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Difficult but important conversations: Advance care planning for children receiving palliative care

Author: Karen Carr, Children’s Palliative Care Nurse, PhD Researcher, Ulster University

Date of publication: September 2021

Keywords: Palliative care, paediatric, advance care planning, behaviour change, COM-B framework

When a child is receiving palliative care, early conversations in a calm environment are recommended to identify family values, plan for future care, and make decisions. However, these conversations often start too late, or during a crisis.

Why is this important?

Advance care planning is a process that allows people to discuss, share, and record personal values and preferences regarding future care. These conversations increase patient satisfaction, help to identify patient and family wishes and goals, improve quality of care, avoid inappropriate intensive care admissions, and aid the bereavement process. However, health and social care professionals are deterred from initiating advance care planning conversations when the patient is a child. We wanted to explore the reasons behind this.

What we aimed to do

We aimed to identify what practices, factors, and behaviours influence how health and social care professionals approach advance care planning with children receiving palliative care. We considered these factors through the lens of the Capability, Opportunity, and Motivation Model of Behaviour (COM-B) framework. This framework is commonly used to identify what needs to change in order for a behaviour change intervention to be effective. The framework suggests that three underlying factors will impact behaviour:

  1. Capability – are health and social care professionals physically and mentally capable of initiating advance care planning?
  2. Opportunity – are the social and physical circumstances appropriate to allow health and social care professionals to initiate advance care planning?
  3. Motivation – are health and social care professionals driven to engage with advance care planning?

What we did

We developed a survey by reviewing the published literature on the topic and mapping the findings onto the COM-B framework. Our survey had 54 items developed for health and social care professionals working in palliative care, generalist, and specialist paediatric settings. We distributed the survey during July and August 2019 using email and via online newsletters.

We conducted descriptive and inferential statistics to summarise participant characteristics and compare differences by demographic variables. We also conducted checks for internal consistency, and an exploratory factor analysis to explore underlying constructs. Qualitative responses to open ended questions were thematically analysed.

What we found

In total, 140 health and social care professionals responded to the survey. The factors listed below were found to impact on health and social care professionals’ initiation of advance care planning:

  • Many of the conditions were unique to children, and 1 in 10 had no confirmed diagnosis, therefore, there was often no clear prognosis.
  • Doctors were more likely to initiate conversations than any other health and social care professional.
  • Health and social care professionals felt more capable to initiate advance care planning conversations if they were adequately trained.
  • Working within a palliative care or hospice setting presented more opportunities to initiate conversations.
  • Health and social care professionals felt more motivated to complete advance care plans when they did not have to use a standardised tool.

Open ended questions revealed that certain criteria had to be in place before advance care plans would be initiated; good rapport with the family, knowledge of the family dynamics, readiness from the parents, and consensus from colleagues.

Interestingly, over a third (37%) of respondents stated they would initiate an advance care planning discussion earlier when reflecting on a previous experience.

What this means

Health and social care professionals support the use of advance care plans, however, the reality for them is that starting these conversations is complex and uncertain, with many barriers and facilitators. This may impact on the quality of care delivered and bereavement experience of the parent.

Moving forward, we need to highlight the behaviours linked to avoiding or delaying advance care planning for children receiving palliative care. This information can be used to create a targeted intervention to support health and social care professionals engage with advance care planning earlier.

Further research should consider identifying what motivates a health and social care professional to want to initiate earlier, rather than the need to initiate discussions because they feel they have no alternative. Exploring the views and experiences of parents should also be considered by researchers moving forward.

Find out more: Carr, K., McIlfatrick, S., Downing, J., & Hasson, F. (2021). Initiation of paediatric advance care planning: A cross sectional survey. Child: Care, Health, and Development (accepted with changes 11/08/2021)

For updates follow Twitter: @KarenMECarr