Investigating initiation of advance care planning conversations for children with life-limiting or life-threatening conditions using mixed methods design

Abstract

Background
The ongoing development of medical technology and availability of life-prolonging interventions has resulted in the extension to life and often precarious survival of increasing numbers of children with life-limited or life-threatened conditions, many of whom require complex care regimes. Premature death is still inevitable. The process of decision-making in child health care has changed over the past decades from paternalistic, medicalised decision-making with little parental involvement to shared decision-making between parents and health care professionals. This has resulted in many more care decisions being required throughout and at the end of life-limited/life-threatened children’s lives, and places challenges for health professionals in initiating advance care planning conversations.

Advance care planning has developed growing recognition within child health care in the past ten years and is advocated for life-limited/life-threatened children. It is recommended by health providers and is reported by parents to assist with preparing for their child’s death, planning the location of death and improving the quality of the child’s life, whilst also reducing child suffering and parental decisional regret. National and international children’s policy reflects the widespread recognition of the importance of, and the need for, children’s advance care planning. However, uptake is low and initiation tends to happen at times of crisis in an unplanned manner.

Aim
To explore the experiences and preferences of parents and health care professionals on initiating of advance care planning conversations in children’s palliative care.

Method
A mixed methods approach was used, informed by capability, opportunity and motivation behaviour change theory (COM-B). This comprised four phases: systematic integrative literature review, quantitative survey (n=140), qualitative health care professionals’ interviews (n=24) and qualitative parent interviews (n=16).

Findings
Four key findings resulted from synthesis of the study phases. (1) Health care professionals’ (HCPs) knowledge and definition of children’s advance care planning (cACP) indicated misunderstanding, with common underlying goals focused more on limitations of care and end of life decisions. Parental understanding was based on information supplied by professionals at initiation; however, initiation often occurred at crisis moments, which influenced their understanding and response. (2) HCPs sought an ‘ideal’, often unachievable initiation situation based on prerequisites; however, contextual influences made every situation unique and subsequent delay in initiation regularly resulted in crisis initiation. Parents and HCP believed that HCP are ultimately responsible for initiating discussions; (3) Emotionally, there was an impact before, during and after the initiation of cACP discussions though HCPs and parents showed empathic responses toward each other. Parents felt HCP avoidance of discussions frustrating. HCP and parents found cACP emotionally draining. Trust played a vital part in parental compliance with HCP; and (4) System complexities underpin the experience of initiation of ACP for all involved. Foundations at cultural, organisational and personal levels to prepare, encourage and support professionals and parents with cACP were often absent.

Conclusion
ACP is advocated by parents and HCPs but the theory of early engagement is not reflected in reality. Initiation is a vital element of the process but is under-researched and although guidance and some initiation tools exist, they mainly concern implementation and are rarely used in practice. Without guidance and in response to the human element and impact on health professionals and parents, health professionals develop prerequisites to guide their behaviour. Some prerequisites are incorrectly based on assumptions and resultingly may have a lasting impact on the experiences, views and possibility the bereavement processes of parents. Training in the form of focused courses, but also documentation, mentoring and learning from examples, is needed. This would help to help develop communication skills to engage in these sensitive/tender conversations that not only have an immediate impact on the care of the child but also a lasting impact on the memories of those who live on. Engagement is complex and must be individualised. The reality that no guidance will ever be available to counter all the individualised situations HCP may encounter, providing professionals with the tools (Capability) and addressing the structural issues (opportunity) alongside acknowledgement and support regarding the emotional impact on themselves and parents, will improve the willingness to want to start ACP conversations (motivation). Resultingly the initiation of cACP will take place earlier and in an appropriate manner (behaviour).

Date of Award	Mar 2023
Original language	English
Sponsors	Department of Education and Learning
Supervisor	Felicity Hasson (Supervisor) & Sonja McIlfatrick (Supervisor)