Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with...

Area of Science:

• Pediatric healthcare
• Medical ethics
• Qualitative research

Background:

• Caregivers of children with medical complexity (CMC) face difficult decisions regarding life-sustaining treatments (LST), such as tracheostomy.
• Developing effective decision-making models is crucial for supporting these families.

Purpose of the Study:

• To develop a clinically relevant and realistic model for tracheostomy decision-making in CMC.
• To explore applicability to other LST in CMC.

Main Methods:

• Qualitative study using 41 interviews with caregivers and 5 focus groups with healthcare providers (HCPs).
• Conducted at a tertiary-care children's hospital.
• Thematic content analysis was used to develop a decision-making framework.

Main Results:

• Caregiver decisions were influenced by child's well-being, personal values, faith, knowledge, experience, emotions, and social factors, with life preservation being paramount.
• HCPs considered clinical and nonclinical factors, finding recommendations ethically challenging for children with poor prognosis.
• A collaborative decision-making (CDM) model, encompassing caregiver and HCP factors, emerged, featuring 'gaining understanding' and 'holding decision-making conversations'.

Conclusions:

• Collaborative decision-making (CDM) offers a valuable model for clinicians guiding families through tracheostomy decisions for CMC.
• Further research is needed to explore CDM's utility for other LST in CMC.