a systematic review of prognostic end of life

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Review Article

A Systematic Review of Prognostic/End-

of-Life Communication with Adults in the Advanced Stages of a Life-Limiting Illness:Patient/Caregiver Preferences for theContent, Style, and Timing of InformationSharon M. Parker, RN, BHSc, MPH, Josephine M. Clayton, MBBS, FRACP,

FAChPM, PhD, Karen Hancock, BSCPsych(Hons), PhD, Sharon Walder, BAppSc,

Phyllis N. Butow, MClin Psych, MPH, PhD, Sue Carrick, RN, RM, MHS,

David Currow, MPH, FRACP, MD, Davina Ghersi, BAppSc, MPH,

Paul Glare, MBBS, FRACP, MA Appl Eth (Healthcare), Rebecca Hagerty, BA, G Dip

Sc (Psych), PhD, and Martin H.N. Tattersall, MB BChir, MSc, FRACP, MDNational Health and Medical Research Council Clinical Trials Centre (S.M.P., S.W., S.C., D.G.),

Medical Psychology Research Unit (J.M.C., K.H., P.N.B., R.H., M.H.N.T.), School of Psychology

(P.N.B.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New

South Wales; Department of Palliative Care (J.M.C., R.H.), Royal North Shore Hospital, St. Leonards,

New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South

Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred

Hospital, Camperdown, New South Wales, Australia

Abstract Evidence-based recommendations concerning how to discuss dying, life expectancy, and

likely future symptoms with patients with a limited life expectancy and their families are lacking. The aim of this systematic review was to review studies regarding prognostic/end- of-life communication with adult patients in the advanced stages of a life-limiting illness and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases up to November 2004. One hundred twenty-three studies met the criteria for the full review, and 46 articles reported on patient/caregiver

preferences for content, style, and timing of information. The majority of the research was descriptive. Although there were individual differences, patients/caregivers in general had high levels of information need at all stages of the disease process regarding the illness itself, likely future symptoms and their management, and life expectancy and information

This project was supported by a Strategic ResearchGrant from the Australian National Health andMedical Research Council. Dr. Clayton is supportedby a Cancer Institute NSW Clinical ResearchFellowship.

This paper contains results from a larger review,‘‘Communicating Prognosis and Issues SurroundingEnd-of-Life in Adults in the Advanced Stagesof a Life-Limiting Illness: A Systematic Review.’’

November 2006. Available at http://www.ctc.usyd.edu.au/research/publications/articles_2006.htm.

Address reprintrequests to: Josephine M. Clayton, MBBS,University of Sydney, Department of Medicine, Med-ical Psychology Research Unit, Blackburn BuildingD06,Camperdown, New South Wales 2006, Australia.E-mail: [email protected]

Accepted for publication: September 26, 2006.

Ó 2007 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/07/$esee front matterdoi:10.1016/j.jpainsymman.2006.09.035

Vol. 34 No. 1 July 2007 Journal of Pain and Symptom Management 81

http://www.ctc.usyd.edu.au/research/publications/articles_2006.htm


mailto:[email protected]

mailto:[email protected]





about clinical treatment options. Patient and caregiver information needs showed a tendency to diverge as the illness progressed, with caregivers needing more and patients wanting less information. Patients and caregivers preferred a trusted health professional who showed empathy and honesty, encouraged questions, and clarified each individual’s information needs and level of understanding. In general, most patients/caregivers

wanted at least some discussion of these topics at the time of diagnosis of an advanced, progressive, life-limiting illness, or shortly after. However, they wanted to negotiate the content and extent of this information. J Pain Symptom Manage 2007;34:81e93.Ó 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key Words Systematic review, patient preferences, caregiver preferences, terminally ill, palliative care,communication, prognosis, end-of-life issues, patient-physician relations

Introduction Optimal communication has been identified

by patients and their families as one of themost important aspects of medical care at theend of life (EoL).1,2 However, previous re-search has identified deficiencies in doctor-pa-tient communication regarding prognosis andEoL issues for patients with advanced, progres-sive, life-limiting illnesses.3 Guidelines havebeen prepared f or breaking bad news of a can-

cer diagnosis,4,5 for discussing prognosis withpatients with early stage cancer,6 and for women with advanced breast cancer.7,8 How-ever, the relevance of these guidelines to otherpatients with cancer with a limited life expec-tancy or patients with other advanced life-limit-ing illnesses is unknown. Evidence-basedrecommendations concerning how to discussdying, life expectancy, or likely future symp-toms with patients with a limited life expec-tancy and their families are lacking.

The aim of this review was to systematically

review studies focusing on communication of EoL and prognosis with adults, and/or theircaregivers in the advanced stages of a progres-sive, life-limiting illness. In this review, progno-sis includes life expectancy, how the illness may progress, potential future symptoms, and func-tional ability. This paper describes the review methodology and presents the major findingsregarding patient/caregiver preferences forcontent of information, style, and timing of such communication.

Methods Searching

Comprehensive searches of Medline, CI-NAHL, EMBASE, PsycINFO, and the Co-chrane Central Register of Controlled Trials(Central) identified 4,167 abstracts for thefull review, with a further 127 abstracts identi-fied by handsearching. After culling irrelevant papers, full manuscripts for 278 studies wereassessed against the inclusion criteria (Table 1).

Two authors independently assessed studiesfor eligibility, and a third person adjudicated where there were issues of uncertainty or dis-agreement. Studies were initially allocated toone of six focus areas (Table 2), the primary focus encompassing those studies deemed di-rectly relevant to the review question. Afterround 1, 151 papers were still included (seeFig. 1). The five secondary areas were subse-quently reclassified in a second round of eligi-bility, in which a further 28 studies wereexcluded and those deemed to add signifi-

cantly to the review retained.Traditional systematic reviews of randomizedcontrolled trials comprise a process where qual-ity is formally assessed and weighted. Althoughthere is an increasing belief that data from qual-itative studies add a rich understanding of thephenomena being examined,9,10 there is noconsensus on the best way to judge the quality of qualitative research, or indeed whether todo so is appropriate.10,11 A simple quality assess-ment tool, adapted from published examples,

82 Vol. 34 No. 1 July 2007 Parker et al.



Table 1Inclusion Criteria

1. Types of studies Randomized and nonrandomized controlled trials, cohort studies, case-control studies,and before and after studies (studies that compare preintervention andpostintervention assessments). These includea) questionnaire/survey-based studies

b) ethnographic studiesc) consultation audit studiesd) prospective cohort studiese) randomized controlled trials of communication interventions

2. Types of participants Eligibility criteria for studies where patients form the study groupa) Patients in specialist palliative care or hospice settings (inpatient or community)

OR patients in any care setting with a diagnosis of advanced life-limiting illnessbeing treated with palliative intent and with a life expectancy of less than two years (excluding patients with chronic diseases where the illness trajectory isindeterminable, such as dementia or multiple sclerosis).

b) Where samples are mixed (i.e., acute and advanced disease), studies are includedif more than 50% of patients have an advanced life-limiting illness or where thestudy group are palliative or where the results for such patients are providedseparately. Studies are not included where it is not possible to determine what percentage of the study group is being treated with palliative intent and has a lifeexpectancy of <2 years.

c) The patients are not being treated with curative intent.d) The patients are NOT being cared for in an Intensive Care Unit (given that

these are likely to be acute life-threatening situations).e) The patients are adult (defined as 18 years or over).

Eligibility criteria for studies where carers form the study groupa) The situation of care is restricted to the advanced stages of a life-limiting

disease, either inpatient or in the community. This includes studies where thecaregiver was asked to recall information about the communication of prognosisor end of life (EoL) retrospectively.

Eligibility criteria for studies where health professionals (HPs) form the study groupa) All disciplines of HPs are included as long as they are fully qualified.

3. Types of communication This review covers any communication about prognosis and dying (EoL).Communication includes one or more of the following elements:

a) who communicates the information;b) how the information is communicated, e.g., use of words or numbers, use of

language (giving hope or being accurate);c) what information should be communicated (quantity and quality of information,

uncertainty) including how to determine what the patient wants to know.Communication can occur in acute care settings, palliative care units, in outpatient clinics (including general medical practitioners’ or specialists’ rooms), or in thepatient’s home. The discussion may also involve decisions about supportive care. Thereview was not limited to people who have ceased active treatment. Studies discussingcommencement or discontinuation of palliative treatments, directed at the disease, areincluded. Studies investigating issues around the decision to withdraw life support anddoctor-assisted suicide are not included.

Studies which discuss advance directives and cardiopulmonary resuscitation(CPR/DNR) discussions are included if this is being discussed within the context of aprogressive and incurable illness and the patient has limited life expectancy.

Interventions that may enhance discussion of prognosis are included (e.g., questionprompt lists and communication skills training for HP).

4. General study eligibility criteria

a) Only those articles published in 1985 and after are included (a period of 20 years is deemed appropriate for inclusion in this review based on changes in patient and community expectations and HP attitudes).

b) The aims/objectives of the study are clearly stated or easily inferred from the text.

c) Articles from non-English-speaking (NES) countries are included and allocated onthe basis of their major focus. These are included in focus 1 if directly relevant todiscussion of prognosis and EoL issue.

d) Articles on disclosure of diagnosis are included where the disclosure is related to atransition from active treatment to palliation.

e) Articles dealing with hope are included in focus 1 if they relate to the relationship of hope and communication.

f) The paper is a reported study or systematic review (excluded are review ordiscussion papers).

Vol. 34 No. 1 July 2007 83 Systematic Review of Prognostic/End-of-Life Communication



was used to appraise each study.10e13 This tool was not rigidly used to assign quality ratings tostudies, but rather to alert us to studies with ap-

parent methodological or reporting flaws. Twoauthors reviewed each study for consensus ontheir value and a further three studies were ex-cluded as a result.

Data were extracted by two authors, with fulldata extraction for 10% checked by a second au-thorand anydiscrepancies resolvedby discussion.

Results One hundred twenty-three articles (report-

ing on 99 studies, as some studies had several

articles reporting on different aspects of thefindings) were included in the full review (Fig. 1). A report of the full review is availableonline.14 Seventy-nine (of 99) studies werequantitative, 41 qualitative, and five used a mix-ture of both methodologies. Studies were pre-dominantly observational (97), using a variety of methodologies (Table 3).

Study Characteristics twb .25wThe study populations ranged in

size from four to 9,105 participants (median

113; mode 30). Patients formed the study group in 46 studies (37%), patients and care-givers in six studies (5%), caregivers only in11 studies (9%), health professionals (HPs)in 31 studies (25%), and mixed (usually pa-tients, caregivers, and HPs) in 27 studies(22%). Eighty-seven studies (71%) were con-ducted in English-speaking countries, with allarticles being English language papers.

One hundred fourteen articles (93%) weregraded as Level IVa evidence based using the

evidence rating system of the National Healthand Medical Research Council’s Standing Com-mittee on Quality of Care and Health Out-comes.15 Level IVa refers to evidence that isobtained from descriptive studies of provider

practices, patient behaviors, knowledge, atti-tudes, or a systematic review of the descriptivestudies.

Forty-six studies (23 qualitative, 22 quantita-tive, one both qualitative and quantitative) re-ported patient and/or caregiver preferencesfor the content, style, and timing of prognos-tic/EoL information. A table summarizing thesestudies can be found in a report of the full review.14 Forty-four of these studies w ere rated asLevel IVa evidence and one study 16 as Level II(evidence obtained from at least one properly designed, randomized controlled trial).

Wherever possible, the findings are pre-sented according to the country of origin of the included studies to highlight cultural dif-ferences. Two groups were used: a) English-speaking/Northern European countries, andb) other countries. The latter included Asian,Mediterranean, and Middle Eastern countries(in this review: Japan, Spain, Italy, Israel,Greece, Korea, Taiwan, India, UAE, and HongKong). The English-speaking/Northern Euro-pean group in this review included the follow-ing countries: USA, UK, Australia, Canada,

Sweden, The Netherlands, and Germany. Thefirst group consisted of countries where thepopulat ion was primarily of Anglo-Saxon back-ground.17 A systematic review of prognosticcommunication in cancer care has suggesteddifferences in attitudes toward truth tellingand patient autonomy between people of Anglo-Saxon backgrounds and those fromother cultural backgrounds.18

Patient/Caregiver General Information Needs About Prognosis and EoL Issues

Twenty-six studies reported the informationneeds of patients/caregivers. Six of these col-lected data from both patients and caregivers without differentiating response between thetwo, 14 from patients only, and six from care-givers only.

Patient Information Needs

English-speaking/Northern European Countries .Overall, most studies from English-speaking/

Table 2 Focus Areas for Round One Eligibility

Focus AreaNumber inEach Focus

1. Directly relevant to discussion of prognosis

and EoL issues in a palliative care setting

91

2. Advanced directives 53. Discussing resuscitation status in

patients with a serious illness but not inpalliative care

8

4. Main focus is on communication skills ingeneral

5

5. Main focus is on disclosure of diagnosis 236. Other 23

Total 155




4,167 abstracts retrieved by searches

4016 abstracts excluded due to:

Not a study (117)

Wrong patient population (108)

Wrong issue/topic (3791)

278 full articles for consideration

First round exclusions (123):- Wrong patient group (62)- Wrong HP (2)- Not communication of prognosisor EoL issues (42)- Study aims unclear (3)- Published prior to 1985 (5)

- Not a study (9)

151 full articles to beretrieved plus 127 fullarticles retrieved fromhandsearching

Second round full article exclusions (28)- There is not a clear take away messagewhich meaningfully contributes tocommunication of prognosis and EoL (10)

- Primary focus is related to disclosure of diagnosis /breaking bad news and notprognosis (15)Methodologically weak (3)

127 includedarticles

123 included articles for 99studies included in full review

41 Quantitative studies77 Qualitative studies

5 Quantitative and Qualitative

47 articles relevant to preferencesfor content, style and timing,

22 Quantitative24 Qualitative

1 Qualitative and Quantitative

4 duplicates

Fig. 1. QUORUM flow chart.




Northern European studies reported a prefer-ence by patients for high levels of informa-tion.19e25 In the UK study by Fallowfieldet al.,24 84.9% of the 1,046 patients with cancerbeing treated with palliative intent wanted asmuch information as possible, w hether it be

good or bad news. A US study 19

found that 93% of patients with cancer and their care-givers rated information about prognosis as ex-tremely important.

Factors found to be associated with wantinga high level information include being youn-ger,24 being more educated,26 believing onehas less time to live,27 and having strong faith(in respect to wanting to discuss death).28 Inaddition, Mouton et al.26 found that HIV pa-tients experiencing daily symptoms wantedmore information than those having less fre-quent symptoms.

Patients’ apprehension about their situationpossibly impacts on the level of informationthey feel they need or want. Only 41.1% of ter-minally ill patients wanted more informationin the US study by Kutner et al.7 Participantshighlighted the conflict between wanting toknow and fearing bad news. A UK study by Jones et al.29 found that while half of pulmo-nary disease patients wanted more informa-tion, the other half did not, as they felt suchinformation would only increase their fear. Pa-tient information needs may change as the ill-

ness progresses. Kirk et al.30

found that patients tended to want less detailed informa-tion as the cancer illness progressed. Likewise,Meredith et al.31 found that patients with can-cer receiving palliative treatment desired lessinformation than those being treated with cu-rative intent.

Other Countries . A Greek study 32 found that only 50% of 100 patients with cancer said

they had a high need for prognostic informa-tion, whereas 31% said they had no need at all. A Spanish study 33 of 97 patients with can-cer found that of the 66 patients who saidthey were uninformed, 42% wanted little or

nothing in the way of information, 24%‘‘some,’’ 21% ‘‘quite a bit,’’ and 12% ‘‘a lot’’of information. In contrast, a study by Kaiet al.34 of 201 Japanese inpatients with advanced, life-limiting illnesses, found that 80% wanted candid information about the diagno-sis and prognosis, regardless of the nature of the disease. Centeno-Cortes et al.’s findings33

concurred with the UK findings of Fallowfieldet al.,24 where younger patients wanted moreinformation than older patients, but in theItalian study by Caruso et al.,35 roughly thesame percentage (34.1% of adult and 30.8%of elderly) said they required clear informa-tion during all stages of the disease.

Caregiver Information Needs

English-Speaking/Northern European Studies .There is some variation in the level of informa-tion required and/or the type of informationrequired between patients and caregivers.The US study by Steinhauser et al.28 reportedthat doctors, other care providers, and be-reaved family members were significantly

more likely than patients to agree that talkingabout death was important. Clayton et al.36

also found in this Australian study that care-givers wanted more detailed informationabout the dying process than patients. In thestudy by Kirk et al.,30 patients and familieshad a similar need for information, but thischanged somewhat as the patient’s illness pro-gressed, with caregivers wanting more informa-tion and patients less.

Caregivers appreciated knowing as much aspossible and functioned better with a high

level of know ledge regarding the patient’sprognosis,20,23 but as with patients, caregiversfelt it important to understand the particularneeds of each individual and to recognizethat information needs would change many times. A retrospective study wit h 2,074 care-givers by Addington Hall et al.,37 conductedin the UK, reported that of the caregivers who said they had been told some informa-tion, 12% wanted more explanation, and 8%had not received the information as soon as

Table 3 Methodologies Used

Method Number of Studies

Interviews 52 (42%)Questionnaire/survey 32 (26%)

Mixed methods 25 (20%)Focus groups only 4 (3%)Ethnographic/observation 4 (3%)Medical record review only 2 (2%)Course/training evaluation 2 (2%)Review of doctor/patient interaction 2 (2%)




they had wanted. In another UK study of care-givers of 237 stroke patients,38 approximately 63% of caregivers felt they needed more infor-mation and had subsequently approached anHP. In the Swedish study by Friedrichsen,39

all caregivers defended their right to enoughinformation to enable a full understanding of the situation, to mentally prepare, to organizetheir lives, and be a source of information toothers. In the role of patient advocate, they sometimes needed to receive this informationseveral times before they were satisfied.

Other Countries . The only non-English-speak-ing (NES)/non-Northern European studieson this issue were conducted in Japan. A study of 318 bereaved Japanese family members40

found that 14% of participants did not want any more information, and 6.6% did not an-swer t his question. Another Japanese study by Fukui41 of 66 caregivers noted that youngerfamily caregivers, people caring for relativesat home, caregivers on their own, and those whose relative had a shorter time since diagno-sis had higher information needs. Fukui’s find-ings are consistent with English-speaking/Northern European studies.

Specific Content of the Discussion Twenty-eight studies covered patient/care-

giver preferences for the content of the discus-sion. Of these, nine (39%) represented the views of patients and eight (35%) representedthe views of both patients and their caregivers.Three studies represented the views of thecaregiver only, and the remaining studies provided responses from a range of participants,including HPs. All but five of these studies were conducted in either English-speaking orNorthern European countries.

English-Speaking/Northern European Studies . A

number studies emphasized patients’/care-givers’ need for information about the illness,including the et iology and likely trajec-tory.7,20,23,24,38,42,43 Specific areas of informa-tion highlighted were those that wouldinform options for treatment and assist the pa-tient to make decisions about theircare.25,37,42,44e46 Kutner et al.7 found that pal-liative care patients wanted information onnew treatments, including what the treatmentsmight accomplish. Prognostic information,

including survival and life expectancy, was a pri-ority for patients and caregivers in studies fromEnglish-speaking/Northern European coun-tries.7,25,30,37,38,47 In an Australian study,48

both patients with cancer and their caregivers

on the whole preferred a nonspecific survivaltime frame and a general indication regarding what to expect. An Australian survey 45 of 126patients with metastatic cancer indicated a pref-erence for survival information that providedmore precise prognostic estimates, includingthe average survival rate.

Ten studies reported on the importance of explaining to patients and caregivers about symptoms that may occur in t he future andhow these could be managed,7,19,48 particu-larly pain control7,49 and uncommon symp-toms.45 Several studies found that patients/caregivers preferred discussion about the pos-sibility of side effects or complications of treat-ments,7,24,25,31,36,45 with information onnatural therapies and other drugs for side ef-fects being raised in the Australian study by Wilkes et al.50 Caregivers of oncology patientsreported that information on medication washelpful,38 but in practice it was sometimesconflicting.42

At all stages of the disease process, but par-ticularly as the illness progressed, informationon how to care for the patient became a prior-

ity f or caregivers,36 including what to ex-pect,1,42 physical care,50 reduced intake of food and fluid,7,46 general coping,38,49 psycho-logical care,41 information about equipment,and other resources such as respite and hos-pice care,49,51 how to deal wit h an emer-gency,32 and where to get help.50

General information relating to the processof death and dying was very important forboth patients and caregivers,36,43 highlightingthe need for particular discussion around thepatient’s fear of dying,46 spiritual issues,7 a de-

scription of what is likely to happen in the last days and during the unconscious period, likely place of deat h, and arrangements to be madeafter death.46

Other C ountries . A Spanish study b y Fainsingeret al.52 and two Japanese studies34,41 empha-sized a similar need for information about the illness as the English-speaking/NorthernEuropean studies. An Italian study by Carusoet al.35 found that patients/caregivers had




a desire for clear information at all stages cov-ering a wide range of prognostic issues, whereas a Greek study by Iconomou et al.32

found that patients with advanced cancer wanted information about cancer treatments.

Similar to English-speaking/Northern Euro-pean countries, Iconomou et al.32 and Fukui41

found prognostic information on survival andlife expectancy to be important. There wereno studies from NES or non-European coun-tries regarding patient/caregiver preferencesfor the content of information about futuresymptoms or dying.

Style of the Discussion Twenty-five studies covered issues of style. Of

these, 12 (48%) represented the views of pa-tients; six (24%) represented the views of pa-tients, caregivers, and HPs; four (16%) of caregivers; three (12%) of patients and care-givers; and one (4%) of patients and HPs. Allstudies reporting on style were from English-speaking/Northern European countries.

The importance of communication style wasemphasized as frequently as was content, withone study suggesting that style was even moreimportant to patients/caregivers than the ac-tual content of the discussion.48 The patientsin the US study of Coyle et al.53 felt their well being was affected by the manner in which

prognostic information was communicated.This study suggested that the same message,given differently by two people, could vary tothe extent that it would be acceptable in onecase and not the other.

Honesty was an integral component of theinteraction.2,7,22,30,42,48,54 Howe ver, a balancebetween realism and hope48,55 was also pre-ferred. In the US study by Wenrich et al.2

and the Canadian study by Kirk et al.,30 pa-tients and caregivers regarded honesty asa straightforward or direct approach. The

need to temper honesty with understanding,sensit ivity, and empathy was empha-sized.2,30,42,45,55 In st udies from the UnitedStates29 and Australia,48 accurate information was preferred, as long as it was not deliveredbluntly or with too much hard factual or de-tailed information. In the American study by Kutner et al.,7 all of the 56 patients wantedthe doctor to be honest, yet 91% wanted theapproach to be optimistic. Regardless of thelevel of optimism able to be provided,

information conveyed in a compassionateand empathetic manner, providing some reas-surance that the patient will not suffer, wasfavored.20,30

Twenty percent of 139 patients in the Ger-

man study by Petrasch et al. feared the conver-sation with their doctor.54 On the other hand, Johnston and Abraham, and Steinhauser et al.found that communication about prognosisenabled patients to make forward plans in a lib-erating and positive way.28,47

Patient and caregiver participants in somestudies emphasized the need for preparationfor the discussion, such as negotiating whoshould be present and who should deliverthe information,56 ensuring enough time is al-located,2,56 that an appropriate time and placeis chosen,2 and adequate time is provided toask and encourage questions.2,30,56 Patientsstressed the need to be acknowledged as anindividual.

Patients and caregivers emphasized the im-portance of the relationship between the pa-tient and the HP involved in the discussion.56

In a study of 22 patients from the UnitedStates, when resuscitation was the major topic,participants wanted this type of informationfrom someone with w hom they had an estab-lished relationship.51 Patients and caregivers wanted the HP to be an ‘‘expert’’21,30 who

would provide them with empathy, consistency,and a sense that they would stay the course andnot abandon them as the illness pro-gressed.30,51 Negative interactions with thedoctor included those where he/she was tenta-tive,57 ‘‘too speedy,’’42 or perceived as ‘‘avoid-ing’’ or ‘‘hand washing’’ when prognosis waspoor, as if they were no longer interested orhad given up.2,42 Patients appreciated the doc-tor personally telling them their results, exam-ining scans and test results in their presence,and emphasizing w hat can be done as opposed

to what cannot.55

Patients in one Australiansurvey were not in favor of being told theirprognosis with another medical personpresent.55

Clarifying the level of understanding andthe extent of information required by patientsand caregivers, and tailoring that informationaccording to this assessment, was seen as para-mount.2,30,55,56,58 Likewise, the importance of exploring patients’ goals and expectations was emphasized.44 Patients and caregivers




both perceived this to be an ongoing process where the HP should continually check the in-dividual’s understanding and goals, particu-larly as the situation may change during thecourse of the illness.20,44,55 Clayton et al.36

raised the value of having both separate and joint conversations to allow the HP to exploreindividual information needs without the bar-riers of patient/caregiver protectiveness. This Australian study also raised the need to first obtain the patient’s permission to have sepa-rate discussions with caregivers, as well as theimportance of providing consistent informa-tion and facilitating openness betweenpatients/their caregivers to allow sharedunderstanding.

Patients/caregivers emphasized the impor-tance of the following HP behaviors duringprognostic/EoL discussions: a willingness toinitiate and engage in conversations about death, specifically an ability to use the words‘‘deat h’’ and ‘‘dying;’’44 employing eye con-tact;59 active listening;2 and strategies to ex-plore emotional reactions48 and provide thepatient with a sense of control.30 Informationgiven in a digestible manner was prefera-ble.30,58 It was important that language was ap-propriat e, included the use of everyday terms,48 and avoided euphemisms44 or jargonthat could easily confuse, overwhelm and

mask the true meaning of the message, partic-ularly when this involved the imminence of death.2,57

Regarding ways of communicating statistics,patients and caregivers in one Australian study preferred words and numbers over the use of descriptive tools such as pie charts and graphs.45

Another Australianstudyof17womenwithmet-astatic cancer60 emphasized the need for doc-tors to assess whether or not a patient iscapable of comprehending statistics and inter-preting these to their own situation before

they are used.

Timing of the Discussion Only five studies addressed patient and care-

giver preferences for the timing of the discus-sion of prognosis and EoL. All but one of these studies was conducted in English-speak-ing/Northern European countries.

Hagerty et al.’s45 study of 126 patients withmetastatic disease reported that 84% wantedto discuss treatment goals and options when

first diagnosed. Fifty-nine percent wanted todiscuss survival, but only one-third wanted todiscuss dying and palliative care at the diagno-sis of metastatic disease.

Clayton et al.,56 in a study of 43 patients and

caregivers, reported that participants mostly said that the doctor or nurse should be guidedby common sense or intuition as to when toraise prognostic discussions. However, provided they were given the option not to heartheir prognosis and the topic was broachedin a sensitive manner, most patient and care-giver participants felt it appropriate and im-portant for the doctor or nurse to raise thisearly on because they may find it difficult toraise it themselves.

A study of 72 patients and caregivers by Kirket al.30 indicated that the timing of disclosureof prognosis was important. Most patientssaid they had requested this information very shortly after diagnosis; however, some foundthe delivery of this information distressing, be-cause it had been imparted too soon, or whenthey had not asked for it. In the study by Tenoet al.,16 information pertaining to treatment was also often given at the same time as diag-nosis, and this was also reported to be difficult to comprehend at this time.

The only NES/non-European study was con-ducted in Korea by Yun et al.61 In this study,

380 consecutive consenting patients with advanced cancer and 281 caregivers were sur- veyed regarding attitudes to disclosure of a terminal illness. Patients were more likely than caregivers to say that the patient shouldbe informed of a terminal diagnoses at thetime of diagnosis (96% versus 77%).

Discussion This review has highlighted a number of

areas pertinent to good EoL communicationfrom a patient and caregiver perspective.Many of the issues raised have direct clinicalimplications for HPs.

Prognostic and EoL information was impor-tant for patients/caregivers from several differ-ent countries, including NES countries. Themajority of studies from English-speaking andNorthern European countries found a highlevel of information need among patientsand their caregivers. Overall, the studies from




other countries showed a tendency for most,but not all, patients to prefer less detailed in-formation about prognosis/EoL issues. Otherpredictors for a lower level preference amongpatients for prognostic information included

older age and a shorter life expectancy. How-ever, it is not possible to make assumptionsabout individuals’ information needs basedon their demographic characteristics or cul-tural background. This review indicated that HPs should clarify patient and caregiver infor-mation needs individually and tailor the infor-mation accordingly, recognizing that eachperson’s needs are likely to vary at different time points through the course of an illness.In addition, information may need to be re-peated on different occasions to meet patients’and caregivers’ needs.

Patients and caregivers have indicateda need for clear information at all stages of the disease process about the illness itself,prognosis and symptom management, andfor information that will aid decision makingabout clinical treatment options. Survival in-formation was shown by this review to be im-portant without always needing to be tooexplicit. It was essential, however, that survivalinformation be given in a way that allows thepatient to prepare for death, finalize affairs,and say good-bye to loved ones.

Patient and caregiver information needsshowed a tendency in this review to divergeas the illness progressed, with caregivers need-ing more and patients wanting less informa-tion. Caregivers possibly need more detailedinformation about the dying process to enablethem to prepare mentally and to feel confi-dent that they can provide both the physicalcare and emotional support required by theirloved one.

Patients and caregivers also had specificpreferences for style, with some studies finding

that this was as important, if not more impor-tant, than the content of discussions aroundprognosis and EoL issues. Both patients andcaregivers wanted a trusted HP who providedinformation in small chunks, without jargon.They preferred an HP who showed empathy,care, compassion, and honesty, as long as thehonesty was balanced with sensitivity andhope. They also preferred an HP who encour-aged questions and checked patient/caregiverunderstanding. The issue of whether the

patient should have another HP present when discussing prognosis was not favored inone study, but this conflicts with some existingguidelines for breaking bad news.4,62 Perhaps,as found in many aspects of communication,

preferences for having another person present are individual, and such a preference shouldbe checked with the patient. A certain amount of planning for the discussion may be benefi-cial including negotiating who should be pres-ent during the discussion, who should deliverthe information, and the appropriate setting.

In the few studies regarding patient andcaregiver’ preferences for the timing of prog-nostic information, most preferred to beoffered this information at the time of diagno-sis or at least shortly after. However, they wanted to negotiate the content and extent of this information. Furthermore, consider-ation should be given to ensure that this infor-mation is timely for each individual’s needs.Doctors should possibly raise the issue without forcing the information, leaving this as anoption for a later discussion.

Limitations of the Review This review had some methodological limita-

tions. Formulating a search strategy that wasboth specific and sensitive in retrieving articlesfor this review was challenging due to the

broad scope within the topic area, the specific-ity of the inclusion criteria, and a lack of spe-cific MeSH (Medical Subject Headings) termsfor this topic. Studies relevant to this review were scattered among a number of databases,and managing such a large data set was bothcomplex and time-consuming. Also, the rangeand diversity of the studies identified raiseda number of practical problems for summariz-ing and synthesizing the data. It is also possiblethat there is a publication bias in studies of thispopulation. Although handsearching was per-

formed for this review, it is possible that some papers were missed due to the nonindex-ing of many palliative care journals. Althoughresearch of relevance for palliative care is pub-lished electronically in a range of generalist and specialist journals, many are not indexedin electronic medical databases.63

Evidence from this review has largely beengenerated from a variety of theoretical per-spectives and a number of methodologicalapproaches, and as such, it lacks the




generalizability of a systematic review of highlevel (randomized) evidence. Descriptivedata, however, provide a valuable method forevaluating patient and caregiver preferencesbecause the question is not amenable to a ran-

domized controlled trial. Furthermore, de-scriptive qualitative research is important inincreasing our understanding of the issuesand may, therefore, be considered ‘‘best evidence.’’

In addition, a large proportion of the evi-dence consists of research undertaken withspecific patient groups, and is, therefore, not generalizable to whole populations. We ac-knowledge the limitations of dividing the find-ings into those from studies conducted inEnglish-speaking/Northern European coun-tries versus other countries. The countries within these two groups also have marked cul-tural differences, and there may be many cul-tures within countries. Furthermore, all of the included studies were reported in English,and around 80% were from English-speaking/Northern European countries, so it was not possible to comprehensively investigate cul-tural aspects of patient/caregiver preferences,particularly with regard to the style and timingof information provision.

Conclusions and Suggestions for Future

Research Further research is needed regarding pa-

tient/caregiver preferences for prognostic/EoL communication from NES and non-Northern European countries. Likewise, fur-ther research regarding communication of prognostic and EoL issues is also needed inclinical areas such as cardiac, pulmonary, andother chronic diseases, as currently the re-search on these topics is dominated by studiesof patients with advanced cancer who are fromEnglish-speaking or Northern European

countries.Further research is needed to close thechasm between the rhetoric on the patient and the family being the unit of care, andthe challenges of different information needsat varying times along the disease trajectory.Future research needs to be done on actualiz-ing in practical terms how to deal with the is-sue of patient and caregiver informationneeds diverging as the illness progresses. A par-ticular practical question is how to fulfill the

information needs of caregivers in advancingdisease when the patient has not consentedfor this information. The findings in this review could be used to inform specific guide-lines and communication skills training for

HPs regarding communication of these sensi-tive and difficult topics.

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