End of Life Care in Frailty: Rehabilitation

Clinical guidelines
Hover me to read more
Authors
British Geriatrics Society
Topics
Deconditioning & rehabilitation
End of life care
Authored on
Last updated
Published date

The aim of this guidance series is to support clinicians and others to consider the needs of frail older people as they move towards the end of their lives and help them to provide high quality care.

This chapter looks at maintaining independence and function in older people towards the end of life. Please click here to view the other chapters in this series.

Rehabilitation is a cornerstone of care of geriatric medicine, extending to older people with severe frailty. In the last phase of life, rehabilitation is essential in facilitating patient-centred goals, focusing on function and enablement. Living a normal life and maintaining independence for as long as possible become important routes to preserving dignity and a sense of self in the face of advancing illness.1

Rehabilitative palliative care integrates rehabilitation, enablement, self-management and self-care into the holistic model of palliative care.2 It provides an interdisciplinary framework through which all members of the team can enable older people living with frailty to participate as fully as possible in all aspects of their daily lives. It represents an important route for people to fulfill meaningful goals, maintain independence and dignity and to adapt constructively to the uncertainty and loss that is often intrinsic in the lived experience of advancing age and frailty at the end of life.3

Why is rehabilitation important?

Maintaining independence, normality and participation in everyday life are high priorities for people in older age and at the end of life. To enable us to support peoples’ personal priorities we first need to know what these are. Older people living with frailty have diminished functional homeostasis and ability to withstand illness without a loss of function, which places them at higher risk of sudden deterioration in their physical health or wellbeing. Evidence supports the safety and effectiveness of rehabilitative approaches to improve and maintain physical health and function in older people.4

Adopting a rehabilitative approach

Key principles3

Best practice initiatives

Person-centred goal setting

  • Work in partnership with people to actively identify their personal priorities and goals. Place these at the centre of your interdisciplinary support for older people living with frailty so all involved are aware of and working together to achieve these.
  • In every holistic assessment ask people:

- ‘What matters to you?’
- ‘What would you like to be able to do in the next few (months, weeks, days)?’

  • Openly acknowledge and plan for uncertainty. Utilise parallel planning2 to support people to ‘hope for the best and plan for the worst.’
     
  • Utilise outcome measures to assess a person’s goals such as Goal Attainment Scale (GAS)5 or G-AP-PC.6
     
  • Regularly review a person’s goals and adapt these if necessary if/when their condition or priorities change.

Focus on function

  • For older people living with frailty, function is an important indicator of both performance and wellbeing.

 

  • Ensure all members of the interdisciplinary team have a focus on a person’s ability to function including their mobility, activities of daily living and ability to participate in meaningful activities such as accessing their community. This includes considering how any symptoms or medications may be impacting on function.

 

  • Proactively recognising and responding to early changes in function can help reduce falls risks and reduce further functional deterioration.
  • Utilise a functional screen to establish a person’s baseline level of function.
     
  • Review function at each contact to proactively screen for and recognise a change in function.
     
  • Take appropriate actions to optimise people’s functional potential including early referral for physiotherapy and occupational therapy rehabilitation input.

Supported self-management

  • Ensure a consistent interdisciplinary approach which views older people living with frailty, and their family or carers, as equal partners and encourages them to play an active role in managing their health and well-being themselves.
    ​​​​​​​

  • Early supported self-management can help people to be more resilient and help to prevent crises.
  • Practice a ‘strengths-based approach’7 to identify each individual’s strengths and resources - including personal, community and social networks - by asking people:

- What’s going well for you right now
- What would you say are your strengths?
- What strategies do you use to cope?
 

  • ​​​​​​​Positively reinforce and build upon these.
     
  • ​​​​​​​Support people to use non-pharmacological (non-drug) approaches to self-manage symptoms such as breathlessness or fatigue.3


     
  • Empower people through knowledge by providing information about their condition, services that are available to support them and how to access these

 

Enablement

  • Empower people to have maximum choice and control over their own lives – through all members of the interdisciplinary team actively creating opportunities for people to choose what they want to do, to undertake what they can themselves and to provide just the right amount of support to meet their individual needs and preferences.
  • Adopt a ‘positive risk taking’ approach - which starts from a place or maximising opportunities for people and then balancing the positive benefits gained against the negative effects of attempting to avoid risk altogether.8
     
  • Always ask people if they need or would like any assistance before assisting them.
    ​​​​​​​

  • Where care or support is needed, always ask people how they would like this support and ensure it is delivered in a way that optimally enables people to do what they can for themselves.

References

  1. Evans CJ, Ison L, Ellis-Smith C, Nicholson C, Costa A, Oluyase AO, Maddocks M. Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review. Milbank Quarterly 2019;97(1):113-175.
  2. Tiberini R and Richardson H. Rehabilitative palliative care: enabling people to live fully until they die. A challenge for the 21st century. Hospice; 2015. ISBN:978-1-871978-91-9. Available at: https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/rehabilitative-palliative-care
  3. Tiberini R, Turner K, Talbot-Rice H, Rehabilitation in Palliative Care. In: Textbook of Palliative Care, R MacLeod, L Block editors. Springer; 2018. Available at:  https://doi.org/10.1007/978-3-319-31738-0_34-1
  4. Crocker T, Forster A, Young J, et al. Physical rehabilitation for older people in long-term care. Cochrane Database Syst Rev. 2013;2.
  5. Fettes L, Ashford S, Maddocks M. Setting and implementing patient-set goals in palliative care. 2018. Available at: https://www.kcl.ac.uk/cicelysaunders/research/studies/oacc/gas-booklet-2018-final.pdf
  6. Boa S, Duncan E, Haraldsdottir E, Letford A, Brabin E, Wyke S. Development, implementation and evaluation of a theory based goal setting framework for use in palliative care (G-AP-PC). BMJ Supportive & Palliative Care. 2014; 4. Available at: https://spcare.bmj.com/content/4/Suppl_1/A4.2
  7. Baron S, Stanley T, Colomina C, Pereira T. Strengths-based approach: Practice Framework and Practice Handbook. Department of Health and Social Care. 2019. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/778134/stengths-based-approach-practice-framework-and-handbook.pdf
  8. Morgan S, Williamson T. How can positive risk taking build dementia friendly communities? Joseph Rowntree Foundation. 2014. Available at: https://www.jrf.org.uk/sites/default/files/jrf/migrated/files/Positive-risk-taking-dementia-summary.pdf