Emotional, Ethical and Cultural Challenges in Percutaneous Endoscopic Gastrostomy (PEG) Decision-Making: A Systematic...

Percutaneous endoscopic gastrostomy (PEG) is a critical intervention for patients with neurological and gastrointestinal conditions affecting oral intake. While clinical guidelines emphasise medical indications, they often overlook the intricate emotional, ethical and cultural concerns that shape decision-making. This gap in understanding leads to variability in clinical recommendations and uncertainty among patients and their families. A deeper exploration of these factors is necessary to support informed, patient-centred decision-making.

This systematic review and meta-synthesis aimed to explore the emotional, ethical and cultural challenges influencing PEG decision-making, while also considering the broader context of shared decision-making.

A systematic review and meta-synthesis of qualitative studies.

The review was conducted by systematically searching six databases, including CINAHL, Scopus, Web of Science, MEDLINE, PubMed and TRDizin. Only qualitative studies published between 2004 and 2024 were included to capture subjective experiences related to PEG decision-making. Studies focusing only on clinical outcomes or utilising quantitative methodologies were excluded. The review considered perspectives from adult patients, family members, caregivers and healthcare professionals while paediatric studies were excluded due to differences in decision-making dynamics. Data were synthesised using thematic analysis to organise findings into main themes and sub-themes.

A total of 15 studies representing a variety of clinical settings and patient conditions, such as amyotrophic lateral sclerosis, advanced dementia and stroke, were included. These studies involved 141 patients (41.1%), 62 caregivers (18.1%) and 140 healthcare professionals (40.8%), ensuring a comprehensive analysis of perspectives on PEG decision-making. Seven major themes were identified: (1) emotional and psychological impact of decision-making, (2) ethical and moral considerations both patients and caregivers, (3) communication challenges and information gaps, (4) impact of healthcare professionals on decision-making, (5) ethical and emotional challenges in decision-making, (6) communication barriers and conflicting advice and (7) professional responsibility and advocacy. Family members and caregivers reported feelings of anxiety, guilt and regret, often due to uncertainty and inadequate communication. Healthcare professionals also faced challenges, including conflicting messages and a lack of comprehensive information.

Emotional, ethical and cultural factors significantly impact the PEG decision-making process involving patients, caregivers and healthcare professionals. Improving healthcare professionals' communication skills, developing decision aids and encouraging interdisciplinary collaboration are crucial for supporting informed and shared decision-making.

Nurses play a central role in the PEG decision-making process, as they are the healthcare professionals with the most frequent and direct contact with patients and their family support networks. Addressing the gaps in communication and emotional support can help improve the quality of care provided to patients undergoing PEG. Implementing structured emotional support programmes, integrating psychological counselling into routine care and training healthcare professionals in empathetic communication strategies can significantly reduce patient and caregiver distress. Beyond providing clinical care, nurses act as essential advocates, educators and emotional support providers, ensuring that patients and families receive clear, consistent and compassionate guidance throughout the decision-making process. Their involvement in interdisciplinary collaboration and shared decision-making frameworks is crucial for aligning PEG decisions with patient values and preferences.

This review synthesised findings from studies capturing the experiences of patients, families, caregivers and healthcare professionals involved in PEG decision-making, ensuring their perspectives were represented.