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Zaman, S., Ahmed, N., Ur Rashid, M. and Jahan, F. (2017) Palliative care for slum

population: a case from Bangladesh. European Journal of Palliative Care, 24(4), pp. 156-

160.

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| www.ejpc.eu.com European Journal of Palliative Care | 2017; 24(4)156

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SPalliative care for slumpopulations: A case from BangladeshS as is the case in other developing countries,

palliative care remains a major unmet need in

Bangladesh. Shahaduz Zaman, Nezamuddin Ahmed,

Mamun Ur Rashid and Ferdous Jahan present a project

undertaken to provide community-based palliative care

to people living in two slum towns in Bangladesh.

S Inhabitants of Korail Slum livingunder an open sky inMarch 2017. The slumhas experienced two major fires – in March this year andDecember 2016 – each of whichdestroyed severalhundred shanties.raKiB hasan/alamy

Copyright © Hayward Medical Communications 2017. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact [email protected]

he World Health Assembly hasrecommended that countries

integrate evidence-based, cost-effectiveand equitable palliative care services inthe continuum of care, across all levels,with emphasis on primary, communityand home-based care.1 Bangladesh is inStage 3a on the world palliative caredevelopmental map, which means thatsome isolated palliative care services andtraining provision exist here.2 However, arecent situation analysis revealed thatalthough Bangladesh has approximately600,000 incurable patients at any point intime, at present it has only six capital cityDhaka-based comprehensive palliativecare programmes, which altogetherserved fewer than 1,500 patients in 2013.3The same study found that 75% of cancerpatients experienced pain, and more than90% of health professionals did not haveany training in pain management orpalliative care.

in 2007, Bangabandhu Sheikh Mujib MedicalUniversity (BSMMU) in Dhaka, which is the onlymedical university in the country, recognisedpalliative care as one of its key objectives andbegan to provide some rudimentary services. A Centre for Palliative Care (CPC) was formallyestablished in 2011. this was a most remarkablebreakthrough among the few palliative careinitiatives in Bangladesh. in 2011, 15 inpatientbeds were created in the centre. in 2015, the CPCinitiated a pilot project to extend its activities intotwo urban slums in Dhaka, the Agargaon andKorail slums, in collaboration with the WorldwideHospice Palliative Care Alliance (WHPCA).

Goals of the slum palliative care projectOf Bangladesh’s population of 160 million, it isestimated that 2.23 million people – many ofthem elderly – are currently living in over 9,000slums.4 Slum life is characterised by cramped

conditions, lack of access to clean water, poordrainage, flooding, infections, exploitation andextreme poverty. the pilot project initiated byBSMMU mainly focused on the provision ofpalliative care to elderly people in the Agargaonand Korail slums. it was jointly funded byBSMMU and the WHPCA, with additionalcontributions from the rotary Club ofMetropolitan Dhaka and the AfzalunnessaFoundation. it was taken forward through acommunity-driven, public health approach, with the following specific goals:● to undertake a situation and needs analysis of

older people, and their caregivers, who requirepalliative care and assess the current careprovision by family, community members andrelevant organisations.

● to identify and forge partnerships withcommunity health workers, grassroot networksfor health and older people, and other relevantorganisations working in the two urban slums.

● to undertake a sensitisation programme toincrease understanding and awareness ofpalliative care in the slums, includingdeveloping an activist group of older people.

● to print 200 copies of the Palliative Caretoolkit in Bengali – the toolkit was originallyproduced in English by Help the Hospices (now Hospice UK) in 2008.

● to train six to eight Palliative Care Assistants(PCAs) from the communities to provide careand refer for further medical care, using thePalliative Care toolkit.

● to establish a homecare outreach palliative careservice in the two slums, comprising nursingstaff and trained assistants.

● to provide treatment and support to 100palliative care patients and theircaregivers/family members.

● to demonstrate an effective model of palliativecare for older people in an urban slum, throughthe production of a final evaluation report.

At the beginning of the pilot project, CPCBangladesh conducted a rapid situation analysis

www.ejpc.eu.com |European Journal of Palliative Care | 2017; 24(4) 157

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&Shahaduz Zamanphd research Fellow(global interventionat the End of lifeproject)1

NezamuddinAhmed md Fcps mBBsprofessor ofpalliative medicine 2

Mamun Ur Rashidmss Executivedirector3

Ferdous Jahan phdprofessor of publicadminstration 4

1 school ofinterdisciplinarystudies, dumfriescampus, university ofglasgow, dumfries,scotland

2 centre for palliativecare, Bangabandhusheikh mujib medicaluniversity, dhaka,Bangladesh

3 developmentresearch initiative,dhaka, Bangladesh

4 department of publicadministration,university of dhaka,dhaka, Bangladesh

T

Table 1. Support and care provided by the project

Category Services and support provided Frequency

health support • regular follow-up • medicine supply • Emergency health service• routine check-up

regular basis

care support • Wound care, helping in shower, nail cutting, hair cutting, home cleaning etc.• counselling to shocked/bereaved family members

Based on necessity

Food support • rice (5 kg) • peas (2 kg) • sugar (1 kg) • salt (1 kg) • Edible oil (1 kg) monthly

Festival support new clothes, blankets, special food during festival time

additional support Exercise machines, cataract operation and other medical services Based on necessity


to select programme beneficiaries and develop anoperation strategy. Activities began by meetingwith teachers and committee members of twoschools in the slums to discuss the objectives ofthe project. During the meetings, support wassought for introductions to the slum dwellers,and experiences of working in the slums wereshared. the feasibility of the project activities wasalso discussed and feedback obtained. Followingthe meetings, a two-day sensitisation programmewas organised with people in the two slums,targeting the parents of the students. the PCArecruits underwent a thorough trainingprogramme on palliative care, following astructured curriculum: six weeks of classroomteaching, followed by six weeks in the hospitalward and then 12 weeks spent mostly on homevisits in the slum under supervision.

Support and care provided by the projectEight young women were trained as ‘vanguards’,and took on the role of PCAs. these femalevolunteers in the community were trained toprovide home-based palliative care, includingphysical, social, psychological and spiritual care,to their patients. table 1 (see page 157) shows the

support and care provided by the PCAs to thepatients. Various medical services, includingemergency health services, were provided bynurses and doctors.

Evaluation of the projectAn independent evaluation of the project wascarried out one year after inception by a localresearch organisation called Developmentresearch initiative (dri) under the supervision ofShahaduz Zaman, a research fellow at theUniversity of Glasgow. the evaluation study wascarried out using various qualitative techniques,including in-depth interviews with projectbeneficiaries, key informant interviews withproject managers and community leaders, andfocus group discussions with PCAs,complemented by demographic, medical andservice-related quantitative data reviewingsecondary sources. Qualitative data were analysedmanually using framework approach. theevaluation had three dimensions: themanagement of the project; the effects of theproject on the beneficiary’s life; and sustainability.

A total of 106 patients and their familiesbenefited from the project during the first sixmonths. the majority (62.3%) were female; the


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S One of the pilot project’s eightPalliative CareAssistants attendsto the palliative careneeds of an elderlywoman in KorailSlum, with hercolleagues from the Centre forPalliative Care.cEntrE For palliativEcarE/BangaBandhushEiKh muJiB mEdicalunivErsity


average age was 66.8 years (female patients) and71.9 (male). Eighty per cent of the beneficiarieswere illiterate, with an average income of US$180per month. the patients received essentialmedicines, various forms of care and foodassistance. the beneficiaries were selectedthrough a rapid Situation Analysis by consultingwith community-based organisations in the slumand involving local adolescents. Selectingappropriate beneficiaries was challenging in thebeginning. the evaluation showed that, initially,the project did not follow strict criteria forselecting beneficiaries. As time progressed, theproject personnel endeavoured to correct theirown mistakes and became more effective intargeting their resources. However, in the context of extreme poverty, and a complete lackof health services, it became very difficult for theproject to determine the inclusion criteria for thepalliative care beneficiary – this is something thatdemands a discussion in the broader palliativecare community.

in the beginning, the people within thecommunity were uncooperative. in addition, due to the absence of previous relevant experience,the project personnel had to proceed through a‘learning by doing’ approach. initially, the PCAs

experienced some resistance to their work in thecommunity, but they are now largely accepted andplay a pivotal role in the project. the beneficiarieshold the services PCAs provide to them in highregard. the beneficiaries were found to be highlysatisfied with the medical, social and food supportprovided to them by the project. As one elderlymale patient said of himself and his wife:

‘Both of us are old now and there is no one to look after us. We take care of each other,but when both of us get sick, then there is no one left to take care of us in this shanty.Girls [PCAs] from the office visit our homeregularly and look after us. They spend agood time with us, talk to us freely and weshare our thoughts with each other. They are like family to us.’

the study revealed that almost all thebeneficiaries found that their self-confidence and self-esteem increased after joining thisproject. During one discussion, a femalebeneficiary observed:

‘I have confidence now … nothing willhappen if my son or daughter do not look

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S Today, Korail Slum,Dhaka’s largest, seenhere across BananiLake, is estimated tohave in the region of40,000 residents;most of them live inshanties constructedfrom bamboo frameswith corrugated tinwalls and roofs.palash Khan/alamy


after me … I have the confidence that thesepeople from the office are beside me … theywill surely support me if anything happens.’

the project also has changed somecommunity perceptions. For example, oneshopkeeper remarked:

‘The rice and peas for project beneficiariesare bought from my shop. I don’t take profit from them because they are doing a good job.’

Questions remain, however, about whether the project is sustainable. the PCAs are the keymovers of the project and much depends on them.When asked what will happen if they marry andleave the slum, most echoed this person’s view:

‘It is true that we will get married one day,but the knowledge we have gained will not getmarried off. Wherever we go and live, we willuse the knowledge gathered from this projectand thus serve people. Even if the project isclosed, we will continue our service; nobodycan stop us from continuing our effort.’

Nevertheless, the project continues to rely on external resources. its overall budget for thefirst year was approximately £5,000. Accordingto many project staff, the patients to whom they are providing treatment and services arebecoming dependent upon them. they fear thatthe beneficiaries will be left helpless if the projectis closed. Community participation in the projectis also still quite limited, but just one year in, itwould be premature to make judgements on itsfuture viability.

Conclusionsthere are enormous challenges in running a slum-based community palliative care project of thistype, characterised by a highly mobile population,informal power structures and high levels ofuncertainty. Yet it is apparent from the evaluationthat the project has achieved considerable successwithin a year. the clients are highly satisfied withthe services they have received and appear to havebenefited physically, socially, psychologically andspiritually – reflecting the component parts of theproject. the community volunteers who werechased away by slum dwellers at the beginning ofthe project are now made welcome in people’shouses. the objectives of palliative care are nowknown and appreciated by the community.

Globally, there are very few examples ofcommunity oriented end-of-life care in resource-poor settings such as this. it is widely argued thatperhaps the most refined version of the model isthe Neighbourhood Networks in Palliative Care(NNPC) in Kerala, india.5,6 the NNPC is anattempt to facilitate a sustainable, community-ledservice capable of providing palliative care to allthose in need, with limited resources. Given thefact that almost all the available palliative careservices in Bangladesh have taken institution-based approaches following Western models, thiscommunity-based initiative in the slum may havemuch to teach us ■Declaration of interestthe authors declare that there is no conflict of interest.

Acknowledgmentsthe authors would like to thank Worldwide hospice palliative care alliance(Whpca) and the Wellcome trust (grant number 103319/Z/13/Z) for fundingthe evaluation of the project.

References1. World health assembly (Wha). Strengthening of palliative care as acomponent of comprehensive care through the life course. sixty-seventh Worldassembly, agenda item 15.5. World health organization, 2014.http://apps.who.int/gb/ebwha/pdf_files/Wha67/a67_r19-en.pdf2. lynch t, connor s, clark d. mapping levels of palliative care development: aglobal update. J Pain Symptom Manage 2013; 45: 1094–1106.3. national institute of population research and training (niport). NationalSituation Analysis of Palliative Care in Bangladesh, 2013. dhaka: ministry ofhealth and Family Welfare, 2013.4. Bangladesh Bureau of statistics (BBs). Population and housing consensus2011. dhaka: BBs, 2011.5. Kumar s, palmed d. india: a regional community-based palliative care model.J Pain Symptom Manage 2007; 33: 623–627.6. sallnow l, Kumar s, numpeli m. home-based palliative care in Kerala, india:the neighbourhood network in palliative care. Prog Palliat Care 2010; 18:14–17.


service development

S Bangladesh has approximately 600,000incurable patients at any point of time. Atpresent, it has only six capital city Dhaka-based comprehensive palliative careprogrammes, which altogether served <1,500 patients in 2013.

S In 2007, Bangabandhu Sheikh Mujib MedicalUniversity – the country’s only medicaluniversity – recognised palliative care as oneof its key services and established the Centrefor Palliative Care (CPC). In 2015, the CPCinitiated a pilot project to extend the reach ofpalliative care services for older people andtheir families in two urban slums in Dhaka.

S A mixed methods evaluation of the projectafter one year reveals that it created highlypositive impacts on the lives of thebeneficiaries and the wider community.

S Nevertheless, the sustainability of the projectremains in doubt while it continues to dependon external resources.

S In a country in which almost all the availablepalliative care services have taken institution-based approaches, following Western models,this community-based initiative in Bangladeshhas much to commend it and could serve as apublic health model for palliative care in otherresource-poor settings.

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