Supporting communities to start conversations about end of life care

community

Many of you who are regular Palliverse readers will be aware of our ongoing promotion regarding the need for the community as a whole to support open discussions about death, dying and end-of-life care. A group of researchers from the University of Alabama have recently published on a novel approach to this issue. In this study, they report on the effects of training lay community members as ‘health navigators’, who work with patients in hospital to help them understand the process of advance care planning, and to facilitate their further discussions with their family and healthcare team.

The responsibility for initiating timely advance care planning discussions has traditionally fallen to professionals, in particular medical, nursing and social workers, who are seen to possess the appropriate clinical skills and are well placed to identify patients in need of these discussions. However these professionals often lack the time to cover advance care planning in the necessary detail, meaning that such discussions are often brief, if undertaken at all.

In a recent paper published in the Journal of Pain & Symptom Management, Gabrielle Rocque and colleagues report on an innovative program, in which lay community members were trained in the key aspects of advance care planning. Their role as ‘health navigators’ required them to cover ‘First Steps’ facilitation within the Respecting Choices program, in a number of U.S. cancer centres. This involved the navigators being competent to communicate the concept of advance care planning, assist patients in exploring personal values, identifying substitute decision-makers and communicating preferences for end of life care. The navigators completed six online modules and a one-day Respecting Choices certification course.

The navigators reported increased confidence and preparedness to undertake advance care planning discussions following the training. The fifty navigators initiated over 1000 advance care planning discussions over an eighteen month period. There were however differences between sites in the number of discussions undertaken and the navigators’ perceptions of being supported in their role. Around a quarter of the patients approached declined the discussion, and navigators identified that being introduced to patients by the medical team facilitated engagement. Follow up analysis of over 2000 deceased patients indicated that among those who had initiated advance care planning discussions with the navigators, there was a lower rate of hospitalization, and a trend towards lower ED use in the final 30 days of life.

The authors concluded that lay community members can be effectively trained in the key aspects of introducing ‘First Steps’ advance care planning to patients, with outcomes similar to other studies employing professional facilitators. The navigators were often able to spend greater amounts of time explaining advance care planning than health professionals. They also noted that navigators were recruited from within their local communities, and this may have contributed to the higher than usual acceptance of the program by patients.

With the growth in local community-led initiatives such as the Groundswell Project, and Death Cafes, it is timely to remember the role that appropriately trained community members might have in contributing to awareness, discussion and planning for care at the end of life. At one level, this can be seen as the community filling an important gap in the provision of health service delivery. From another perspective, one might question whether such resources should instead be committed by governments and health services, as part of ‘core business’. The possibility that lay community members might in fact garner greater engagement with patients in advance care planning discussions is intriguing, and could perhaps be researched further in the Australian context.

What are your thoughts? Are you aware of similar programs in your local area? How can we continue to develop community engagement in advance care planning?

11 thoughts on “Supporting communities to start conversations about end of life care

  1. Really interesting, were the health navigators paid or volunteer? I would think a social worker is better equipped for such discussions and the time factor could be mediated by more funding or perhaps a specific funded position, but certainly sounds worth further investigation and does promote community

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    • Hi Gee Jen, from what I can understand from my read of the article, the health navigators were recruited from within their local communities, were paid, and were typically moderately to well educated, with a higher proportion of females, and (as per the demographics in this area) a high proportion were African American, which the authors suggested facilitated engagement with patients.

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  2. Fascinating article and the potential for scalability is exciting. After a small amount of training, members of the community could help their fellow members with these important conversations. Local community-based solutions certainly appeal. Have advance care planning programmes over-complicated these conversations and thereby block access? Have ACP conversations become too specialised/clinical whereas they should actually be aiming to become more generalised/lay conversations?

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    • Yes! I think we maybe have. In my work in advance care planning I am trying to “keep it simple, stupid”…..
      If you became very unwell and could not speak to the doctors about what medical care you want…. WHO would you want to make medical decisions for you? And WHAT would you want them to say?
      Decision Assist* (who promote advance care planning for older Australians) are about to introduce a help line staffed by volunteers.
      * I work for them! Disclaimer.

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    • Totally agree. Another benefit of that is accessability. If you ever do a pilot programme I’m putting my hand up!

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  3. Community lead advance care planning, especially by people who have been through the experience of being a carer, is the way to go. Advanced care planning can be seen as a way of enhancing naturally occurring supportive networks. Conversation about wishes takes place with families. This allows families to think about what is needed to be able to support someone at home. Advanced care planning just with the patient may not be terribly effective as when a crisis arrives nobody will know what to do. Resilient supportive networks are key.
    My clinical experience from having done many years supporting community development at the end of life is that families can communicate with people who have been through the experience of caring in an entirely different way from communicating with professionals. In many ways this is deeper and preferable as a first option

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    • Agreed. Someone who has been in the Carer role has an in depth knowledge of what is required. Also is so beneficial to share some of that experience with someone who is new to the caring role. In many ways it is a much more holistic approach as it supports the person who is faced with dying as well as the Carer Have been “the Carer” for my parents when they were facing death and now am supporting a friend who is caring for her terminally ill mother. Found that there is a level of honest open communication that takes place that is sometimes not so forthcoming in the more formal setting. That is my experience.

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  4. Palliative Care South Australia have run Die-alogue Cafes (DC) across Metro Adelaide for the last three years. Kept to 20 or fewer ‘registrations’ a death literate facilitator hosts a conversation about all things death. https://www.facebook.com/events/1706835462937111/ A local community space is used, and a pop up cafe ensues. Coffee/tea, cake, conversation. The first for 2017 was hosted at the Spare Room Cafe in Grange. A beachside suburb of Adelaide. 15 people registered and 3 ‘cafe goers’ joined in. An evaluation link is sent to all the participants who register. Evaluation asks about Die-alogue Cafe as a positive experience, their level of comfort in sharing thoughts and asking questions, that it helped to understand fears about dying, death and grief, their thoughts on it being a good way to offer practical assistance to the community, and finally empowers [me] to be able to more openly discuss death, dying, grief and advance care planning. 100% agree or strongly agree. As the peak state palliative care body, Die-alogue Cafe facilitators are not clinicians, drawing on experience, both personal and from the privilege of working alongside community palliative care nurses for a long period, to engage and draw on the participants – it is the sharing that is the empowering bit. In the previous two years we traditionally promoted these activities using social media and our usual distribution lists. This year our promotion is more localised. DL flyers dispatched to the area that the DC is being hosted in, and it drew a very diverse group – a couple, one of whom was terminally ill, and who were relieved to finally find people with whom they could talk freely about their feelings, thoughts etc. Do people simply not know what to say to someone who knows they will die? Community members who were involved in schools where a young person had died recently and simply wanted to know about resources, people who wanted to be prepared, to know death well and be of use when it comes… and much more. It is a privilege to host these activities, and it doesn’t have to cost the earth. Coming up on April 28th Palliative Care SA and Adelaide Cemeteries Authority SA are hosting Death over Dinner at West Terrace Cemetery. It’s the 2nd of these types of events, the first was sold out in two days. This is the end-of-life edition… visit pallcare.asn.au events tag to find out where your local death literacy event is on in South Australia.

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  5. Lovely to see support and evidence for what we intuitively know works really well – simple discussion about what matters. Not another form, framework, not another working party, not another buzz word bingo fest.
    With Shannon’s Bridge (new charity volunteer run organisation) we are running volunteer training sessions to this (raise community awareness about death and dying, promote the uptake of ACP, helping people to upload them to their MyHealth Record, supporting them talking to their GPs about their values as well as training and support for direct patient interactions and “network-focused care”).

    Early days but going really well.

    The program is loosely based on some to the brilliant work by Palliative Care Victoria and their Volunteer Training Program, as well as resources from Loddon Mallee Palliative Care Consortium. However, we have simplified and tried to de-buzz word our approach to make it more accessible.
    Our local PHN (West Vic) has been very supportive in promoting the training which I think is a pivotal part of making this approach grow.

    Currently a purely volunteer model but I could see that funding for a Manager of Volunteers as it grows would help us to increase the number of communities we could help.

    In the spirit of not reinventing the wheel, the Shannon’s Bridge team are eager to share our resources and learn from other organisations doing similar work as we try to mot only aim for a good death but better living.

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