FROM SERVICE PROVISION TO COMMUNITY ENABLEMENT Compassionate Communities – The Milford Model
“Once upon a time…”
28,000 people die 1 in 4 die at home
IT MAKES SENSE Death, dying, loss and care affect everybody and are not just issues relevant to health and social care professionals. The experiences of death, dying, loss and care bring with them additional personal, health and social costs which are preventable and/or relievable if the right supports are available in the right place at the right time. The majority of people living and eventually dying from advanced life limiting illnesses spend the greater part of their time at home being cared for and supported by family members, friends and neighbours.
Specialist Palliative Care Services developed historically in response to the care needs of those affected by and dying from cancer. Between 80% and 90% of patients cared for by these services have a cancer diagnosis. But the majority of people in Ireland do not die from cancer and many have limited access to Specialist Palliative Care Services. Many people feel unprepared when faced with the experiences of advanced, life-limiting illnesses, death and bereavement and are uncertain as how to offer support and assistance. Specialist Palliative Care Services have accumulated a wide range of skills, knowledge, expertise and information which are transferable to non-specialist settings, including the community and general public.
What is it like for people like Bill living with an advanced illness and facing death, who spend most of their last year of life at home, in their community with family and friends?
“I think we must look at the social context of dying in Ireland today. In Ireland death has been sanitised, put in the closet, so to speak. Until lately, speaking about death had almost become a taboo subject, resulting in a similar denial and fear of death that is prevalent throughout the Western World”. – Carroll, 2010, Forum on End of Life
SO WHAT DOES THAT MEAN FOR MILFORD? The difficulty in talking about death, dying and bereavement (particularly to children). The experience that the emotional impact of loss is often unacknowledged. The cumulative and intense nature of the loss experienced by local communities particularly as a result of the number of young people who had died in tragic circumstances.. “She went up to the cemetery; she said every second grave at least was a young person. I suppose it’s only when you look at the bigger picture because in some ways bereavement is a personal thing because it’s just what happens around your circle. When you see all the circles and you see them together, it’s shocking”. The recognition of death as profound and mysterious and the comfort and support found . in religious faith and belief in an afterlife.
Irish society was regarded as generally supportive of recently bereaved people. Ritual and remembrance of the dead were seen as important and as expressions of community solidarity for the bereaved. Concern that bereaved people are not always allowed sufficient time and space to grieve, and that sometimes social and practical support are withdrawn too soon. “Often around death there is a huge fuss at the time and there is quiet an intense kind of thing that goes on maybe for a few days or a week, but it is shocking then how much that is replaced by absolutely no intervention … there was a massive fuss. But then that just absolutely evaporated and then there was nothing”. Immediate family and friends were seen as the most important sources of support for people living with a life limiting illness. But sometimes people don’t know what to say or what to do.
‘How do we use the experience and knowledge of the Specialist Palliative Care Service to support communities, groups and individuals to enhance the social, emotional and practical support available to those living with a life-threatening illness, those facing loss and those experiencing bereavement?’ McLoughlin, Rhatigan, Richardson 2011
THE COMPASSIONATE COMMUNITIES PROJECT • An initiative of Milford Care Centre • We are here to support people in the Mid-West to think a little differently about death, to encourage people to plan ahead, talk with others and offer practical support within the community to those facing the end of life. • A small change in our attitude toward death can make a big difference to how we live.
BUT HOW ARE YOU GOING TO MEASURE IT?
% of people who had taken NO action regarding issues associated with death, dying, loss and care e.g. Drawing up a will, thinking about who will attend their funeral, considered organ donation etc IHF 2014, Weafer Study. 100 75 50 54 51 41 25 0 Nationally Mid-West Familiar with CCP
Café Conversations (n=74) P<0.00 P<0.00 Not sig. P<0.000 4 0 5 4,76 Pre 4,53 4,18 4,18 Post 4 3,16 3,06 2,88 3 2,1 2 1 0 Importance of Talking Understanding MCC Understanding CCP Difficulty talking
Department of Psychology
If only I knew Bill needed help... Paid services Neighbours Work mates Parish Sister Haven’t Son spoken for I need someone years BIL to cut the lawn L and tidy the roses. I don ’ t Wife want to be Best friend Pete burden. Don’t Community what to Rugby pals Bill’s sick…but we organisation say to won’t intrude s him.
The people I mobilise are the I am a Good compassionate Neighbours communities volunteer. I find out what I mobilise the the person person’s needs doing. network and ask them to help. I don’t do the jobs myself…otherwise I would burn out.
VOLUNTEERS ✓ Maturity, common sense and the ability to be discrete and sensitive. ✓ A good understanding of ethical/confidentiality issues. ✓ The ability to confident and out-going, relate well to others and communicate effectively. ✓ A respectful and non-judgmental approach at all times. ✓ A good sense of humour. ✓ Good organisational skills and ability to complete paperwork. ✓ A good sense of personal boundaries and a clear understanding of purpose of the role.
7 WEEK TRAINING PROGRAMME Module 1 : Getting to know each other and the programme • Module 2: Communication skills, confidentiality • Module 3: Boundaries, understanding the Good Neighbour Partnership and • making introductions Module 4: Assessing social and practical needs, identifying circles of • community, developing and agreeing action plans Module 5: Understanding dementia. • Module 6: Practice and rehearsal - professional actors • Module 7: Safety, self-care, emergencies and endings . •
BEANSTALK ✓ B – Breaks the Ice ✓ T – Talk to the ✓ E – Explains the Good community Neighbour Partnership ✓ A – Ask them to help ✓ A – Assesses the person’s social and practical ✓ L – Link people needs together ✓ N – Network of ✓ K – Keep an eye Community is determined ✓ S – Summarise and agree the action plan
INSPIRE Study Phase 0 Phase 1 Phase 2 Scoping studies Development of GNP Recruitment, selection Systematic review and training of volunteers RCT Interviews Brief Screening Tool Focus groups Pilot 3 patients Department of Psychology
PRIMARY OBJECTIVES To determine whether this new model of care can: reduce unmet social and practical need; reduce unplanned health service utilisation; improve overall quality of life (including social connectedness and psychosocial wellbeing); increase the social networks and reduce isolation and loneliness; alleviate caregiver burden.
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COMPASSIONATE CITIES CHARTER (KELLEHEAR 2014) “Through auspices of the Mayor’s office a compassionate city will… develop and support 13 social changes to the cities key institutions and activities”. “A commitment by the city to embrace a view of health and wellbeing that embraces community empathy, directly supporting its inhabitants to address the negative health impacts of social inequality and marginalization attributable to dying, death and loss”.
“In other areas citizens have taken brilliant initiatives such as the Compassionate Communities project at Milford Care Centre in Limerick which seeks to work in partnership with individuals, groups and communities facing loss and those experiencing bereavement. The State must learn from these initiatives and catch up with community-led creative solutions. We need the panoply of State services to help us to think, talk and tell about dying, death and loss and enable us to support each other.” Seanad 16th April 2014 Marie Louise O’Donnell
SOME THOUGHTS It may take longer than you think – ground work is vital People are compassionate, connect and want to be part of it Despite your agenda, you will always attract bereaved people In fact, this shouldn ’t be about your agenda! But you still need a plan… Staff need to be multi-talented The team will need support and sources of renewal Share what you develop – don’t be precious Dare to be brave..and perhaps a little bit crazy.
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