End of Life Care in Frailty: Spiritual and cultural issues
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 the religious, spiritual and cultural aspects that may influence appropriate end of life care. Please click here to view the other chapters in this series.
It’s more important to know what sort of person has a disease, than what sort of a disease a person has"
People living with frailty, especially those at the end of life, often have little physical reserve to draw upon. However, they may have huge cultural and spiritual reserves that can be liberated to improve their quality of life and enhance their wellbeing. As practitioners, our identification of these resources can be key to supporting people to maintain pleasure and optimism.
When considering cultural and spiritual support we more naturally speak of religious leaders and their communities, but we might also think of access to the natural world, pets, music, art and sexual activity - the things which people hold dear and can endure through life.
Our aim in co-creating a comprehensive care plan to support people living with frailty at end of life is to help people set down the actions that will improve their life and ease their death. The focus tends be on clinical interventions which can take the place of things that really matter to individuals and their families. It might be argued that we have no place to prescribe or detail these highly personal wishes, but we can encourage and enable people and their families to do that for themselves. We must offer encouragement and ask the question “where do you get your strength?”
It is important that we elicit the individual’s values and beliefs, not simply the doctrine or stereotypes of that particular group or faith. Spirituality and cultural attributes must not be confused with religion.
Giving permission to acknowledge and document the assets of the individual and the community they inhabit is important for the whole team engaged with the person, and is a truly person-centred aspect of clinical care.
Identifying community assets, such as groups, can also enhance our practice and wellbeing. These are often apparent to practitioners who work in the community, but can also include in-reach support to hospitals and care homes.
Religious faith considerations
For many people their religious faith is fundamental to the way they live their lives and see themselves, the world, and beyond. Every effort should be made to enable them to practice and engage with their faith leaders and community if they so wish. As practitioners, we should be aware of where these communities can be reached and ensure that every individual patient or resident receives support from them as required. All hospitals have Chaplaincy services who offer support to all religious denominations and many local mosques, temples and churches have in-reach services to visit members of their faith community if they are not able to attend in person.
Public Health England has produced Faith at end of life: A resource for professionals, providers and commissioners working in communities which details the specific considerations to be aware of at the end of life in the context of a person’s religious background.
Communication and connection
Engaging in these conversations can help to shape our communication, language and interventions; conversely, by inadvertently ignoring those things that make life meaningful for people, we can deny them pleasure and indeed sustenance, which can ease not only their journey to death but also offer strength to those that are important to them. Often these are pleasures that are shared with others and can either be experienced together or remembered with fondness, alleviating the focus on clinical or therapeutic interventions that are often an inconvenience or a burden.
The distress that can arise from not being able to enjoy the company of a much-loved pet, seeing the garden for a final time, or receiving the last rites of their particular faith can cause untold pain to both the person who is dying and their loved ones. The sense of pleasure and satisfaction for a practitioner who enables and supports these sources of strength is profound, and adds a dimension to their practice that should not be underestimated.