582 Journal of Pain and Symptom Management Vol. 43 No. 3 March 2012

Original Article

The Lack of Standard Definitions in theSupportive and Palliative Oncology LiteratureDavid Hui, MD, MSc, MSc, FRCPC, Masanori Mori, MD, Henrique A. Parsons, MD,Sun Hyun Kim, MD, PhD, Zhijun Li, MS, Shamsha Damani, MSLS,and Eduardo Bruera, MDDepartment of Palliative Care and Rehabilitation Medicine (D.H., S.H.K., Z.L., E.B.), Department of

Investigational Cancer Therapeutics (H.A.P.), and Research Medical Library (S.D.), The University of

Texas M. D. Anderson Cancer Center, Houston, Texas, USA; Division of Hematology and Oncology

(M.M.), Fletcher Allen Health Care/University of Vermont College of Medicine, Burlington, Vermont,

USA; and Department of Family Medicine (S.H.K.), Myong Ji Hospital, Kwandong University, College

of Medicine, Gyeonggi, Korea

Abstract

Context. Multiple organizations have raised concerns about the lack of standard

definitions for terminology in the supportive and palliative oncology literature.Objectives. Weaimed to determine 1) the frequency of 10 commonly used terms

in the supportive and palliative oncology literature, 2) the proportion of articlesthat provided definitions for each term, and 3) how each term was defined.

Methods. We systematically searched MEDLINE, PubMed, PsycINFO, theCochrane Library, Embase, ISI Web of Science, and Cumulative Index to Nursingand Allied Health Literature for original studies, review articles, and systematicreviews related to palliative care and cancer in the first six months of 2004 and2009. We counted the number of occurrences for ‘‘palliative care,’’ ‘‘supportivecare,’’ ‘‘best supportive care,’’ ‘‘hospice care,’’ ‘‘terminal care,’’ ‘‘end-of-life,’’‘‘terminally ill,’’ ‘‘goals of care,’’ ‘‘actively dying,’’ and ‘‘transition of care’’ in eacharticle, reviewed them for the presence of definitions, and documented thejournal characteristics.

Results. Among the 1213 articles found, 678 (56%) were from 2009. ‘‘Palliativecare’’ and ‘‘end-of-life’’ were the most frequently used terms. ‘‘Palliative care,’’‘‘end-of-life,’’ and ‘‘terminally ill’’ appeared more frequently in palliative carejournals, whereas ‘‘supportive care’’ and ‘‘best supportive care’’ were used moreoften in oncology journals (P< 0.001). Among 35 of 601 (6%) articles witha definition for ‘‘palliative care,’’ there were 16 different variations (21 of 35articles used the World Health Organization definition). ‘‘Hospice care’’ had 13definitions among 13 of 151 (9%) articles. ‘‘Supportive care’’ and other termswere rarely defined (less than 5% of articles that used the term).

Conclusion. Our findings highlight the lack of definitional clarity for manyimportant terms in the supportive and palliative oncology literature. Standard

Address correspondence to: David Hui, MD, MSc, MSc,Department of Palliative Care and RehabilitationMedicine, Unit 1414, The University of TexasM. D. Anderson Cancer Center, 1515 Holcombe

Boulevard, Houston, TX 77030, USA. E-mail:dhui@mdanderson.org

Accepted for publication: April 21, 2011.

� 2012 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterdoi:10.1016/j.jpainsymman.2011.04.016

Vol. 43 No. 3 March 2012 583Definitions in Palliative Oncology

definitions are needed to improve administrative, clinical, and researchoperations. J Pain Symptom Manage 2012;43:582e592. � 2012 U.S. Cancer PainRelief Committee. Published by Elsevier Inc. All rights reserved.

Key Words

Palliative care, supportive care, neoplasms, literature, terminology, definitions

IntroductionPalliative care has been defined by the

World Health Organization (WHO) as an ap-proach that ‘‘improves the quality of life(QOL) of patients and their families facingthe problem associated with life-threateningillness ..’’1 Over the past few decades, pallia-tive care has evolved from a philosophy ofcare to an accredited professional discipline,with a growing number of clinical programsand an accumulation of expertise related tosymptom control, psychosocial and spiritualcare, communication, decision making, andend-of-life care.2

In contrast to many established disciplinessuch as medical oncology and infectious dis-eases, many commonly used terms in palliativecare are poorly defined. According to theNational Institutes of Health Conference State-ment on improving end-of-life care, ‘‘there hasbeen a lack of definitional clarity related to sev-eral concepts and terms .. The lack of defini-tion for the key terms represents a barrier toresearch in improving end-of-life care.’’3 Thisdeficiency was recently echoed by the Ameri-can Society of Clinical Oncology (ASCO),which stated a ‘‘unanimous consensus regard-ing the need for . definitions of palliativecancer care ..’’4

In addition to operational terms, the defini-tions of many prognostic terms used in pallia-tive care have not been standardized. Howterminal is ‘‘terminally ill’’? How close to theend of life is ‘‘end of life’’? How about ‘‘activelydying’’? A lack of consensus in the meaning ofcommonly used terms can have significant im-plications administratively, clinically, and aca-demically, resulting in miscommunications,misunderstandings, and mishaps.

To date, no study has specifically examinedthe frequency of use of palliative care termsand how often the terms were defined. A clearunderstanding of the frequency of use andvariations in definitions of these terms would

underscore the need for standardization,which in turn could help minimize misinter-pretation of these key expressions. In this liter-ature review, we determined 1) the frequencyof 10 commonly used terms in the supportiveand palliative oncology literature by journaltype, 2) the proportion of articles that pro-vided definitions for each term, and 3) howeach term was defined.

MethodsPalliative Oncology Literature

The institutional review board at M. D.Anderson Cancer Center provided approval toproceed without the need for full committee re-view. Details on how we identified and charac-terized the supportive and palliative oncologyliterature recently have been published.5

Briefly, publications were included if theywere 1) original studies, reviews, or systematicreviews; 2) related to both palliative care andoncology; and 3) published in the first sixmonths of 2004 or 2009. Non-English articles,commentaries, editorials, dissertations, confer-ence abstracts, and letters were excluded. Aclinical librarian searchedMEDLINE, PubMed,PsycINFO, the Cochrane Library, EMBASE, ISIWeb of Science, and Cumulative Index to Nurs-ing andAlliedHealth Literature onOctober 28,2009. To identify original studies or review arti-cles related to supportive care or palliative care,we used the Boolean expression (Palliat$ orhospice$ or ‘‘terminal care’’). This search strat-egy has previously been validated to achievea specificity of 99.97% among general medicaljournals6 and has been used in several otherstudies.7,8 We then further identified studies re-lated to cancer. Our librarian handpicked thearticles for the correct date of publication inISI Web of Science and the Cochrane Librarybecause these databases could not be limitedby month of publication. Duplicates wereremoved.

584 Vol. 43 No. 3 March 2012Hui et al.

A medical oncologist (D. H.) and an inter-nist (H. A. P.), both with specialized researchtraining in palliative care, reviewed each ab-stract independently for relevance to palliativeoncology.9 All discrepancies were discussed,and a final list of articles was compiled. Wethen obtained full electronic copies of allunique publications identified based on theabove search strategy. For each publication,one author (D. H.) extracted information re-garding study type (original, systematic review,or review), year of publication, and journaltype. When a journal type fell under multiplecategories, we used a hierarchal approach forclassification. For instance, a journal focusingon palliative care issues in oncology was classi-fied as a palliative care/symptom control jour-nal consistently.

Selection of Supportive and PalliativeOncology Terms

To identify the top 10 search terms for thisstudy, we provided 20 palliative care specialists/oncologists, all with at least one year of clinicalexperience, with 18 terms: ‘‘actively dying,’’‘‘best supportive care,’’ ‘‘dying,’’ ‘‘end stage can-cer,’’ ‘‘end-of-life,’’ ‘‘far advanced cancer,’’ ‘‘goalsof care,’’ ‘‘holistic care,’’ ‘‘hospice care,’’ ‘‘im-pending death,’’ ‘‘near end-of-life,’’ ‘‘palliativecare,’’ ‘‘seriously ill,’’ ‘‘supportive care/medi-cine,’’ ‘‘terminal care,’’ ‘‘terminally ill,’’ ‘‘transi-tion of care,’’ and ‘‘specialist palliative careservice.’’Weaskedeachparticipant togive a scorebetween 1 and 5 regarding 1) ‘‘How commonly iseach term used in the palliative care literature?’’where 1¼ rarely and 5¼ frequently and 2) ‘‘Inyour opinion, how important is it for the termto be defined?’’ where 1¼ not important and5¼ very important. The two scores were com-bined. The 10 terms with the highest averagescores were used for this study.

Frequency of Terms and DefinitionsTo count the number of occurrences of each

term, we first retrieved portable document for-mat files of all manuscripts, converted theminto text files, and imported them into Micro-soft Access to search for key words using a VisualBasic for Applications script. For ‘‘palliativecare’’ and ‘‘hospice care,’’ we also searched ‘‘pal-liative medicine’’ and ‘‘hospice medicine’’ andcombined the search results. The bibliography,header, footer, and acknowledgment sections

were excluded from the counting process. Formanuscripts that failed this process, we countedthe terms manually. ‘‘Supportive care’’ and‘‘best supportive care’’ were considered as twomutually exclusive terms.For manuscripts with at least one occurrence

of each term of interest, we manually reviewedthem for counting accuracy and the presenceof a definition, which was determined basedon whether the authors explained or identi-fied the nature or essential qualities of theterm. Any uncertainties regarding whethera statement represented a definition were dis-cussed by two authors. In this study, a consen-sus in definitional clarity was defined whenmost studies (more than 50%) that includeda definition used the same description.

Statistical AnalysisWe summarized the publication characteris-

tics using frequencies, percentages, medians,and interquartile ranges. We compared the fre-quency of occurrence of each term by year(2004 vs. 2009) and journal type (palliativecare vs. oncology vs. others) using the Chi-squared test and Fisher’s exact test where appli-cable. A two-sided P-value of less than 0.05 wasconsidered to be statistically significant. TheSTATA special edition software (version 10.0,StataCorp LP, College Station, TX) was usedfor statistical analysis.

ResultsLiterature CharacteristicsWe identified a total of 1213 supportive/palli-

ative oncology articles. The literature character-istics have been reported in detail previously.5

A total of 535 (44%) articles were from 2004and 678 (56%) from 2009. Original studies to-taled 848 (70%); 506 (41%) were published inpalliative care journals, 225 (18%) in oncologyjournals, and 482 (40%) in other journals.

Identification of TermsBased on 20 physicians’ perceived frequency

of occurrence and the need for a definition, weidentified 10 terms chosen for further examina-tion (Table 1). The most common terms thatappear in the supportive and palliative oncol-ogy literature were ‘‘palliative care,’’ ‘‘end-of-life,’’ and ‘‘terminally ill.’’ Contrary to findings

Table 1Frequency of Occurrence and Definitions for Supportive/Palliative Oncology Terms (n¼ 1213)

TermNumber of Articles

Including the Term, n (%)

Median Number ofOccurrences/Article,a

n (Interquartile Range)Definition

Present,a n (%)

Palliative care 601 (50) 6 (2e14.5) 35 (6)End of life 386 (32) 4 (1e9) 0 (0)Terminally ill 245 (20) 2 (1e5) 5 (2)Hospice care 151 (12) 2 (1e4) 13 (9)Supportive care 106 (9) 1 (1e3) 2 (2)Terminal care 67 (6) 1 (1e2) 2 (3)Goals of care 55 (5) 2 (1e4) 1 (2)Best supportive care 26 (2) 1 (1e2) 1 (4)Actively dying 15 (1) 1 (1e2) 1 (7)Transition of care 1 (0.1) 1 0 (0)

aAmong articles with at least one occurrence of the term (i.e., second column).

Vol. 43 No. 3 March 2012 585Definitions in Palliative Oncology

from the physician survey, ‘‘transition of care,’’‘‘actively dying,’’ and ‘‘best supportive care’’were not commonly used in the supportiveand palliative oncology literature.

Between2004and2009,we founda significantincrease in the frequency of occurrence for ‘‘pal-liative care’’ and ‘‘end-of-life’’ but not for ‘‘sup-portive care’’ or the other terms (Table 2). Wealso found that ‘‘palliative care,’’ ‘‘end-of-life,’’and ‘‘terminally ill’’ appeared more frequentlyin palliative care journals, whereas ‘‘supportivecare’’ and ‘‘best supportive care’’ were moreoften used in oncology journals.

Frequency and Nature of Definitions‘‘Palliative care’’ and ‘‘hospice care’’ were

most frequently defined, with a definitionfound in 6% and 9% of articles that had at leastone occurrence of each term, respectively(Table 1). We identified no definitions for‘‘end-of-life’’ and ‘‘transition of care,’’ and therest of the terms were rarely defined (less than5% of articles that used the term, Table 1).Among all the articles that provided definitionsfor the 10 terms, we found only two that focusedon definitional issues.10,11

Table 3 lists definitions for the 10 terms.11e61

Among the articles searched, we found a total of16 different definitions for ‘‘palliative care’’from 35 articles, with most studies (21 of 35)that provided a definition for ‘‘palliative care’’adopting the one formulated by the WHO. Incontrast, we found 13 different definitions for‘‘hospice care’’ in 13 articles and only two defi-nitions for ‘‘supportive care’’ from two articles.‘‘Terminally ill’’ was described as a prognosisof six months or less in four of five articles.

DiscussionIn this literature review, we found that many

supportive and palliative oncology terms wererarely and inconsistently defined. Our findingshighlight the lack of definitional clarity forthese terms in the literature. Standard defini-tions are urgently needed to improve adminis-trative, clinical, and research operations.

Although it would be impractical to define ev-ery term that appears in a manuscript, it is gen-erally considered good practice to clarifya term’s meaning when it is poorly understoodor has many different interpretations. The 10terms in this study were selected by practicingphysicians tomeet the aforementioned criteria.Indeed, we found that many terms were rarelydefined. In contrast, ‘‘palliative care/medi-cine’’ had 16 variations of definitions in 35 arti-cles and ‘‘hospice care/medicine’’ had 13different definitions in 13 articles. Consistentwith our findings, Pastrana et al.62 examinedthe terms ‘‘palliative medicine’’ and ‘‘palliativecare’’ on the World Wide Web and in medicalreference books and found 37 English and 26German definitions. Until standardized defini-tions exist, our results suggest that there isa need to include a definition within each arti-cle that uses the term.

We found that ‘‘palliative care’’ wasmore com-monly used in the literature as compared with‘‘supportive care.’’ In fact, the use of ‘‘palliativecare’’ has increased over time, whereas the fre-quency of ‘‘supportive care’’ has remainedabout the same. The former term was usedmore in palliative care journals, and the latterwas found in oncology journals. There hasbeen a lot of debate regarding the meaning

Table 2Frequency of Terms by Year and Journal Typea

Term

Year Journal Type

2004 (n¼ 535)n (%)

2009 (n¼ 678)n (%) P-value

Palliative Care(n¼ 506) n (%)

Oncology(n¼ 225) n (%)

Others(n¼ 152) n (%) P-value

Palliative care 245 (46) 356 (53) 0.02 349 (69) 100 (44) 152 (32) <0.001End of life 129 (24) 257 (38) <0.001 198 (39) 64 (28) 124 (26) <0.001Supportive care 44 (8) 62 (9) 0.57 46 (9) 32 (14) 28 (6) 0.001Best supportive care 12 (2) 14 (2) 0.83 0 (0) 18 (8) 8 (2) <0.001Terminally ill 106 (20) 139 (21) 0.77 133 (26) 34 (15) 78 (16) <0.001Goals of care 22 (4) 34 (5) 0.46 24 (5) 11 (5) 21 (4) 0.94Terminal care 32 (6) 35 (5) 0.54 25 (5) 7 (3) 35 (7) 0.06Transition of care 1 (0.2) 0 (0) 0.26 0 (0) 0 (0) 1 (0.2) 0.49Hospice care 64 (12) 87 (13) 0.65 71 (14) 26 (12) 54 (11) 0.37Actively dying 6 (1) 9 (1) 0.75 8 (2) 0 (0) 7 (2) 0.17

aThe Chi-squared test and Fisher’s exact test (for small samples) were used.

586 Vol. 43 No. 3 March 2012Hui et al.

and utilization of these two terms.10,63e65 TheNational Cancer Institute (NCI) defines ‘‘pallia-tive care’’ and ‘‘supportive care’’ synonymously(Table 4).66 This was supported by a high degreeof overlap in the definitions for these two termsas shown in our study (Table 3). Specifically,both ‘‘palliative care’’ and ‘‘supportive care’’ in-volved multidimensional interdisciplinary careaimed at improving the QOL of patients andfamilies throughout the entire trajectory ofillness. In contrast, others viewed ‘‘palliativecare’’ as serving the needs of patients with in-curable illness, whereas ‘‘supportive care’’ pro-vides care for patients earlier in the diseasetrajectory.67 Two recent studies revealed that‘‘palliative care’’ and ‘‘supportive care’’ wereperceived differently among clinicians andcaregivers,12,68 with an accompanying editorialproviding an insightful review of the manyissues related to selection of the appropriateterminology.10

There are many reasons why standardizeddefinitions are lacking for many palliative careterms. First, unlikemany established disciplines,palliative care is still trying to find its own iden-tity within the health care system.11 Second,the multidisciplinary nature of palliative caremeans that there is a plethora of viewpointsand perspectives from different professionalorganizations. Third, some of the terms suchas ‘‘palliative care’’ canbe interpretedas aphilos-ophy, concept, approach, program, service,specialty, or knowledge domain.69 Thepleomor-phic nature invites diverse interpretations.Fourth, the sensitive nature of palliative carehas led to a creative list of euphemisms overtime.63 There appears to be an increased

interest in adopting the term ‘‘supportivecare.’’ A recent study found an increase in ser-vice utilization when our Palliative Care Pro-gram changed its name to ‘‘SupportiveCare.’’70 Fifth, significant regional variations inthe structures and processes of palliative careprograms exist. For example, ‘‘hospice care’’ inthe U.S. involves mostly home care, whereas itrepresents an inpatient home-like setting inCanada andmuch of Europe. Finally, as evidentin this study (Table 3), the loose use of languageby authors also contributes to definitionalheterogeneity.The lack of standard definitions in support-

ive/palliative oncology can have negativeimplications administratively, clinically, and aca-demically. We recently conducted a survey ofcancer centers in the U.S. and found great vari-ation in the structure of palliative care pro-grams.71 Some palliative care programs haveboth inpatient and outpatient services, whereasothers were only affiliated with a hospice pro-gram. The lack of definition also may hamperknowledge translation.72 Systematic reviews onthe effectiveness of palliative care have notbeen conclusive. This may partly be causedby the inclusion of a heterogeneous array of‘‘palliative care’’ interventions, ranging fromnurse-led follow-up programs to comprehensiveinterdisciplinary teams.73,74 Finally, ‘‘best sup-portive care’’ has been conveniently used to de-scribe control arms in oncology therapeutictrials that range from ‘‘no treatment’’ to variabledegrees of supportive care services.64,75

How can we establish standardized defini-tions? We first need to gain a better under-standing of how each term is used and

Table 3Definitions From Supportive/Palliative Oncology Studies

Palliative CareFourteen articles used the 2002 WHO definition:� ‘‘An approach that improves the quality of life of patients and their families facing the problems associated withlife-threatening illness through the prevention and relief of suffering by means of early identification and impeccableassessment of pain and other problems, physical, psychosocial and spiritual.’’13e25

Six articles used the 1990 WHO definition:� ‘‘The active total care of patients whose disease is not responding to curative treatment.’’11,26e31

Fourteen articles used other definitions:� ‘‘The active holistic care of patients with advanced, progressive illness.’’32

� ‘‘Care devoted to improving quality of life and reducing suffering for patients with severe, life threatening illnesses andtheir families.’’33

� ‘‘Active overall care, including quality-of-life care, of patients whose disease is no longer responsive to medicaltreatment.’’34

� ‘‘Care that aims to optimize the comfort, function and social support of the patients and their family when the illness isincurable.’’12

� ‘‘Care given to patients with symptoms originating from incurable disease or with a progressive disease with short expectedsurvival. Palliative care is an active, comprehensive care model built on a clearly defined philosophy with an aim to createthe requirements for quality of life (QOL) when a cure is no longer possible.’’35

� ‘‘Care focused on addressing physical, psychological, social, and spiritual domains in patients with progressive,life-limiting symptoms and their family.’’36

� ‘‘Care . provided from the early phase of advanced disease.’’37

� ‘‘The combination of active and compassionate therapies intended to comfort and support individuals and families whoare living with or dying from a progressive, life-threatening illness.’’38

� ‘‘As stated by the National Consensus Project, palliative care is ‘The goal is to prevent and relieve suffering and to supportthe best quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.’Also described by the Center to Advance Palliative Care as, ‘Interdisciplinary care that aims to relieve suffering and improvequality of life for patients with advanced illness and their families.’’’39

� ‘‘Defined by the AAHPM as providing care ‘focused on alleviating suffering and promoting quality of life.’’’40

� ‘‘The Royal College of Paediatrics and Child Health defined palliative care as ‘an active and total approach to the care ofchildren, embracing physical, emotional, social and spiritual elements.’’’41

� ‘‘The active holistic care of patients with advanced, progressive illness.’’42

� ‘‘Medical care focused on relief of physical, emotional, and existential suffering and support for the best possible qualityof life for patients and their family caregivers.’’43

� ‘‘The active total care of the child’s body, mind, and spirit, and also involves giving support to the patient’s family.’’44

Supportive Care� Defined by the ESMO as ‘‘care that aims to optimize the comfort, function, and social support of the patients and theirfamily at all stages of the illness, including those with curable cancer.’’12

� ‘‘Interventions intended to manage the adverse effect of the tumor itself and antineoplastic therapy.’’45

Best Supportive Care� ‘‘Watchful-waiting, or best supportive care, is meant to enhance or maintain the patient’s quality of life with treatmentsthat are symptom-focused rather than tumour-focused.’’46

Hospice Care� ‘‘A programmatic model for the delivery of palliative care at the end-of-life that primarily serves administrative, regulatoryand cost-containment interests.’’11

� ‘‘A program for terminally ill persons providing services for the palliation and management of terminal illness andrelated conditions.’’47

� ‘‘Hospice services provide supportive care in the home for patients with a life expectancy of less than 6 months. Thefocus of hospice care is patient comfort; treatment to extend life is not included.’’48

� ‘‘Designed to provide a variety of services to terminally ill patients, primarily focusing on pain relief and symptommanagement.’’49

� ‘‘Supports patients through the dying process and the surviving family members through the dying and bereavementprocess.’’19

� ‘‘In providing active care of patients with advanced, progressive, and incurable disease, hospice care: Provides relief frompain and other distressing symptoms; Enhances quality of life when the length of life is limited; Regards dying as a normalprocess; Does not intend to hasten or postpone death; Incorporates psychological and spiritual aspects of patient care;Uses a team approach to provide a support system for patients and their families.’’50

� ‘‘Provides terminally ill patients with a unique set of benefits, services, and support. Its goal is neither to prolong lifenor hasten death, but rather to provide total care that maximizes quality of life.’’51

� ‘‘Provides palliative and passionate care for people in the last phases of a terminal disease and their families, so that theymay live with dignity and as fully and comfortably as possible.’’52

� ‘‘A multidisciplinary program designed to increase the quality of life for a person at the end of life but does not requirethat the patient be in a do not resuscitate status. This program can be administered where the patient chooses, that is,a nursing home, the home of a relative, or in their own home. Types of support offered may include medical, emotional,spiritual, and therapy. Often, a component is offered for the family of the patient, which can include counseling,bereavement help, support groups, and training in how to care for their loved one.’’53

(Continued)

Vol. 43 No. 3 March 2012 587Definitions in Palliative Oncology

Table 3Continued

� ‘‘Designed for patients with terminal illness and a life expectancy of 6 or fewer months. To be eligible for hospice,patients must be willing to forgo treatment of the condition for which hospice was initiated (e.g., a cancer patientcannot receive cancer-directed therapy, such as chemotherapy, while enrolled in hospice). Hospice provides servicesto reduce pain and suffering and to improve quality of life. Hospice includes typical palliative care services, such aspain and symptom management, and also offers more comprehensive services, such as medications for pain and symptommanagement, case management, respite care, and bereavement services. Hospice care is provided by an interdisciplinaryteam that includes a nurse, physician, social worker, chaplain, home health aide, and volunteers.’’54

� ‘‘Involves a team-oriented approach for providing emotional and spiritual support for the patient and family, as wellas offering expert medical care and pain management.’’55

� ‘‘A Medicare-sponsored program that elderly and non-elderly patients can enter for the last 6 months of their lives.’’56

� ‘‘A comprehensive program of care that is appropriate when patients with chronic, progressive, and eventuallyfatal illness are determined to have a prognosis of 6 months or fewer.’’57

End of Life� No definitionsTerminally Ill� ‘‘A life expectancy of 6 months or less.’’11

� ‘‘Beneficiaries who have a progressive incurable illness that will culminate in death.’’58

� Two definitions mentioned in this article: ‘‘Life expectancy less than three months;’’ ‘‘Life expectancy of lessthan six months.’’28

� ‘‘Less than six months to live.’’59

� ‘‘Death is likely within 6 months.’’43

Goals of Care� ‘‘Related to quality of life and end-of-life care.’’36

Terminal Care� ‘‘Care of patients with an anticipated prognosis of 3 months or less.’’60

� ‘‘Concerns individuals with a terminal diagnosis, from which death can be expected within 12 months. Palliativeterminal care concerns relieving the patients’ suffering in the last phase of their lives, and includes, in additionto alleviation of physical symptoms, attention to emotional, spiritual and social aspects.’’28

Transition of Care� No definitionsActively Dying� ‘‘The hours or days preceding imminent death during which time the patient’s physiologic functions wane.’’61

588 Vol. 43 No. 3 March 2012Hui et al.

defined in the literature. For system termssuch as ‘‘palliative care,’’ it would be helpfulto include in its definition the essential ele-ments related to its structure, process, and out-comes. Professional organizations, such asWHO, ASCO, the European Society for Medi-cal Oncology (ESMO), the American Academyof Hospice and Palliative Medicine (AAHPM),the European Association for Palliative Care(EAPC), and the International Associationfor Hospice and Palliative Care (IAHPC), allneed to work together to arrive at a consensusand publish standardized definitions. A list ofdefinitions for ‘‘palliative care’’ and ‘‘support-ive care’’ by various organizations is shown inTable 4.1,4,76e84

This study has a number of limitations. First,our literature search was limited to cancer-related instead of all palliative care studies. Wealso only examined studies published in the firstsix months of 2004 and 2009. This sample maynot be representative of the greater supportiveand palliative oncology literature and may nothave captured all the definitions related toeach term. A systematic review looking for

attempts to define each of the terms would behelpful. Second, the five-year interval may notbe long enough to notice any change in fre-quency. Third, to ensure a high specificity ofour review, we did not include some terms withsimilar meanings in our search strings, such as‘‘palliative cancer care’’ and ‘‘hospiceprograms.’’Finally, our search only examined definitionswithin the text and not within cited references.In summary, we documented the lack of def-

initions for commonly used terms in palliativecare through a detailed review of the publishedliterature.Our study highlights the urgent needto derive consensual definitions. Until then, it isprudent to provide a definition or citationwhen using one of these terms.

Disclosures and AcknowledgmentsThis work was supported in part by the

National Institutes of Health grantsRO1NR010162-01A1, RO1CA122292-01, andRO1CA124481-01 (E. B., principal investiga-tor). The authors report no relevant financialconflicts of interest.

Table 4Definitions of Palliative Care and Supportive Care by Various Organizations

Palliative Care DefinitionsAAHPM76

‘‘The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients andtheir families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of careand an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medicaltreatments 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 careor as the main focus of care.’’

ASCO4

‘‘The integration into cancer care of therapies that address the multiple issues that cause suffering for patients and theirfamilies and impact their life quality.’’

EAPC77

‘‘The active, total care of the patients whose disease is not responsive to curative treatment. Control of pain, of othersymptoms, and of social, psychological and spiritual problems is paramount. Palliative care is interdisciplinary in its approachand encompasses the patient, the family and the community in its scope. In a sense, palliative care is to offer the most basicconcept of caredthat of providing for the needs of the patient wherever he or she is cared for, either at home or in thehospital. Palliative care affirms life and regards dying as a normal process; it neither hastens nor postpones death. It sets out topreserve the best possible quality of life until death.’’

ESMO78

‘‘Care that aims to optimize the comfort, function, and social support of the patients and their family when cure is notpossible. This dimension of care emphasizes the special needs of patients whose illness is either incurable or unlikely to becured. Needs include physical and psychological symptom control, education, and optimization of community supports.’’

IAHPC79

‘‘Care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention ofsuffering and the quality of life.’’

National Comprehensive Cancer Network80

‘‘Both a philosophy of care and an organized highly structured system for delivering care to persons with life-threatening ordebilitating illness. Palliative care is patient and family centered care that focuses on effective management of pain and otherdistressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs,and cultures.’’

NCI81

‘‘Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative careis to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, andpsychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, supportive care,and symptom management.’’

National Hospice and Palliative Care Organization82

‘‘Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life.’’National Palliative Care Research Center83

‘‘Focuses on relieving suffering and achieving the best possible quality of life for patients and their family caregivers. Itinvolves symptom assessment and treatment; aid with decision making and establishing goals of care; practical support forpatients and their family caregivers; mobilization of community support and resources to assure a secure and safe livingenvironment; and collaborative and seamless models of care (hospital, home, nursing homes, and hospice). It is offeredsimultaneously with life prolonging and curative therapies for persons living with serious, complex, and eventually terminalillness.’’

WHO1

‘‘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 assessmentand treatment of pain and other problems, physical, psychosocial and spiritual.’’

Supportive Care DefinitionsESMO78

‘‘Care that aims to optimize the comfort, function, and social support of the patients and their families at all stages of theillness. This dimension of care emphasizes the oncologist’s role in optimizing the quality-of-life for all patients, includingthose with potentially curative illness.’’

Multinational Association of Supportive Care in Cancer84

‘‘Supportive Care in cancer is the prevention and management of the adverse effects of cancer and its treatment. This includesmanagement of physical and psychological symptoms and side effects across the continuum of the cancer experience fromdiagnosis through anticancer treatment to post-treatment care. Enhancing rehabilitation, secondary cancer prevention,survivorship and end of life care are integral to Supportive Care.’’

NCI81

‘‘Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive careis to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, andpsychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, palliative care, andsymptom management.’’

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590 Vol. 43 No. 3 March 2012Hui et al.

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