Vol. 47 No. 1 January 2014 Journal of Pain and Symptom Management 77

Review Article

Concepts and Definitions for ‘‘ActivelyDying,’’ ‘‘End of Life,’’ ‘‘Terminally Ill,’’‘‘Terminal Care,’’ and ‘‘Transition of Care’’:A Systematic ReviewDavid Hui, MD, MSc, Zohra Nooruddin, MD, Neha Didwaniya, MD, Rony Dev, MD,Maxine De La Cruz, MD, Sun Hyun Kim, MD, Jung Hye Kwon, MD,Ronald Hutchins, MSLS, Christiana Liem, MLS, and Eduardo Bruera, MDDepartment of Palliative Care and Rehabilitation Medicine (D.H., Z.N., N.D., R.D., M.D.L.C., E.B.)

and Research Medical Library (R.H., C.L.), The University of Texas M. D. Anderson Cancer Center,

Houston, Texas, USA; Department of Family Medicine (S.H.K.), Myong Ji Hospital, Kwandong

University, College of Medicine, Gyeonggi, and Department of Internal Medicine (J.H.K.), Kangdong

Sacred Heart Hospital, Hallym University, Seoul, Republic of Korea

Abstract

Context. The terms ‘‘actively dying,’’ ‘‘end of life,’’ ‘‘terminally ill,’’ ‘‘terminal

care,’’ and ‘‘transition of care’’ are commonly used but rarely and inconsistentlydefined.

Objectives. We conducted a systematic review to examine the concepts anddefinitions for these terms.

Methods. We searched MEDLINE, PsycINFO, Embase, and CINAHL forpublished peer-reviewed articles from 1948 to 2012 that conceptualized, defined,or examined these terms. Two researchers independently reviewed each citationfor inclusion and then extracted the concepts/definitions when available. We alsosearched 10 dictionaries, four palliative care textbooks, and 13 organization Websites, including the U.S. Federal Code.

Results. One of 16, three of 134, three of 44, two of 93, and four of 17 articlesdefined or conceptualized actively dying, end of life, terminally ill, terminal care,and transition of care, respectively. Actively dying was defined as ‘‘hours or days ofsurvival.’’ We identified two key defining features for end of life, terminally ill, andterminal care: life-limiting disease with irreversible decline and expected survivalin terms of months or less. Transition of care was discussed in relation to changesin 1) place of care (e.g., hospital to home), 2) level of professions providing thecare (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative).Definitions for these five terms were rarely found in dictionaries, textbooks, andorganizational Web sites. However, when available, the definitions were generallyconsistent with the concepts discussed previously.

Address correspondence to: David Hui, MD, MSc, De-partment of Palliative Care and Rehabilitation Med-icine, Unit 1414, University of Texas M. D. Anderson

Cancer Center, 1515 Holcombe Boulevard, Hous-ton, TX 77030, USA. E-mail: dhui@mdanderson.org

Accepted for publication: February 25, 2013.

� 2014 U.S. Cancer Pain Relief Committee.Published by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterhttp://dx.doi.org/10.1016/j.jpainsymman.2013.02.021

78 Vol. 47 No. 1 January 2014Hui et al.

Conclusion. We identified unifying concepts for five commonly used terms inpalliative care and developed a preliminary conceptual framework towardbuilding standardized definitions. J Pain Symptom Manage 2014;47:77e89.� 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key Words

Actively dying, end of life, systematic review, terminal care, terminally ill, terminology,transition of care

IntroductionPrognostication of life expectancy is of the

utmost importance to patients, families, andhealth care professionals, particularly in thesetting of advanced disease. Many importanthealth care decisions, such as those regardingchemotherapy use, hospice referral, advancecare planning, discharge planning, and per-sonal finances, are dependent on the expectedsurvival duration. The terms ‘‘end of life,’’‘‘terminally ill,’’ and ‘‘actively dying’’ have prog-nostic implications and are frequently used inclinical communications and published arti-cles;1 however, the exactmeaning of these termsis unclear. This ambiguity results in confusionthatmay lead to delays and inconsistencies in ar-ranging ‘‘terminal care’’ and facilitating ‘‘transi-tion of care.’’ Ironically, these latter two termsalso are poorly defined.1

In a recent survey conducted by our team, pal-liative care specialists ranked the terms end oflife, terminally ill, terminal care, actively dying,and transition of care highly in regard to boththe frequency of use and the relative impor-tance.1 A better understanding of the definingfeatures and concepts for these five terms couldhelp to standardize them and thus improvecommunication among clinicians, researchers,and policy makers. The objective of this system-atic review was to examine the published lit-erature, medical dictionaries, textbooks, andorganization Web sites for concepts and defini-tions for end of life, actively dying, terminally ill,terminal care, and transition of care.

MethodsLiterature Search

This study was approved by the M. D. Ander-son Cancer Center Institutional Review Boardwithout the need for full committee review.

Between February 21, 2011, and April 18,2011, we searched all available records in OvidMEDLINE, Ovid Embase, Ovid PsycINFO, andEBSCOCINAHL from1948 to 2011.Our searchstrategy consisted of Medical Subject Headingsand text word or text phrase for actively dying,end of life, terminally ill, terminal care, andtransition of care, plus one of the followingterms including ‘‘defin$,’’ ‘‘understanding,’’‘‘conceptualization,’’ ‘‘terminology,’’ and ‘‘no-menclature.’’ This methodology has previouslybeen used for other palliative care terms.2 Weincluded all original studies, reviews, systematicreviews, guidelines, editorials, commentaries,and letters that specifically definedor conceptu-alized the terms of interest and excludednon-English articles, dissertations, conferenceabstracts, and duplicates. The search was up-dated on September 2012. In addition, we con-ducted a hand search of the reference lists of allincluded articles.After the initial librarian search, two pallia-

tive care specialists independently reviewedthe title and abstract of each citation for inclu-sion. Publications were included if one of theirobjectives was to provide a definition or con-ceptualization for the terms of interest. Anydisagreements were discussed and a consensusreached. We then retrieved the full article andextracted the definitions and/or key conceptsrelated to each term.

Dictionary SearchWe also searched for definitions related to

actively dying, end of life, terminally ill, termi-nal care, and transition of care in six printdictionaries and four online medical dictionar-ies. The print dictionaries were selected froma list of 26 based on their year of publicationand authoritative publishers and includedMcGraw-Hill Allied Medical Dictionary (2008),Dorland’s Illustrated Medical Dictionary (2007),

Vol. 47 No. 1 January 2014 79Definitions for Palliative Care Terms

Black’s Medical Dictionary (2010), Mosby’s Medi-cal Dictionary (2009), Stedman’s Medical Dictio-nary (2006), and Taber’s Cyclopedic MedicalDictionary (2009).

The Google search engine was used to iden-tify four online medical dictionaries based oncriteria outlined by A Guide for EvaluatingHealth Web Sites provided by the National Net-work of Libraries of Medicine (http://nnlm.gov/outreac/consumer/evalsite.html). Theseincluded MediLexicon (2011), Medical Dictionary(WebMD, 2011), MedlinePlus Medical Dictionary(2011), and The Free Dictionary: Medical Dictio-nary (2011).

Textbook SearchWe identified four commonly used palliative

medicine textbooks (Oxford Textbook of PalliativeMedicine, 4th edition; Textbook of Palliative Medi-cine, 1st edition; Principles and Practice of Pallia-tive Care and Supportive Oncology, 3rd edition;and Palliative Medicine, 1st edition) andsearched for definitions for the five terms ofinterest.

Organization Web site SearchWe also searched 12 palliative care and oncol-

ogy organization Web sites for definitions re-lated to the five terms of interest, includingAmerican Academy of Hospice and PalliativeMedicine, American Cancer Society, American

Fig. 1. Search strategy for articles that conceptualized/defi‘‘terminal care,’’ and ‘‘transition of care.’’

Society of Clinical Oncology, European Associa-tion for Palliative Care, European Society forMedical Oncology, Education in Palliative andEnd-of-life Care, End-of-Life/Palliative Educa-tionResourceCenter, International Associationfor Hospice and Palliative Care, MultinationalAssociation of Supportive Care in Cancer, Na-tional Comprehensive Cancer Network, Na-tional Cancer Institute (NCI) dictionary, andNational Hospice and Palliative Care Organiza-tion.We also searched theU.S. Federal Code forlegal definitions for the five terms.

Statistical AnalysisWe summarized the concepts and defini-

tions using frequencies and percentages.

ResultsLiterature Search

The literature search flowchart is shown inFig. 1.

Concepts and Definitions for Actively DyingOnly one article addressed definitions re-

lated to actively dying (Table 1): ‘‘The hoursor days preceding imminent death duringwhich time the patient’s physiologic functionswane.’’1 No definitions were found in dictio-naries and textbooks for this term (Tables 2and 3). Two Web sites provided the same

ned ‘‘actively dying,’’ ‘‘end of life,’’ ‘‘terminally ill,’’

Table 1Definitions for ‘‘Actively Dying,’’ ‘‘End of Life,’’ ‘‘Terminally Ill,’’ ‘‘Terminal Care,’’ and ‘‘Transition of Care’’

Reference Study Type Definition(s) Proposed or Information Discussed Citation Source

Articles on actively dyingHui et al., J Pain Symptom

Manage, 20121Systematic review Actively dying: ‘‘The hours or days preceding imminent death during which time the patient’s

physiologic functions wane.’’Kintzel et al.23

Articles on end of lifeLunney, J Hosp Palliat Nurs, 20014 Editorial End of life: ‘‘That financing has contributed to the growth of an important care-delivery

service, but its restriction to those with a 6-month-or-less prognosis has only furthercemented the notion that the end of life is constrained to a short period of time duringwhich a person is clinically recognized as dying.’’

None

Lamont, J Palliat Med, 20053 Review article End-of-life: ‘‘In clinical medicine, the ‘end of life’ can be thought of as the period precedingan individual’s natural death from a process that is unlikely to be arrested by medical care.’’

None

End-of-life: ‘‘For insurance purposes, the ‘end of life’ has been operationalized to representthe last 6 months of a patient’s life.’’

None

Articles on terminally illMcCartney and Trau,

Death Stud, 19906Review Terminal condition: ‘‘What we are suggesting then is the commonsense view, held by at least

two appellate courts, that ‘dying’ or a ‘terminal condition’ is ‘a condition caused by injury,disease, or illness from which, to a reasonable degree of certainty, there can be norestoration of health, and which, absent artificial life-prolonging procedures, will inevitablylead to natural death.’’

None

Terminally ill: ‘‘The authors argue that those permanently unconscious are by definitionterminally ill and suffering from a fatal pathology, because medical treatment in their caseswill not lead to a restoration of health and will prolong the dying process.’’

None

Terminally ill: ‘‘We . argue that people in an irreversible coma (IC) and/or a persistentvegetative state (PVS) are, ipso facto, terminally ill. For the sake of simplicity, we willconsider IC and PVS to belong to this same class of terminally ill people and refer to themas permanently unconscious, though we recognize that each group has different, butrelated, neurological impairments.’’

None

Lynn, Duquesne Law Rev, 19965 Review Terminal illness: ‘‘The Medicare hospice benefit, for example, is limited to persons whosephysicians attest that the patient has ‘a terminal illness with a life expectancy of six monthsor less.’’’

Xact Medicare Services,Medicare Part BReference Manual,Revision 020, August23, 1996

Subjective judgment: ‘‘The usual approach regarding living will has been to delegate thedetermination of whether an individual is terminally ill to a physician, perhaps with someconsultation required. Other possibilities abound, including allowing the patient to makethe determination, creating a committee for review, requiring judicial review, requiringconsensus between the attending physician and named family members, etc.’’

Miesel, supra note 1

Statistical prognosis approach: ‘‘. required that public policy (e.g., in defining thepopulation eligible for physician-assisted suicide) adopt a definition that requires thata terminally ill person has ‘less than x% chance to live y time’. The statistical prognosisapproach could be more complex, for example, by stating that the patient’s survival mustalso be less than (x þ a)% at some later time (y þ b).’’

None

Observable clinical threshold of illness: ‘‘A patient with an illness expected to be fatal will beclassified as ‘‘terminal’’ if the patient’s health become worse than a stated threshold.’’

None

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Systematic review Terminally ill: ‘‘A life expectancy of 6 months or less.’’ Meghani24

Terminally ill: ‘‘Beneficiaries who have a progressive incurable illness that will culminate indeath.’’

Buntin et al.25

Terminally ill: Two definitions mentioned in this article: ‘‘Life expectancy less than threemonths’’; ‘‘Life expectancy of less than six months.’’

Proot et al.26

Terminally ill: ‘‘Less than six months to live.’’ Babgi27

Terminally ill: ‘‘Death is likely within 6 months.’’ Rondeau and Schmidt28

Articles on terminal careMcCusker, J Chronic Dis, 19847 Retrospective study Terminal care period: ‘‘Parkes defines. the ‘period of terminal care’ as that period from the

end of active treatment to the patient’s death.’’Parkes29

Terminal care period: ‘‘The period during which there is evidence of progressive malignancy,and in which therapy cannot realistically be expected to prolong survival significantly.Patients enter this period either at time of diagnosis, or following a period of activetreatment. The onset of the terminal care period should not be confused with the point atwhich life-expectation is estimated to be short. A patient might be expected to die withina few months, but have a treatable malignancy. This patient would still be in the activetreatment period.’’

None

Terminal illness: ‘‘Calman lists three conditions, all of which need to be met before makinga diagnosis of ‘terminal’ illness in cancer patients: a firm diagnosis, with symptoms andsigns relate to progressive malignant disease and not primarily to non-terminal conditions;the recognition that death is not far off; and that conventional anticancer therapy (surgery,radiotherapy, cytotoxic chemotherapy and hormonal therapy) has been used to the full.’’

Calman KC. Physicalaspects. In: SaundersCM, ed. Themanagement ofterminal disease.London: Arnold, 1978

Type of terminal care period: ‘‘Type I: no tumor directed therapy .; Type II: tumor-directedtherapy discontinued .; Type III: tumor-directed therapy continued during terminalperiod.’’

None

Hui et al., J Pain SymptomManage, 20121

Systematic review Terminal care: ‘‘Care of patients with an anticipated prognosis of 3 months or less.’’ Napolskikh et al.30

Terminal care: ‘‘Concerns individuals with a terminal diagnosis, from which death can beexpected within 12 months. Palliative terminal care concerns relieving the patients’suffering in the last phase of their lives, and includes, in addition to alleviation of physicalsymptoms, attention to emotional, spiritual and social aspects.’’

Proot et al.26

Articles on transition of careMiller, Paediatr Nurs, 199611 Review Themes identified for transition from adolescent to adult care include: timing (gradual,

individualized), no specific time, arrangement of clinics (specialized, clinic hours,professionals), information giving (tailored), transition models.

None

Burge et al., BMC PalliatCare, 20058

Retrospective study Transition of care during the end of life: ‘‘1) a change in location of where the patient wascared for by the PCP (Palliative Care Program) or 2) a change in which clinical serviceprovided care.’’

None

Rayson and McIntyre,Curr Oncol Rep, 20079

Review Discussed transitions in the context of 1) changing place of care, 2) changing goals of care, 3)changing teams of care.

None

Reinke et al., J Palliat Med, 200810 Qualitative study Themes identified for transitions at the end of life include 1) new or different treatments, 2)no more treatment/curative to palliative care, 3) activity limitations/functional decline, 4)initiation of oxygen therapy, 5) illness exacerbation or hospitalization, 6) improvementfrom illness.

None

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Table 2Definitions for ‘‘Actively Dying,’’ ‘‘End of Life,’’ ‘‘Terminally Ill,’’ ‘‘Terminal Care,’’ and ‘‘Transition of Care’’ From Print and Online Dictionaries

ReferenceActivelyDying End of Life Terminally Ill

TerminalCare

Transitionof Care

Print dictionariesMcGraw-Hill Allied Medical Dictionary (2008) No entry No entry No entry No entry No entryDorland’s Illustrated Medical Dictionary (2007) No entry No entry No entry No entry No entryBlack’s Medical Dictionary (2009) No entry No entry No entry No entry No entryMosby’s Medical Dictionary (2009) No entry No entry Terminal illness: An advanced stage of a disease

with an unfavorable prognosis and no knowncure.

No entry No entry

Stedman’s Medical Dictionary (2006) No entry No entry No entry No entry No entryTaber’s Cyclopedic Medical Dictionary (2009) No entry No entry Terminal illness: A final fatal illness. No entry No entry

Online dictionariesMediLexicon (2011) No entry No entry No entry No entry No entryMedical Dictionary (WebMD, 2011) No entry No entry No entry No entry No entryMedlinePlus Medical Dictionary (2011) No entry No entry No entry No entry No entryThe Free Dictionary: Medical Dictionary (2011) No entry End of life. (Medtalk) adjective: Referring to

a final perioddhours, days, weeks, months ina person’s life in which it is medically obviousthat death is imminent or a terminalmoribund state cannot be prevented.

End of life. (Cardiac pacing) noun: The point atwhich a pacemaker signals need forreplacement, as its battery is nearingdepletion

Source: McGraw-Hill Concise Dictionary of ModernMedicine. � 2002

Terminally ill (Managed care): The status ofa person expected to die within six monthsfrom a specific condition and thus may needhospice care. Source: McGraw-Hill ConciseDictionary of Modern Medicine. � 2002

No entry No entry

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Table3

Defi

nitionsfor‘‘ActivelyDying,’’‘‘EndofLife,’’‘‘Terminally

Ill,’’‘‘Terminal

Care,’’an

d‘‘TransitionofCare’’From

PalliativeCareTex

tbooks

PalliativeCareTex

tbook

ActivelyDying

EndofLife

Terminally

Ill

Terminal

Care

TransitionofCare

OxfordTextbookof

PalliativeMedicine,4th

edition(201

0)Noen

try

Noen

try

Terminal

phase:

Theperiodofinex

orable

and

irreversible

declinein

functional

statusbefore

death.

Thismay

unfold

grad

ually

overdaysorwee

kswith

afluctuatingbutnonethelessongo

ingdeclinein

aprogressive

illness,precipitouslyfollowingan

unex

pectedan

ddevastatingneu

rologicale

ventsuch

asastroke

,orfollowingaplanned

withdrawal

oflife-

sustaininginterven

tions,such

ashem

odialysisor

ventilatory

support

Noen

try

Noen

try

Textbookof

PalliativeMedicine,1stedition(200

6)Noen

try

Noen

try

Noen

try

Noen

try

Noen

try

Principles

andPracticeof

PalliativeCarean

dSu

pportive

Oncology,3rd

edition(200

7)Noen

try

Noen

try

Noen

try

Noen

try

Noen

try

PalliativeMedicine,1stedition(200

9)Noen

try

Noen

try

Noen

try

Noen

try

Noen

try

Vol. 47 No. 1 January 2014 83Definitions for Palliative Care Terms

definition of actively dying, describing it asa process with unique signs and symptoms be-fore death (Table 4).

Concepts and Definitions for End of LifeThree of 134 articles discussed the concepts

for end of life (Table 1). Lamont3 discussedthe ‘‘challenge of recognizing the onset of thisunique period referred to as the end of life’’and two key aspects: 1) a disease-centeredperspective based on a period of irreversibledecline before death and 2) a time-based per-spective related to the hospice admission crite-ria of six months or less of life expectancy. Thetime-based approach also was mentioned in aneditorial by Lunney.4

One dictionary (Table 2) and one organiza-tional Web site (Table 4) provided definitionsfor end of life. Both incorporated elementsof disease trajectory and life expectancy intheir definitions, although the duration of sur-vival was not clearly defined.

Concepts and Definitions for Terminally IllTerminally ill was discussed in three articles,

two of which focused on the legal definitions5,6

and one on definitions available in the lit-erature.1 Lynn5 discussed the criteria for cate-gorizing terminally ill, including ‘‘1) A cleardefinition of terminal illness so that almost allindividuals may be classified correctly; 2) A rea-sonable survival period of persons who are cate-gorized as terminally ill (to make, effect, and beaffected by decisions or to receive benefits); 3)Aperiod of terminal illness recognizable for mostlethal chronic diseases; and 4) Competence ofpersons within the category, at least for part oftheir time as terminally ill.’’ The authors furtherdescribed three approaches to defining thisterm: subjective judgment, statistical prognosisapproach, and observable clinical threshold ofillness (Table 2). They also cited the Medicarehospice benefit definition in which a terminalillness was described as a life expectancy of sixmonths or less.

McCartney and Trau proposed that a ‘‘termi-nal condition’’ is one in which ‘‘to a reasonabledegree of certainty, there can be no restorationof health, and which, absent artificial life-prolonging procedures, will inevitably lead tonatural death.’’ They further argued that pa-tients in irreversible coma or persistent vegeta-tive state were terminally ill.6 In a systematic

Table 4Definitions for ‘‘Actively Dying,’’ ‘‘End of Life,’’ ‘‘Terminally Ill,’’ ‘‘Terminal Care,’’ and ‘‘Transition of Care’’ From Organizational Web sites

Web sites Actively Dying End of Life Terminally IllTerminalCare Transition of Care

American Academy of Hospice andPalliative Medicine, www.aahpm.org

No entry No entry No entry No entry No entry

American Cancer Society, www.cancer.org

No entry No entry Terminal illness: An irreversiblecondition that in the near futurewill result in death or a state ofpermanent unconsciousness fromwhich you are unlikely to recover.In most states, a terminal illness isdefined as one in which the patientwill die ‘‘shortly’’ whether medicaltreatment is given

No entry No entry

American Society of ClinicalOncology, www.asco.org

No entry No entry No entry No entry No entry

European Association for PalliativeCare, www.eapcnet.eu

No entry No entry No entry No entry No entry

European Society for MedicalOncology, www.esmo.org

No entry No entry No entry No entry No entry

Education in Palliative and End-of-lifeCare, www.cancer.gov/cancertopics/cancerlibrary/epeco

No entry No entry No entry No entry No entry

End-of-Life/Palliative EducationResource Center, www.eperc.mcw.edu

Actively dying: Virtually, all dyingpatients go through a stereotypicalpattern of symptoms and signs inthe days before death. Thistrajectory is often referred to as‘‘actively dying’’ or ‘‘imminentdeath.’’

No entry No entry No entry No entry

International Association for Hospiceand Palliative Care, www.hospicecare.com/; www.pallipedia.org/

Actively dying: Virtually, all dyingpatients go through a stereotypicalpattern of symptoms and signs inthe days before death. Thistrajectory is often referred to as‘‘actively dying’’ or ‘‘imminentdeath.’’ (From EPERC)

End of life: That part oflife where a person isliving with, andimpaired by, aneventually fatalcondition, even if theprognosis isambiguous orunknown.

Terminal condition: A progressivecondition that has no cure and thatcan be reasonably expected tocause the death of a person withina foreseeable future. The definitionis inclusive of both malignant andnonmalignant illness and aging. Aperson has an eventually fatalcondition if their death in theforeseeable future would not bea surprise. The terms eventuallyfatal or terminal condition are usedinterchangeably. In reference tothe patient, language that refers toliving with an eventually fatal (orterminal) condition isrecommended.

No entry No entry

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Multinational Association ofSupportive Care in Cancer, www.mascc.org

No entry No entry No entry No entry No entry

National Comprehensive CancerNetwork, www.nccn.org

No entry No entry No entry No entry No entry

National Cancer Institute dictionary,www.cancer.gov/dictionary

No entry No entry Terminal disease: Disease that cannotbe cured and will cause death.

No entry Transitional care: Supportgiven to patients whenthey move from onephase of the disease ortreatment to another,such as from hospitalcare to home care. Itinvolves helpingpatients and familieswith medical, practical,and emotional needsas they adjust todifferent levels andgoals of care.

The National Hospice and PalliativeCare Organization, www.nhpco.org

No entry No entry No entry No entry No entry

U.S. Federal Code, uscode.house.gov No entry No entry Terminally ill: An individual who hasbeen certified by a physician ashaving an illness or physicalcondition which can reasonably beexpected to result in death in 24months or less after the date of thecertification. (26 USC Sec. 101)

Terminally ill: An individual hasa medical prognosis that suchindividual’s life expectancy is ninemonths or less. (5 USC Sec. 8714d)

Terminally ill: The person hasa medical prognosis such that thelife expectancy of the person is lessthan a period prescribed by theSecretary. The maximum length ofsuch period may not exceed12 months. (38 USC Sec. 1980)

Terminally ill: The individual hasa medical prognosis that theindividual’s life expectancy is6 months or less. (42 USC Sec.1395x)

No entry No entry

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86 Vol. 47 No. 1 January 2014Hui et al.

review, Hui et al. identified six definitions re-lated to terminally ill from various palliativeoncology publications. Four of these defini-tions involved a life expectancy of six monthsor less (Table 2).

We identified three definitions from dictio-naries (Table 2), one definition from text-books (Table 3), and seven definitions fromorganizational Web sites (Table 4) for termi-nally ill. Seven of these definitions includedthe concept of irreversible fatal illness. Nineincluded a reference to a limited life expec-tancy, ranging from ‘‘24 months or less,’’ ‘‘12months or less,’’ ‘‘9 months or less,’’ ‘‘6 monthsor less,’’ ‘‘days or weeks,’’ ‘‘shortly,’’ and ‘‘withina foreseeable future’’ to ‘‘unfavorable progno-sis.’’ The U.S. Federal Code alone providedfour different definitions of terminally ill.

Concepts and Definitions for Terminal CareTerminal care was defined in two articles

(Table 1). In the study by McCusker,7 theycited the three criteria for a terminal diagno-sis, including 1) firm evidence of progressivedisease, 2) termination of active cancer thera-pies, and 3) ‘‘death is not far off.’’ However,‘‘not far off’’ was not elaborated further.Others defined the terminal care period asranging from three months to six months to12 months.1,7 Terminal care was not definedin dictionaries, textbooks, or Web sites.

Concepts and Definitions for Transition ofCare

We identified four articles aiming to concep-tualize transition of care. Three discussedtransition in the context of end-of-life care8e10

Fig. 2. A conceptual framework toward understanding ‘‘acticare,’’ and ‘‘transition of care.’’ Based on our systematic revieare synonymous and apply to patients with progressive diseadying is related to patients with days of survival, and transitilevel of care, and goals of care.

and one focused on transition from adolescentto adult care11 (Table 1). All three studieson end-of-life transitions addressed three as-pects of transition: 1) place of care (e.g., hos-pital to home and vice versa), 2) level of careprofessions providing the care (e.g., oncolo-gists to palliative care teams), and 3) goalsof care (e.g., curative to palliative treatmentsand no further active treatments). The pediat-ric study also discussed the first two aspects.We did not identify any definitions from dic-

tionaries or textbooks for transition of care(Tables 2 and 3). The NCI Web site definitionof transitional care coincides with the three as-pects of transition of care discussed previously(Table 4).

DiscussionThis systematic review revealed a paucity of

references aimed at conceptualizing or de-fining actively dying, end of life, terminallyill, terminal care, and transition of care. Theseterms have previously been identified to becommonly used in both clinical and researchsettings.1 Among the available definitions, weidentified a number of unifying themes. Thefirst four terms involved diagnosis of pro-gressive irreversible disease with a limitedprognosis, although there was no consensuson the exact time frame. Transition of carewas defined as evolving place, level, andgoals of care. Based on our findings, we devel-oped a preliminary conceptual framework(Fig. 2) to help build standardized consensualdefinitions.

vely dying,’’ ‘‘end of life,’’ ‘‘terminally ill,’’ ‘‘terminalw, end of life, terminally ill, and terminal care periodse with months or less of expected survival. Activelyon of care is related to changes in the place of care,

Vol. 47 No. 1 January 2014 87Definitions for Palliative Care Terms

The National Institutes of Health (NIH)State-of-the-Science Conference Statement onImproving End-of-Life Care states that ‘‘therehas been a lack of definitional clarify relatedto several concepts and terms,’’ which in-cluded end of life and transition of care.12

This lack of clear definitions for these termsrepresents a barrier to research on care. In-deed, terms such as end of life were found inone-third of the palliative cancer care litera-ture and ranged from ‘‘end-of-life discussions’’to ‘‘end-of-life care.’’1 The ambiguity with thisterm is illustrated by two research publicationswith end of life in their titles. One of these ar-ticles discussed end of life in terms of years,13

whereas the other implied days of survival.14

Interestingly, we also found that the U.S. Fed-eral Code provided four different survival du-rations (less than 24 months, 12 months,nine months, and six months) for the term ter-minally ill in four different sections. Becausethe duration of expected survival is an impor-tant determinant of goals of care and treat-ment decisions,15e17 it is important tostandardize the use of these terms in the liter-ature. This study represents our attempt tobring some clarity to a confusing area.

Actively dying has not been well defined.One definition described it in terms of thelast hours or days of life, and the other dis-cussed the presence of unique signs and symp-toms preceding death. There is a paucity ofstudies on the signs of impending death.18 Fur-ther studies are needed to examine specificsigns that may signal that the patient is activelydying and to allow clinicians to educate familymembers and make appropriate recommenda-tions toward maximizing comfort and mini-mizing aggressive end-of-life measures.

Based on our literature review, the termsend of life, terminally ill, and terminal careshare similar meaning: progressive life-limiting disease with a prognosis of monthsor less. How the terms differ is in their applica-tion: end of life is used to define a particulartime frame, terminally ill is used to describea patient’s condition, and terminal care isused to characterize care delivered for termi-nally ill patients. The NIH State-of-the-Science Conference Statement added twoother dimensions to the definition for end oflife, namely impaired function and increasedsymptom burden requiring higher levels of

care, both of which are related to a shortenedsurvival and progressive disease.12

Part of the challenge with these prognosticterms is that both our science and languageof prognostication are imprecise. Becausedeath is often mediated by catastrophic eventssuch as myocardial infarction and pneumonia,it is difficult to know exactly how long a patientis going to live. Thus, general time frames suchas ‘‘months,’’ ‘‘weeks,’’ or ‘‘days’’ are recom-mended when communicating with patientsabout their prognosis.19,20 In this study, wealso propose that end of life, terminally ill,and terminal care use be limited to patientswith months or less of expected survival.Fig. 2 presents a conceptual framework detail-ing the meaning of these terms.

Our study revealed that transition of carehas three key dimensions: place of care, levelof care, and goals of care. The concept of goalsof care was recently reviewed by Kaldjianet al.21 and classified under six major domains:cure, prolonging survival, optimizing function,improving comfort, achieving life goals, andsupporting family/caregiver. Although transi-tion of care occurs throughout one’s life, tran-sitions are particularly common during theend-of-life period, such as being hospitalizedand subsequently discharged, meeting the pal-liative care team, stopping life-prolongingtherapies, enrolling in home hospice, transfer-ring to inpatient hospice, and focusing oncomfort care. Schofield et al.22 conducted a sys-tematic review discussing the communicationprocess of transition from curative cancertreatment to palliative care.

Although we conducted an exhaustivesearch of the literature, it is important to rec-ognize that, in this systematic review, we onlyexamined articles that aimed to conceptualizeor define the terms rather than all definitionsmentioned in all articles. We previously ex-tracted all available definitions from a sampleof the palliative oncology literature over a 12months period.1 Furthermore, our searchstrategy was specific and did not include otherdistinct but related terms. For example, ‘‘immi-nent death’’ was not included for actively dy-ing, which may have limited our ability touncover relevant resources for definitionaldata. We also did not review the gray literature,abstracts, or statutory laws from countriesother than the U.S. and limited our search to

88 Vol. 47 No. 1 January 2014Hui et al.

the English language only. Further studies areneeded to examine the use of these terms inother languages.

The conceptual framework developed heremay help to put the five terms in contextwith each other, with the aim of an increasedunderstanding. Our findings highlight the ur-gent need to develop consensus definitionsfor these terms to facilitate daily communica-tions related to clinical care, scientific re-search, education, and public policy. Thismay be achieved through Delphi processes orexpert workgroups. Surveys of patients, clini-cians, and researchers about their definitionsfor these terms also may provide additional in-sights. Until these terms are clearly definedand universally understood, it is important toprovide a definition for these terms wheneverthey are used.

Disclosures and AcknowledgmentsDr. E. B. is supported in part by National In-

stitutes of Health grants RO1NR010162-01A1,RO1CA122292-01, and RO1CA124481-01. Dr.D. H. is supported in part by an institutionalstartup grant (#18075582). This study alsowas supported by the M. D. Anderson CancerCenter Support Grant (CA 016672). The fund-ing sources were not involved in the conductof the study or development of the submission.The authors declare no conflicts of interest.

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