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 (NeilMacDonald and Eduardo Bruera), is that of the World Health Organization (WHO).1,2 It is a mother-hood clause rich in beneficence, clear in its message, that states: ‘‘Palliative care is an approach that improvesthe 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 patient’s illness and in their own bereavement• uses a team approach to address the needs of patients and their families, including bereavement counsel-

ing, 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 pro-

long life, such as chemotherapy or radiation therapy, and includes those investigations needed to betterunderstand 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 pro-

ject 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

Received: October 13, 2008; Accepted: October 17, 2008

Published online: February 20, 2009 VC 2009 American Cancer Society

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

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 2013–21, this issue.

1808 Cancer May 1, 2009

Editorial

delivering care. Palliative care expands traditional dis-

ease-model medical treatments to include the goals of

enhancing quality of life for patient and family, optimiz-

ing function, helping with decision-making and provid-

ing 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 knowl-

edge about basic palliative therapies relevant to their clini-

cal practice and, in addition they should know the

indication for inviting the services of interdisciplinary spe-

cialist-level palliative care to help in the management of

more challenging circumstances.

Since the 1990s, there has been a flourishing of palli-

ative care endeavors in the United States. This has been

reflected in the incorporation of palliative care into inter-

nal 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 PalliativeMedi-

cine as a medical specialty in 2006.

This is not to say that all is rosy. The Medicare Hos-

pice 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) mem-

bers, 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 fasci-

nating finding of the study was that trial and error in clini-

cal 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, de-

spite 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

care are not rigorously evaluated in licensing examina-

tions. 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 pro-

grams for palliative care specialty training.

Even in oncology centers where palliative care serv-

ices 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 af-

ter 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 re-

luctance 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 Univer-

sity of Texas Medical Center, which has a renowned palli-

ative 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 cura-

tive 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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Cancer May 1, 2009 1809

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 sup-

portive 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 dis-

ease-modifying treatment.

Although this research is not without its faults (for

instance it fails to consider the scenario of patients with in-

curable 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 pro-

foundly beneficent and benign. Who wouldn’t 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 under-

stood 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 clini-

cians 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).

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 facili-

tated the substantial up-streaming of palliative care and

palliative care services to earlier stages of disease. Opera-

tionally, 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 coun-

tries 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 associa-

tions. 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 incorpo-

rates all aspects of toxicity minimization, palliative care,

and survivorship. It is widely used in the oncology litera-

ture as a euphemism for palliative care. Indeed, at oncol-

ogy 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 pallia-

tive 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 sim-

plest approach is possibly to say that the name does

not matter (or rather, that what matters is the con-

tent 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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1810 Cancer May 1, 2009

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 Depart-

ment, 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 situa-

tions of early stage and curable disease, reserving the

term ‘‘palliative’’ to clinical situations where it is rel-

atively nonthreatening. This is illustrated by the Eu-

ropean 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 en-

courage 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 misconcep-

tions 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. Pallia-

tive cancer care aims to give patients and their fami-

lies 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

good news that optimizing quality of life is a prior-

ity 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

1. World Health Organization. National cancer control pro-grammes: policies and managerial guidelines. 2nd ed. Ge-neva: World Health Organization; 2002:203.

2. World Health Organization. Palliative care. Geneva: WorldHealth Organization; 2007:62.

3. National Consensus Project for Quality Palliative Care.Clinical practice guidelines for quality palliative care. Pitts-burgh, PA: National Consensus Project for Quality Pallia-tive Care; 2004:76.

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

5. Cherny NI, Catane R. Attitudes of medical oncologists to-ward palliative care for patients with advanced and incura-ble cancer: report on a survey by the European Society ofMedical Oncology Taskforce on Palliative and SupportiveCare. Cancer. 2003;98:2502-2510.

6. Davis MP. Integrating palliative medicine into an oncologypractice. Am J Hosp Palliat Care. 2005;22:447-456.

7. Jackson VA, Mack J, Matsuyama R, et al. A qualitativestudy of oncologists’ approaches to end-of-life care. J PalliatMed. 2008;11:893-906.

8. National Cancer Policy Board Institute of Medicine. Back-ground and recommendations. In: Foley K, Gelband H,eds. Improving palliative care for cancer: summary and rec-ommendations. Washington, DC: National AcademiesPress; 2001:46-47.

9. American Hospital Association. The American HospitalAssociation, Annual Survey DatabaseTM for Fiscal Year2006. Chicago: American Hospital Association; 2008.

10. Pantilat SZ, Billings JA. Prevalence and structure of pallia-tive care services in California hospitals. Arch Intern Med.2003;163:1084-1088.

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Cancer May 1, 2009 1811

11. Osta BE, Palmer JL, Paraskevopoulos T, et al. Intervalbetween first palliative care consult and death in patientsdiagnosed with advanced cancer at a comprehensive cancercenter. J Palliat Med. 2008;11:51-57.

12. Dhillon N, Kopetz S, Pei BL, Fabbro ED, Zhang T,Bruera E. Clinical findings of a palliative care consultationteam at a comprehensive cancer center. J Palliat Med.2008;11:191-197.

13. Cheng WW, Willey J, Palmer JL, Zhang T, Bruera E.Interval between palliative care referral and death amongpatients treated at a comprehensive cancer center. J PalliatMed. 2005;8:1025-1032.

14. McGrath P. End-of-life care for hematological malignan-cies: the ‘technological imperative’ and palliative care. JPalliat Care. 2002;18:39-47.

15. McGrath P. Qualitative findings on the experience of end-of-life care for hematological malignancies. Am J Hosp Pall-iat Care. 2002;19:103-111.

16. Auret K, Bulsara C, Joske D. Australasian haematologistreferral patterns to palliative care: lack of consensus onwhen and why. Intern Med J. 2003;33:566-571.

17. Bradley EH, Cramer LD, Bogardus ST Jr, Kasl SV, John-son-Hurzeler R, Horwitz SM. Physicians’ ratings of theirknowledge, attitudes, and end-of-life-care practices. AcadMed. 2002;77:305-311.

18. Fadul N, Elsayem A, Palmer JL, et al. Supportive versuspalliative care: what’s in a name? A survey of medicaloncologists and mid-level providers at a comprehensive can-cer center. Cancer. 2009;115:2013-2021.

19. Mount BM. The problem of caring for the dying in a gen-eral hospital; the palliative care unit as a possible solution.Can Med Assoc J. 1976;115:119-121.

20. World Health Organization. Cancer pain relief andpalliative care. Geneva: World Health Organization;1990.

21. Cherny NI. European Society of Medical Oncology(ESMO) joins the palliative care community. Palliat Med.2003;17:475-476.

22. Ferris FD, Bruera E, Cherny N, et al. Palliative cancer carea decade later: accomplishments, the need, next steps—from the American Society of Clinical Oncology. J ClinOncol. In press.

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1812 Cancer May 1, 2009