Strengthening Muslim community leaders’ understanding of palliative care in Australia

Abstract

Meeting the end-of-life care needs of particular groups in Australia remains challenging, especially those people who are culturally and/or religiously diverse. One such group is those adherents to Islam, whose communities come from many parts of the world.

Objective:

to develop connections with the Islamic community, to understand their end-of-life care needs.

Method

over 12 months palliative care staff and members of the Islamic community met to prepare for and deliver a seminar to assist understandings between the Islamic community and palliative care services.

Results

A seminar, attended by 79 participants, addressed issues like palliative care and Islam; how palliative care works; advance care planning; care coordination; and bereavement.

Conclusion

Many commonalities emerged, to provide a foundation for further activities; and the process demonstrated the importance of working together, and highlighted opportunities for shared collaborative work.

Keywords:

• Palliative care
• End-of-life
• Islamic communities
• Community education

Introduction

Palliative care in Australia is well-developed, being ranked second on The Economist’s scale for many years.¹ What remains challenging however, is to meet the end-of-life care needs of people from the many diverse cultural and religious groups which make up Australia’s population.² For the first time in the 2022 census, more people in the population were born overseas, or had a parent born overseas, than were born in Australia (Australian Bureau of Statistics (abs.gov.au) accessed 28.8.23). Therefore, cultural awareness is increasingly a requirement for health professionals and is incorporated into national standards like those of Palliative Care Australia (2018).³

While Australia’s historic roots are based in Christianity, many religious traditions have emerged consequent to the population changes. One particular group with specific end-of-life requirements are those adherents to Islam, whose communities in Australia come from many parts of the world, including Indonesia, Pakistan, Bangladesh, India, Turkey, Iran, Egypt, and North Africa.

In relation to palliative care, with its holistic tenet of care, spiritual care is integral to physical and social care. Further understanding of different cultural and religious end-of-life practices is required, in accommodating particular needs and preferences.⁴ And while sharing common approaches to dignity and care, there is much that is different about care within Islamic communities. For example, touch, an integral part of the caring relationship, is circumscribed by various practices including being forbidden between unrelated adults of the opposite sex.² In Islam, illness and suffering come from Allah, regarded as a form of atonement for one’s sins and a test of person’s faith;⁵ thus, illness and dying may be faced with stoicism. And death occurs with Allah’s permission.

Suleman⁴ suggests that for Muslim patients and families, the virtues of hope and acceptance significantly influence understandings of death and dying and what is considered a ‘good death’. It is also thought that these virtues influence the care sought as well as guiding their expectations of encountering health professionals.⁶

There is scant literature that describes the interactions between Islamic communities and palliative care and robust evidence is lacking;⁷ much literature consists of case studies and reviews. Kolmar⁷ suggests that building evidence around a patient’s experiences and desires, as well as seeking providers’ views about their gaps in knowledge are a good place to start. And cultural competency models from cultures and minority groups may also assist.

This paper describes the process undertaken to engage the members of the Islamic community in information and education about palliative care. A peak body, the Centre for Culture, Ethnicity, and Health (https://www.ceh.org.au), had previously conducted focus groups with imams, who expressed confusion and dislocation in their knowledge about end-of-life care and palliative care in particular and how their religious requirements could be better accommodated in Australian healthcare systems. Within the community-based palliative care services operating in the northern and western areas of Melbourne, data from the services indicates that few people from the Islamic faith access these services, which belies the local population’s multi-cultural profile.

Cognisant of this background, it was decided to work with local Islamic community leaders, to ascertain their needs and to provide information about the palliative care service system and what it could offer. This paper describes the development of an information seminar, as well as the process of working with the community to ensure engagement.

Method

From its inception, the project adopted a community development approach to identify how best to engage and inform the Muslim community about palliative care. Over 12 months, members of the project group met with Islamic leaders, to understand the needs and issues of the community. One Imam in particular, became the main contact person for email and on-line communication. The long lead time was essential in developing trust and gaining agreement on a way forward. Project group members, who were women, also needed to understand appropriate cultural and religious ways of communicating.

Partnering with the Centre for Culture, Ethnicity, and Health, a number of focus groups were hosted, comprising key leaders of the Islamic community from the Islamic Council of Victoria, the Muslim Hospital Chaplaincy Services, and the Board of Imams. These focus groups discussed ways of engagement with their communities and to present information about the palliative care service system and models of palliative care in hospital and community settings. Common issues that arose from the focus groups were how end-of-life care occurs in Australia; the role of advance care planning; and countering common myths like managing pain relief.

It was subsequently agreed that a seminar for both health professionals and religious leaders would be a good way to commence discussions and address some of these issues and an opportunity for shared learning. The working group, comprising representatives of the above-named groups, worked with palliative care representatives to co-develop and shape and content of a half-day seminar titled ‘Strengthening Muslim communities’ awareness of palliative care services’. The seminar was held at the Board of Imams Centre, from 9am to 1pm, followed by lunch catered for by the Centre.

Cognisant that feedback on the seminar would inform subsequent work that may arise from the seminar, ethical approval was sought to survey seminar participants regarding their experiences and further information required. Demographic information regarding participants’ background and professional role was also gathered. Ethical approval was gained from Monash University (no:37402).

The seminar was promoted on paper and by word of mouth, via the Board of Imams website, and through the Muslim Hospital Chaplaincy Service and Muslim Health Professionals of Australia as well as community and acute palliative care services across Victoria. The seminar was held over three and a half hours at the Board of Imams Community Centre, a known and accessible venue for the Muslim community.

Results

There were 79 attendants at the seminar, with 49 (62%) community and religious leaders from Muslim communities and 30 (38%) health professionals working in palliative care. Presenters were health professionals from acute and community settings, with one Imam presenting on Muslim approaches to the end of life and bereavement.

Other topics covered were:

• - palliative care in Islam: what is palliative care and why it is important?

• - how does the palliative care service system work: Service models in hospital and community settings;

• - advance care planning – why it is important and how to plan;

• - palliative care in aged care – what you need to know;

• - care coordination – General Practitioners and community palliative care working together;

• - accessing bereavement support.

At the conclusion of the seminar, a feedback survey was distributed to all participants via a QR Code and in paper form. The survey consisted of several yes/no questions, as well as room for free text. Of the participants, thirty-two (40.5%) completed the survey. Twenty-three respondents (71.6%) were from Muslim communities and nine (28.1%) respondents from the palliative care sector. Respondents (90%) expressed that they found the seminar useful and almost all (94%), reported that the session of most interest was the presentation – ‘Palliative Care in Islam: what is palliative care and why it is important?’ All participants found the question and answer session at the conclusion of the seminar helpful, with 84.5% rating it as very to extremely useful. Of the participants, 27(84%) said their knowledge of palliative care had increased and nine (28%) of palliative care providers indicated that their knowledge of Islam had increased. All respondents said they found the networking opportunities useful, with most staying for lunch and one respondent commenting on the positive energy in the room during the seminar.

Free-text comments at the end of the survey were overwhelmingly positive, with one participant saying: It was a great example of how establishing trust with a community and placing information in a cultural setting make all the difference. Issues that were specifically appreciated were education on pain control; advance care planning; the psychosocial aspects of illness and bereavement; and terminal sedation. More information was requested on life support and how it is accommodated within Islam; bereavement support and preparation advice prior to actual death and how Islamic beliefs dovetail with various medical treatments and what to do when they don’t. Other comments were related to the organisation of the event – appreciation of the networking opportunities and the suggestion to hold another similar event, perhaps making it an online event to attract a wider audience.

To assist further planning, a post-seminar meeting with the presenters further explored what worked well and what could be improved from the seminar day. Liaison with the Muslim Hospital Chaplaincy identified opportunities for capacity-building initiatives for spiritual care workers in acute and community settings in relation to the end-of-life care of Muslim patients.

Discussion

The lengthy and careful preparation for this seminar resulted in a mutually beneficial exchange of information, which can only be of value to those working in the Islamic community with those are facing the end of their life, as well as palliative care services providing care. Building connections between palliative care and Islamic professionals may smooth the pathway for referrals to palliative care and increase awareness of the specific religious and cultural requirements for people being cared for at home; and specifically, how these requirements may/may not impact on achieving a person’s wish to die at home.⁵ The seminar provided an opportunity to commence exploration of issues of common concern to both Islamic and palliative care health professionals.

The introduction of palliative care to a community mostly unfamiliar with such services may present challenges.⁶ For Muslims, for whom life and death are dependent on Allah, such overt embracing of the end of one’s life may be a challenge.⁷ Palliative care may be interpreted as ‘giving up’, which suggests a loss of hope, which is prohibited in Islam.^6,7 And discussions about advance care planning or resuscitation may be viewed as contrary to Allah’s will. Thus, the information provided in this seminar needed to be sensitive to this worldview.

On the other hand, Muslim people often come from cultures that place great importance on reliance on family and intergenerational support,⁶ which was borne out in sessions at the seminar. Thus, care of a family member who is dying is a responsibility that sits within the family.⁶ Further work may elucidate a correlation between high levels of family involvement and deaths that occur at home. And because compassion and dignity are common to both Islam and palliative care, there is a natural synergy that will contribute to smooth co-working.

Cultural understanding is an essential aspect of the equitable provision of healthcare in Australian society, requiring further research.⁴ While cultural awareness is integral, opportunities to share respective knowledge needs to be promoted and supported, especially in consideration of diverse individual expression, present in any religious faith. This seminar built on careful liaison and pre-planning, as well as respectful conversations, demonstrated the benefits of an opportunity for mutual understanding between palliative care staff and members of the Islamic community.

Leong et al⁵ suggest that the key to successful working together is not about becoming expert in particular faith traditions. Rather success comes from being curious and open and knowing where to obtain further help if required.

Conclusion

This paper has described the work undertaken to prepare for and deliver a seminar to assist understandings between the Islamic community and palliative care services. The process demonstrated the importance of careful planning and working together; the seminar was deemed helpful, creating further opportunities for shared collaborative work.

The commonalities underlying care were evident at the seminar and it is important to continue the development of such activities for the mutual benefit of all, and to continue building an evidence-base to strengthen the connections.

Disclaimer statements

Contributors None

Funding The author(s) reported there is no funding associated with the work featured in this article.

Conflicts of interest No potential conflict of interest was reported by the author(s).

Ethics approval None

Data availability statement

The data that support the findings of this study are available from the corresponding author, [MOC], upon reasonable request.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.