People with multiple long-term conditions are routinely missing out on palliative care, even though it is a human right that should be based on need, not prognosis. This matters because most people will die from multiple long-term conditions—such as heart disease, diabetes, and frailty combined—yet the current system tends to reserve palliative care for single-disease cancers. The problem is especially acute for older people, those living in poverty, and minority ethnic groups, who are both more likely to have multiple conditions and less likely to receive palliative support. The research asks two concrete questions: what do these patients actually need as death approaches, and who should provide it—specialist palliative teams, GPs, social care, voluntary groups, or families? If successful, the project will produce specific service models that show how to deliver palliative care to this neglected group, including when and by whom. These models will be tested for feasibility and cost in real-world case studies. The immediate impact would be on how the NHS and social care systems plan and commission services, potentially reducing inequitable access without requiring new buildings or expensive technology—just a smarter allocation of existing resources.
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Background Palliative care, the multidisciplinary holistic management of patients with life-limiting illness (4-6), is a human right (7) and should be provided on the basis of need not prognosis. Inequitable access is an ongoing challenge. Most people will live with, and die from multiple long-term conditions (multimorbidity) (MLTC-M) yet this population are especially likely to miss out on palliative care (8). MLTC-M is frequently the all-pervading feature of populations who experience health inequity. Because of its associations, tackling appropriate palliative care provision for those with MLTC-M is key to also tacking inequitable access amongst people who are older, living in poverty, from minority ethnic groups and living with frailty (9,10). Research Questions What are the palliative care needs of patients with MLTC-M and how do those needs change, as death approaches? What range of interventions are required to meet the palliative care needs of people with MLTC-M and what role should different stakeholders (palliative care, generalist health services, allied healthcare professionals, social care, the voluntary sector, families and communities) have and when? Methods Co-production: I will work in partnership with a group of people with MLTC-M and those who care for them (family members and health and social care professionals). They have helped design the project and will help run it and interpret the findings. We will: 1. Synthesize evidence on palliative care needs of patients with MLTC-M and service provision, to inform questions in subsequent survey and interviews. 2. Conduct an online survey of health and social care professionals who work in, plan and commission hospital and community services worldwide asking; What palliative care needs do people with MLTC-M have; how is palliative care currently provided, what are the challenges and how should care be provided? 3. Interview a purposive selection of the care providers for greater insights into care provision. 4. Conduct a longitudinal qualitative study to explore the needs and experiences of people with MLTC-M who are in their last year of life and their families. 5. Multi-method case study evaluation of exemplar sites Three models of care will be identified from the preceding work, and a realist case study evaluation undertaken. They are likely to include integrated services and those led by voluntary sector organisations. Qualitative interviews with stakeholders will be combined with analysis of service level process and outcome data . 6. Bring it all together. Integrative analysis of phases one to five will be performed with the co-production group, to consider how care could be provided to people with MLTC-M, when and by whom. A series of workshops with key national and local stakeholders will discuss and develop proposed service models whilst considering; acceptability, feasibility, demand, resource implications and potential savings and evaluation. 7. Impact generation A national seminar for researchers, health and social care professionals, people with MLTC-M and families will share project findings. Specific clinical, public facing, scientific and policy outputs will be produced. Service delivery and patient care will be influenced over the lifetime of the project.
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