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

9th October 2023

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.

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. The researchers 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

Researcher Dr Anna Bone said “We set out to understand how palliative care for older people with advanced disease could be improved. 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.

The benefits of an ICPP

Researcher Dr Clare Ellis-Smith said “Integrated palliative care can help care staff feel more supported and enable them to provide improved end-of-life care for residents. 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.

This work was funded by the Dunhill Medical Trust and Cicely Saunders International.

Bayly J, Bone AE, Ellis-Smith C, Tunnard I, Yaqub S, Yi D, Nkhoma KB, Cook A, Combes S, Bajwah S, Harding R, Nicholson C, Normand C, Ahuja S, Turrillas P, Kizawa Y, Morita T, Nishiyama N, Tsuneto S, Ong P, Higginson IJ, Evans CJ, Maddocks M. Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review. BMJ Open. 2021 Dec 1;11(12):e048417. doi: 10.1136/bmjopen-2020-048417. PMID: 34853100; PMCID: PMC8638152.