(p = 0.002) in delayed group participants.
Conclusion: Outpatient palliative care consultations for newly diagnosed advanced cancer patients can address patients’ needs and
provide recommendations on issues that might not otherwise be addressed early in the disease course. Future prospective studies
should ascertain the value of early outpatient palliative care consultations that are automatically triggered based on diagnosis or
documented symptom indicators versus reliance on oncologist referral.
Keywords
Outpatient, palliative care, consultation, randomized controlled trial, cancer
1 UAB School of Nursing, The University of Alabama at Birmingham,
Birmingham, AL, USA
2
Gulhane Training and Research Hospital, Ankara, Turkey
3 The Center for Nursing Excellence, Dartmouth-Hitchcock Medical
Center, Lebanon, NH, USA
4
Palliative Care, Sentara Martha Jefferson Hospital, Charlottesville, VA,
USA
5Norris Cotton Cancer Center, Lebanon, NH, USA
6 UAB Center for Palliative and Supportive Care, University of Alabama
at Birmingham, Birmingham, AL, USA
Corresponding author:
Marie Bakitas, UAB School of Nursing, The University of Alabama at
Birmingham, MT 412C, 1720 2nd Avenue South, Birmingham,
AL 35294-1210, USA.
Email: mbakitas@uab.edu
733381PMJ0010.1177/0269216317733381Palliative MedicineBagcivan et al.
research-article2017
Original Article
60 Palliative Medicine 32(1)
What is already known about the topic?
Early palliative care for persons with newly diagnosed advanced cancers is recommended by the World Health
Organization to enhance quality of life, symptoms, mood, and survival.
Outpatient palliative care consultations have demonstrated benefit in clinical trials among those with newly diagnosed
advanced cancers; however, little has been reported about what happens during these encounters.
What this paper adds?
This is one of the first studies to describe outpatient palliative care consultation encounters that are initiated early in
the patient’s advanced diagnosis.
Outpatient palliative care consultations for newly diagnosed advanced cancer patients were found to prospectively
address patients’ needs for additional counseling, symptom control, and advance care planning.
Implications for practice, theory or policy
Outpatient palliative care consultations may identify important patient issues that can be addressed prospectively and
thus preempt occurrence of future problems.
Timing of outpatient palliative care consultations in newly diagnosed patients with advanced cancer remains an impor-
tant topic for future research.
Standardizing outpatient palliative care consultations assessments, consistent with National Consensus Guidelines, can
assure that priority areas are addressed and may optimize the care of patients with advanced cancer.
Introduction
National and international guidelines and organizations
such as American Society of Clinical Oncology (ASCO)
recommend the delivery of palliative care services along-
side standard oncology care early in the course of treat-
ment for patients with metastatic cancer and/or a high
symptom burden.1–5 Because most persons with newly
diagnosed advanced cancer spend the majority of their
time outside of the hospital, early access to palliative care
typically occurs in the outpatient setting.6,7 While growth
in inpatient hospital palliative care teams in North
America and Europe has been a positive step,8,9 this same
explosive growth has not yet occurred in the outpatient
setting.10,11 Mounting evidence in the United States and
Canada suggests that early, outpatient palliative care con-
sultations improve patient outcomes,12–16 yet a large pro-
portion of cancer centers do not have outpatient palliative
care clinics.6,8,10,17 In the United States, a number of bar-
riers have been cited for this slower development of
early, outpatient palliative care evaluations, one of which
is the lack of clarity about the value added from proactive
versus symptom-triggered palliative care evaluation and
assessment.6 Indeed, very little has been reported in the
literature about what occurs in outpatient palliative care
consultations that are part of a comprehensive early pal-
liative care approach.
ENABLE outpatient palliative care model
ENABLE (Educate, Nurture, Advise, Before Life Ends) is
an evidenced-based model of early concurrent oncology
palliative care that includes an in-person, protocol-driven,
outpatient palliative care consultation performed by a
board-certified palliative care physician or nurse practi-
tioner followed by telephone-delivered sessions by a pal-
liative care nurse coach. The description and outcomes of
the ENABLE intervention, including the coaching ses-
sions, have been detailed elsewhere;12,16,18,19 however, the
content of the protocol-driven, in-person outpatient pallia-
tive care consultations has not been described. Because
generalist clinical assessment (i.e. the interview, physical
examination, and diagnostic work-up) and care planning
do not target all of the domains addressed in a palliative
care consultation,20 the National Consensus Project (NCP)
for Quality Palliative Care framework has delineated a
standardized approach.21 The NCP framework—and hence
the palliative assessment—includes eight domains: struc-
ture and processes of care; physical aspects of care; psy-
chological and psychiatric aspects; social aspects of care;
spiritual, religious, and existential aspects of care; cultural
aspects of care; care of the patient at the end of life; and
ethical and legal aspects of care.21 With some exceptions,11
early palliative care clinical trials have not reported the
details of the components of these assessments or the
nature of recommendations that occur when relatively
asymptomatic patients are evaluated.12–16 Hence, we
endeavored to describe the evaluation and treatment rec-
ommendations and advance care planning (ACP) discus-
sions occurring in proactive outpatient palliative care
consultations for persons with advanced cancer participat-
ing in the ENABLE III trial.12
Bagcivan et al. 61
Research questions
1. What were the most frequently mentioned evalua-
tions and recommendations documented in outpa-
tient palliative care consultation notes?
2. What were the most frequently documented ACP
activities noted in the consultations?
Methods
Study design
We conducted a retrospective qualitative content analysis
of the ENABLE III outpatient palliative care consultation
chart notes. In addition, we performed quantitative analy-
sis to compare the frequencies of evaluations and recom-
mendations made in consultations between the two study
groups. Institutional review boards of the Norris Cotton
Cancer Center/Dartmouth College (Lebanon, NH) and the
Veterans Affairs Medical Center (White River Junction,
VT) approved the parent study protocol and the study was
listed in ClinicalTrials.gov (NCT01245621). All partici-
pants signed written informed consent before initiating
any study activities.
Setting and patients
From October 2010 to March 2013, patient participants were
recruited from the Norris Cotton Cancer Center, affiliated
outreach clinics, and the Veterans Affairs Medical Center in
New Hampshire and Vermont. Research coordinators identi-
fied potential participants by reviewing outpatient clinicians’
schedules and tumor board lists. Eligibility criteria included
the following: English-speaking, age ⩾ 18 years, newly diag-
nosed advanced-stage solid tumor or hematologic malig-
nancy, oncologist-determined prognosis of 6–24 months, and
able to complete baseline questionnaires. Exclusion criteria
were impaired cognition (Callahan score ⩽ 4),5 active psy-
chiatric conditions (e.g. schizophrenia, bipolar disorder) or
substance use disorder, uncorrectable hearing disorder, or
unreliable telephone service.12
Outpatient palliative care consultation
Patients for the parent trial were eligible if they were within
60 days of diagnosis of an advanced-stage cancer and had not
been seen previously by palliative care. They were then ran-
domized to receive the ENABLE intervention immediately
(early group) or 12 weeks (delayed group) after randomiza-
tion at which point research staff ordered the outpatient pal-
liative care consultation. Patients were encouraged to invite
their caregiver to participate in the visit. The outpatient pal-
liative care consultation, conducted by a board-certified pal-
liative care physician or nurse practitioner, followed the
standard of care for outpatient palliative care consultation,
consisting of a review of past medical records and an
assessment of the domains specified in the NCP guidelines
(i.e. review of patient’s understanding of their illness; assess-
ment of physical, psychological, social, and spiritual
domains; and goals of care/ACP; and physical exam). The
provider then developed a plan of care with the patient that
included follow-up (if appropriate) for any problems that
were identified (i.e. need for symptom management or fur-
ther counseling). The provider-documented plan of care was
documented in the electronic medical record and e-mailed in
real time to the Nurse Coaches and other clinicians as appro-
priate. Patients became part of the palliative care panel and
were presented at the weekly interdisciplinary team (IDT)
meeting. The team received automated alerts of hospital
admission for all patients on the palliative care panel. All
study participants continued to utilize their standard of care
oncology services (routine visits with their oncologists and
oncology team) in addition to the palliative care intervention
(ENABLE III). Each patient’s outpatient palliative care con-
sultation note was printed from the electronic record and de-
identified prior to coding.
Data analysis
The study team employed an adapted consultation note cod-
ing schema, originally developed by Bekelman et al.22 This
approach is one of few established methods to evaluate out-
patient palliative care consultation content and was chosen
based on our prior work evaluating outpatient palliative care
consultation in patients with heart failure.23 The coding
schema contained 71 evaluation and treatment parameters
grouped into five categories: general evaluation, symptom-
specific evaluation, general treatment recommendations,
symptom-specific treatment recommendations, and ACP.
Six members of the research team qualitatively coded the
outpatient palliative care consultation notes by hand and fre-
quencies were tabulated. To assure coding consistency, all
six members coded two notes and had a series of meetings
to compare and discuss coding inconsistencies. This process
allowed all members to resolve and reach consensus on
code definitions. After all notes were coded, an external pal-
liative care expert independently coded two of each team
member’s notes as a final consistency audit. All coding dis-
crepancies among coders were discussed and resolved
through group consensus. Inter-rater agreement was calcu-
lated and notes that did not reach 0.8 agreement were dis-
cussed until coding consistency was reached. Evaluated
areas and recommendations were aggregated from all notes
and reported using frequencies and percentages.24
Patient’s baseline outcomes were presented as means
and standard deviations (SDs) for continuous variables
(age and symptoms, quality-of-life, and depression scale
scores) and numbers and percentages for categorical vari-
ables (e.g. demographics and limited medical characteris-
tics). The Statistical Package for Social Sciences, version
21.00 (SPSS Inc., Chicago, IL, USA), and Microsoft Excel
62 Palliative Medicine 32(1)
2013 software were used for all descriptive and inferential
statistical analyses.
Results
Sample characteristics
Of the 207 ENABLE III trial participants, 142 (69%;
early = 70; delayed = 72) had an outpatient palliative care
consultation which lasted a median of 60 min (range 20–
105 min). In all, 31% (n = 65) of the parent trial partici-
pants did not receive an outpatient palliative care
consultation due to unable (n = 35, 53.8%), declined
(n = 13, 20%), or unknown (n = 17, 26.1%) reasons.
Consulted patients’ mean age was 68 years, mostly
high-school graduated (n = 77, 54%), female (n = 72,
50.7%), married or living with partner (n = 93, 65.5%),
rural dwelling (n = 93, 65.5%), had gastrointestinal tract
cancers (n = 33, 23.2%), and high functional status (mean
Karnofsky score = 82.25% ± 9.56%). In comparison to
participants receiving an outpatient palliative care consul-
tation, participants who did not receive an outpatient pal-
liative care consultation were more likely to be rural
dwelling (p = 0.03), were less likely to have had a hospice
referral (p = 0.03), and had higher quality of life (p = 0.02)
and lower depression scores (p = 0.007; data not shown).
As shown in Table 1, patients’ characteristics and base-
line self-reported quality of life, symptom, and mood
scores were not statistically different between early and
delayed group participants who received an outpatient pal-
liative care consultation.
Outpatient palliative care consultation general
and symptom-specific evaluation areas
Table 2 shows general, symptom-specific, and advance
directive (AD) evaluations by group assignment (early vs
delayed). The general areas most frequently evaluated by
the palliative care provider were marital/partner status
(n = 116, 81.7%), spirituality/emotional well-being
(n = 114, 80.3%), and caregiver/family support (n = 113,
79.6%). The three most frequently evaluated symptoms
were mood (n = 116, 81.7%), pain (n = 105, 73.9%), and
cognitive/mental status (n = 97, 68.3%). Patients in the
delayed group were more likely to be evaluated for hos-
pice (p = 0.005) and general pain (p = 0.035).
Outpatient palliative care consultation
general and symptom-specific treatment
recommendations
Table 3 shows the frequency of general and symptom-spe-
cific treatment recommendations by group assignment
(early vs delayed). The three most frequent general treat-
ment recommendations were counseling (n = 56, 39.4%),
maintaining current medications (n = 49, 34.5%), and initi-
ating new medications (n = 34, 23.9%). The three most fre-
quent symptom-specific treatment recommendations were
for general pain (n = 32, 22.5%), constipation (n = 18,
12.7%), and depression (n = 17, 12%).
ACP
Table 4 shows ACP activities present in the outpatient pal-
liative care consultation notes by group assignment (early
vs delayed). Completing ADs (n = 61, 43%), identifying
surrogates (n = 31, 21.8%), and discussing illness trajec-
tory (n = 30, 21.1%) were the most common ACP activities
identified.
Post hoc analyses comparing early versus
delayed groups
We explored whether there were differences in evalua-
tions, treatment recommendations, and ACP activities
between the early and delayed group using Chi-square and
t-tests. The only significant difference noted was that pal-
liative care providers were more likely to have documented
discussions about hospice (p = 0.002) and general pain
(p = 0.035) in delayed group participants.
Discussion
This is one of the first studies to describe the content of
outpatient palliative care consultations that were con-
ducted proactively soon after an advanced cancer diagno-
sis as part of an early palliative care intervention trial. In
this trial, outpatient palliative care consultations were
focused on holistic assessment of physical symptoms, psy-
chosocial needs, spirituality, coping, and ACP rather than
referral for a specific problem or symptom. These non-
emergent outpatient palliative care consultations revealed
important needs, and clinicians were able to make general
recommendations for counseling, medication manage-
ment, and ACP. Evaluation of social support (marital/part-
ner status) and recommendations for counseling were the
most commonly addressed areas. Such recommendations
encourage relationship building that is critical to having
sensitive conversations around psychosocial concerns.
Although the trial palliative care nurse coaches’ sessions
provided some psychosocial support, referrals to other
psychosocial services (e.g. chaplaincy, social work) were
also stressed. Indeed, we found that referrals to other spe-
cialty services occurred in 21.8% of the encounters. These
supportive care factors may have enhanced the therapeutic
space and helped patients identify a surrogate decision-
maker, discuss their illness experiences over time, and
explore spiritual and existential concerns.
The high rate of recommendations for AD completion
(43%), code status discussions, and identification of
Bagcivan et al. 63
Table 1. Characteristics of patients receiving protocol-driven outpatient palliative care consultation.
Mean (SD) or n (%)
Characteristic Early group (n = 70) Delayed group (n = 72) p value*
Age, mean (SD) 63.8 (11.19) 63.57 (9.14) 0.89
Male 37 (52.86) 33 (45.83) 0.50
Marital status
Never married 6 (8.57) 4 (5.56) 0.37
Married or living with partner 48 (68.57) 45 (62.5)
Divorced or separated 8 (11.43) 16 (22.22)
Widowed 8 (11.43) 7 (9.72)
Education
<High-school graduate 5 (7.14) 2 (2.78) 0.23
High-school graduate 41 (58.57) 36 (50)
College graduate 24 (34.29) 34 (47.22)
Racea
White 69 (98.57) 71 (98.61) 0.50
Black 0 (0) 0 (0)
Other 1 (1.43) 0 (0)
Missing 0 (0) 1 (1.39)
Religion
Catholic 25 (35.71) 18 (25) 0.45
Protestant 17 (24.29) 25 (34.72)
Jewish 1 (1.43) 0 (0)
None 15 (21.43) 15 (20.83)
Other 11 (15.71) 12 (16.67)
Missing 1 (1.43) 2 (2.78)
Work status
Employed 20 (28.57) 16 (22.22) 0.65
Retired 31 (44.29) 35 (48.61)
Not employed 18 (25.71) 21 (29.17)
Student 1 (1.43) 0 (0)
Caregiver enrolled 44 (62.86) 43 (59.72) 0.73
Lives in rural area 48 (68.57) 45 (62.5) 0.48
Diagnosis
Lung 31 (44.29) 31 (43.06) 0.93
Gastrointestinal tract 18 (25.71) 15 (20.83)
Breast 7 (10) 10 (13.89)
Other solid tumor 4 (5.71) 6 (8.33)
Genitourinary tract 6 (8.57) 7 (9.72)
Hematologic malignancies 4 (5.71) 3 (4.17)
Karnofsky performance status 81.14 (10.57) 83.33 (8.39) 0.17
Advance directive in chart at enrollment
Living will or durable power of attorney 28 (40) 33 (45.83) 0.50
Do not resuscitate order 9 (12.86) 4 (5.56) 0.16
Referral to hospice 0 (0) 0 (0) NA
FACIT-Pal 131.05 (19.88) 125.11 (21.48) 0.09
Physical well-being 21.04 (5.35) 19.31 (6.09) 0.07
Social well-being 22.44 (4.52) 21.7 (5.07) 0.37
Emotional well-being 8.82 (3.75) 8.59 (3.92) 0.72
Functional well-being 18.12 (6.06) 17.07 (6.33) 0.31
Additional concerns 60.63 (9.29) 58.44 (9.72) 0.17
QUAL-E symptom impact subscale 71.87 (10.22) 71.18 (9.17) 0.67
CES-D 12.93 (9.23) 12.9 (9.36) 0.98
SD: standard deviation.
Percentages may not equal 100% because of rounding.
Quality of life (QOL) was assessed by 46-item Functional Assessment of Chronic Illness Therapy—Palliative Care (FACIT-Pal), composed of physical, emotional, social,
and functional well-being and additional concern subscales (score range: 0–184; higher score is better; subscale α > 0.74).25
Symptom impact was assessed by four-item Quality of Life at End of Life (QUAL-E) symptom impact subscale (score range = 4–20; higher score is better; α = 0.87).26
Mood was assessed by 20-item Center for Epidemiologic Studies–Depression Scale (CES-D); range = 0–60; higher score indicates greater depressed mood; score > 16
indicates clinically significant depression.27
aNo participants were of Hispanic ethnicity; three participants did not respond to question.
*Fisher’s exact test was used for categorical variables; t-test was used for continuous variables.
64 Palliative Medicine 32(1)
surrogates highlights the need for early ACP and on-going
conversations rather than viewing ACP as a one-time
event.28 The recent Institute of Medicine report, “Dying in
America,” stated that engaging patients and families in on-
going ACP and shared decision-making is one of the new
and encouraging opportunities for improving care qual-
ity.29 Improving AD completion rates has been identified
as a US national priority and is the subject of several prac-
tice, policy, and research initiatives.30 Nevertheless for
these efforts to make a difference, care wishes must be
consistently communicated across care settings.
Unfortunately, ADs are still absent in many charts and hos-
pitalized patients are at risk of receiving cardiopulmonary
resuscitation (CPR) because code status discussions may
not be systematically documented in their medical
records.31 Early outpatient palliative care consultation has
the potential to improve such parameters by encouraging
in-depth goals of care discussions when patients are stable,
thus avoiding late, hurried, or absent discussions around
urgent treatment decisions.30,32
Not surprisingly, our study found that when outpa-
tient palliative care consultation occurred in the delayed
group, palliative care providers had more hospice dis-
cussions. Although many studies show that hospice dis-
cussions occur late in the disease trajectory,33,34 some
may not view 12 weeks after diagnosis as particularly
late. Early end-of-life discussions are recommended by
national guidelines and are associated with less
Table 2. Outpatient palliative care consultations—general and symptom-specific evaluation topics by group.
Total, n (%)aEarly group
(n = 70), n (%)
Delayed group
(n = 72), n (%)
p**
General evaluation
Marital/partner status 116 (81.7) 60 (51.7) 56 (48.3) 0.221
Spirituality/emotional well-being/coping 114 (80.3) 59 (51.8) 55 (48.2) 0.237
Caregiver/family support/children 113 (79.6) 60 (53.1) 53 (46.9) 0.074
Advance directive and code status 112 (78.9) 54 (48.2) 58 (51.8) 0.618
Goals of care identified 108 (76.1) 54 (50.0) 54 (50.0) 0.765
Work history 98 (69.0) 53 (54.1) 45 (45.9) 0.146
Substance abuse 92 (64.8) 44 (47.8) 48 (52.2) 0.635
Prognosis understanding 83 (58.5) 42 (50.6) 41 (49.4) 0.712
Living arrangements 81 (57.0) 36 (44.4) 45 (55.6) 0.182
Functional status 78 (54.9) 39 (50.0) 39 (50.0) 0.853
Surrogate identified 61 (43.0) 28 (45.9) 33 (54.1) 0.397
Specific symptom medication review 60 (42.3) 30 (50.0) 30 (50.0) 0.886
Decisional capacity 46 (32.4) 21 (45.7) 25 (54.3) 0.473
Financial 26 (18.3) 16 (59.3) 11 (40.7) 0.250
Education 20 (14.1) 12 (60.0) 8 (40.0) 0.335
Hospice 14 (9.9) 2 (14.3) 12 (85.7) 0.005
Cultural background 4 (2.8) 2 (50.0) 2 (50.0) 1.000
Symptom-specific evaluation
Mood 116 (81.7) 58 (50.0) 58 (50.0) 0.723
General pain 105 (73.9) 47 (44.8) 58 (55.2) 0.035
Cognitive/mental status 97 (68.3) 49 (50.5) 48 (49.5) 0.857
Breathlessness 93 (65.5) 42 (45.2) 51 (54.8) 0.175
Fatigue 91 (64.1) 45 (49.5) 46 (50.5) 0.861
Nausea/vomiting 90 (63.4) 44 (48.9) 46 (51.1) 0.728
Weight loss/dietary concerns 83 (58.5) 42 (50.6) 41 (49.4) 0.712
Constipation 78 (54.9) 37 (47.4) 41 (52.6) 0.500
Sleep problem 60 (42.3) 27 (45.0) 33 (55.0) 0.308
Diarrhea 56 (39.4) 29 (51.8) 27 (48.2) 0.731
Anorexia 51 (35.9) 28 (54.9) 23 (45.1) 0.382
Chest pain 45 (31.7) 21 (46.7) 24 (53.3) 0.588
Cough 42 (29.6) 24 (57.1) 18 (42.9) 0.270
Neuropathy/neuropathic pain 33 (23.2) 14 (42.4) 19 (57.6) 0.367
Dry mouth/mucositis 24 (16.9) 13 (54.2) 11 (45.8) 0.654
Anticipatory grief 22 (15.5) 9 (40.9) 13 (59.1) 0.354
aIn which the code appeared at least once.
**Chi-square test.
Bold p-values are statistically significant (p<0.05).
Bagcivan et al. 65
aggressive treatments and greater hospice use at the end
of life.35 However, there are many reasons why late hos-
pice discussions occur.21,36 For example, a nationwide
US survey study found that oncologists’ discomfort and
difficulty talking about death and dying was a major bar-
rier for end-of-life discussion even though those same
oncologists believed that early discussion about hospice
and place of death could lead to more opportunities for
life completion activities.37
A unique strength of this study was the ability to
explore differences between outpatient palliative care
consultation completed at study entry (early) compared
with delaying the timing by 12 weeks—though as men-
tioned previously, most still would consider this “delayed”
group relatively “early” in the cancer trajectory. A number
of authors have examined whether early consults result in
lower resource use with some mixed results. A quality
improvement initiative in Ontario, Canada did not find
lower emergency department visits when earlier consults
were conducted; however, they found that 40% of patients
died within 60 days of the consult. Perhaps the timing of
palliative care commonly assessed in studies of early
intervention is still not early enough.38 In contrast, a sin-
gle cancer center study by Hui et al. found that early
(>3 months before death) outpatient palliative care con-
sultations were associated with significantly fewer emer-
gency department visits, hospital admissions, and hospital
deaths compared with those that were performed initially
in the hospital or “late” (>3 months prior to death).
Furthermore, in multivariate analyses, outpatient pallia-
tive care referral was an independent predictor of overall
improved end-of-life care. They propose three possible
Table 3. Outpatient palliative care consultations—general and symptom-specific recommendations by group.
Total, n (%)aEarly group
(n = 71), n (%)
Delayed group
(n = 71), n (%)
p**
General treatment recommendations
Counseling 56 (39.4) 29 (51.8) 27 (48.2) 0.632
Med-maintain 49 (34.5) 23 (46.9) 26 (53.1) 0.683
Med-initiate 34 (23.9) 17 (50.0) 17 (50.0) 1.000
Consult/referral 31 (21.8) 14 (45.2) 17 (54.8) 0.603
Non-pharmacologic treatments 25 (17.6) 12 (48.0) 13 (52.0) 0.826
Spiritual care 19 (13.4) 10 (52.6) 9 (47.4) 0.805
Coordinate care/communication providers 17 (12.0) 5 (55.6) 4 (44.4) 0.731
Med-increase 15 (10.6) 7 (46.7) 8 (53.3) 0.785
Help with decision-making 11 (7.7) 6 (54.5) 5 (45.5) 0.754
Coordinate care/communication family 9 (6.3) 5 (55.6) 4 (44.4) 0.731
Med-decrease 8 (5.6) 5 (62.8) 3 (37.5) 0.467
Anti-neoplastic treatments 7 (4.9) 4 (57.1) 3 (42.9) 0.698
Arrange family meeting 3 (2.1) 1 (33.3) 2 (66.7) 0.560
Med-discontinued 2 (1.4) 1(50.0) 1 (50.0) 1.000
Create pain agreement 2 (1.4) 1(50.0) 1 (50.0) 1.000
Alcohol counseling – – – –
Symptom-specific treatment recommendations
General pain 32 (22.5) 13 (40.6) 19 (59.4) 0.228
Constipation 18 (12.7) 10 (55.6) 8 (44.4) 0.614
Depression 17 (12.0) 9 (52.9) 8 (47.1) 0.796
Breathlessness 10 (7.0) 7 (70.0) 3 (30.0) 0.190
Nausea/vomiting 9 (6.3) 3 (33.3) 6 (66.7) 0.301
Fatigue 8 (5.6) 3 (37.5) 5 (62.5) 0.467
Sleep problem 7 (4.9) 3 (42.9) 4 (57.1) 0.698
Anorexia/appetite 6 (4.2) 3 (50.0) 3 (50.0) 1.000
Anxiety 5 (3.5) 3 (60.0) 2 (40.0) 0.649
Cognitive/mental status 4 (2.8) 1 (20.0) 3 (75.0) 0.310
Diarrhea 3 (2.1) 3 (100.0) – 0.122
Cough 3 (2.1) 2 (66.7) 1 (33.3) 0.560
Edema/lymphedema/skin rash/itching 2 (1.4) 2 (100.0) – 0.149
Chest pain 1 (0.7) – 1 (100.0) 0.500
Dry mouth/mucositis – – – –
aIn which the code appeared at least once.
**Chi-square test.
66 Palliative Medicine 32(1)
mechanisms for these benefits: (1) development of longi-
tudinal therapeutic relationships with the palliative care
provider that facilitated broaching of more sensitive dis-
cussions, such as goals of care and ACP, which may help
to minimize end-of-life aggressive interventions; (2) early
detection and preemptive intervention of distressing
symptoms; and (3) timelier access to psychosocial ser-
vices, home care, and hospice resources.10 Thus, early
outpatient palliative care consultations can allow for
broader leveraging of palliative care services, especially
in the areas of therapeutic relationship building and
resource access and use.39
Limitations
This study has a number of limitations. First, these outpa-
tient palliative care consultations were part of a compre-
hensive early palliative care intervention clinical trial.
Because early outpatient palliative care consultations are
still not provided in many cancer centers, these results
may not represent what might happen outside of a trial.
Second, the study took place in a rural-serving cancer
center in an area with little racial or ethnic diversity and
may not represent more urban, diverse practices. Third,
almost 30% of participants, equally divided between the
early and delayed groups, did not have the outpatient pal-
liative care consultation component of the intervention.
Almost half of those were due to patients’ inability to
make the appointment because of transportation issues,
inconvenience, or other reasons. Only 20% declined
because they thought outpatient palliative care consult not
needed. The patients who did not receive consults were
more likely to live in rural areas and had higher quality of
life and mood scores at baseline. Hence, when patients
feel, they may not see the inconvenience of a long trip to
the medical center as worth the effort. Indeed, many of
those “well” participants would not have met criteria for
outpatient palliative care consultation according to a
recent Delphi consensus process conducted by Hui et al.9
Implications for practice and research
A number of studies of early outpatient palliative care con-
sultation have amassed providing preliminary, but impor-
tant implications for practice and research. In practice, it
seems that the value added of early outpatient palliative
care consultations is that providers may identify important
patient issues that can be addressed prospectively and thus
preempt occurrence of future problems. However, how
“early” and what specific triggers should be used to offer
outpatient palliative care consultations in newly diagnosed
patients with advanced cancer remains an important topic
for future research. Standardizing outpatient palliative
care consultation assessments, consistent with NCP21 and
ASCO Clinical Guidelines,2 can assure that priority areas
are addressed and may optimize the care of patients with
advanced cancer.
Conclusion
These outpatient palliative care consultations offered a crit-
ical layer of support because they addressed patient and
family concerns that might remain unaddressed in the usual
setting of referral-based consultation. Patients and their
family members can be overwhelmed and shocked about
the news of a life-threatening cancer diagnosis, which
sends ripples into every aspect of their day-to-day life.40
Oncologists appropriately focus their time-limited initial
visits of newly diagnosed patients on discussing test results
and options for treatments. This often leaves other issues,
such as coping and all but the most severe symptoms, low
on the priority list of discussion topics. Therefore, patients
who are newly diagnosed with advanced cancer can have
high symptom burden41,42 and ACP needs that go unad-
dressed.25 In our study, the most commonly evaluated
symptoms were mood (anxiety and depression), general
pain, and cognitive/mental status. Even the best-intentioned
oncologists will have difficulty addressing the patients’
complex biopsychosocial symptoms and social situations
Table 4. Advance care planning recommendations by group.
Total, n (%)aEarly group
(n = 71), n (%)
Delayed group
(n = 71), n (%)
p**
Advance care planning
Complete advance directives 61 (43.0) 34 (55.7) 27 (44.3) 0.235
Identify surrogate 31 (21.8) 14 (45.2) 17 (54.8) 0.542
Discuss illness trajectory 30 (21.1) 17 (56.7) 13 (43.3) 0.363
Discuss hospice 26 (18.3) 6 (23.1) 20 (76.9) 0.002
DNR discussion 26 (18.3) 15 (57.7) 11 (42.3) 0.385
Discuss prognosis 18 (12.7) 8 (44.4) 10 (55.6) 0.660
Goals of care weigh and consider 17 (12.0) 8 (47.1) 9 (52.9) 0.796
DNR: do not resuscitate.
aIn which the code appeared at least once.
**Chi-square test.
Bold p-values are statistically significant (p<0.05).
Bagcivan et al. 67
in the usual brief oncology visits.39 Of interest, palliative
care consultants who saw cancer patients in the inpatient
setting, where time may be less of a factor, identified simi-
lar types of issues and recommendations as those that we
describe.26
Given that the specialty palliative care workforce has
not kept pace with the growing demand,27 it is important
to document the value added when employing this scarce
resource. A report on palliative care specialty program
staffing and services found that approximately two-thirds
of palliative care programs are not adequately staffed to
provide outpatient clinical services.43 We hope our find-
ings contribute to the evidence of the value added of
early outpatient palliative care services—a critical and
vulnerable period for patients and families in the
advanced illness experience.
Acknowledgements
The authors would like to thank the members of Dartmouth-
Hitchcock Section of Palliative Medicine (Ira Byock, MD;
Sharona Sachs, MD; and Sandra Knowlton-Soho, RN) and the
nurse practitioners, physicians, and staff of the Section of
Hematology/Oncology (James Rigas, MD, and Marc Pipas,
MD); Veterans Affairs Medical Center (VAMC, White River
Junction, VT; Stefan Balan, MD; Luann Graves; Lisa Lambert,
MD; Nancy Kuemmerle, DO, PhD; and Sarah Colson, APRN);
Mountainview Medical Center (Berlin, VT; John Valentine, MD;
and Elaine Owen, APRN); the Dartmouth-Hitchcock Norris
Cotton Cancer Center South staff; St Joseph Medical Center
(Nashua, NH); VAMC (Providence, RI; Katherine Farisy-
Anderson, MD); and the study staff (Terry Kneeland, MPH;
Daphne Ellis; Ingrid Svensborn, RN; and Linda Kingman). Most
importantly, the authors thank all the patients who were their big-
gest teachers and contributed to their understanding of their
needs as they live with cancer.
ClinicalTrials.gov Identifier: NCT01245621.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article: The
ENABLE III study was supported by the National Institute for
Nursing Research (R01NR011871-01), Cancer and Leukemia
Group B Foundation Clinical Scholar Award (no number), and
the Foundation for Information for Informed Medical Decision-
Making (no number). Dr Gulcan Bagcivan is a post-doctoral visit-
ing scholar supported by The Scientific and Technological
Research Council of Turkey (TUBITAK; 1059B191500575) and
University of Alabama at Birmingham, School of Nursing. Dr
Dionne-Odom has received support from the NIH/NINR
(1K99NR015903), the National Cancer Institute (2R25CA047888-
24), the National Palliative Care Research Center, and the
American Cancer Society (RSG PCSM–124668).
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