Symptom and Psychosocial Assessment and Communitcation Evaluation (SPACE)
Development and feasibility evaluation of a new tool to improve communication and palliative care for older people during uncertain recovery in community hospitals
This is a joint project between King's College London and Sussex Community NHS Foundation Trust. SPACEtoolkit is funded by an HEE/NIHR Senior Clinical Lectureship awarded to the lead investigator, Dr Catherine Evans. This project commenced in June 2016 and is scheduled to close in May 2021.
Why does this research matter?
People are living longer in the UK and many parts of the world. While this is welcome, it affects how we provide health care. More people are suffering and dying from chronic (i.e. long-lasting) illnesses rather than acute illnesses. Also, many older people have several chronic illnesses at the same time, such as heart failure and lung problems. The NHS is already struggling to provide the best care to this group. To make the matter of more concern the yearly number of deaths among older people is predicted to increase by 15% in the next 20 years.This will place an even greater strain on services.
Community hospitals are important in the care for older people. They provide services for people who want to remain close to home. There are around 320 community hospitals in England. Together these admit 120,000 people each year. When an older person is admitted to a community hospital, their potential recovery is often uncertain. Most people are aged 80 years or over and live with increasing frailty and multiple-illnesses and over 40% have dementia. Their admission is often unplanned following a marked decline in wellbeing from a seemingly minor health event.They are vulnerable to poor outcomes, notably continued decline leading eventually to end of life.
Uncertain recovery is a complex area of clinical practice. Staff in community hospitals may struggle to undertake good assessments because care needs are multiple, changeable and unpredictable. There are also failings in communication with patients and their families, which results in distress. Care co-ordination can also experience miscommunications, between staff working in the community hospital and visiting GPs. This is especially difficult when the outcome is uncertain, and staff do not know whether a patient will recover. In these situations, staff may struggle to clarify messages or they may not say anything immediately as they simply do not know what to say due to uncertain recovery. These failings lead to anxiety and distress for patients and their families, as well as hospital admissions that might be otherwise avoided.
What are we trying to do?
We want to find ways to improve the communication with and assessment of older people admitted to community hospitals, in order to reduce the anxiety and distress for them and their families or those close to them. We focus on older people where there is uncertainty as to their recovery or continued deterioration leading eventually to the end of life. We believe that this represents the area of greatest need. This also responds to national priorities for research on improving access to palliative care for all, training for staff to deliver palliative care, and the assessment and treatment of discomfort.
There are tools that support communication and palliative care assessment and management, but these have been developed in acute hospitals. Therefore, we do not know if or how well they would work in community hospitals. In community hospitals nurses provide most of the care with limited support from a medical doctor, usually a GP.
What will we do?
We want to develop and evaluate the feasibility of the new toolkit - called the SPACEtoolkit – the Symptom and Psychosocial Assessment and Communication Evaluation. The toolkit intends to reduce anxiety and distress for patients and families.
Design and methods:
The study has five stages:
- reviewing work already published, to make sure that we have the best tools and how they work
- analysing national data on community hospital admissions for older people for one year after their admissions, and death registrations, to understand what usually happens to them. This will help us understand for example, when, and where people died and to identify their priorities to improve communication on patient discharge.
- interviews with 30 patients/families and 20 clinical staff to test out and refine the main components of the toolkit, how to use them in clinical practice, and what the interviewees think are the main benefits for patients/families
- testing the feasibility of using the toolkit in 4 community hospital wards involving 80 patients, to explore patient/family benefits, processes for implementing in practice, patient participation and acceptability for patients and clinical staff.
- bringing all these findings together so that we can have a clear idea of the content of the SPACEtool kit, the best way to introduce and use it in practice, and how to evaluate it for the future.
The study will take place over 5 years. A group of lay members interested in improving palliative care for older people in community hospitals will work with us. The study will be an important step forward in transforming the care in community hospitals by providing staff with evidence-based tools to improve care. It will also enhance our understanding of care for people in this neglected situation, and provide a solid foundation for a future study to test how the tools we develop may work nationally.
This research builds on work from the OPTCare Elderly study and is informed by MORECare findings on methods to evaluate complex interventions in palliative and end of life care.
If you have any questions or would like to find out more about SPACEtoolkit, please contact Catherine Evans: T: +44 (0) 207 848 5579E: Catherine.firstname.lastname@example.org Alternatively, you can write to:Dr Catherine EvansDepartment of Palliative Care, Policy and Rehabilitation Cicely Saunders InstituteKing's College LondonBessemer RoadLondon SE59PJ
This report is independent research supported by Health Education England and the National Institute for Health Research (HEE/NIHR Senior Clinical Lectureship, Dr Catherine Evans, ICA-SCL-2015-01-001). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.