Early Palliative Care: Taking Ownership and Creating the Conditions

Abstract

The evidence for early integration of palliative care into standard oncology care is growing.[...]

Full text

EARLY PALLIATIVE CARE, Pereira and Chasen
367Current Oncology, Vol. 23, No. 6, December 2016
© 2016 Multimed Inc.
EDITORIAL
Early palliative care: taking ownership
and creating the conditions
J. Pereira mbchb msc* and M.R. Chasen mbchb mphil(pall med)†
The evidence for early integration of palliative care into
standard oncology care is growing. All things considered,
the benefit s to patients, f amil ies, and the he alth ca re system
of initiating palliative care ea rlier in the illness trajectory
and not relegating it to the terminal phase in the last days
or weeks of life fa r outweigh any potential burdens. Kain
and Eisenhauer, in this edit ion of Current Oncology, add
a noteworthy voice to the call for action. Notably, that
call is neither new nor confined to cancer care; the need
to provide palliative care and to initiate it earlier in the
illness trajectory is echoing ever louder, to include many
non-can cer conditions r angin g from advanc ed heart , lung,
liver, rena l, and neurologic diseases to conditions such as
dementia and frailty1–4.
In 2002, t he World Health Organization modified its
definition of “palliative care” by replacing the term “ter-
minal illnesses” with “life-threatening illnesses.” This
intentional alteration emphasizes the need to implement
palliative care earlier in the illness trajectory. That same
year, the Canadian Hospice Palliative Ca re Association
embraced the approach, embedding it in its model in
which p alliat ive care st arts ea rlier, alongside t reatments to
control the disease a nd manage its complications. When
the disease progresses a nd disease-modif ying treatments
become les s effecti ve, the pal liative c are approach sta rts to
take more prominence. The t wo approaches are therefore
complementa ry in a dy namic pr ocess rath er than mutu ally
exclus ive, as in the “old” model i n which pa lliativ e care was
considered only in the terminal, end-of-life phase.
Identif ying and addressing physical, psychological,
social, and spiritual needs should not be confined to the
term inal pha se of diseas e and neither shou ld advance c are
plan ning. Patients whose d iseases a re potentially cont rol-
lable or even curable also benefit from a supportive and
palliative care approach that aims to assist quality of life.
Likewise, recog nizing disease progression a nd engaging
in honest goals-of-care discussions accompanied by wise
treatment choices in a way that promotes realistic hope
and prepa res for fut ure possibil ities should not b e relegated
only to end of life.
Hawley 5 ha s adapted the Ca nadian Ho spice Pall iative
Care Association model in what is called the “bow-tie”
model (Figure 1). It, too, emphasizes the complementary
nature of disease-modifying treatments and palliative
car e. Unfortu nately, however, the model rele gates pal liative
care unit s to end-of-life car e. In many par ts of Canada a nd
internationa lly, admissions to pa lliative care u nits are not
lim ited to end-of-life pat ients, but are ope n to patients w ith
complex sy mptomatic and psychosocial needs across the
illness trajectory; on the other hand, residential hospices
genera lly provide end-of-l ife care. Of p articu lar note in t he
“bow-tie” model i s that it accom modates rehabi litation a nd
survivorship. Palliative care rehabilitation programs for
patient s with pa lliati ve care need s who are not at end of li fe
have highlighted the “early” palliative care model and its
accompanying benefits, particularly through maintenance
of functiona l status, mobility, and quality of life 6.
Whose responsibility is it, then, to prov ide palliative
care? Kain and Eisenhauer appropriately highlight the
need, across Canada, for more specialist palliative care
resources to address current gaps and f uture needs.
Onta rio, for example, has 218 medical oncologists and
225 radiation oncologists 7. It has only 276 “palliative
ca re” physici ans—too fe w to provide al l the pal liative c are
Correspondence to: Martin R. Chasen, William Osler Health System, Brampton Civic Hospital, 2100 Bovaird Drive East, Brampton, Ontario L6R 3J7.
E-mail: editor.currentoncology@multi-med.com n DOI: http://dx.doi.or g/10.3747/co.23.3461
FIGURE 1 The “bow-tie” model emphasizes the complementary
nature of disease-modifying treatments and palliative care.

EARLY PALLIATIVE CARE, Pereira and Chasen
368 Current Oncology, Vol. 23, No. 6, December 2016
© 2016 Multimed Inc.
required for ca ncer and non-cancer patients 8. Some hos-
pital s in Ontar io have inadequat e special ist pall iative ca re
physici an or nurse cove rage (and in some c ases none at al l).
Shorta ges of pall iative ca re physician s or inadequate f und-
ing acc ount for that lac k. The Cha mplain reg ion (1.3 mill ion
populat ion and 30,000 k m2) in sout heastern O ntario, wh ich
includes Ottawa, has a 1.0 full-time equiva lent palliative
care physician positions in its community palliative care
consultation team. In contrast, the Edmonton region in
Alberta, similar in population size and area, has a much
more appropriate complement of 5 full-time physician
equivalents and 5 full-time nurse equivalent positions.
Other Ontario community teams have no physicians, be-
cause t hose teams are f unded as nurs e-only models by t he
Ontario Mi nistr y of Health a nd Long-Term Care (moh ltc).
Advocacy efforts to the mohlt c, Cancer Care Ontario,
and the Ontario Medical Association to address the gaps
have, w ith some except ions, generated few c oncrete result s
in recent years. In 2013 for example, Cancer Care Ontario
opted to excl ude palli ative car e physician s from the prov in-
cia l alternat ive fund ing plan for ca ncer care spe cialis ts ne-
gotiate d as part of it s Models of Care i nitiati ve. The mohltc
provide s hospital on-ca ll fund ing for some hospita l-based
pal liative ca re teams, but not for ot hers. The praisewor thy
decisi on by the College of Fa mily Phys icians of Ca nada and
the Roya l College of Physician s and Surgeons of Canada to
recognize palliative medicine as a subspecialty will likely
incre ase interest i n the field, but the i nsuffic ient number of
pal liative c are residenc y and physicia n positions i n Ontario
could create bottlenecks. Bold action by policymakers,
health services administrators, and educators is needed
to overcome those funding and resource barriers.
However, even with much-needed increases in the
palliative care specialist workforce (and the administra-
tive support that is often lacking in many centres), this
relatively sma ll workforce wi ll not be able to prov ide for all
the palliative care needs (including early integration) for
al l patients wit h life-li miting c ancer and non-ca ncer diag-
noses. T he responsibil ity for provid ing pal liative c are is not
solely t hat of palli ative care specia lists or spe cialis t teams,
it is ever yone’s business. A ll health care professiona ls who
provide any form of care to patients w ith life-threatening
cancer and non-cancer illnesses—including oncologists,
family physicians, internists, and cardiologists, to name
only a few—should take ownership of the challenge by
providing a palliative care approach to their patients.
“Palliative care approach” refers to primar y-level (that is,
genera list-level), hig h-qualit y pall iative ca re that could b e
provide d by health c are professiona ls who are n ot palliat ive
care specialists.
For severa l years now, the A merican S ociety of Cl inical
Oncolog y has endorsed t hat approach, a nd more recently, it
fur ther elucidated the competencies t hat the generali st-level
palliative care for oncologists a nd cancer care providers
should include 9. A case ha s also been made for a pal liative
care approach to be provided by f amily physicia ns 10. Most
oncologists and oncology nurses acknowledge a role in
providing the palliative ca re approach to their patients 11.
Cancer Care Ontario has developed a care pathway that
integrates the palliative care approach and psychosocial
care in ever yday cancer care 12. Gardiner et al. 13 outlined
the important role for generalist providers (including
oncologists and clinicians in many dif ferent specialty
areas and in family medicine) in the earlier incorporat ion
of palliative care and transitions to palliative care.
Apart from increasing access to palliative care, other
benefits ac crue when at tending non-pa lliat ive-ca re clin icians
provide a palliative care approach to t heir ow n patients.
They often have close rapport with their patients and are
trusted by the patients and fami lies. Continuity of care is
valued by pal liativ e care patient s 14. Leav ing it up to a thi rd
par ty, partic ularly t he pall iative care team, t o disclose bad
news a nd to discus s goals of ca re in the presenc e of disease
progression or to initiate advance care planning might
leave the patient feeling abandoned a nd the palliative
care clinician feeling vilified as the harbinger of doom.
Many palliative care clinicians can share experiences of
being fired by patients and fa milies whose diseases have
progressed, but wh o were not ful ly informe d of the situat ion
by their attending clinicians.
Severa l conditions have to be met for non-palliative-
care providers such as oncologists, oncology nurses, and
family physicians to effectively prov ide a palliative care
approach to their pat ients. Those conditions include
education, support, tools, and incentives and supporting
policies. Many health professiona ls have not received
adequate basic palliative care training and feel uncom-
fortable and ill equipped to provide such care 15. A survey
of hospita l-based sta ff reporte d that 19.3% of sta ff time w as
spent caring for end-of-life patients, but that only 19% of
respondent s had received f ormal pa lliati ve care tr aini ng 16.
Almost three quarters wanted forma l training in the area
and perceived that confidence in pa lliative care deliver y
was sig nifica ntly great er for the staf f with for mal pal liative
care training. The palliative care approach should be an
integral component of undergraduate, postgraduate, and
continuing professional development curricula. Some
standardized progra ms are available in Canada for these
purposes, including Pallium Canada’s leap (Lear ning
Essential Approaches to Pa lliative Care) courses (inter-
professional), the Educating Physicians on End-of-Life
Care course a nd other intensive interprofessiona l courses
offered by McMaster Un iversity ( Victoria Hospice), as wel l
as Life and Death Matters (for support workers).
Hospital and communit y settings should have ade-
quately staffed specialist palliative care teams to provide
support w ith complex patients, to verify care plans when
needed, and to take over the care of the small proportion
of cases that are extremely challenging. A recent system-
atic review of the impact of hospital-based palliative care
consultation teams in which the partnership model was
typically used showed improvements in patient care and
cost savings 17. Se veral com munity be nefits have been note d
as wel l. For example, Ka in and Eis enhauer quote a stud y by
Seow et al. 18 of the impact of community-based specialist
palliative care teams in Ontario. In that work, 2 of the 11
team s studied us ed a consult ation or shared- care model in
which family physicians and community nurses prov ided
the palliative care w ith the support of specialist palliative
care teams. Those 2 teams achieved benefits similar to
those a chieved by t he other team s, whose members la rgely
used a specia list takeover model ; significant reduc tions in

EARLY PALLIATIVE CARE, Pereira and Chasen
369Current Oncology, Vol. 23, No. 6, December 2016
© 2016 Multimed Inc.
emergency department visits, hospitalizations, and hos-
pital deaths were observed. Other studies have reported
similar results using the “partnership” model between
non-palliative-ca re clinicians and palliative care special-
ists 19,2 0. Fundi ng models that u ndermine t his consu ltation
support role should be replaced with models and funding
incentives that support it. In Ontario, for example, the ab-
sence of an adequate a lternative sala ry-type f unding pla n
for palliative care physicians by the moh ltc is pushing
more palliat ive care physicians to a fee-for-serv ice model,
which could ultimately undermine capacity-building for
a primary-level palliative care approach as palliative care
physicians intentionally or unintentiona lly take over all
the pa lliat ive care, inc luding pri mary-level pa lliat ive care.
A larg e dose of self-awar eness and ack nowledgment of
competency limitations is also required. Oncologists and
other non-palliative-care specialist providers should ac-
know ledge their sk ill gap s in this a rea and seek pr ograms t o
addre ss those gaps. T he organi zations t hey work for should
provide opportunities to acquire the necessar y skills, and
other incentives should be put in place. Timely referrals to
specialist palliative ca re teams should be provided when
patients require specialist-level palliative care interven-
tions. Guidelines to assist in identifying such situations
have been published 21.
It requires commitment to participate in education
programs to update one’s palliative care approach skills.
By the same token, palliative care physicians require a
substa ntial dose of hu milit y and respect for the work done
by non-palliative-care specialists and shou ld see referra ls
as opportunities for support and collaboration. We are all
in this together, and the article by Kain and Eisenhauer
brings to the fore the need for effective collaboration and
integration to improve patient outcomes.
Kain and Eisenhauer identify the “surprise question”
as a useful tool. Its utilit y as an approach for the earlier
identification of patients who could benefit from a pal-
liative care approach has been demonstrated in various
settings for cancer and non-cancer diagnoses. However,
it is impor tant to note that t he “sur prise question” neither
limits palliative care to the last year of life nor acts as a
prognostication tool. It is simply a useful alert that helps
in mov ing pall iative ca re upstrea m. Other tools to identif y
patient s with pa lliati ve care need s have been repor ted and
tested i n variou s setting s. Weis sman et al. 20 high lighted the
usefulness of tools to screen patients for unmet pa lliative
care needs, combined with education initiatives and other
system-change work. They go on to posit t hat hospital
staff engaged in day-to-day patient care can identify and
address most such needs, reserving specialty pa lliative
care services for more complex problems 20.
That focus on palliation in day-to-day care in turn
raises a question: What percentage of patients should be
referr ed to a specia list pal liativ e care ser vice? C learly, 100%
would not be realistic, but too-small numbers would also
raise concerns, particula rly in the absence of the condi-
tions already described 22. In a populat ion-based sur vey in
Belgium 23, palliative care services were not used for 79%
of patients with organ failure, 64% with dementia, and
44% with cancer. Among the most common reasons for
not referr ing to a pal liative c are serv ice was the p erception
by some clinicians that they had already provided suffi-
cient palliative care (raising the question of whether the
clinicians had been prepared to provide a palliative ca re
approach) and that insufficient time to initiate palliative
care was ava ilable (indicating that palliation was being
considered too late). For patients who were referred, the
timing of referral varied from a median of 6 days before
death (organ failure) to 16 days (cancer). Further studies
are needed to determine what an acceptable range would
be if all the conditions were to be in place.
Kain and Eisenhauer highlight the challenges related
to the fear associated with the term “palliat ive care.”
Cherny 24 summarized three different approaches to the
concerns about the name. They can be summarized as
“getting over it,” “living w ith it,” and “getting a round it.” In
the “getting over it” approach, the term “palliative” con-
tinues to be used, but patients, colleagues, and the public
are educated about what it actually means. In the “living
with it approach,” a term such as “supportive care” is used
to refer to palliative care earlier in the illness t rajectory
and “palliative” is reserved for end of life, when the word
might be less threatening for some. In the “getting a round
it” approach, the term is replaced with another term such
as “supportive care,” “pain and symptom management,”
or “qualit y of li fe.” We are concerned about the lat ter term,
becau se it might sim ply introduce a e uphemism th at allows
people to avoid talking about the issues and realities at
hand. In any case, the measure is a temporary one, be-
cause, w ithin a generation or less, the new word will come
to acquire the same stigma as “palliative care” bears now
so long as there is no education and open dialogue about
what palliative care actually is. We are of the opinion that
the second approach, calling a service “supportive and
palliative care,” is the optimal pragmatic approach.
The language used is important. For example, confu-
sion does arise because “palliative care” refers bot h to an
approach to c are and to a spe ciali zed car e team. A ll patients
with life-threateni ng illness should receive pa lliative care
as an approach to ca re, but, as posited earlier in this a rticle,
that approach does not always have to be provided by
specialized physicians or teams. The specific words used
are also indications of the culture that exists. The phrases
“the patient is not palliative yet” or “the patient is now
palliative” are often used in everyday care, and yet they
are inappropriate in a new paradigm in which a palliative
care a pproach has to sta rt ear lier, because t hey suggest t hat
palliative care is confined to t he end of life. Phrases such
as “this patient would a lso benefit from a pa lliative care
approach” or “th is patient now nee ds end-of-life pal liative
care” would be more appropriate.
To summarize, a paradigm shif t is needed. The call is
not new, but the emerg ing evidenc e for initiat ing pal liative
care earlier and more broadly is ever more compelling.
The required culture change requires ownership by and
colla boration bet ween many st akeholders, i ncluding he alth
care professionals who a re not palliative care specialists,
palliative care specialists, administrators, policyma kers,
fu nders, and educator s. Kain a nd Eisenhauer m ake severa l
import ant recommendations, inc luding implementation of
qual ity improvement i nitiat ives across ma ny care set tings
to achieve the paradigm shift. Cancer Care Ontario’s

EARLY PALLIATIVE CARE, Pereira and Chasen
370 Current Oncology, Vol. 23, No. 6, December 2016
© 2016 Multimed Inc.
in te grat e project is one such quality improvement ini-
tiat ive, as is t he Speak Up camp aign (http://www.advance
careplanning.ca) 25. Fut ure stud ies to gather more e vidence
about the i mpact of the ea rly pal liative c are model prov ided
by non-palliative-care clinicians will be needed.
CONFLICT OF INTEREST DISCLOSURES
We have read a nd understood Current Oncology’s policy on
disclosing con flicts of interest, and we declare the following
interests: JP is Scientific Officer at Palliu m Canada, a nonprofit
organization t hat has been funded largely by Health Canada to
provi de pall iative ca re educat ion. MRC has no c onflict s to declare .
AUTHOR AFFILIATIONS
*Pal lium Ca nada and Wi llia m Osler Healt h System, a nd †William
Osler Heath System, Brampton, ON.
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