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Research project: Transitions between services at the end of life for older people: patient and provider perspectives - Dormant - Dormant

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Health professionals and families believe that there is often a mismatch between the services received and the experience that older adult patients would choose. Movement between plaices of care may not always be in the best interest of the patient or favour the best outcomes. Our proposed study will examine the reality underlying these beliefs, in a study of transitions – or movement between places of care- in the twelve months before death. Many people have more contact with services in their final year than at ant other time in their lives, and care required can be intensive and costly. Our proposed study is three parts and is focused on people who died with stroke, heart failure or lung cancer. The first part will examine how often and when older people with these diagnoses move between places of care in the last year of life. To do this, we will analyse linked hospital and death statistics for England. In the second part, we will look at the human stories behind the statistics we calculated in the first part. Interviews with patients and bereaved carers will tell us what transitions meant for the patients and their families. In the final part of the study, we will interview people who commission and provide services. Summaries of the patients’ and carers’ views from the second part will be used to stimulate discussion and give insights into the pressures faced by the people who can influence the transitions. At every stage of the research, services users are advising us on how to make our work relevant to their experiences. When the findings from the three parts of this study are put together, they will provide essential information for improving the organisation and delivery of care at the end of life for older adults.

More than two thirds of the UK population can expect to die when they are aged over 75 years, and the last year of life is a time of high service utilisation for older adults.

The NHS End of Life Care programme acknowledges that people will be transferred many times between different settings in their final years, months, days and hours. Hence commissioners need to understand how and why older people make transitions between services, and the relationship between transitions and older people’s health and well-being. This study considers three conditions, lung cancer, heart failure and stroke, which are the focus of current NHS policy, but differ in their disease trajectories and the provision of specialist end-of-life services.

The project aims to understand the patterns and causes of health service transitions and their association with older people’s experiences at the end of life. It has three phases, combining a quantitative analysis of routine linked data, interviews with patients and carers and a qualitative interview study with commissioners and providers of care. The research is being carried out in the North West and South Central NHS regions of England. Phase one maps transitions into and out of hospital at the end of life for older people in England and estimate the financial costs. Newly linked mortality data and Hospital Episode Statistics for England. 2001-2005 is being analysed, identifying demographic and diagnostic data associated with frequency of admissions before death and patterns of transitions for the three diagnostic groups.

Phase two involves interviews firstly with patients with lung cancer, heart failure and stroke and secondly with bereaved carers to explore the effect of the transitions quantified in phase one. Phase three consists of an interview study with 40 commissioners and providers of care, selected to represent the pathway from commissioners of health and social care, through the management of services, to care delivery in the home and hospital. Data provided by participants in phase 2 is being summarised into short clinical scenarios representative of differing transition patterns. These are used to elicit professional understanding of transitions at the end of life, the reasons behind different models of care operating, and the barriers and facilitators to delivering high quality, appropriate services.

This study provides the first national estimate of transitions and hospital resource use in the last year of life, enhancing our understanding patients’ experiences and the consequences of transitions, and provide insights into the perspectives of service commissioners and providers including the challenges that constrain their work. The synthesis of data from the component parts of the study are enabling us to clarify the implications of our findings for the NHS, and make evidence based recommendations for change.

Project team

Addington-Hall J , Lowson E

Dr Barbara Hanratty (Principal Investigator)
Louise Holmes, (University of Liverpool.)
Professor Michael Goldacre, (University of Oxford)
Dr Gunn Grande, (University of Manchester)
Professor Sheila Payne, (Lancaster University)

Project funder

National Institute of Health Research

Associated research themes

Palliative care.
Investigating need for, the organization and delivery of care.
Transitions.
Older people.
Carers

Related research groups

Complex Healthcare Processes
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