Healthy End of Life Program (HELP)

Empty chair.

Program overview

The ‘Healthy End of Life Program (HELP); offering & providing, asking & accepting help’ is a research-informed and evidence-based public health palliative care resource to guide implementation in communities.

Our intention is to promote health in end of life care and to shift social norms around offering and accepting help. We aim to identify and build on local values and structures (community capacities) that will form, maintain and sustain a compassionate community. Such a community will be able to work cooperatively with carers, family, friends and neighbours to support residents who wish to receive end-of-life care in their home, or other community settings.

We recognise that local initiatives need to be shaped by community resources, assets, infrastructure, culture, values and leadership, and that the generation of new and constructive ways to act in communities are collaborative.

The Healthy End of Life Program (HELP) framework

Offering and providing; accepting and asking for help

We use a strengths-based sustainable community development program, designed to create a collaborative community culture that attends to local end-of-life care needs. Communities are guided through a practical suite of resources on how to work cooperatively with carers, family, friends and neighbours, to support residents who wish to receive end-of-life care in their home, or community setting.

HELP is designed to change two social norms, using two key strategies, based on five healthy end of life principles and seven community development practices in seven areas for community-driven action.

Changing two social norms

The project works to change two social norms to mobilise a collaborative community culture at end of life:

  1. shift the culture from one where members instinctively decline help from personal and community networks to one that ‘asks for and accepts help’
  2. reinforce and create a community culture that is confident and capable of offering and providing help.

Using two key strategies

The program aims, through community development strategies, to build end-of-life capacity and resilience in two strategic ways. It achieves this by:

  1. generating, in partnership with other community forums, public conversation, community discussion and skill sharing on the role of community at end of life
  2. developing social networks capable of responding to individual and collective end-of-life care needs in the community.

Based on five principles

There are five principles that underpin all activities in the HELP Program to promote success:

  1. normalise death and grief as a natural life processes
  2. promote a collaborative culture for community support
  3. support individual and community health planning
  4. reduce fear and stigma associated with illness and death
  5. build individual and collective resilience in the face of grief and loss.

Seven community development practices (LEADERS)

Our program uses several community development practices which should be followed when undertaking any work related to HELP.

Lead

Lead from behind, which means enabling, coaching and mentoring community members to take the lead in developing the HELP program. Never undertake a task that a community member can do. Don’t make the community dependent on you.

Ensure

Ensure community participation by encouraging people from all parts of the community to get involved in the HELP program, and assist people to take ownership of the program.

Assets-based

Use an assets-based or strengths-based approach, in which you facilitate community development by identifying and building on existing strengths and assets in the community.

Design

Design yourself out of a job, in every step, every aspect and every decision. This means creating environments for the HELP program, where community members are able to make the decisions and do the work themselves, without relying on you to solve problems or make the decisions.

Exit

Plan your exit strategy from the beginning, by empowering the community to develop and manage its own HELP program.  Help the community set up a strategy for managing the program without you.

Recognise

Recognise that the community is the expert of local knowledge and assets, and have the capacity to generate local solutions based on this wisdom.

Sustainable

Support the community to develop sustainable solutions through their HELP program. Only start work that the community can finish.

Seven areas to guide community driven action

People

Identify, engage and collaboratively support local people who are willing and capable of enabling and encouraging the community to shift to a sustainable collaborative culture on end of life.

Eg: Identify local leaders and organisers who are passionate about social change and willing to take a lead on implementing HELP in their community. Engage local community development workers and volunteers to include end of life in their existing portfolio.

Place

Incorporate end-of-life support into existing social and community structures, and create new structures to meet local need to increase the capacity of communities to create supportive environments for residents around the end of life.

Eg: the community or town is a Healthy End of Life Place (A Compassionate Community)

Projects

Design creative community initiatives based on local strengths and interests.

Examples include: arts and performing arts-based initiatives, settings-based initiatives (schools, aged care, and workplaces), animal companion programs, local support networks, community events, and practical taskforces. Initiatives may engage with existing community networks such as service clubs, gardening clubs and other local hobby groups and organisations.

Partnerships

Develop local solutions through creative collaborations between community organisations and individuals.

Examples include partnerships between organisations such as: arts, music, service clubs, schools, aged care services, community health services, local government ageing strategies and town planning, traders, U3A, sporting clubs, home-based funeral providers, green funerals and burial services.

Planning

Coordinated local responses to overcoming structural barriers, changing community culture and improving healthy end of life planning.

Community Level: Examples include strategic plans in community organisations, collaborations with local health services, local government planning, township planning (public bereavement initiatives) and strategic collaborations that address barriers to end-of-life care being provided in the community (GP support, pharmacy support, social support).

Individual Level: initiatives that support local people approaching the end of their lives to plan for and mobilise personal and community supports that meet end of life wishes.

To cite this program: Grindrod, A., & Rumbold, B. (2016) Healthy End of Life Program (HELP): offering, asking for and accepting help. Creating an End of Life Collaborative Community Culture. La Trobe University Palliative Care Unit, Melbourne, Australia.

Contact us

Palliative Care Unit (PCU)

HS2 Room 545

La Trobe University

Bundoora, Victoria, 3086

Tel: 03 9479 8815

Email: pcu@latrobe.edu.au