Beginning of the end

End of life care is a difficult topic to discuss. Kevin Jaffray suggests ways to start the conversation and provide better palliative options.

End of life care has many different elements to it, including palliative care, hospice, care for the carers, and much more, but underlying all the many aspects of care should be dignity and respect.

For many it can seem like a taboo subject, and few patients report having any discussions around end of life care with their GPs, despite the relevance in relation to their condition. We all die – so how do you introduce the conversation? It’s a discussion that needs to happen while there are options to put a comprehensive, person-centred care plan in place.

Such a complex area presents numerous dilemmas. Family values and ideals may differ as emotions run high, and there are all kinds of factors to take into account: cultural and socioeconomic influences, religious beliefs and core values, professional differences, political and financial restrictions – the list seems endless.

The National Council for Palliative Care (NCPC)’s guidance to doctors defines end-of-life care as helping people ‘with advanced, progressive, incurable illness to live as well as possible until they die’. It helps both the patient and their family throughout the last phase of life and into bereavement and as well as including management of pain and other symptoms – and just as important, it provides psychological, social, spiritual and practical support.

NCPC also recognises that ‘if end of life and palliative care were better and more widely understood, then this might enable better conversations between health and social care staff and people about death and dying, as well as services that meet their needs.’

Put simply, the principle aims of end of life care include:

• Placing the person at the centre of the caring process.

• Consulting and involving the person in decisions regarding their care.

• Recognising that in addition to their physical symptoms, people have emotional, social and spiritual needs that should be addressed by a multi-disciplinary team.

• Maintaining and enhancing quality of life for individuals and their families wherever possible.

• Providing bereavement support for families and carers after someone has died.

Making sure that these principles are met efficiently and professionally is a core value to all aspects of care and support. The process can be set in motion by collating a one-page profile that outlines what is most important to the individual receiving care: What are their expectations during the process, their fears, and their concerns? Who is closest to them and who might the individual perceive as being essentially involved in the care process? What are their significant needs, what kind of environment are they living in, and what are the key aspects of their quality of life?

‘It’s a discussion that needs to happen while there are options…’

If there is no supporting family and the socio-economic background is one that reflects a negative environment involving homelessness, a history of substance use, progressive underlying mental health condition, and no recognised community connections, should the approach to care be any different?

In all cases, treatment grounded in equality and diversity is essential, but addiction can have a double impact on end of life care – particularly when it involves taking medications to alleviate pain and other symptoms during treatment.

Social activist David Dellinger highlighted ways in which attitudes to substance use could have an impact on care. In some cases healthcare providers were heavily biased against ‘addicts’, while nurses had been reported to discount pain reports and under-treat pain in patients who had a record of substance use.

In many cases, those entering end of life care were not screened or treated for substance use or addiction issues, meaning that they did not receive the most appropriate treatment.

Various approaches can be adopted to improve the situation. First and foremost, clear and direct models of care, which identify potential risks and barriers, should be stored on a national database for easy access. This document could include personal testimonies from carers, family members and nurses involved in the end of life care process, showing which provision would be most effective.

This would also serve as a guide to care based on best practice, providing a space where innovative care approaches could be showcased. Relevant training should also be a necessity for all professionals in recognising signs of substance misuse, and in developing an understanding of the risks involved in inappropriate treatment.

Clear and direct strategies alongside effective support networks for family, friends and caregivers will not only improve practice and care, but enhance outcomes for all those involved in this difficult process.

Kevin Jaffray is an independent trainer and consultant

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