Rachel House volunteer Ana Dols has been on a journey to learn about palliative care and the role of compassion for those living with life-limiting illnessses. Here she writes about the innovative Compassionate Communities Program in the United Kingdom and draws useful parallels to the community-based palliative care program, CNPC, organsied by Rachel House in Jakarta.
By Ana Doles, Spanish Educator & Compassion Activist. Originally posted on May 30, 2018.
Because we don’t like to talk about dying or death, most people know little about the end of life or palliative care. We shy away from difficult conversations with friends, family and neighbours about our inevitable mortality. Because of this, many people die alone. Many people die in pain with no one there in their final moments. Sometimes even longer.
For four years nobody missed Agustín. He died alone in his apartment in the popular district of San Blas in Madrid (Spain). Four years after his death, Agustín´s neighbours realised they had coexisted all this time with a corpse, which was by then mummified.
There is too much loneliness in people’s lives today. Some studies even point out that “social relationships, or the lack of, constitutes a significant risk factor for serious illness —rivaling the effect of well-established factors such as cigarette smoking, blood pressure, obesity and physical inactivity”
Loneliness can be deadly
Loneliness by itself can sometimes be deadly. Despite the fact we live in such a hyperconnected society, it has been shown that social isolation is killing people. The UK’s Prime Minister Theresa May recently appointed a Minister for Loneliness as a response to the serious problem of citizens being alone. However, this isolation that is being felt in the UK is not isolated. The journalist Norimitsu Onishi recently unveiled a terrifying reality of a whole generation in Japan facing a lonely death.
Julian Abel, President of Compassionate Communities in the UK, is trying to tackle this loneliness for people in their last days. He wants to establish support networks in every city, town and village to ensure that everyone can have a dignified death. He says that “death concerns all of us; death, bereavement and loss are not only a government or medical services’ issue or their sole responsibility, all of us should be engaged.”
Moreover, Allan Kellehear, the coiner of the term “Compassionate Cities”, argues that “compassion is an ethical imperative for health that should not be a professional‐only response to those in need, but founded on the principle of social interdependencies”.
The networks that provide support to those who are dying are known as Compassionate Communities. “The community could be family, neighbours, local organisations, a faith group, local businesses or people living in a particular area. It could be some or all of these. People in a Compassionate Community provide care for a serious or terminally ill person through small acts of compassion, supporting them during the end of their life, often enabling them to die well and, if possible, at home”.
I wish to highlight this idea of “small acts of compassion”. Great gestures or great actions might be unattainable for many of us, but to be kind towards others is not only possible but absolutely necessary. Those so-called “small acts of compassion” can have enormous significance in the long run. By working and pulling together, a “Compassionate Community can help a dying person, and their family and friends”
CNPC: Rachel House’s Compassionate Community
Inspired by the compassionate communities around the world, Rachel House established a community-based palliative care network known as CNPC (Community Network in Palliative Care) in 2013. The program leverages Rachel House’s learnings from its delivery of palliative care service to children in the most marginalised settings – the understanding that it takes more than medical science to ensure a good death. The CNPC model leverages the naturally occuring supportive networks in a community, such as families, friends, neighbours, community leaders and care professionals, to provide care for those living with life-limiting and life-threatening illnesses. As Julian Abel and Allan Kellehear remind us in their BMJ article “Palliative Care Reimagined”, “death, dying, caregiving and loss are social problems with medical aspects”.
The CNPC model believes that everyone approaching the end of life should have the right to the highest quality care and support, wherever they live, and whatever their condition. The CNPC-trained community volunteers provide both hands-on care and support to the caregivers. Healthcare professionals in these communities are involved to build much stronger partnerships with the CNPC support networks to transform the end of life care.
Ana Dols is currently based in Jakarta and volunteering with Rachel House. If you would like to know more about compassionate communities and to help set up support networks for Rachel House, you can contact her on [email protected].