End of Life Resources

Identifying when a person with dementia is nearing the end of their life can be challenging. Conversations about future care and planning for end of life in the form of advance care planning should take place as soon as possible after the diagnosis of dementia to enable the person to have the cognitive ability to express their wishes and preferences. To do so in an informed way requires professionals to discuss prognosis and what symptoms they may experience as their condition progresses and plan accordingly. When such early discussions have not taken place there are resources available that can be used to inform family carers of these symptoms and also processes to hold personalised meetings to discuss decisions for care. This article uses a case example to present a family care consultation, informed by the ‘Comfort Care Booklet’ in advanced dementia.

Parkinson’s disease at the end of life can present unique challenges both for patients and those caring for them. This article offers a guide for community nurses to understand the complexities of Parkinson’s disease and the importance of managing end-of-life care. Parkinson’s disease progresses differently for each individual and, as it advances, symptom control, especially regarding pain, motor difficulties and non-motor symptoms can become increasingly difficult. Nurses play a critical role in managing these challenges, ensuring that patients receive optimal care tailored to their needs. This includes advance care planning, where nurses can facilitate discussions and provide psychosocial support to both patients and their families. Coordinating with an interdisciplinary team of healthcare professionals ensures a holistic approach to care, addressing physical, emotional, and spiritual needs. These key aspects are explored here, highlighting the crucial role that community nurses play in delivering compassionate, effective care at this complex stage of the disease.

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.

There are more than one million people living with chronic obstructive pulmonary disease (COPD) in the UK. COPD does not follow a predictable course and differs from person to person. It is often difficult to determine the stage that a person has reached in the condition: while some patients will present with a gradual decline, others may remain stable for years, and some will require hospital admission for respiratory support. The uncertainties around the nature and progression of COPD make decisions about end-of-life (EOL) and starting EOL care challenging. This article explores some of the indicators of decline in a person with COPD, including exacerbations, cognitive dysfunction, sarcopenia, depression and anxiety. It also discusses the importance of starting appropriate EOL discussion with patients, as well as the many benefits of multidisciplinary team working when it comes to recognising care needs and enhancing patients’ quality of life.

Caring for those who are dying and in the last days of life is a common aspect of caring for people in the community. While caseloads are time-pressured, stretched nurses can do a great deal to reduce any suffering at the end of life by providing optimal assessment and care. An important feature is that nurses first need to be able to identify when death is likely. They need sensitivity and to be able to build a therapeutic relationship with the patient and those significant to them. Nurses play a key role in providing and coordinating quality care and comfort, for which good communication skills are essential. Assessment and interventions to manage pain and symptoms, as well as helping to prepare patients and their families for death, are important. Community nurses can also direct family members to relevant resources and specialists, including those for bereavement.

This article reports on the monitoring of healing rates of fullthickness pressure ulcers at one care provider in the Midlands. This was an agreed measure that was part of the Commissioning for Quality and Innovation (CQUIN) incentive scheme for the CCG. It was an attempt to provide data to support the anecdotal reports that pressure ulcer healing rates had improved after the implementation of a pressure ulcer reduction scheme called the Midlands and East Pressure Ulcer Ambition in 2012. The healing times for full-thickness pressure ulcers were recorded at 40 and 80 days after being reported by the community care provider (a community interest company [CIC], providing NHS funded services). There were 138 patients included in the data collected over a one-year period in 2015. A total of 34% of the patients were healed or healing at 40 days. A total of 55% of patients were healed or healing at 80 days. Of the 138 patients who had a full-thickness pressure ulcer, 56 died (41%), 15% had deteriorating or static wounds at 40 days and 9% at 80 days. This demonstrates that the majority of full-thickness pressure ulcers progress to healing unless the patient is at the end of life. There should be a continued emphasis on preventing as many pressure ulcers as possible to reduce avoidable harm to patients.