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

Presenter

Presentation Notes

People like Bill, living in Limerick are usually familiar with Milford Care Centre, the Specialist Palliative Care service for the Mid-West, providing care for individuals with advanced life limiting illness. Milford is the first and only specialist palliative care provider in Ireland to make a strategic commitment to Health Promoting Palliative Care (HPPC) and is home to the country’s only Compassionate Communities Project (CCP).

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?

–Carroll, 2010, Forum on End of Life

“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”.

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.

McLoughlin, Rhatigan, Richardson 2011

‘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?’

WHAT IS HEALTH?

• Health is more than just the absence of disease or disability

• Health is created in communities that attend to the

richness of human experience • A healthy environment is a fundamental requirement for

health • Strategies to address health needs involve much more

than simply providing “health services”.

OTTAWA CHARTER HEALTH PROMOTION 1986

In promoting health we should ..... • Build public policies that support health • Create supportive environments • Strengthen community action • Develop personal skills • Reorient health services

SO HOW CAN WE APPLY THAT TO DEATH?

• Provide education and information for health, death and dying

• Provide social supports, both personal and communal • Encourage interpersonal reorientation • Encourage reorientation of palliative care services • Combat death-denying health policies and attitudes

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.

Presenter

Presentation Notes

A helpful analogy to highlight the focus of HPPC is that of a river. It is an approach that distinguishes between the provision of services that are crucial when people are ill (downstream) and initiatives that focus on how issues of death, dying, loss and care are dealt with at a whole population/community level (upstream). HPPC seeks to influence what is happening ‘downstream’ and also to minimise harm from downstream factors (Rumbold and McInerney, 2012) by enhancing the capacity of individuals, groups and communities to cope with those experiences. But what does that mean in reality? Old farmer Think Ahead Story Young Girl Bobbys Story

BUT HOW ARE YOU GOING TO MEASURE IT?

54 51 41

0

25

50

75

100

Nationally Mid-West Familiar with CCP

% 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.

P<0.004 P<0.000 P<0.00

0 Not sig.

Café Conversations (n=74)

4.53

3.16

2.1

3.06

4.76

4.18 4.18

2.88

0

1

2

3

4

5

Importance of Talking Understanding MCC Understanding CCP Difficulty talking

Pre

Post

SO WHAT NEXT?

The Partnership can find additional help for things like walking the dog, doing the shopping, collecting a prescription, going to the library, filling a coal bucket, lighting the fire, mowing the lawn, making a snack, tidying up or sitting with a person who needs a break.

Can assist a person affected by advanced illness, and their family, to find the extra social and practical support that they may need from within their community by making links with those living close-by who would like to offer help.

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.

SECONDARY OBJECTIVES

Develop, implement and evaluate a brief training programme that will be delivered to Compassionate Communities Volunteers prior to the implementation of the Good Neighbour Partnership;

Assess the impact of participation on volunteer’s death anxiety and confidence communicating with people living with a life limiting illness;

Conduct a process evaluation, examining the feasibility and acceptability of the model of care from all perspectives (patient, carer, health professional and volunteer).

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.

FROM SERVICE PROVISION TO COMMUNITY ENABLEMENT Compassionate Communities – The Milford Model