What does dying well look like and how can we help people achieve this? In 2018, people from across Melbourne's north west came together to to discuss different viewpoints and reached a shared position on what dying well looks like.
REMIT (THE CHALLENGE)
What does dying well look like and how can we help people achieve this?
SNAPSHOT
Process: Community panel (deliberative engagement)
MosaicLab’s role: Design and delivery of a two-and-a-half-day community panel
Host organisation: North Western Melbourne Primary Health Network (NWMPHN)
Recruitment: Deliberately Engaging
Timeframe: August 2018 – December 2018
Participants: 27 panellists
Outputs: Report detailing the panel’s final, agreed recommendations
“(We were) strangers from varying backgrounds, life experiences, ages and cultures - all very much individuals, but what we collectively put forward, it was exceptional.”
OVERVIEW
In 2018, MosaicLab was engaged by NWMPHN to facilitate a community panel to assist in defining what dying well looks like. 31 people were recruited as panellists; 27 participated. The panel was invited to help NWMPHN answer the question ‘what does dying well look like and how can we help people achieve this?’
The initiative formed part of NWMPHN’S involvement in implementing the Greater Choice for At Home Palliative Care Measure which is funded by the Australian Commonwealth Government Department of Health.
NWMPHN recognises that communities have the right to influence decisions that impact their health. A deliberative engagement process was undertaken to allow the community to have an in-depth discussion around a difficult, confronting and emotive topic - decisions that affect people in relation to palliative care. The process gave participants the opportunity to weigh up information, consider options and work together to identify a way forward that balances multiple factors and consider different needs.
Key community cohorts that were most impacted by end of life care were defined. Groups identified included patients, health professionals, service providers, carers and community groups. Representatives of these groups were then randomly selected to participate in the community panel by an external, independent recruitment specialist.
Panellists received a background report for review. Over a period of 19 days, community panel members met online and face-to face and were able to discuss the report, request and access further information and share personal experiences and perspectives.
The panel:
discussed insights from the background report,
heard from a selection of experts and speakers,
defined what ‘dying well’ is,
developed ideas,
reviewed and tested their ideas to identify level of comfort,
indicated whether they could ‘live with’ the recommendation or more (i.e. ‘like it’ or ‘love it’),
compiled a report that included recommendations that received 80% or more support (live with it and above).
Three panellists share their experiences following the conclusion of the process, providing insights into biggest challenges faced and highlights experienced throughout their deliberative journey.
CHALLENGES
Challenges faced in the process included:
discussing the emotive topics of death, dying and end of life care and working with the range of feelings that these issues could generate
encouraging active participation from the community while ensuring their wellbeing
supporting the needs of panellists to ensure everyone could participate equally and meaningfully.
KEYS TO SUCCESS
Keys to success included:
clear expectations were set out and roles were defined for the community panel, NWMPHN, Deliberative Engagement and MosaicLab
a clear and well-communicated remit was carefully constructed to provoke in-depth conversation and provide clarity around the scope of the conversation
balanced discussion ensuring all community participants could talk openly and safely
development and implementation of a risk management plan including contingencies for participant well-being
responding to participants’ requests for support and assistance.
“I didn’t expect (the process) to be quite as rigorous as it was. I was pleasantly surprised by that, because it is necessary, and it’s actually good to subject our insights and views to some sort of scrutiny.
”
OUTCOMES
The panel members wrote their own report, which included 16 recommendations on how to improve end of life care and provided a definition for what ‘dying well’ is. View the panel’s report here.
Panel members presented the recommendations to executive staff at NWMPHN. NWMPHN will use the recommendations developed by the panel to help decide how they fund and support services to improve end of life care for the community.
The NWMPHN Dying Well Community Panel process was acknowledged at the IAP2A Core Values Awards 2019 with a Judges Encouragement award and a Sustainable Community Development Certificate.
“We (NWMPHN) will look at how we can take those recommendations to… improve outcomes for people at the end of their life.
”
MORE INFORMATION
MosaicLab prepares a process report at the conclusion of every deliberative process detailing the core elements of the process from a design and facilitation perspective. View the MosaicLab process report here. More information on this process can be found on the NWPHN website.
Photos courtesy NWPHN.
“The NWMPHN had never undertaken community consultation in a deliberative format. The courage they showed in stepping into the process and commitment they made to understand the community perspectives was key to the success of this approach.
”
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