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From the ground up

20230504_135859

From the ground up

While the impact of grassroots efforts to grow compassionate communities hasn’t been measured, Woodlands Health recognises the importance of collaborating to grow this social change movement.

The term ‘compassionate communities’ was described by Dr Allan Kellehear in the mid-2000s as “naturally occurring networks of support in neighbourhoods and communities, surrounding those experiencing death, dying, caregiving, loss and bereavement”. These are groups that the public can be a part of, become more informed about death, dying, and care, and adapt their practices and behaviours to support those at the end of life.

The concept of compassionate communities is a powerful paradigm that aims to reverse the medicalisation that characterises dying in the 21st century and bring the process of dying and death back into society and into life. Over the last two decades, hundreds of compassionate communities have flourished in different parts of the world.

Singapore is in the beginning stages of fostering a compassionate community as a grassroots movement. In the last decade, a number of advocacy groups, campaigns and programmes have mushroomed. These include the campaigns “Dying to Talk” and “Living Wishes” by students of Nanyang Technological University Singapore (NTU) to encourage people to have dinner table conversations with loved ones about death at home. There are also groups such as Project Happy Apples by medical students of National University of Singapore Yong Loo Lin School of Medicine to raise awareness of palliative care and early planning, Project Gift of Song by medical students of NTU Lee Kong Chian School of Medicine using music as a medium in community engagement, Both Sides Now by ArtsWok Collaborative which develops arts-based and capability development projects to foster awareness of living and leaving well, to name a few. Charities such as the Singapore Hospice Council have organised large-scale community engagement efforts to raise awareness of palliative care and the importance of early planning.

The jury is out as to the widespread and sustainable impact of the various grassroots efforts, however.     

“Compassion in healthcare: an updated scoping of the literature” by Sydney Malenfant, Priya Jaggi, K Alix Hayden and Shane Sinclair published in peer-review journal BMC Palliative Care in 2022 concluded that global strategies tended to focus on increasing personal literacy and skills through awareness and education outreach. Few focused on community activation and the creation of health promoting public policies in palliative care. When analysis of outcomes was performed, evaluation was mainly at the level of the individual and not at the level of community processes and outcomes. 

In the last year, two workshops were conducted in Singapore on compassionate communities. The first was led by Dr Katie Eastman at the St Luke’s Hospital Palliative Care Symposium in November 2022 while the second was led by Dr Heather Richardson, Dr Kerrie Noonan and Dr Amy Chow at the 8th International Conference on Advance Care Planning in May 2023. The workshops were illuminating and shared about applying the compassionate community model at the individual, organisational and systemic level as well as utilising precepts espoused by the International Association for Public Participation to move the needle of engagement from merely informing the public about end-of-life matters to consulting, involving and collaborating with the community. The highest ideal of community engagement is to empower; that is, for agency to rest with the community while professionals in the “death systems” (late-Professor Robert Kastenbaum, 1988) support these community-led initiatives.

Should we have a top-down or bottom-up approach to compassionate communities? My conviction is that a whole-of-society approach is required. While the impetus is strong and grassroots activities have proliferated, we need a coordinated response to socialise death and dying, and to bring death back into life. Besides media campaigns, other initiatives may include targeted outreach as well as policy changes to nudge people towards the new “health promoting palliative care” paradigm in the national initiative Healthier SG launched by the Ministry of Health Singapore in 2022. Over the next few years, Singaporeans will hear about the “Pre-Planning Campaign” fronted by Agency for Integrated Care (AIC) to promote more Advance Care Planning (ACP) and Lasting Power of Attorney (LPA) as well as the Singapore Hospice Council’s “Ambassador Programme” and “Community Signposts” initiatives  which aim to increase awareness of palliative care in the community.  

WH ACP team and Health Coaches engaging with seniors from Care Corner Active Ageing Centre in small groups using Conversation Cards

As fledgling services, the Palliative and Supportive Care and ACP teams of Woodlands Health (WH) are starting from ground up and have begun direct engagement with community stakeholders such as Care Corner Singapore, Orange Valley, AWWA, Sree Narayana Mission, Singapore Cancer Society, Republic Polytechnic and Christchurch Secondary School. The response has been very positive. Contrary to popular belief, our anecdotal experience is that community partners and the public value opportunities to discuss issues related to death and dying in life-affirming and practical ways. We use videos and slides as well as pop-up booths and card games to educate people about positive responses to death and dying, and how we should prepare ourselves. In these workshops, some elders expressed interest to have further conversations with ACP facilitators. To share the work of community engagement, we are building a pool of staff volunteers of nurses, doctors, social workers and other allied health professionals. To connect with the people whom we serve in the community, we need to go out into the community and take time and effort to build trust and relationships. 

Death is not the opposite of life, but a part of it.

Author Haruki Murakami

As a topic, death is often swept under the carpet as a bane, and an emblem of ultimate loss and failure. However, death has immense value as a part of life, a natural event, and an immutable fact of life that is to be embraced, understood, and prepared for. As a social change movement, the compassionate communities movement aspires to raise death literacy and community activation towards death, dying, caregiving, loss and bereavement. In spite of the modern-day palliative care movement, sometimes it is still too much or ‘too little, too late’ when it comes to addressing ignorance and social inequities in dying. Through reviving connections and community as a proactive response to dying, the compassionate community paradigm hopes to bring death back into life. In our universal endeavour to promote kindness, caring, and human dignity, it is all hands on deck.

Photos: Care Corner Singapore

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