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

Backgroundunderstanding 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.Methodtransparent 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.Findingswe 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.Interpretationkey 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.

What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death

“…This requires improved integration of palliative care into primary care in future years. 38 These are areas of research and clinical care that require urgent attention.…”

Cross-cultural adaptation and validation of the PRISMA-7 scale for European Portuguese

“…The ageing population poses new challenges for health and social care services [1][2][3][4][5][6]. The increase in life expectancy is inversely associated with healthy life expectancy, implying a longer lifespan with disability and, therefore, increased use of health care, multimorbidity and frailty [2,7]. The group of frail older people is increasing due to ageing and an increase in life expectancy [6].…”

“…Frailty is an age-associated biological syndrome with multisystem down-dysregulation, reduced physiological reserves [7][8][9][10][11] and capacity to maintain homeostasis [1,[12][13][14][15][16][17], loss of cognitive function [18], functional decline [5,6], increased risk of being institutionalised [19] and vulnerability to stressors [9-11, 13-15, 20], risk of falls, disability, dependence [4,18], activity limitations, imminent death, hospitalisation, prolonged recovery and relapse [1,8,16,19,[21][22][23][24][25]. Frail older patients present a long clinical course of disease with intermittent episodes of decline and experiencing a lack of coping strategies when dealing with change and disruptions [2,19]. Very old patients evaluate their health problems based on impact [26].…”

Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden

“…Research has described communication about the end of life as a challenge for nursing home staff [ 39 ] and revealed the need for education and training for this task [ 40 , 41 ]. However, the crucial point was that the benefits for the next of kin of using a palliative approach of care [ 42 ] in nursing homes for old persons must be fully understood [ 43 , 44 ].…”