No / Fatigue is a complex symptom commonly experienced by people with life-limiting illnesses. It has been identified in patients with, for example, cancer, heart failure, respiratory conditions, acquired immunodeficiency syndrome and renal failure. It is often rated by patients as having a greater effect on quality of life than pain. This article will explore the manifestations and consequences of fatigue. It will propose a minimum standard for its assessment and management and describe the implementation and evaluation of an audit, conducted in a hospice environment, designed to evaluate achievement of this standard. Although this audit was carried out in a hospice setting, the aim of the article is also to raise awareness of fatigue in all healthcare settings and to improve the assessment of this debilitating symptom.

No / Depression in patients receiving palliative and end-of-life care is difficult to distinguish from grief and sadness. However, there are some important distinctions and it is a clinical condition that is treatable and should not be considered a necessary or normal part of the dying process. This article examines the nature of depression and describes the stress vulnerability model of depression, linking it to recent developments in the neurobiology of depression. It also discusses how to distinguish depression from other symptoms that patients may be experiencing.

No / This article presents a review of key issues around caring for people in the last hours and days of life. The aim is that community nurses will be able to support patients and families, and to provide and explain decisions and interventions to promote comfort and dignity based on current evidence.

No / Laura Middleton-Green, lecturer and researcher in palliative and end of life care, writes about how attitudes to death influence care of the dying.

Yes / The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

No / Complete : FC 16. We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.

No

Yes

End-of-life care (EOLC) has become a significant area of expertise in the intensive care unit (ICU). Critical care nurses are the primary caregivers of patients in the ICU and they provide EOLC for patients and families daily. Nurses have portrayed EOLC as difficult and demanding work; yet, they have also described their experiences of providing EOLC as rewarding, gratifying, and a privilege. The purpose of this study was to explore nurses’ meaningful experiences with providing EOLC for patients and families in the context of the ICU. Van Manen’s approach to interpretive phenomenology was used. Unstructured face-to-face interviews were conducted with six registered nurses who were employed in a medical/surgical tertiary care ICU. The interviews were audio-recorded, transcribed, and analyzed. The essence of nurses’ meaningful experiences in providing EOLC was ‘being able to make a difference’. For the nurses, being able to make a difference reflected their efforts to create a good death for the dying patient and their family. The nurses had to navigate a variety of challenges that affected the creation of a good death, however, they made it work by building relationships quickly with families, taking care of themselves, and recognizing it’s a privilege to provide EOLC. These research findings contribute to an expanding body of knowledge and understanding with regards to nurses’ role with the provision of EOLC in the ICU.

Bakgrund och problemformulering: Vård i livets slutskede innebär att vården övergår från att vara livsförlängande till att vara lindrande. Vården kan pågå från dagar till månader och det är viktigt att sjuksköterskan anpassar vården utifrån patientens hälso- och livssituation. Sjuksköterskan ska erbjuda patienten en säker och evidensbaserad vård som utgår från patientens aktuella behov och önskemål. Syfte: Syftet är att belysa sjuksköterskans erfarenheter av vård i livets slutskede i hemmet. Metod: En litteraturöversikt enligt Friberg gransknings- och analysmetod. Resultat: Resultatet presenteras i två teman och fem subteman. Teman som identifierades var att skapa en vårdande relation vid vård i livets slutskede och sjuksköterskas roll vid vård i livets slutskede i hemmet. Slutsats: Det krävs att sjuksköterskan har kompetens, kunskap och engagemang för att kunna erbjuda patienten en god vård i livets slutskede. Trots att vård i hemmet blir allt vanligare inriktar sig den aktuella grundutbildningen för sjuksköterskor i stor utsträckning från att vårda på sjukhus. / Background and problem formulation: Care in the final stages of life means that the care transitions from being life-extending to being palliative. The care can last from days to months and it is important that the nurse adapts the care based on the patient's health and life situation. The nurse must offer the patient safe and evidence-based care based on the patient's current needs and wishes. Aim: The aim is to illustrate the nurse's experiences of end-of-life care at home. Method: A literature review according to Friberg's review and analysis method. Results: The results are presented in two themes and five sub-themes. Themes that were identified were to create a caring relationship in end-of-life care and the role of nurses in end-of-life care at home. Conclusion: It is required that the nurse has the competence, knowledge and commitment to be able to offer the patient good care in the final stages of life. Despite the fact that home care is becoming more common, the current basic education for nurses largely focuses on nursing in hospitals.