Palliative care has recently been acknowledged as a human right and identified as a global health challenge. Over time global interest has increased that care for terminally ill patient should be returned to communities which has been termed as public health palliative care. The main concept is that the service delivery model should be supplemented by a community development model, which we intend to initiate based on the traditions and practices of community-based theatre. The Centre for Palliative Care (CPC) at Bangabandhu Sheikh Mujib Medical University (BSMMU) utilizes this model in its own home care outreach palliative care service named “Compassionate Korail” or “Momotamoye Korail” in an urban slum of Dhaka.
This study is a part of an AHRC-MRC funded project titled “Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre.” The main objective is to develop an innovative interdisciplinary partnership to provide support to the sustainability of the urban slum palliative care project in Bangladesh, by developing a contextually appropriate strategy for enhancing public engagement through community theatre. BRAC JPGSPH, as the research partner, intends to explore the terminally ill palliative care patients’ and caregivers’ experiences of suffering, which includes perception of the cultural practices, values and languages of death, dying and end-of-life care in the context of urban slums in Bangladesh, which was gathered through an ethnographic study.
Understanding death, dying and end-of-life care is one of the key inhibitors of effective palliative care delivery. Palliative care is developed in response to the needs of patient who are terminally ill and aims at making death a painless process through support, comfort and relief of symptoms, ensuring dignified death through early diagnosis, treating pain and other problems (Sepúlveda, Marlin, Yoshida, & Ullrich, 2002). The nature of dying has been a central concern of those working in palliative care. End-of-life care is only one of the many components of palliative care. The study findings will offer a model of community engagement in palliative care using theatre practices as a vehicle for engagement with service users and patients.
Findings showed that the perception of death depends upon the varied understandings of the nature of life itself. These can vary based on social, religious and cultural perspectives. The patients’ insights on death were diverse. Each respondent voiced a unique view in describing death. All of the terminally ill patients accept death as a natural event. They all explained death as an unavoidable and universal issue. Nevertheless, they also expressed a desire to recover soon and for their longevity.
A major part of the respondents’ worries revolved around their uncertainty regarding their children’s futures. A key goal for them during this time is to see them married and settled down. A few also discussed wanting to be free from debt. Patients commonly expressed their hope for a dignified, painless and comfortable dying process. We found religious values had a strong influence on explaining death. A majority of the respondents expressed that a “good death” happens if Allah (God) is with them.
Aside from the religious aspect, most of them also made clear distinctions between what they perceived as “good” or “bad” death. Dying in pain, with family suffering, or accidental deaths were considered bad deaths. In contrast, the presence of family and friends at the end-of-life was part of a good death because they would be surrounded by love and care.
The concept of heaven and hell was also a major anxiety among respondents. They believed in life after death and strongly asserted that if they obeyed God and prayed regularly, then they would be received in heaven (jannah), otherwise hell (jahannam) would be their destination. All the patients expressed a desire to be buried in their native place, where they have their parents or relatives.
The status of palliative care in Bangladesh is relatively new and very recently started in community-based services. According to the 2013 NIPORT Report, Bangladesh has a burden of 600,000 patients who are not curable and to treat them at present it has only six Dhaka-based comprehensive palliative care programs, one of which is the Centre of Palliative Care, discussed earlier. Understanding the perception of death specifically among the urban poor-population is important for delivering effective end-of-life and palliative care. The cultural context of death, can help policymakers make decisions regarding palliative care interventions in Bangladesh. Furthermore, this study will increase the productivity of existing palliative care projects and add great value to the discipline of public health palliative care, an emerging global health challenge, not only in Bangladesh, but also in other resource-poor countries. In particular, this project will expand the knowledge base of public health as well as other disciplines as they relate to the field of palliative medicine and other similar health issues.
This blog was written by Sayema Akter, Senior Research Associate, BRAC JPGSPH.