Improving the quality of life for care home residents with chronic diseases

Reference # RPGF1906\177
Date 2020-2022
Funding £102,064
Project lead Professor Irene Higginson
Project manager Dr Anna Bone, Dr Clare Ellis-Smith
Organisation King's College London - Cicely Saunders Institute

Published March 2024


When nearing the end of their life, care home residents with chronic diseases can often find themselves in and out of hospital. This affects their quality of life and is distressing for both them and their families. Prof. Irene Higginson and Drs Anna Bone and Clare Ellis-Smith, from the Cicely Saunders Institute, initiated the Integrated Community Palliative Partnership (ICPP) project to investigate how to improve care for people in care homes with long-term illnesses.

We are hopeful that the future of care for older people with chronic conditions will be brighter

Prof. Irene Higginson

Integrated palliative care is a coordinated strategy that brings together all the people involved in caring for a person towards the end of their life. This model of care can help keep older people comfortable and out of hospital; however, UK care homes often don’t have the processes or systems in place to support this model of care for their residents with chronic conditions.

People with chronic conditions can end up in hospital as they near their end of life because their symptoms become harder to control. Once there, it can be much harder for them to recover enough to return to their care home. We wanted to understand how to improve care for this vulnerable group of people as they move towards the end of their lives. And so the ICPP project was born.

COVID-19 put our care homes in the spotlight

We set out to understand how palliative care for older people with advanced disease could be improved

 Dr Anna Bone

We were just about to start our project when the COVID-19 pandemic hit. This really shone a light on the struggles and pressure care homes can face. We seized this opportunity to collect timely insights about how they were coping and the level of care they were able to provide during this time. This crucial data was passed to NHS Improvement to advise them about what additional support care homes urgently needed. 

Our work during COVID-19 really highlighted how we need better processes, structures and systems in place to better monitor the health and well-being of care home residents. Without this, important information about residents’ health is sometimes missed. It was also clear there is a lack of integration with healthcare services, often making it an uphill battle for care homes to provide the right support, at the right time, for their residents.

Assessing the scope, feasibility and scalability of an ICPP

We set out to understand how palliative care for older people with advanced disease could be improved, so that we can put forward practical recommendations on how to update ways of working that better centre around individuals’ needs. The ICPP incorporated specialist palliative care, primary care, social care and nursing support.

Our study had multiple components. Firstly, we did a literature review on the common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions. 

Secondly, we did rounds of interviews with patient representatives, carers, GPs, family members and various other stakeholders, to hear about their experiences of palliative care in care homes and what they think would improve it. We then presented this information in a number of co-design workshops with patient and public representatives and health and social care professionals. This resulted in the development of an initial ICPP model with guiding principles of integrated palliative care, as well as lessons learnt from COVID-19 on strengthening the provision of palliative care.

Finally, we conducted economic modelling to examine the theoretical cost-effectiveness of the ICPP model in London.

The benefits of an ICPP

Integrated palliative care can help care staff feel more supported and enable them to provide improved end-of-life care for residents

Dr Clare Ellis-Smith

If we get the principles for an ICPP right, we can meet people’s needs better. For example, we can pick up distress and worsening physical symptoms much earlier which can reduce avoidable hospital admissions. Proper integrated palliative care can also help care staff feel more supported and enable them to provide improved end-of-life care for residents. 

All of these improvements in the provision of care have huge positive impacts on an individual’s quality of life. With the right support, we can help make someone’s final years much more comfortable. This is ultimately what we want to achieve with our ICPP.

Our economic modelling also showed that implementing ICPP could save the NHS money when the objectives of integrated care are achieved, as fewer people are admitted to hospitals. 

Demonstrating the impact of an ICPP

We’ve completed a small-scale demonstration of how care homes can implement the ICPP’s principles. We found that following these principles has the potential to improve care for older people nearing the end of their lives and be smoothly incorporated into care homes without having to make major changes to services. This is encouraging as it suggests integrated palliative care could be both scalable and sustainable.

Next, we need to gather larger-scale evidence on how best to put these changes into place and work out how to build support from commissioners and other services needed in these partnerships. Our preliminary evidence is positive and we are hopeful that the future of care for older people with chronic conditions will be brighter.