Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders.

ABSTRACT

BACKGROUND: understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom. METHOD: transparent expert consultations with health professionals, voluntary sector and carer representatives including a consensus survey; and focus groups with older people and carers were used to generate recommendations for the SIPS model. Discussions focused on three key components of the model potential benefit of SIPS, timing of delivery and processes of integrated working between specialist palliative care and generalist practitioners. Content and descriptive analysis was employed and findings were integrated across the data sources. FINDINGS: we conducted two expert consultations (n = 63), a consensus survey (n = 42) and three focus groups (n = 17). Potential benefits of SIPS included holistic assessment, opportunity for end of life discussion, symptom management and carer reassurance. Older people and carers advocated early access to SIPS, while other stakeholders proposed delivery based on complex symptom burden. A priority for integrated working was the assignment of a key worker to co-ordinate care, but the assignment criteria remain uncertain. INTERPRETATION: key stakeholders agree that a model of SIPS for frail older people with non-malignant conditions has potential benefits within community settings, but differ in opinion on the optimal timing and indications for this service. Our findings highlight the importance of consulting all key stakeholders in model development prior to feasibility evaluation.