The increasing adoption of the compassionate community model in palliative care will require a whole-of-society change from the ground up that, ultimately, would mean all could live well and leave well at the end of life.
“It takes a village to raise a child” is a proverb with African origin that emphasises the communal effort required for the upbringing of a child. The same could be said of the all-in efforts and all-round resources required to take care of a person with terminal illness at the end of life.
Many would think palliative care is the province of multidisciplinary care teams made up of doctors, nurses, medical social workers, dieticians and therapists, but the field has widened to include grassroots organisations, social service agencies, ethnic and religious groups, workplaces, neighbours, extended family members, friends, and the community at large, all of whom play important roles across different settings. They support those at end-of-life and their families through the progression of illness, death and bereavement.
This is an aspirational vision of what a compassionate community in action would look like.
Compassionate communities are part of a broader public health approach to palliative care and serve to improve access to services, increase the capacity of caregiving, raise death literacy, and boost social, emotional and spiritual support so as to enable as many people at their end-of-life the comfort and ease of dying at home surrounded by their nearest and dearest family and friends.
THE CIRCLE OF END-OF-LIFE CARE
It seems that caring for the dying is coming full circle.
In the 19th century, caring for the sick and dying was the responsibility of family or perhaps the religious orders, because not much could be done to make them comfortable except emotional support, prayers, and basic care. With rapid advances in medicine, the rise of nursing as a profession, and the building of hospitals in the 20th century, caring for those at the end-of-life took place in these institutions, shifting to medically trained professionals. In a way, it became more impersonal — ‘clinical’ has the meanings of both ‘emotionless’ and ‘disinterested’ — and people passed away in surroundings that were not of their own choosing.
Dame Cicely Saunders, credited with the birth of the modern-day hospice movement, initially served as a nurse before training as a physician. She researched pain management for those with life-limiting illness at St Joseph’s Hospice in Hackney, East London, a Catholic hospice for destitute terminally ill patients.
She felt that end-of-life care left much to be desired, where patients spent their final days in hospitals in great distress due to inadequate pain relief, and emotional and spiritual neglect, even to the extent of abandonment. Dame Cicely’s vision of palliative care embraced a person’s “total pain”, including the physical, psychological, social and spiritual aspects, covered by a multidisciplinary team providing care at the end of life. In 1967, she realised her aspiration and founded the world’s first modern hospice, St Christopher’s Hospice, and it became the benchmark and inspiration for other hospices around the world
Her famous words: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die”, have been taken to heart by those who endeavour to uphold her legacy and spirit of palliative care since then. In her interaction with like-minded others who wanted to build similar hospices, Dame Cicely always advised that local culture and needs be taken into consideration.
The return of care, death and dying to the community drew from of the World Health Organization’s (WHO) First Global Conference on Health Promotion in Canada where the Ottawa Charter of 1986 paved the way for a new era in public health, one that would embrace health literacy and community engagement strategies because of the commitment to “accept the community as the essential voice in matters of its health, living conditions and well-being”.
The latest bridge — from institution back to community — which started the compassionate community movement in palliative care was in 2005, when the late Professor Allan Kellehear’s seminal work, Compassionate Cities: Public Health and End of Life Care, not only defined compassionate communities but also mapped out how to build Compassionate Cities.
COMPASSION IN COMMUNITY
The vision of a compassionate community may be more attainable than we might think.
The most recent example of Singaporeans coming together towards a common cause was during the COVID-19 pandemic. There was a groundswell of community initiatives that brought together ordinary Singaporeans, businesses and public agencies to provide assistance to those in need. The Straits Times article “Community spirit among Singaporeans shines through during COVID-19 pandemic, says public sector report card” published in November 2022, stated over 13,000 volunteers signed up for various initiatives. According to the Head of Civil Service Leo Yip, it is this partnership between Singaporeans and the government that is the light in the dark of this crisis, “It highlights Singaporeans’ strong spirit of care and concern for one another as well as how working together has enabled us to serve those in need and overcome this crisis as one.”
This spirit of voluntary action, as well as philanthropy, has been part of Singapore’s heritage since the beginnings of this island city-state. While the building of healthcare facilities was mostly financed by philanthropists, communities were nurtured along geographical, social and cultural lines, that provided support networks for those newly arrived and in need.
However, care for the death and dying, especially of the destitute, was very much neglected due to its taboo nature. The notorious Chinese “death houses” that lined Sago Lane reflected no dignity nor respect for the dying — a shadow impression that remains in the minds of older Singaporeans. When they were shut down for good in 1961, the process of dying moved away from the community into hospitals.
The first hospice service in Singapore was offered by St Joseph’s Home in 1985, an extension to the shelter for the aged and destitute they have been providing since 1978. This inpatient hospice set aside an initial 16 beds for those with “advanced illness”, and served as the starting point for many Singaporeans to volunteer in the fledgling palliative care field.
The hospice movement continued to grow in the decades that followed with the opening of Assisi Hospice, HCA Hospice, Singapore Cancer Society, MWS Home Care & Home Hospice, Dover Park Hospice, and others, helmed by dedicated volunteer healthcare professionals.
What encompasses a compassionate community may not be clear cut to some but Dr Kerrie Noonan, a clinical psychologist and social researcher who has been promoting death literacy for the last 25 years, described it as “formal and informal networks coming together to support dying people and their families”.
To Dr Noonan, these networks could be fluid depending on the context. “Sometimes, groups are formed to care for someone who is dying, and other times, people gather to work on initiatives that help make their spaces more compassionate for those who are caring, dying or grieving.”
Dr Katie Eastman, who is founder and CEO of Children’s Palliative Care Community (CPCC) and also Adjunct Professor at Antioch University, USA spoke about “Applying the Compassionate Community Model at the Individual, Organisational and Systemic Level” at St Luke Hospital’s inaugural Palliative Care Symposium 2022.
She shared an example of a community collaborating to ensure that a terminally ill child and his family residing on an island could get additional support for them to remain at home. “The local grocery, ferry staff, faith community, friends and neighbours, essentially the island residents formed their own team. The visiting nurses met with him regularly, communicating his needs to our palliative care team, and our physician worked very closely with the island physician to check on his symptoms. Medicine was transported via the ferry as needed. He was kept comfortable and able to remain on the island for a little over a year until his death.”
THE FUTURE LOOKS BRIGHT
In recent decades, there has been increased activism among the youth in Singapore as shown by Project Gift of Song, and Pallipals by medical students from Lee Kong Chian School of Medicine at National Technological University, Singapore who mainly befriend palliative care patients at Tan Tock Seng Hospital. These youth activists “engage the patients in activities such as board games, arts and crafts, reading and singing performances”, as well as organise information outreach events to raise awareness on palliative care among the public as well as fellow medical students.
“I am optimistic about the compassion and care that already exists within our communities. One of the contributions that the compassionate community movement can make is to remind every citizen they have a role to play when someone is dying, caring or grieving,” said Dr Noonan.
Whether becoming part of an existing compassionate community or building one in order to address a care gap, everyone can make a difference, and the positive outcome generated will be one that is greater than the sum of their parts.
CHANELLING YOUR COMPASSION
- Be attentive to those around you and extend a helping hand to family, friends and neighbours in need.
- Get involved and volunteer with SHC and be part of the collective voice to champion quality palliative care. Spearhead the death literacy effort at work or school, and invite SHC to conduct a Palliative Care 101 workshop in your community
- Enhance your understanding of end-of-life matters by accessing SHC resources, attending webinars and visiting SHC at roadshows; follow SHC on Facebook, Instagram, LinkedIn and YouTube for the latest information and updates.
Photos: Singapore Hospice Council, FREEPIK.COM