Editorial

Stigma Associated With

Palliative Care
Getting Around It or Getting Over It
Nathan I. Cherny, MBBS, FRACP, FRCP

The most widely accepted formal definition of palliative care, which was drafted by 2 oncologists (Neil
MacDonald and Eduardo Bruera), is that of the World Health Organization (WHO).1,2 It is a motherhood clause rich in beneficence, clear in its message, that states: Palliative care is an approach that improves
the quality of life of patients and their families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early identification and impeccable assessment and
treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

provides relief from pain and other distressing symptoms

affirms life and regards dying as a normal process
intends neither to hasten nor postpone death
integrates the psychological and spiritual aspects of patient care
offers a support system to help patients live as actively as possible until death
offers a support system to help the family cope during the patients illness and in their own bereavement
uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
will enhance quality of life, and may also positively influence the course of illness
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better
understand and manage distressing clinical complications.
In the United States, this approach was endorsed by the American Academy of Hospice and Palliative
Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nursing Association, the
National Hospice and Palliative Care Organization, and Partnership for Caring in a national consensus project to develop a clinical practice guideline for quality palliative care.3 Consistent with the WHO definition,
they assert, Palliative care is both a philosophy of care and an organized, highly structured system for
Corresponding author: Nathan I. Cherny, MBBS, FRACP, FRCP, Norman Levan Chair for Humanistic Medicine, Director Cancer Pain and Palliative
Medicine Service, Dept Oncology, Shaare Zedek Medical Center, Jerusalem, Israel; Fax: (011) 972-2-6666731; nathancherny@yahoo.com
Department of Oncology, Shaare Zedek Medical Center, Jerusalem, Israel
See referenced original article on pages 201321, this issue.
Received: October 13, 2008; Accepted: October 17, 2008
C 2009 American Cancer Society
Published online: February 20, 2009 V

DOI: 10.1002/cncr.24212, www.interscience.wiley.com

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delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of
enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be
delivered concurrently with life-prolonging care or as
the main focus of care.3
Operationally, the clinical practice guidelines of the
consensus document3 endorsed a tiered system such that
all physicians should have a modicum of skills and knowledge about basic palliative therapies relevant to their clinical practice and, in addition they should know the
indication for inviting the services of interdisciplinary specialist-level palliative care to help in the management of
more challenging circumstances.
Since the 1990s, there has been a flourishing of palliative care endeavors in the United States. This has been
reflected in the incorporation of palliative care into internal medicine training, the rapid increase in the number of
hospice programs, the increasing availability of palliative
consultation services in hospitals and cancer centers, the
development of standards of practice,3,4 and, most
recently, the accreditation of Hospice and Palliative Medicine as a medical specialty in 2006.
This is not to say that all is rosy. The Medicare Hospice Benefit ($135/day to pay for all medications, durable
medical equipment, and clinical services) still generally
precludes patients who are receiving disease-modifying
treatments such as palliative chemotherapy from accessing
hospice services; many of the palliative care services in
hospitals are very limited in scope and are financially
vulnerable.
Regrettably, many in the oncology profession have
been relatively slow on the uptake.5-7 In a 1998 survey of
American Society of Clinical Oncology (ASCO) members, most oncologists reported that they did not have
adequate formal training in the key skills needed for them
to provide excellent palliative and end-of-life care. A fascinating finding of the study was that trial and error in clinical practice or traumatic patient experiences ranked
higher as a source of learning than did fellowship training
or clinical clerkships.8 A decade has passed and still, despite the endemic proportion of palliative care problems
that confront oncologists, most trainees still receive scant
training in palliative care and their skills in this aspect of

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care are not rigorously evaluated in licensing examinations. Most recent survey data indicate that 698 of the
1203 American Cancer Society approved cancer programs
report having some sort of palliative care program,9 but
the limited data on the staffing of these services indicates
that many are rudimentary.10 Indeed, very few have
reached the threshold of being recognized training programs for palliative care specialty training.
Even in oncology centers where palliative care services exist, they are often underused.5,11 Only a limited
proportion of patients with poorly controlled symptoms
are referred for expert palliative care, and many patients
are referred only very late in the history of their illness after having suffered from inadequately controlled physical
or psychological symptoms for some time.11-13 There is
compelling data to suggest that this problem is even more
severe when the underlying malignancy is hematological
in nature.14-16 Among palliative care providers, there is a
strong perception that oncologists are often reluctant to
use specialist palliative care services.
If palliative care is a paradigm of beneficent quality
care that focuses on well being and relief of suffering, why
should there be such a reluctance to engage palliative care
services?
For many clinicians, the common connotation that
palliative care is primarily concerned with the care of the
patient and his/her family at the end of life, underlies a reluctance of oncologists to refer patients (even those with
overt needs) earlier, and in particular, when they are
undergoing treatments with curative intent.17 It is as if the
need to refer to palliative care infers bad news that is not
appropriate for the patients prevailing condition.
The study by Fadul et al18 published in this issue of
Cancer addresses this subject. At M. D. Anderson University of Texas Medical Center, which has a renowned palliative medicine service, oncology clinicians were presented
with a set of hypothetical scenarios that asked if they
would refer a patient to a service called supportive care
or to a service called palliative care. There were 2 key
findings from the study:
1. In the hypothetical situations involving the care
needs of patients undergoing treatments with curative intent, medical and nursing clinicians were
much less likely to refer to a palliative care service
than to a supportive care service.

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2. This disinclination regarding referral to palliative

care service did not exist in the hypothetical scenario
of the patient with an incurable illness who was no
longer eligible for disease-modifying treatments, in
which case clinicians were equally likely to refer to a
service named palliative care or supportive care.
The implications of the study were the following: 1)
oncologists perceive a difference in the concepts of supportive care and palliative care; 2) appropriate referral of
early stage cancer patients could be increased by naming
the service supportive care; and 3) there was no perceived
preference for the name of the service offered to patients
with incurable cancer who were beyond benefit from disease-modifying treatment.
Although this research is not without its faults (for
instance it fails to consider the scenario of patients with incurable cancer receiving chemotherapy), its findings and
their implications are worthy of consideration.
Despite the ascribing authority, how nouns derive
their meaning is more complex than simple ascribed
meaning. The ascribed meaning of palliative care is profoundly beneficent and benign. Who wouldnt want an
approach to care that is focused on reducing suffering
and improving quality of function and quality of life?
Semantics, the study of how words achieve meaning,
recognizes that common meaning of a word is deeply
influenced by associations derived from life experience
or connotation. This explains the potential discrepancy
between formal definitions and their commonly understood definitions. When discrepancies in meaning exist,
and these meanings conflict, there is a semantic
dissonance.
In reference to the care of persons with potentially
curable illness, this study suggests that for many clinicians there is a semantic and emotional dissonance to
the term palliative care that does not exist for the
term supportive care. The dissonance arises because
the meaning most widely accepted and promoted by the
WHO and the National Consensus Project (care to
improve the quality of life of patients and their families
at all stages of the illness experience) is not consistent
with the meaning derived from common association
(ie, care to improve the quality of life for patients with
incurable illness and their families in the last days of
life).
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This is not a new issue in the development of the

field of palliative care. A generation ago, when hospice
was very much associated with end of life care, palliative
care, a term developed by Balfour Mount in Canada,
increasingly became the preferred term for this field of
endeavor.19 This happened in part because the associative
meaning of hospice as being very much focused on end of
life care was too limiting for the scope of palliative care,
which was being increasingly advocated at earlier stages of
disease. This did not obviate the concept of hospice,
which continues to focus on end of life care, but it facilitated the substantial up-streaming of palliative care and
palliative care services to earlier stages of disease. Operationally, palliative care was adopted and defined by the
WHO,1,20 and it became the dominant term in public
health discourse and documentation. More than 40 countries have policies for palliative care in their cancer care
programs.
What of the term Supportive care? This is a term
without a widely held definition and with many associations. Its purview has variably been defined from a very
narrow agenda as A treatment approach to reduce side
effects from chemotherapy and other primary treatments
in cancer to an all encompassing purview that incorporates all aspects of toxicity minimization, palliative care,
and survivorship. It is widely used in the oncology literature as a euphemism for palliative care. Indeed, at oncology conferences and in oncology texts, content related to
palliative care needs are often labeled supportive care.
In addition, supportive care (or best supportive care)
has become the common term for the control arm of
randomized clinical studies in which there is no effective
chemotherapy and the routine standard of care is palliative care.
Although I fully and wholeheartedly support the
WHO concept and definition of palliative care, I do not
think we should ignore the possibility that patients are
being deprived of care because of stigma. Indeed there are
several appropriate responses.
1. The getting-around-it approach: Perhaps the simplest approach is possibly to say that the name does
not matter (or rather, that what matters is the content provided). That is to say, if a euphemistic
name such as supportive care or quality-of-life
care will lessen the barriers to referral, they should
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be considered favorably. This has been the approach

of many supportive care services around the world.
In part, this has been the approach of the M. D.
Anderson Palliative Care and Rehabilitation Department, which has recently changed the name of their
clinic to Supportive Care.
2. The living-with-it approach: This is a pragmatic
approach to use the term supportive care in situations of early stage and curable disease, reserving the
term palliative to clinical situations where it is relatively nonthreatening. This is illustrated by the European Society for Medical Oncology (ESMO)
approach, which was to adopt pragmatic definitions
of supportive and palliative care based on 1) the
common understanding of the terms among the
membership and 2) a strategy to recognize and encourage a critical shift in emphasis to a palliative
care paradigm when patients no longer have curable
disease. Indeed, ESMO has strongly supported a
comprehensive program of policies, education,
research, and incentives to encourage the integration
of supportive and palliative care into cancer centers
and programs.21
3. The getting-over-it approach is to continue to
actively work to reduce and debunk the misconceptions and stigma associated with the term palliative
care. This has been the approach of the ASCO
board, which has recently endorsed a new policy
statement on palliative cancer care. They have, in a
very deliberate process, lent strong endorsement to
the WHO definition and terminology. They define
palliative cancer care as The integration into cancer
care of therapies to address the multiple issues that
cause suffering for patients and their families and
have an impact on the quality of their lives. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when
their cancer is curable as well as when the end of
life is near.22 Rather than shirking from the term
palliative care, they have thrown their weight and
credibility behind it in a further effort to educate
clinicians and consumers about palliative care and to
reduce stigma associated with the term. They want
oncologists to confront stigma by communicating
that the need for palliative care does not, in itself,
conclude bad news; on the contrary, it infers the
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good news that optimizing quality of life is a priority of care for all patients. Kathleen Foley calls this
getting real about palliative care.
Despite the labels that are adopted, it is incumbent
upon all oncologists and cancer clinicians to work toward
a common goal that all patients will have access to an
approach to care that improves the quality of life of
patients and their families through the prevention and
relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other
physical, psychosocial, and spiritual problems.
Call it what you may, this is palliative care and it is a
clinical, ethical, and humanistic imperative for all
oncologists!

References
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World Health Organization. National cancer control programmes: policies and managerial guidelines. 2nd ed. Geneva: World Health Organization; 2002:203.

2.

World Health Organization. Palliative care. Geneva: World

Health Organization; 2007:62.

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National Consensus Project for Quality Palliative Care.

Clinical practice guidelines for quality palliative care. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2004:76.

4.

National Quality Forum. National framework and preferred

practices for palliative and hospice care. Washington, DC:
National Quality Forum; 2007:124.

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Cherny NI, Catane R. Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: report on a survey by the European Society of
Medical Oncology Taskforce on Palliative and Supportive
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Davis MP. Integrating palliative medicine into an oncology

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11. Osta BE, Palmer JL, Paraskevopoulos T, et al. Interval
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13. Cheng WW, Willey J, Palmer JL, Zhang T, Bruera E.

Interval between palliative care referral and death among
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