End of Life Care Resources

A new report on palliative and end-of-life care in the community has been published by the Queen’s Nursing Institute (QNI) and Marie Curie.

The report by the two charities is based on a national survey of health and care staff undertaken in 2023. The majority of survey respondents were community nurses. The findings reflect how palliative and end-of-life care is delivered today, and shines a light on the challenges being faced by nurses. People at end of life need high-quality holistic care and support but worryingly, 9 out of ten respondents to the survey reported being unable to meet the needs of the people they care for, or those close to them, at least in part.

Changes to skin integrity and damage to the skin can occur at the end of life (EOL), despite appropriate interventions that meet or exceed standards of care. It can also be difficult to determine which wounds can be prevented and which ones are unavoidable (Sibbald et al, 2010; Beldon 2011). It is therefore the role of the nurse and carer to consistently deliver the best end-of-life (EOL) care, support palliation of symptoms, and maintain optimal skin integrity. Best practice for EOL skin care is about maintaining skin integrity for as long as is possible, followed by a goal of a dignified death (Kennedy, 2016) in line with patient/family wishes. This article discusses factors associated with maintaining skin integrity, and how skin damage can be prevented and a skincare regimen managed in EOL patients.

Pressure injuries are sometimes considered to be due to a lack of good nursing care. However, it has been debated as to whether the development of some pressure injuries at the end of life is inevitable. More recently, the term ‘skin failure’, which occurs in dying patients, has been introduced in the wound care literature, and it is proposed that the presence of skin failure may make pressure injury inevitable. This article defines the theories around skin failure and presents the different terminologies used to describe skin damage typically found in the dying patient, such as the Kennedy ulcer and Trombley- Brennan terminal tissue injury (TB-TTI). It also discusses the importance of healthcare professionals being able to recognise that skin changes, which appear to be pressure injuries, are due to skin failure at the end of life and be able to differentiate between these and usual pressure injuries when planning and delivering care for these patients.

End of life care became the focus of media attention in 2013 when the Liverpool Care Pathway was found to be not fit for purpose. This article looks at the policy background to end of life care in the UK, as well as the current state of provision, from a community nursing perspective. It also focuses on pressure ulceration, a key complication for patients at the end of life, offering advice on how to approach skin care for this patient group. Finally, the author examines the implications for treatment of mental capacity legislation, and how concepts such as 'advanced decisions' and ethics affect nurses trying to treat patients at the end of life.

The Liverpool Care Pathway (LCP) is an integrated pathway developed to enhance the quality of end of life care for dying patients and their families. The purpose of this study was to introduce the LCP into a community setting and continually audit its use to provide statistical evidence as to whether the use of the pathway improved documentation in the three key areas of initial assessment and care, on-going assessment and care after death.

Acknowledgements:
Hertfordshire Community Nursing Team
West Hertfordshire Community Macmillan Team
Three GP Surgeries, Hertfordshire
Liz Garrood, End of Life Care Strategy Educator, Hertfordshire
Sarah Russell, Director of Education and Research, Hospice of St Francis, Hertfordshire.

Cheryl Manners, Team Lead, Community Nursing and Therapy, Hertfordshire.
Sharon Roberts, Community Macmillan Nurse, Palliative Care Service, Hertfordshire.

Article accepted for publication: February 2013