Experiences and barriers in downward referral decision-making for palliative care patient caregivers under China's three-tiered linkage model: A qualitative study

Objective: This study aimed to explore hospice caregivers' downward referral decision-making experiences and barriers under the triadic linkage model in China and to analyze the deeper social dynamics of hospice referral choices.

Methods: Semi-structured interviews were conducted with caregivers handling hospice referrals from two primary hospice agencies in Nanjing, China. The themes were analyzed and summarized using the Colaizzi 7-step analysis.

Results: Four themes and nine subthemes were extracted: multidimensional caregiver psychological experience (Dilemma and Guilt, Emotional Support and Psychological Adaptation), perceived disparities between referral organizations (convenience and affordability in the home community, perceived lack of primary health care resources), limitations of caregiver decision-making (cognitive comprehension bias, difficulty in information seeking, and passive acceptance of decision making), and limitations of health care referral support (lack of health care referral guidance, inadequate referral handoffs).

Conclusions: Feedback from caregivers of hospice-referred patients reveals many barriers to hospice referral decision making and referral implementation. Overcoming these barriers entails efforts to change the cognitive misunderstandings regarding hospice referrals from patients' perspective, clarify the distribution of responsibilities among hospice agencies, and provide information support and decision-making assistance. These measures must be employed to improve the implementation of hospice referral, realize the multiple benefits of hierarchical diagnosis and treatment, boost patients' satisfaction with the referrals, and ensure the rational and efficient distribution of hospice resources.