Building Compassionate Communities Around End of Life Care
John Bailey October 18th 2015 Why community development/participation ?
Professionalised dying and expectations are that when someone is dying care must be provided by professionals NHS figures state that 56% of terminal ill people wanted to die at home, but only 18% achieved it If there was a gap in services, like a chaplain, Hospices would fund raise and employ a chaplain without asking your community what they needed. 1About 3-4 years ago one of the Hospice founders had his 90th birthday and said one of his biggest regrets was the fact we were paying for jobs that volunteers and the community could do. Grandson who had fish and chips with his granddad each week. If current trends continue fewer than 1 in 10 will die at home by 2030
July 2011 survey of support to our patients.20% received no informal support The Future Needs: Increased population Increased elderly people Increased chronic illnesses and dementia Increased people living alone Ernesto Sirolli: Want to help someone. Shut up and listen
Ernesto Sirolli: Want to help someone? Shut up and listen! | Talk Video | TED.com When most well-intentioned aid workers hear of a problem they think they can fix, they go to work. Ernesto Sirolli Italian aid worker every project they set up failed, they went to do good work, but everything they touched they killed. On one project they went to Zambia to teach them to grow food, they arrived in a magnificent fertile valley with their Italian tomatoes and zucchini seeds. The Zambian people had no interest, so the paid them to work and sometimes they even turned up. This fertile valley had no agriculture, but instead of asking Why they didnt have agriculture, they thought Thank god we have got here just in time to save them from starvation. Size of fruit then over night 200 hippos ate everything.They asked the Zambian people why didnt you tell us about the hippos, to which the obvious reply was you didnt ask He goes on to say it wasnt just the Italians causing more harm than good, but the Americans, the French and the English, but in the end he became proud of his project, because they achieved more than the other countries, because at least they fed the hippos. What we have done is similar, the Hospice was founded by the community, but we felt we needed to professionalize palliative care.However, we are now turning back to listen to what our communities want. Creating Community at end of life
https://caringatendoflife.files.wordpress.com/2011/09/2012-bringing-our-dying-home.pdf Bringing Our Dying Home Where we went wrong we thought wecould replicate the Australian model, but they had less services, state paid palliative care, very few died at home and mistrust between professionals and volunteers.We believed the same mentoring of carers would work here. Policy Service delivery Community Outer network Inner network Person Inner Tom sitting with granddad Outer Tony and ramp.Phil mowing the lawn, milk, just say Yes.Mainstreaming networking. Community Companions/Mentors Carers reluctant to ask for help esp. men are useless at asking for help. Supporting carers by being involved with patient first. Are you here to help me die? Gentleman who was too frightened to go to sleep MND gentleman, companion got equipment through MP We need volunteers that can go with the home care team into peoples homes. These volunteers dont have to talk about the illness, just provide support to patients and families in their own language because sometimes its difficult for patients or families to talk to either other family members or service providers about certain issues but its easier to talk to someone from the same cultural and religious background who speaks the same language. That would have really helped when my father-in-law was dying at home Proposed Model of Supporting Compassionate Communities
Coordinator Community Companion 1 Coordinator would oversee 10 mentor a day (WTE 50), each mentor could have three carers, so for one WTE Coordinator150 carers could be having this extra support. Carer Carer Carer Buddy Group This is how we got it right, from the carers and family group they asked for a group after, they named it themselves, most groups support themselves away from the Hospice. Two bereaved ladies who met in the Buddys group, one was able to help sort out the others husbands clothes after he died. A lady who was bereaved who had met another carer in the family and friends group supported her and helped care for her husband and was their when he died. Two men go fishing together, one had never been before, but is finding great solace and support. Community Hubs As Ernesto Sirolli says we need top become servants.Therefore, we are piloting using one of our shops and inviting people to join us.We shut up, with no ideas and sit with local people.They hopefully become like friends, and we listen to what they want for their area and end of life care.Then with their passion they grow themselves supported by us and also become supporters of the hospice. Compassionate Charter
Compassionate communities recognise that all natural cycles of sickness and health, birth and death, and love and loss occur everyday within the orbits of its institutions and regular activities; care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyones responsibility. Outcomes and Progress Increased support for carers from their ownnetworks Reduced isolation by increased community connections Increased capacity to support carers by the community 2. MP visit, hadnt seen anyone for six weeks. It is a global success Neighbourhood Network in Palliative Care in Kerala Over 10,000 trained volunteers 2500 patient visits per week Volunteers are the backbone of the organisation and have allowed the coverage to reach over 70% Provide basic care, social and psychological support and are the link between the patient and healthcare team A Challenge How much of what we do as professionals could be done by non professionals and would this make life more meaningful for the patient, family, friends, neighbours, people we know and people we do not? Any Questions? Pathfinder site Compassionate City Charter Community hubs Buddy Groups/carers groups Public health toolkit Model of thinking - mainstreaming e.g.s Thai lady, milk story, Phil mowing the neighbours lawn. Are you here to help me die?Frightened of going to sleep gentleman. 60 minute talk, 15 minutes questions Ruth Clark Tel: Lee Abbey Network Mapping Any Questions? Circles of Care: should community development redefine the practice of palliative care? Julian Abel et al. published in the BMJ Supportive & Palliative Care abstract can be found at: