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Support Care Cancer (2015) 23:1073–1080
DOI 10.1007/s00520-014-2460-4
ORIGINAL ARTICLE
The oncology palliative care clinic at the Princess Margaret
Cancer Centre: an early intervention model for patients
with advanced cancer
Breffni Hannon & Nadia Swami & Ashley Pope & Gary Rodin & Elizabeth Dougherty &
Ernie Mak & Subrata Banerjee & John Bryson & Julia Ridley & Camilla Zimmermann
Received: 2 May 2014 / Accepted: 22 September 2014 / Published online: 4 October 2014
# Springer-Verlag Berlin Heidelberg 2014
Abstract Several recently published randomized controlled
trials have demonstrated the benefits of early palliative care
involvement for patients with advanced cancer. In the oncology outpatient setting, palliative care clinics are an ideal site
for the provision of early, collaborative support, which can be
maintained throughout the cancer trajectory. Despite this,
access to ambulatory palliative care clinics is limited, even at
tertiary cancer centres. Existing programs for outpatient palliative care are variable in scope and are not well described in
the literature. We describe the development and expansion of
an outpatient palliative care clinic at the Princess Margaret
Cancer Centre, Toronto, Canada, demonstrating how the clinic functions at a local and regional level. This clinic served as
the intervention for a recent large cluster-randomized trial of
early palliative care. The model for this service can be adapted
by other palliative care programs that aim to provide early,
integrated oncology care.
B. Hannon : J. Bryson : C. Zimmermann
Division of Medical Oncology & Hematology, Department of
Medicine, University of Toronto, Toronto, Canada
E. Mak : S. Banerjee : J. Ridley
Division of Palliative Care, Department of Family and Community
Medicine, University of Toronto, Toronto, Canada
G. Rodin : C. Zimmermann
Department of Psychiatry, University of Toronto, Toronto, Canada
B. Hannon : N. Swami : A. Pope : G. Rodin : E. Dougherty :
E. Mak : S. Banerjee : J. Bryson : J. Ridley : C. Zimmermann (*)
Department of Psychosocial Oncology and Palliative Care, Princess
Margaret Cancer Centre, University Health Network, 610 University
Ave., 16-712, Toronto, Ontario M5G 2 M9, Canada
e-mail: [email protected]
G. Rodin : C. Zimmermann
Campbell Family Cancer Research Institute, Princess Margaret
Cancer Centre, University Health Network, Toronto, Canada
Keywords Palliative care . Advanced cancer . Early
intervention . Outpatient clinic
Introduction
Early integration of specialized palliative care for patients with
advanced cancer leads to improved patient outcomes [1–4]
and is increasingly recommended [5–7], but remains the exception rather than the norm. Specialized palliative care services have traditionally been provided for inpatients, in palliative care units and by consultation services [8]. However,
most cancer care occurs on an outpatient basis, and in order for
palliative care to be integrated early, outpatient palliative care
consultations and follow-up are necessary. Palliative care
clinics provide an ideal venue for early palliative care involvement and for the collaborative integration of palliative care
into routine cancer care [1, 9–11]. However, many treatment
centres still do not have outpatient palliative care clinics [9,
12], and there have been few descriptions of such clinics in the
medical literature [13]. One narrative review of 20 clinics has
been published, but this review presented summary statistics
rather than describing the detailed operational functioning of
individual clinics [14].
Here we describe the development and structure of an
oncology palliative care clinic (OPCC) in Toronto, Canada,
which is integrated within a palliative care program at a
comprehensive cancer centre and university hospital. This
clinic was the main venue for an early palliative care intervention, which resulted in improved quality of life and increased satisfaction with care for patients with a wide range
of cancer types [3]. We will describe how the clinic functions
and how it is integrated into the cancer program, both at the
cancer centre and regionally, within the cancer system in
Toronto and Ontario.
1074
Palliative care in Toronto, Canada
Toronto is the capital of the province of Ontario, and the
largest city in Canada, with a population of approximately 3
million (5.5 million in the Greater Toronto Area). Ontario is
divided into 14 health regions, or Local Health Integration
Networks (LHINs), which are responsible for health services
in their communities, including hospitals and community care
services. The latter are provided by Community Care Access
Centres (CCACs), which organize and coordinate home care
provided by nurses, physiotherapists, social workers, dietitians, occupational therapists, personal support workers and
others, as well as providing home equipment and a drug
benefit program. Application for CCAC services requires
completion of an electronic referral form, and the CCAC staff
work in close collaboration with the referring physician, who
may be a specialist or family physician, with an office- or
community-based practice. The range of services and maximum nursing time provided are based on prognosis (estimated
by the referring physician) and on performance status, as
measured by the Palliative Performance Scale (PPS) [15, 16].
Palliative care in Toronto is provided by hospital-based
palliative care services, in acute and community palliative
care units, in hospices and at home. Home palliative care,
including 24-h on-call coverage, is provided mainly by
community-based groups of physicians dedicated to providing palliative care for patients in their community. These
physicians work closely with the CCAC and family physicians in their area and provide either primary palliative care or
consultative care. Because most family physicians in Toronto
have office-based practices and rarely do house calls, specialized home palliative care physicians provide most of the home
palliative care in Toronto. However, Cancer Care Ontario, the
provincial cancer control agency, has recently undertaken
several initiatives to increase the palliative care involvement
of primary care physicians [17].
Support Care Cancer (2015) 23:1073–1080
The palliative care program at PM is housed within the
Department of Psychosocial Oncology and Palliative Care. In
addition to daily palliative care clinics, the palliative care
program also has a 12-bed acute palliative care unit (the
Lederman Palliative Care Centre) [18] and a 10-bed residential hospice (Kensington Hospice). It is also part of the larger
UHN palliative care program that includes inpatient consultation services at all sites [19]. This represents one of the most
comprehensive programs available in a North American cancer centre and encompasses all of the key operational features
for hospital palliative care programs as outlined by the Center
to Advance Palliative Care [8].
Philosophy and evolution of the oncology palliative care
clinic
The OPCC provides a venue for specialized early palliative
care of ambulatory patients with cancer. The emphasis is on
timely, collaborative care, and on fluid communication with
the various individuals and programs involved in the patient’s
ongoing care; mainly, these are the patient and family, the
referring oncology team, CCAC care providers and the patient’s family physician (Fig. 1). For this reason, care is
provided longitudinally, rather than in a single consultation,
and telephone follow-up with patients and care providers is a
crucial component of care.
The OPCC was established in 2002, with a single physician
providing consultations and follow-up in a once-weekly clinic. At that time, clinic space and a receptionist were shared
Structure of the palliative care program at the Princess
Margaret Cancer Centre
The Princess Margaret Cancer Centre (PM) is the largest
centre in Canada for cancer care and research and is a part
of the University Health Network (UHN). The UHN also
includes three other academic hospitals: Toronto General
Hospital (TGH), Toronto Western Hospital (TWH) and
Toronto Rehabilitation Institute (TRI), all of which are affiliated with the University of Toronto. PM is located in the
Toronto Central LHIN, which serves approximately 1.15 million residents. However, because PM is a tertiary cancer
centre, the majority of patients attending the cancer centre
reside in neighbouring Toronto LHINs or elsewhere in the
province.
Fig. 1 Main providers of longitudinal care for ambulatory patients with
advanced cancer. OPCC Oncology Palliative Care Clinic, CCAC Community Care Access Centre
Support Care Cancer (2015) 23:1073–1080
with an oncology clinic. With a yearly increase in referrals, the
clinic quickly grew in size. Currently, there are 22 half-day
clinics, including daily “stat” clinics for urgent referrals, to
accommodate the increased demand for both scheduled and
urgent same-day consultations. There are now six palliative
care physicians, four palliative care nurses, one social worker
and three to five residents and fellows who work in the OPCC.
Physicians and nurses follow their own patients longitudinally, to ensure consistency and continuity of care.
The referral process
Over the past decade, there has been a progressive acceptance
within PM of the philosophy of early palliative care.
Currently, approximately 75 % of the 1,300 new referrals
yearly to the PM palliative care program are first seen in the
OPCC. Referral criteria are broad: Any patient with advanced
and progressive cancer in the UHN cancer program may be
referred, with no limitation on prognosis. Referrals are made
by a physician (generally the patient’s primary oncologist),
using a standardized form. All consult requests are screened
and triaged daily by a palliative care physician prior to booking the appointment. For routine consultations, the median
time from referral to consultation is approximately 2 weeks.
Same-day referrals are accommodated in daily “stat” clinics.
The initial palliative care consultation
At the initial consultation, a palliative care physician and nurse
conduct a thorough assessment and physical exam, taking 60
to 90 minutes. The philosophy of palliative care is outlined at
the initial clinic visit, including the multidisciplinary approach
to pain and symptom management, with an emphasis on
improving quality of life and providing continuity of care.
Reassurance of close collaboration and ongoing communication with the patient’s oncology team is reinforced.
The palliative care nurse administers the Edmonton
Symptom Assessment System (ESAS) scale [20, 21] and
takes a brief history; the physician undertakes a complete chart
review, medical and psychosocial history. The patient’s performance status is recorded, using both the PPS [15, 16] and
the Eastern Cooperative Oncology Group (ECOG) [22] measures. Nursing and medical recommendations for treatment,
education and counselling are then discussed with the patient
and family. These may include changes to medications, referral to community services, and equipment and lifestyle techniques to help with symptom control. In general, the initial
visit tends to focus on introducing the palliative care team and
addressing physical and psychological symptoms, and discussions around advance care planning are deferred to subsequent
visits. Involvement of the palliative care social worker is
1075
sought if there are specific social issues to address, such as
facilitating financial and advance care planning, or providing
counselling for families with young children.
Referrals are made, as needed, to services such as palliative
radiation oncology, psychosocial oncology and interventional
radiology, amongst others (Fig. 2). Most patients referred to
the clinic require some form of home assistance, which may
involve wound care, personal care, supervision of medications, and symptom assessment. This is arranged through a
referral to the patient’s local CCAC service. Patients are
provided with a resource binder that contains contact details
for the palliative care team; information on palliative care,
spiritual care, community resources and advance care planning; and the Canadian Cancer Society booklet, “Living with
Advanced Cancer” [23]. A complete note is dictated for the
patient’s electronic medical record and a copy is sent to the
patient’s oncologist and family physician.
Follow-up in the OPCC
After the initial consultation, patients who are still receiving
chemotherapy or radiation at the PM are followed in the
OPCC, generally at intervals of 1–3 months. Follow-up is
carried out in the OPCC, by telephone, and at times in the
oncologist’s office or chemotherapy day care centre, if this is
more convenient for the patient. The PM palliative care team
communicates regularly with the CCAC home care nurses.
All clinic patients have access to a 24-h on-call service staffed
by palliative care physicians, so that urgent symptom issues
can be readily addressed.
Advance care planning is carried out according to the needs
and readiness of the individual patient and family. This may
include discussion of resuscitation and completion of a “no
CPR” form, assignment of a power of attorney for medical
care, and completion of paperwork for local community palliative care units. Although most patients express a desire to
die at home if possible, this paperwork is done as a “backup”
for the possibility of eventual transfer to an inpatient setting.
Patients work with the social worker to choose up to three
community units, based on factors such as location and proximity to family or friends, the level of care required, and
estimated prognosis [24].
Transition of care at the end of life
Figure 3 shows typical pathways of care, culminating in endof-life care either at home or at a palliative care unit or
hospice. While early palliative care involves integrated,
shared care by the palliative care team with oncologists,
family physicians and community services, patients eventually require transfer of care from the outpatient clinic setting to
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Support Care Cancer (2015) 23:1073–1080
Fig. 2 Typical referrals made
from the OPCC. 1Community
Care Access Centre services
include nursing, personal support,
physical therapy, occupational
therapy and equipment such as
hospital bed, walker and
wheelchair. 2Medical/surgical
specialists may include
neurosurgery, ophthalmology and
dentistry. 3Other supportive care
services at the cancer centre
include spiritual care, wound care,
dietitian, music therapy, and
occupational or physical therapy.
OPCC Oncology Palliative Care
Clinic, CCAC Community Care
Access Centre
Fig. 3 Pathways of palliative
care upon referral to Oncology
Palliative Care Clinic. Note that
referrals to other services by
Oncology Palliative Care Clinic
staff are not included in this
figure. Longitudinal follow-up is
usually weeks to months, but may
be days to years. Transfers of care
to community palliative care
units, hospices or home palliative
care are for transitional and endof-life care; transfers to the
Lederman Center may be for endof-life care or symptom control
Referral to
Palliave Care
Clinic
Early
Palliave
Care
Community
PCU/
Residenal
Hospice
Lederman
Palliave Care
Centre
Home
Palliave Care
Transional
and end of
life care
Support Care Cancer (2015) 23:1073–1080
either the home setting or a hospice or palliative care unit. If a
patient is able to manage at home, but not well enough to
come back and forth to the clinic, an enquiry is made whether
the patient’s family physician is willing to make home visits
and provide 24-h on-call care. If not, patients are referred to a
specialized home palliative care physician providing care in
their community (either shared with the family physician or as
the most responsible physician). Some patients are quite ill at
the initial OPCC consultation and are transferred directly to
the Lederman Palliative Care Centre [18].
Waiting lists for home palliative care physicians can range
from 2 to 6 weeks, or longer. The OPCC palliative care team
continues to follow patients until they have been seen by the
home palliative care physician, at which time there is an
official sign-over of care. However, patients are often referred
back to the PM palliative care service for admission to the
Lederman Palliative Care Centre, either for urgent symptom
control or for terminal care. The OPCC palliative care team
continues to follow patients living in areas without access to a
home palliative care physician, either in person or by telephone in conjunction with community-based nurse practitioners, until their death or the time of admission to an inpatient facility.
Characteristics of patients referred to the OPCC
Table 1 shows the demographic characteristics and performance status of the patients referred to the OPCC in 2012.
Most patients were referred for general symptom management
(57 %) or more specifically, for pain control (32 %). Smaller
numbers were referred for advance care planning (9 %) or for
terminal care (2 %). Forty-nine percent were female, the
median age was 65 years (range 18–96), and the majority
were from the gastrointestinal (26 %), lung (19 %) and
gynaecological (12 %) disease sites. In terms of performance
status, the majority of patients had an ECOG score of 1 or 2
(39 and 42 %, respectively), or a PPS score of 60–70 % (70 %
of patients). Most patients were referred by medical oncology
(61 %) or radiation oncology (24 %). Table 2 shows the ESAS
scores of patients before their first consultation. The median
ESAS Distress Score was 37 (range 0–86) with the worst
symptoms out of 10 being tiredness (median 7), and a median
of 5 each for pain, drowsiness, appetite, well-being and sleep.
Most patients (97 %) had moderate to severe symptom ratings
(i.e. rated greater than 4 on the ESAS scale) [25] and two
patients were asymptomatic (i.e. rated “0” for all symptoms).
Academic activities in the OPCC
The OPCC is not only a clinical service but also a site for the
education of physicians, nurses and other health professionals
1077
who desire training in outpatient palliative care. Residents
undertaking clinical electives may come from diverse disciplines including medical, surgical or radiation oncology, internal medicine, family medicine, anaesthesia and psychiatry.
Fellows enrolled in 2-year research fellowships also follow
patients in the OPCC on a longitudinal basis several days a
week, with supervision. The outpatient setting provides a
venue for education in aspects that are less available in traditional rotations in the palliative care unit or inpatient consultation services, such as monitoring and titrating pain and
symptom medications on an outpatient basis; advance care
planning; and early and ongoing communication with the
patient, family and other health care providers regarding the
changing goals of care. The clinic is also an important venue
for research, including for clinical trials, prospective, retrospective and descriptive studies, and the validation or development of measures [26–33].
Discussion
There is increasing evidence for the effectiveness of introducing palliative care early in the disease trajectory for patients
with advanced cancer. OPCCs are the obvious site for such
care to be initiated and provided in a complementary fashion
with concurrent anticancer treatment. We have described the
model of care for the OPCC at our centre. This model has been
shown to improve quality of life, satisfaction with care, and
symptom control, both in a phase II trial and in a recent
cluster-randomized controlled trial of early palliative care
versus standard oncology care [3, 10].
Reported barriers to early palliative care referral include a
lack of available palliative care services, and the requirement
by some of these services that patients have stopped chemotherapy [34, 35]. Ongoing anticancer treatment should not
preclude referral to palliative care services [5], particularly
because increasing numbers of patients continue to receive
treatment up until the last weeks to months of life [36]. This
trend is likely to continue, given the advent of targeted
treatments that are effective later in the disease trajectory
[37]. A Canadian survey confirmed that a higher referral
frequency was seen when palliative care services accepted
patients receiving ongoing chemotherapy [34]. We encourage
early referral of patients receiving chemotherapy, and our
service has grown to accommodate increased and earlier
referrals.
There is ongoing debate about the wisdom of renaming
the specialty or individual palliative care services “supportive care”. In a recent national survey of Canadian
oncologists, one third stated that they would refer to palliative care earlier if it were renamed “supportive care” [34].
Similarly, a recently published randomized trial reported
that the term “supportive care” was viewed more
1078
Support Care Cancer (2015) 23:1073–1080
favourably than “palliative care” by patients with advanced
cancer [38]. The palliative care service at MD Anderson
Cancer Center has observed earlier outpatient referrals
since changing its name from palliative care to supportive
care in 2007 [39], although oncologists at that centre did
not think that the name change had influenced their referral
practices [40]. Other services have taken the stance that
education, rather than a name change, is the way forward
[41]. We have taken the latter approach, in that we explicitly call our clinic the Oncology Palliative Care Clinic, but
also encourage early referrals and promote the message
Table 1 Characteristics of patients attending the Oncology Palliative
Care Clinic (N=849)
Patient characteristics
Number (%),
Mean [SD]
Table 1 (continued)
Patient characteristics
Number (%),
Mean [SD]
60–70
492 (70)
40–50
148 (21)
10–30
3 (<1)
Data are for the year 2012. Performance status scores are those reported
on the first visit
SD standard deviation
a
Other includes palliative care physician from another University Health
Network (UHN) hospital site (N=9), psychosocial oncology department
(6), other UHN physician (3), family physician (2) or unknown (2)
b
ECOG=Eastern Cooperative Oncology Group. An ECOG score of 0=fully
active at pre-disease performance, 1=ambulatory but restricted in physically
strenuous activity, 2=not fully ambulatory and lying/sitting <50 % of the day,
3=capable of limited self-care and lying/sitting >50 % of the day, 4=
completely disabled, unable to self-care and confined to lying/sitting [20]
c
Sex
Male
437 (51)
Female
412 (49)
Age, in years
64 [13]
Cancer type
Gastrointestinal
217 (26)
Lung
163 (19)
Gynaecologic
105 (12)
Palliative Performance Scale (PPS) score of 80–100=fully ambulatory,
60–70=reduced ambulation, 40–50=mainly lying/sitting and 10–30=
bedbound [30]
Table 2 Self-reported symptoms by patients attending the Oncology
Palliative Care Clinic (N=806)
Mean (SD)
Median
(range)
Number (%)
of patients
rating ≥4
Genitourinary
84 (10)
Head and neck
59 (7)
Symptom
Breast
56 (7)
Pain
5.23 (3.24)
5 (0–10)
541 (67)
45 (5)
Tiredness
6.28 (2.58)
7 (0–10)
685 (85)
44 (5)
Nausea
2.24 (2.83)
1 (0–10)
220 (27)
26 (3)
Depression
3.22 (2.97)
3 (0–10)
342 (42)
22 (3)
Anxiety
3.58 (2.99)
3 (0–10)
388 (48)
18 (2)
Drowsiness
4.28 (2.93)
5 (0–10)
486 (60)
10 (1)
Appetite problems
5.00 (3.12)
5 (0–10)
542 (67)
Hematologic
Central nervous system
Skin
Sarcoma
Unknown primary
Neuroendocrine
Well-being
5.19 (2.65)
5 (0–10)
593 (74)
General symptom management
484 (57)
Shortness of breath
3.25 (3.09)
3 (0–10)
345 (43)
Pain control
276 (32)
Constipation
3.30 (3.34)
3 (0–10)
340 (42)
Palliative care planning
76 (9)
Sleep difficulties
4.50 (3.27)
5 (0–10)
Terminal care
13 (2)
Primary reasons for referral
Referring service
Medical oncology
518 (61)
Radiation oncology
201 (24)
Surgical oncology
64 (7)
Haematology
44 (5)
Othera
22 (3)
Number (%) of patients
with at least one
symptom ≥4
Number (%) of patients
who are asymptomatic
(all “0” scores)
ESAS Distress Scorea
ECOG performance status (N=698)b
456 (57)
-
783 (97)
-
2 (<1)
Median (range)
37 (0–86)
-
Mean (SD)
38.24 (16.63)
-
0
6 (1)
Data are for the year 2012; symptoms are those reported on the first visit
1
273 (39)
SD standard deviation, ESAS Edmonton Symptom Assessment System scale
2
292 (42)
a
3
119 (17)
4
8 (1)
Palliative Performance Scale (N=699)c
80–100
56 (8)
ESAS Distress Score (EDS) is calculated by summing all items except
constipation and sleep difficulties, multiplying by the total number of
items (9), and dividing by the total number of items answered, as long as
>50 % of items are answered. EDS range is 0–90, with higher numbers
representing worse symptom severity. Three patients who answered
<50 % of items were excluded from the EDS calculation
Support Care Cancer (2015) 23:1073–1080
that palliative care is relevant throughout the illness
trajectory.
The palliative care model at our institution is not necessarily reflective of service availability elsewhere. Access to
daily OPCCs as well as an inpatient consultation team, an
acute PCU and a residential hospice facilitates referral to
the palliative care program at all stages of disease and is
responsive to the needs of patients, their families and
referring oncologists. However, our OPCC began as a
single day clinic with one physician and expanded over
time, based on demand and advocacy for additional resources [19, 42]. A model of a weekly half-day clinic
may be more easily reproducible for smaller or newly
established programs [43].
Other centres have adopted different approaches to delivering palliative care in the ambulatory setting. For example,
in a model described at the MD Anderson Cancer Center,
newly referred patients are seen sequentially over 4 to 5 h by
various members of the multidisciplinary team. This process
culminates in a team meeting and subsequent relaying of up
to 13 different recommendations to patients and caregivers
[42][13]. At our centre, while a variety of disciplines is
available for patient support in the OPCC, individual patient
needs are assessed at each visit by a nurse and physician,
and referrals are made to other palliative care specialists as
required. Irrespective of the precise model of care, it is
important that palliative care services are amenable to early
referral, do not have prohibitive policies such as lack of
acceptance of patients on chemotherapy, and are fully integrated within their parent institution as well as within the
local community.
Early palliative care referral, and the opportunities this
affords for earlier, phased discussions about end-of-life care
preferences, may help to improve symptom control, increase
satisfaction with care, clarify goals of care, reduce aggressiveness of care at the end of life and help more patients to die in a
place of their preference. The model we have described is
appropriate for cancer centres or hospitals with large outpatient cancer programs, and illustrates that a model of early
outpatient palliative care is feasible and effective. This model
can be modified for smaller centres, or to include patients with
non-malignant diagnoses.
Acknowledgments We extend our thanks to all the interdisciplinary
palliative care team members who made the functioning of this clinic
possible. Special thanks to Catherine Purcell, Christine Cameron, Malka
Berman and Pat Cotman for their commitment to clinical and academic
excellence in developing our outpatient palliative care service. This
research was funded by the Canadian Cancer Society (grant #700862;
CZ), and the Ontario Ministry of Health and Long Term Care. Dr.
Zimmermann is supported by the Rose Family Chair in Supportive Care,
Faculty of Medicine, University of Toronto.
Conflict of interest There are no financial disclosures from any of
the authors.
1079
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