Hospices are being called upon to embed the practices and culture of rehabilitative palliative care more prominently in their services – so they can effectively support people with long term life-limiting conditions to live well, in addition to caring for people in the last days of life.
A new report launched today 'Rehabilitative Palliative Care: Enabling people to live fully until they die' guides and challenges hospices to place greater emphasis on promoting independence in the care they provide people living with terminal illness.
This approach is based on goal setting and self management to empower people to actively manage their condition themselves, as far as possible, and achieve their personal priorities and goals.
Rehabilitative palliative care can be brought to life in hospices in a number of different ways through small but significant changes to care practices which include:
- Identifying what is important to each person by actively exploring their personal goals for living.
- Supporting and encouraging people to take responsibility for their own health and wellbeing and teaching them strategies to achieve this.
- Creating an 'enabling culture' of support where people are given choice and opportunities to do things for themselves wherever possible.
Rehabilitative palliative care supports people living with terminal illness to maintain a normal daily routine, which can help improve their overall wellbeing.
Simple practices highlighted in the new report include: encouraging patients to get dressed in their own clothes every day, rather than pyjamas (to reduce the ‘sick role’ experience), sitting out of bed for all meals (to support safe swallowing and normality) or maintaining the amount of walking usually done at home (to keep active).
Dr Ros Taylor MBE, National Director for Hospice Care at Hospice UK, said:
‘For too long, healthcare has focused on solving problems and symptoms, rather than on what really matters to the person who is ill.
“A rehabilitation approach to palliative care is central to the person-centred ethos of hospice care, and this new report will encourage hospices to promote a culture that helps patients to thrive, not just survive, when faced with uncertainty and serious illness.
“The benefits of this approach are huge, not only for patients and their families but for hospices too, as they seek to respond to the challenges of supporting more people living longer with chronic conditions”.
Rebecca Tiberini, Specialist Palliative Care Physiotherapist at St Joseph’s Hospice in east London and co-author of the new report, added:
“Think for a moment about what is important in your life – the things you would like to be able to do for yourself right up until you die. This is what rehabilitative palliative care is about.
“It involves identifying what is important to each person, optimising their ability to do things for themselves and providing support in a way that maintains a sense of independence, choice and control. This might be as simple as walking up to the toilet on your own or maintaining your personal care. It might mean going to the park with your family or making your partner a cup of tea.
“When living with a serious illness, small things take on very big meaning. Rehabilitative palliative care puts people and families in the driving seat to enable and empower them to live life fully until they die.”
Some hospices have responded by introducing new initiatives. For example, St Christopher’s Hospice in London realised there were inconsistencies in care for some patients who were still capable of going to the gym but were still being offered assistance for basic tasks such as washing or dressing. As a result they took steps to create a multi-disciplinary culture where all members of the hospice team focused on empowering patients to be as independent as possible in all aspects of their daily care.
St Joseph’s Hospice in east London has set up the Empowered Living Team (ELT) where volunteers are trained to provide rehabilitative support for patients in their own homes and encourage them to adopt strategies to help achieve their personal goals. Often these goals centre on simple activities such as visiting the local park or pub – helping them to maintain connections with real life.
The new report encourages more hospices to adopt the principles and practices of rehabilitative palliative care. It also highlights the value and leadership role of allied health professionals to help ensure a rehabilitative approach becomes more embedded in hospice services and their organisational culture.
Rehabilitative palliative care is not an entirely new approach for hospices and dates back to the vision of the founder of the modern hospice movement – Cicely Saunders. However, it is an approach that hospices are called on to embrace more fully to be fit to meet the needs of the UK’s ageing population and better support growing numbers of people to live well with terminal illness and other long term health conditions.
In addition to the clear benefits for hospice patients and their families, rehabilitative palliative care can also help save costs for the wider health economy, by reducing both hospital admissions and the need for social or residential care.
Notes to Editor
- Rehabilitative Palliative Care: Enabling people to live fully until they die has been developed by Hospice UK, St Joseph’s Hospice, St Christopher’s Hospice and supported by the Burdett Trust for Nursing. A copy of the full report is available here
- Two short films about rehabilitative palliative care have been produced by St Joseph’s Hospice to accompany the report
- Hospice UK is the national charity for hospice care and the only membership body for organisations providing hospice care. We support and champion the work of more than 200 of these organisations across the UK.
- Hospices, and other organisations which provide hospice care, offer vital care for people with terminal or life-limiting conditions and also support their families and carers.
- For further information about hospice care visit our website www.hospiceuk.org or follow us on Twitter @hospiceukPA.
- Get all the latest news from the hospice and palliative care sector, as well as patient stories, on ehospice UK at: www.ehospice.com/uk This service is managed by Hospice UK. You can also follow ehospice news on Twitter at @ehospicenews.
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