Living fully until you die: where rehabilitation and palliative care come together
Rebecca Tiberini and Marie Cooper
Rehabilitative Palliative Care is a paradigm that is gaining momentum across hospices in the UK to create a shift in palliative care provision. Whilst at first glance combining rehabilitation and palliative care in the same phrase may seem a paradox, in practice their integration is leading to a new, more enabling model of support for people living with advanced progressive illness.
Before you read any further, pause for a moment and consider…what is most important to you in your life and what you would like to be able to do right up until you die?
These may feel like heavy questions but there are not many more significant. They strike at the heart of what is most important to us as people and hold the key to ensuring that the support we may each find ourselves requiring at the end of life is tailored to enable us to live meaningfully until the last moment.
Rehabilitative Palliative Care integrates rehabilitation, enablement, self-management and self-care into the holistic model of palliative care . It is about changing our approach to ask people who are seriously ill ‘What matters to you?’ rather than ‘What’s the matter with you?’ and, through questions such as those considered above, establishing their personal priorities as the basis of any support we provide.
For example if you ask Jana, a woman with advanced metastatic breast cancer what is ‘the matter with her’ she would tell you about her disease and her symptoms of pain and breathlessness. If you ask ‘what matters to you?’ Jana tells you about her husband and how she would like to be able to return home from the hospital to be with him but feels desperately worried that she will be a burden on him.
Research shows that priorities of people at the end of life focus on living a normal life and maintaining independence for as long as possible [2-8]. Daily routines such as washing, dressing, eating, cooking and shopping – activities which we take for granted in health - become important routes to preserving dignity and a sense of self in the face of advancing illness.
Rehabilitative Palliative Care supports peoples’ priorities for life and living through:
- Setting person-centred goals that reflect what is most important for each individual and reviewing these as their condition changes: for Jana to return home and be able to walk to her toilet without depending on her husband for support.
- Focusing on function rather than symptoms: optimising Jana’s pain and breathlessness not as an end in itself but so that she can undertake her activities of daily living and participate in meaningful activities.
- Providing a balance of enablement alongside care: where all members of the interprofessional team – including doctors, nurses, physiotherapists, social workers, occupational therapists and carers – actively support Jana to do what she can herself before offering assistance. This is essential to ensure we don’t unintentionally undermine a person’s independence by overcaring.
- Supported self-management: empowering Jana to make her decision to return home and to self-manage her refractory breathlessness.
Rehabilitative Palliative Care is not about promoting false hope or setting unrealistic goals of recovery. Instead, it provides an active support system to optimise people’s choice, dignity and independence. In today’s society where personal autonomy is paramount, ensuring palliative care provision is also rehabilitative is key to enabling people to live fully until they die.
Recognising the increasing evidence and demand for Rehabilitative Palliative Care, The St James Place Foundation agreed to support a grants programme facilitated by Hospice UK, providing £500,000 in funding. The programme will enable hospices to develop both expertise and capacity in providing Rehabilitative Palliative Care, and will thus contribute to the growing body of knowledge and practice experience about this.
Each of the sixteen hospices involved are focusing on different aspects of Rehabilitative Palliative Care. These range from designing new rehabilitative-focused roles; supporting teams to develop a rehabilitative approach to care and setting up a complete new service, right through to facilitating organisational culture change that embeds this ethos of care across their whole care provision.
Hospice UK recently hosted a workshop for the hospice project leads – an incredibly dynamic group of leaders all totally committed to the ethos of the Rehabilitative Palliative Care approach. Their work is now well underway and we will support them to disseminate their insights and achievements in early 2018.
About the authors
Rebecca Tiberini is a Specialist Palliative Care Physiotherapist and Therapies Services Manager at St Joseph’s Hospice, London. She co-authored the Hospice UK National Guidance on Rehabilitative Palliative Care and provides leadership, education and consultancy to realise this approach in practice.
Marie Cooper is a nurse and Practice Development Lead at the charity Hospice UK. Her role focuses on working with a range of national organisations such as the Department of Health and Macmillan Cancer Support to promote the delivery of high-quality and accessible palliative care for everyone, and promoting and supporting excellence in hospice care.
Related resources and references
- Rehabilitative Palliative Care – Enabling People to Live Fully Until they Die. Hospice UK 2015. https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/rehabilitative-palliative-care/resources-for-rehabilitative-palliative-care
- Reeve J, Lloyd-Williams M, Payne S, Dowrick C (2010) ‘Revisiting biographical disruption: exploring individual embodied illness experience in people with terminal cancer’. Health 14 178.
- Carter H, Macleod R, Brander P, McPherson K (2004) ‘Living with a terminal illness: patients’ priorities’. Journal of Advanced Nursing 45 (6) 611-20.
- La Cour K, Johannessen H, Scient M, Josephsson S (2009) ‘Activity and meaning making in the everyday lives of people with advanced cancer’. Palliative and Supportive Care 7 469-79.
- Johnston B (2010) ‘Can self-care become an integrated part of end of life care? Implications for palliative nursing’. International Journal of Palliative Nursing 16 (5) 212-4.
- Strohbuecker B, Eisenmann Y, Galushko M, Montag T, Voltz R (2011) ‘Palliative care needs of chronically ill nursing home residents in Germany: focusing on living not dying’. International Journal of Palliative Nursing 17 (1) 27-34.
- Cheville A (2001) ‘Rehabilitation of patients with advanced cancer’. Cancer 92 (Suppl 4) 1039-48.
- Cotterell P (2008) ‘Striving for independence: experiences and needs of service users with life-limiting conditions’. Journal of Advanced Nursing 62 (6) 665-73.
- Palliative care resources. https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/rehabilitative-palliative-care/resources-for-rehabilitative-palliative-care