survey of uk hospices and palliative care adult bereavement services

8/10/2019 Survey of UK Hospices and Palliative Care Adult Bereavement Services

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David Field, David Reid, Sheila Payne, Marilyn Relf

AbstractMethod Postal survey of UK hospices and specialist palliativecare services providing adult bereavement support.

Analysis Descriptive statistics and content analysis of free textreplies.

Results Three hundred services were identified, with 248 validrespons es (83 ). Of these , 198(80 ) were in England and180 (73 ) were associated w ith inpatient units. Most had been inexiste nce for at least 10 years . Paid staff were use d by219 services (88 ) and vo lunteers were involved in 168 services(68 ). A small minority did not provide supervision for theirbereavement staff. A quarter of services had insufficient staff. Themost common activities were individual support, telephonesupport, written information, memorialization events and groupsupport. Ninety five services (43 ) formally assessed the need forindividual support. One hundred and fourteen services (51 ) hadno formal mechanisms for bereaved people to provide feedbackabout such support. Formal audit and evaiuation of bereavementservices was uncommon.

Conclusions The main elements of bereavement support can beidentified but their combination varies. Assessment of people forindividual support varies and the small size of many services mayinhibit the effective delivery of support. Audit and evaluation ofbereavement support may need to be developed.

David Field is VisitingProfessor, Department ofHealth Sciences, Universityof Leicester, 22-28 PrincessRoad West, Leicester LEI6TP, UK, David Reid isResearch Fellow and SheilaPayne is Professor ofPalliative Care, Palliativeand End-of-Life CareResearch Group, Universi tyof Sheffield, BartolomeHous e, Winter Street ,Sheffield S3 7ND , UK andMarilyn Relf is Head ofEducation, Sir MichaelSobell House, Churchil lHospital , Oxford OX3 7LJ,U K

Correspondence to.Sh il P

Until recently UK health serviceshave contributed little to bereave-ment support, with the exception of

spiritual support from hospital chaplainsat the time of death and, in a minority ofcases, psychiatric treatment for those withcomplicated grief reactions (Payne, 2004).In the community, bereavement supporthas largely been delivered through reli-gious and other self-help networks and byvoluntary organizations such as CruseBereavement Care (a UK charity specializ-ing in bereavement support). The modernhospice movement has recognized thecontinuing needs of the bereaved relativesand lay carers of their patients, the major-ity of whom are in the middle and lateryears of life and most hospices regard the

Most bereavement services are based onthe assumption that loss through deathchallenges coping abilities and that sup-portive interventions may facilitate post-

death adaptation, reduce complicated griefreactions and promote wellbeing.In the UK, the National Insititute for

Clinical Excellence (NICE) has recom-mended that a three-tier m odel of bereave-ment support be implemented for allfamilies and carers of cancer patients inwhich all health-care providers shouldprovide information about local servicesto bereaved people (level 1). Those in needof more comprehensive support should beoffered support from professionals and/orvolunteers (level 2) and a minority of peo-ple at high risk of complicated bereave-ment reactions should be referred tospecialist services (level 3) (NICE, 2004).

Bereavement services have received littleresearch attention and there is a lack ofevidence to underpin practice develop-ments. Bereavement support in hospicesin the UK appear to be largely at NICElevels 1 and 2, and may include activitiessuch as befriending, counselling, informa-tion packs, memorial services and supportgroups (Kissane, 2004). Support may bedelivered in person or by telephone byeither or both paid staff and volunteers(Payne, 2001). Two UK studies have indi-cated the efficacy of using trained volun-teers in support bereaved people (Parkes,1981; Relf, 2000). The diversity of servicemodels and methods of delivery suggestlittle consensus about optimal serviceconfigurations.

A US survey of 260 hospice bereave-ment services in 2002 (Demmer, 2003),repeating an earlier survey conducted in1986 (Lattanzi-Licht, 1989), asked similarquestions to those in the survey reportedhere Almost half of the services had been


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services (133, 54 ) had been operating for10 years or less, with three quarters (190,n/o) opera ting for 15 years or less.Inpatient services were likely to have beenin operation for longer than other services:all but four other services had been in exis-tence for n o long er tha n 15 yea rs. It isworth noting the high number of missingcases (21, 8 ), which suggests that somerespondents found it difficult to date theirbereavement service, possibly because itwas unclear when bereavement supportwas identified as a discrete element ofservice provision.

Personnel involved in deliveringbereavement servicesThe questionnaire was most likely to havebeen completed by someone with 'bereave-me nt' in their job title (70, 28 ), by anurse (66, 27 ) or a social worke r (36,15 ). The most common professional

Organization Number Per cent

19II862064

424 8

8432826

210 0

npatient servicesinpatien t hospice o r palliative care unit only 26 10inpatie nt hospice or palliative care unit and oth er 154 62forms of care

AHinpatient services 18 73

Other servi esHome care onlyDay care onlyDay care and home careHospital support service onlyO th erAll other services

MissingTotal

All percentages are rounded

3 5 - 1

3 0 -

2 5 -

2 0 -

1 5 -

1 0 -

5 -

00-5 >5-IO >IO-I5 >I5-2O >20 -35 >35

Y ( 248)

qualification of respondents was in nursing(88, 35 ). Many respondents reportedhaving a counselling qualification of somedescription (96, 39 ) and just over a quar-ter had a social work qualification (58,23 ). A fifth of the respondents reportedhaving both a counselling qualification andeither a nursing (28) or social work (22)qualification. The majority of respondentswere female (216, 87 ).

All respondents were asked about thenumber of people currently working intheir bereavement service. The greatmajority of services used paid staff (219,88 ) and the rest used volun tary staffonly. It was not possible to establish thenumber of hours paid workers spent onbereavement support activities, althoughsome services indicated that some or all oftheir paid staff worked part time inbereavement support. The paid profes-sionals most frequently identified as beingactively involved in bereavement serviceswere nurses (140, 56 ). Counsellors andsocial workers were equally likely to beactively involved (both 113, 46 ). O theractively involved paid staff were chaplainsor clergy (43, 17 ), doctors (41, 17 ),psychologists (23, 9 ) administrative andclerical staff (12, 5 ), therapists (11 , 4 )and psychiatrists (6, 2 ).

Volunteers were reported to be involvedin over two thirds of the services (168,68 ). The number of voluntary workersranged from one to 62. Two thirds of thevolunteers were under the age of 60 years.Voluntary and paid staff were reported towork together at nearly two thirds of theservices (157, 63 ), paid staff a lone at aquarter of the services (62, 25 ) and vol-unteers alone at 11 services (4 ). Typicallybereavement services employed 2-3 paidstaff assisted by 11-12 voluntary staff.

Table 2 shows that although both paidand voluntary staff were engaged in deliv-ering all elements of bereavement support,volunteers were unlikely to be the soleproviders of these activities. Paid staffwere especially likely to be the soleproviders of written information andadvice, one-to-one and drop-in supportand referral to other agencies. The types ofactivities that were most likely to beprovided by a combination of paid andvoluntary staff were one-to-one support,

memorial, remembrance or anniversaryservices and support groups. The impor-tant contribution made by volunteers to


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Preparation and supervisionThe preparation and supervision of staffproviding bereavement support playsan important role in the quality of thissupport and the wellbeing of the staffproviding it. Among the 168 services with

volunteers, 143 (85 ) provided an induc-tion programme for their new voluntaryworkers, 17 (10 ) did not and the restdid not provide this information. It wasmost common for induction programmesto last 6-15 hou rs (55 services), althoughtheir duration ranged from 1-5 hours(37 services) to over 65 hours (4 services).Services not associated with inpatientunits were less likely to provide informa-tion about the length of their inductionprogrammes.

Most organizations provided trainingfor the people working for their bereave-ment service (172, 69 ), but 16 (39) didno t and another 15 (37) did not answerthis question. Among the services provid-ing such information (120, 48 ), thelength of training programmes for newvolunteers varied from 1-10 hours 23 ser-vices) to over 60 hours (8 services), with amedian duration of 24 hours . Bereavementservices associated with an inpatient unitwere more likely to provide training fortheir staff than other services.

Table 3 shows the availability of supervision for those working in bereavemenservices. Although the majority ofbereavement workers received supervsion from their bereavement service, 12of paid staff and 7 of voluntary staf

were not receiving supervision from theorganization (counsellors, either paid orvoluntary, may receive external supervision). Further, a fifth of the respondentfrom services with paid staff provided noinformation about the supervision ofthese staff.

Bereavement support activitiesRespondents were asked to report whaservices they offered from a range of spec-ified activities {Table 2 ). Nearly all organ

zations (238, 96 ) offered individ uaone-to-one support to bereaved people, intheir own home (207, 83 ), at the organization (199, 80 ) or elsewhere (92, 37 Individual support was more likely to beoffered by inpatient services (169/18094 ) than by othe r services (54/64, 84 Nearly as common as this were some forof telephone support (223, 90 ) and thepractice of referring bereaved people on toother agencies (220, 89 ). For the latterthe agencies most frequently mentionewere Cruse (48, 19 ), counselling servic

Service activity

One-to-one supportTelephone supportReferral on to o ther agenciesMemorial, remembrance or

anniversary serviceWritten information and adviceSupport groupDrop-in support

Number( )

237 (96)223 (90)220 (89)178(72)

181 (73)151 (61)107(43)

Paid staffonly

82 (33)115(46)163(66)51 (21)

138 (56)42(17)63 (25)

Voluntarystaff only

13(5)15(6)4(2)6(2)

5(2)6(2)9(4)

Both paid andvoluntary staff

132(53)95 (38)35(14)

132(53)

43(17)103 (42)36(15)

n = 248, all percentages have been rounded.

- -

ProvidedNot provided

MissingTotal

Paid staff

U Knumber ( )

148* (68)27 (12)

44t(20)219(100)

Inpatientnumber ( )

120 (73)15 (9)

30 (18)165(100)

- - - - - -

Restnumber ( )

28 (55)12 (23)

II (22)51 (100

Voluntary staff

U Knumber ( )

148 (88)II (7)

9 (5)168(100)

Inpatientnumber( )

126 (89)8 (6)

7 (5)141 (100)

' ' -'zeX' ',-

Restnumber ( )

21 (81)3 (12)

2 (8)26(100)

* One of these services could not be identified as either 'inpatient' or 'other'


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Respondents wereasked whethertheir services hadany formalprocesses in placeto encouragehereaved peopleto providefeedback ahouttheir experiencesof one-to-oneservices.

(28, 11 ), GPs (23, 9 ) and socialservices (17, 7 ).

Well over half of the services providedwritten information and advice, memorial,remembrance or anniversary services, andsupport groups. The median number of

activities offered by each service was six,the range being from two to eight activi-ties. Respondents were also asked to rankwhat they felt to be the three most com-monly used aspects of their service.Overall, the most commonly reportedactivity was individual one-to-one support(164, 66 ) followed by telephone support(107, 43 ) and then some form of groupsuppo rt (89, 36 ).

Duration of bereavement support

In 25 services (10 ) support for bereavedpeople was typically offered for the first12 m onth s. It was unus ual for bereavedpeople to have one-off contact with ser-vices (8, 3 ) or to have con tact t hatlasted for only the first 3 or 6 months (14,6 ). Over half (133, 54 ) reported thattheir service users were in contact withthe service for as long as required. Forinpatient services the adults using theirbereavement services were primarilythose who had already been in contactwith the organization.

Other services were less likely to restricttheir bereavement support solely to thosewho had previous contact with their orga-nization. Overall, nearly half of thebereavement services (114, 46 ) restrictedaccess to those with previous contact tothe organization and nearly half (116,47 ) also accepted referrals from else-where. Fifteen services said they receivedexternal referrals only. A fifth of respon-dents (55, 22 ) reported that those usingtheir service could be people who wereneither in contact with inpatient servicesnor referred by other agencies (self-refer-rals (20), 'any bereaved people in the local-ity' (15), unspecified (20)). Fifteenrespondents reported that referrals weresometimes taken from local services forchildren or young people.

One-to-one supportOver 90 (226) of the services providedone-to-one support to bereaved people.Three of these services could not be classi-fied as either 'inpatient' or 'other' servicesso this section is based on 223 services(inpatient 169 other 54) The median

from 1 to 1055. Inpa tient services weremore likely to have provided this informa-tion (140, 83 ) than other services (39,72 ). About half of the 179 services com-pleting the question (96) reported1-100 new referrals for one-to-one sup-

po rt annu ally, with a further fifth (37)reportin g 100-200 new referrals. Half ofother services (26, 48 ) reported1-100 new referrals annually.

Bereaved people were reported to accessone-to-one services in a variety of ways,often through a combination of agencies.Less than a fifth of referrals (42) camefrom within the organization alone and asimilar proportion came through a combi-nation of self-referral and internal referralfrom the organization (40). Most com-

monly, a combination of internal referral,self-referral and referral from externalagencies was reported (98, 44 ). Overall,more than half of the services (126, 56.5 )reported accepting referrals from otheragencies, mainly primary care (86). Othersources of referral were nurses (25), socialcare (22), mental health services (17), hos-pitals (16), agencies w orking with children(16) and chaplains (7). Only three respon-dents reported referrals from other localbereavement services. Self-referral only(11) and referral from external agenciesonly (4) were uncomm on.

Respondents were asked whether theyassessed the needs of bereaved peoplewho were eligible for one-to-one support.Half of those who replied (110) reportedthat only informal assessment was used.This was more common for other services(33, 61 ) than for inpatient services {77,46 ). More than a third of the serviceswere reported to be using a formal riskassessment tool (95, 43 ). Formal assess-ment was more likely to be used by inpa-tient services, often in combination withinformal assessment (81, 48 ), and wasmost frequently undertaken by nurses(41) or by groups of professionals (38). Inthe open-ended question about changesthat w ere planned, 19 respondents indi-cated that their service was either consid-ering or planning to introduce formalrisk assessment.

Respondents were asked whether theirservices had any formal processes in placeto encourage bereaved people to providefeedback about their experiences of one-to- on e services. Just o ver half of these(114 51 ) did not ha e formal feedback


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questionnaires (24), unspecified forms (18)and audit tools (12). Twelve services werereported to be developing formal feedbackprocesses.

Constraints and changes

Most respondents (197, 79 ) providedinformation about the changes they wereplanning or would like to make to theirbereavement services. Many of them alsoindicated the sorts of constraints withinwhich their service operated.

ConstraintsThe most commonly identified constraintwas the need for more paid (44, 18 ) orvoluntary (21, 8 ) staff (three respon-dents wanted both more paid and volun-tary staff). Twenty-one respondents (8 )wanted the appointment of a paid coordi-nator for their bereavement service and23 wanted to recruit other professional,administrative or clerical staff.

ChangesMany respondents reported on changesthat were being planned or considered:

AspectTypical length of operation

StaffingTypical number of paid staffTypical number of volunteersRespondents with a nursingqualification/backgroundRespondents with a social workqualification/backgroundRespondents with a counsellingqualification/backgroundRespondents with 'mixedbackgrounds'

yp s of supportWrit ten information and advicePhone callsHome visitsOne- to-one suppor t at hospiceMem orial servicesGroup supportRange of support activities

Risk assessmentFormal process of assessmentused

ConstraintsInsufficient staff time

Lack of personnelFunding

U K 2 0 0 3

10+ years

2-311-1235

23

39

20

73 of services90 of services83 of services80 of services72 of services63 of services2 -8

43

not askedt

21 of servicesnot asked

U S 2 0 0 2 *

15+ years

1


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su rv ey off UK ho spnce amd specialist palliattive care adniM bereavememil; services

In both the UKand the USinsufficient stafftime and lack ofpersonnel are seenas obstacles todeliveringbereavementsupport.'

worked part time. The most comm on pro-fessional staff background in the US issocial work. In the UK nurses are majorproviders of bereavement support, andmay have the coordinating role in suchservices. In both countries a significantminority of paid staff have more than oneprofessional qualification. In both coun-tries, most services had volunteers work-ing in the bereavement service, usually inconjunction with professional staff.

In both the UK and the US insufficientstaff time and lack of personnel are seen asobstacles to delivering bereavement sup-port. The comments made by respondentsin the current survey suggest that the lackof sufficient paid and voluntary staff mayinhibit the effective delivery of existingservices, the development of other types ofsupport, and the expansion of bereave-ment support to other potential clients. Inparticular, as in the US, several respon-dents felt that their service would beimproved by the appointment of a personto manage and coordina te bereavementsupport activities. Both the small numberof paid staff and the predominance of staffwho were not centrally involved in clinicaldecision making suggests that, despite therhetoric that bereavement support is inte-gral to hospice and specialist palliative careservices, in practice adult bereavemen tsupport remains marginal to the coreactivities of patient care:

'This area of palliative care is the poorsister to clinical medical care and oftenover-stretched with low resource levels'{Respondent 24

A similar situation has been reportedfor US hospice b ereavem ent services(Lattanzi-Licht, 1989).

Types of bereavement supportThe core elements of bereavement sup-port - one-to-one support, phone sup-port, group support, memorial services,and the provision of informational litera-ture - are common in both the UK andUS. However, this survey suggests thatthe ways that they are combined in theUK bereavement support services ishighly variable.

The most commonly provided type ofbereavement support in the UK was indi-vidual one-to-one support, although thequestionnaire design meant that it was notpossible to identify precisely what this

probably reflects cultural preferencesCounselling appeared to be widely usedand a number of services were planning tointroduce counselling into their provisionof adult bereavement support. However,what this counselling involved might varyquite widely as this term has a variety ofmeanings (Payne et al, 1999). The extent towhich befriending is used as a means ofsupporting bereaved people is unclear. Thesecond phase of the study, which is exam-ining different 'packages' of bereavementsupport in five hospices, should providemore information about these and othertypes of support.

Bereavement risk assessmentAccording to Davies and Higginson(2004), 'Assessing the need for supportand counselling after bereavement isregarded as an important part of palliativecare'. Targeting bereavement services bysystematically identifying people at risk ofcomplicated grief is a central theme in theliterature (Relf, 2004). In US hospices for-malized methods of risk assessment areusual (Demmer, 2003) and in Australiarisk assessment is a performance indicatorand guidelines are available (Aranda andMilne, 2000).

In this survey less than half of the orga-nizations (42 ) used some formalmethod of needs assessment to identifythe people most in need of bereavementsupport. This is an increase from an ear-lier survey which found that standardizedassessment to target one-to-one supportwas undertaken in 25 of UK hospices(Payne and Relf, 1994). Associated withthis increase in bereavement needs assess-ment seems be a demand for an effectiverisk assessment tool for use by the ser-vices, although a few respondents indi-cated that they were opposed to the use ofsuch tools. One of the results of theNICE guidance may be to increase thedemand for the effective assessment of thepotential for complicated grief reactions,even though, as Davies and Higginson,(2004) state: 'There is relatively little evi-dence.. . for the predictive power ofassessments, the targeting of individualsor the benefits of individual th erapy'.

Policy and practiceNICE guidanceThis survey suggests that level 1 and 2 ofthe NICE guidance (2004)are widely


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services. Some level 3 suppor t is alsooffered but, given the nature of the ques-tionnaire (which was developed beforethis guidance), the extent and processesof referral to other specialist servicesis unclear.

Staff preparation and supportThe majority of services provide induc-tion, training and supervision for theirpaid and voluntary staff. However, a smallbut significant minority of services do notprovide supervision for their paid bereave-ment workers or for voluntary staff. Thelack of supervision for staff working withpeople who are bereaved is of concern, asadequate supervision is an importantingredient in assuring the quality ofbereavement support services and thewellbeing of the staff providing them. Thismust be addressed. As noted above, anumber of services were planning toimprove the training and supervision oftheir staff.

Evaluation of servicesA third of the UK respondents (82)reported that they either had in place orwere developing formal processes thatallowed bereaved people receiving individ-ual one-to-one support to provide feed-back about their experience of using thisform of bereavement support. Within thedeveloping culture of audit and user-involvement in the UK this may come tobe seen as an area of weakness thatbereavement support services will have toaddress. Despite the charitable status ofmost hospices, they typically receive sub-stantial state funding and thus it is highlylikely that their bereavement support ser-vices w ill need to develop audit and evalu-ation procedures that can demonstrate theeffectiveness of this support.

ConclusionsThis survey has identified a number ofissues that should be addressed at anational level. Although the main ele-ments of adult bereavement support canbe identified, the way these are combined

and delivered varies between organizations. The assessment of bereaved peoplefor individual support also varies. Thesmall size of many services may inhibitthe effective delivery of bereavement sup-port. Finally, procedures to audit and

evaluate the effectiveness of bereavemensupport may need to be developed. Theestablishment in 2005 of a bereavemensupport programme by Help theHospices {Box 1 may provide the forumfor this discussion.

This survey was funded by The Health FoundationThe authors thank all of the respondents for theirparticipation in the survey.

Aranda S, Milne D (2000) Guidelines for theAssessment of Complicated Bereavement Risk inFamily Members of People Receiving PalliativCare.

Centre for

Palliative Care, M elbourneDavies E, Higginson IJ, eds (2004) Better PalliativeCare for Older People. WHO Regional Office foEurope, C openhagen: 29

Demmer C (2003) A national survey of hospicebereavement services. Omega 47: 327-41

Hospice Information (2002) Directory 2002 Hospiceand Palliative Care Services m the UnitedKingdom and the Repuhlic of Ireland. HospiceInformation. St Christopher's Hospice, London

Field D, Reid D, Payne S, Relf M (2003) A NationalPostal Survey of Adult Bereavement Services inHospice and Specialist Palliative Care Servicesthe UK, 2003: Report to the Respondents. Palliaand End-of-Life Care Research Croup, Universiof Sheffield, UK

Kissane D (2004) Bereavement support services. In:Payne S, Seymour J, Ingleton C, eds. Palliative

Care Nursing: Principles and Evidence for PracOpen University Press, Maidenhead: 539-54Lattanzi-Licht ME (1989) Bereavement service

practices and problems . Hosp J 5: 1-28NICE (2004) Guidance on Cancer Services

Improving Supportive and Palliative Care forAdults with Cancer. Th e Manual. NICE, Londo

Parkes CM (1981) Evaluation of a bereavement ser-vice./Pre'y Psychiatry 1: 179-88

Payne S (2001) The role of volunteers in hospicebereavement support in New Zealand. Palliat M e15:107-15

Payne S (2004) O verview of loss and bereavementIn: Payne S, Seymour T Ingleton C, eds. PalliativeCare Nursing: Principles and Evidence for PracOpen University Press, Maidenhead: 435-61

Payne S, Relf M (l994) The assessnient of need forbereavement follow-up in palliative and hospiceC3.re. Palliat Med 8: 197-203Payne S, Horn S, Relf M (1999) Loss andBereavement. Open University Press, Buckingh

Relf M (2000) The effectiveness of volunteer bereavement care: an evaluation of a palliative carbereavement service. Unpublished PhD thesisUniversity of London.

Relf M (2004) Risk assessment and bereavement ser-vices. In: Payne S, Seymour J, Ingleton C, eds.Palliative C are Nursing: Principles and Evidenfor Practice. Open University Press, Maidenhe521-38

Box I. Further information

Further information about

Help the Hospices Bereavement SupportProgramme, funded by HBOS pic, can beobtained from Jennie McDowallT l ( 44) (0)20 7520 8220

Key words Adu lt bereavem ent

Hospice

Evaluation of services


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