New research funded by Marie Curie has highlighted the importance of identifying the support needs of family carers before dying patients are discharged from hospital so that carers are better prepared for end of life caregiving at home.
Researchers from the Universities of Manchester and Cambridge looked at barriers to supporting carers, which are often responsible for a breakdown of care at home and ultimately, for dying patients being unnecessarily readmitted to hospital.
Interviews with healthcare professionals and carers revealed an absence of formal procedures for identifying carers' support needs within current hospital practice. The researchers describe an "organisational focus" on patients' needs that tends to not take the separate support needs of carers into account. Carers were involved in discussions around discharge but in relation to patients' needs which overwhelmingly emphasised practical issues, such as equipment requirements, with little consideration of emotional needs.
Healthcare professionals felt that carers often had "unrealistic expectations" in terms of the realities of providing 24-hour care to a dying family member and lacked a clear understanding of the physical and emotional demands involved. They also explained that carers tend to overestimate the level of community support that they will receive once at home, with expectations around support at night being a particular difficulty.
Another barrier identified by healthcare professionals was that carers often had limited awareness that their loved ones were approaching end of life. In these cases, it was difficult for carers' concerns to be elicited and for healthcare professionals to put appropriate community support services in place.
Professor Gunn Grande, University of Manchester and Lead for End of Life Programme at the National Institute of Health Research Collaboration for Leadership in Applied Health Research and Care ) Greater Manchester (NIHR CLAHRC GM), said:
"Carers will often be very eager to get their loved ones home but they may not have a clear idea of what 24-hour caregiving entails. There is a crucial need for healthcare professionals to discuss carers' support needs before discharge to ensure that they are prepared for the challenges involved in caring for someone who is dying. But they need clear processes and resource in order to do this. Bearing in mind how crucial family carers are to making care at home following discharge work, we believe that systematic assessment of the support needs of carers should be a routine aspect of the discharge process."
Presenting the findings today at the Palliative Care Conference at the University of Salford, Dr Jane Collins, Chief Executive for Marie Curie said:
"Enabling successful discharge of terminally ill patients home and prevention of readmissions are key issues for our health service. Family carers clearly play a central role in this but these findings show that they often feel uninvolved and unsupported - the result being that they find themselves unprepared for the challenges of caring and are forced to go back to hospital when a crisis occurs. As well as the pain and distress this causes to patients and their families, readmissions place a huge unnecessary pressure on our health service. Recognising the personal burden involved in caring for a dying loved one and providing carers with the support they need and deserve is vital to providing to the compassionate, community model of care that we aspire to."
In response to the highlighted challenges, the study identified the utility of a Carer Support Needs Assessment Tool (CSNAT) for healthcare professionals, to help facilitate conversations with carers and prepare them for the realities of caring for someone at end of life. The study, which has been funded by the terminal illness charity Marie Curie and supported by NIHR CLAHRC for Greater Manchester notes that this approach was viewed positively by both carers and healthcare professionals. Potential benefits of using the approach included; giving carers permission to consider their own needs, assisting communication around support needs, and offering a 'way in' to difficult end of life discussions.
The research is published today in the journal Palliative Medicine. This coincides with the launch of Marie Curie's annual fundraiser, The Great Daffodil Appeal. Marie Curie is the UK's largest charitable funder of research in palliative and end of life care thanks to the donations it receives.
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Notes to editors
About Marie Curie
Please note - we are now called 'Marie Curie' (not Marie Curie Cancer Care)
Marie Curie - care and support through terminal illness
Marie Curie is the UK's leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.
For more information visit http://www.mariecurie.org.uk
Like us at http://www.facebook.com/mariecurieuk
Follow us on http://www.twitter.com/mariecurieuk
About NIHR CLAHRC GM
The National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Greater Manchester (NIHR CLAHRC GM) is a partnership between providers and commissioners from the NHS, industry, the third sector and the University of Manchester. Hosted by Salford NHS Foundation Trust, It aims to improve the health of people in Greater Manchester and beyond through carrying out research and putting it into practice. Find out more at http://www.clahrc-gm.nihr.ac.uk or follow us on Twitter: @CLAHRC_GM
The National Institute for Health Research (NIHR): improving the health and wealth of the nation through research.
Established by the Department of Health and Social Care, the NIHR:
- funds high quality research to improve health
- trains and supports health researchers
- provides world-class research facilities
- works with the life sciences industry and charities to benefit all
- involves patients and the public at every step
For further information, visit the NIHR website http://www.nihr.ac.uk
About the University of Cambridge
The mission of the University of Cambridge is to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence. To date, 98 affiliates of the University have won the Nobel Prize.
Founded in 1209, the University comprises 31 autonomous Colleges, which admit undergraduates and provide small-group tuition, and 150 departments, faculties and institutions. Cambridge is a global university. Its 19,000 student body includes 3,700 international students from 120 countries. Cambridge researchers collaborate with colleagues worldwide, and the University has established larger-scale partnerships in Asia, Africa and America.
The University sits at the heart of the 'Cambridge cluster', which employs 60,000 people and has in excess of £12 billion in turnover generated annually by the 4,700 knowledge-intensive firms in and around the city. The city publishes 341 patents per 100,000 residents.
About The Palliative Care Conference
The Palliative Care Conference, held at the University of Salford's Adelphi House on 1 March, features expert speakers from across the health and social care sectors discussing the best ways to provide high quality, compassionate services for those nearing the end of life.
The conference comes as the Office for National Statistics found 37 per cent of people whose relatives died in hospital said their loved ones were not given enough choice about their end of life care.
More people are dying in hospital than ever, with each costing the NHS £4,500, and an ageing population means even greater pressure will be put on the system.
Speakers at the event include Dave Garbutt, Lecturer in End Of Life Care at the University of Salford; Eleanor Sherwen, Professional Lead for Palliative and End of Life Care at the Royal College of Nursing; and Dr Jane Collins, Chief Executive of Marie Curie.
Journal
Palliative Medicine