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Journal of Social Work in End-of-Life & Palliative Care

Volume 16, 2020 - Issue 4

Title: "The Heart of Living and Dying: Upstreaming Advance Care Planning

into community conversations in the public domain in Northern Ireland."

Deirdre McKenna, (Southern Health and Social Care Trust) Johanna O'Shea

and Liz Tanner


This paper provides an evaluation of the Heart of Living and Dying (HLD) Initiative.

This initiative is a group process that attempts to bring Advance Care Planning

(ACP) into the public domain. It encourages participants to consider what matters

to them in their living along with their hopes, preferences, and wishes for their final

years and end-of-life care. An inductive, interpretive, and naturalistic approach

allowed the researcher to study these phenomena in their natural setting i.e., the

community. This qualitative study used 5 focus groups with 17 people and

employed thematic data analysis to identify key themes. All participants in the HLD

speak from a personal perspective irrespective of any professional background. It

transpired that 16 respondents worked in health and social care, which

subsequently became noteworthy in the findings. Three key themes were

identified: (a) feeling emotionally safe enough to have such sensitive conversations

is vital; (b) participating in the HLD process increases the confidence of those

participants who worked in health and social care, to undertake ACP conversations

and (c) planning ahead is a complex, staged process rather than a single recordmaking

event. The Covid-19 pandemic crisis reinforced the need to upstream ACP

initiatives such as the HLD, as the norm for everyone, since all of us will one day

die. It is recommended that the HLD be incorporated within ACP training given that

the experiential nature of it and the use of groups was reported to build confidence

in facilitating ACP conversations. A virtual HLD process needs to be developed to

adapt to restrictions on gatherings due to Covid 19.

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