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In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is a process being championed within health and social care, particularly since the publication of the UK Department of Health's 2008 End of Life Care Strategy. However, its implementation in dementia care is yet to be fully realised and can pose significant ethical and legal dilemmas for the generic and specialist workforce, the patient themselves, and their family or loved ones. Challenges may be attributable to inadequate communication, capacity issues, missed opportunities, and the perception that dementia is not a life-limiting illness. The aim of this paper is to highlight the benefits of ACP for individuals with dementia while appraising the recognised barriers to assist in developing some realistic recommendations for future practice. [ABSTRACT FROM AUTHOR]

Background: People with advanced neurological conditions (ANCs) face complex problems and needs that are often unrecognised and undertreated. Their last year of life may be characterised by unplanned hospital admissions and an unexpected death. A National End-of-Life Care Programme (NEoLCP) 2010 framework made recommendations to aid timely and appropriate end-of-life care for people with ANCs. Objectives: Assessment of key outcomes of a UK nurse-led palliative neurology service against the NEoLCP standards. Method: A retrospective study of clinical records of patients who died from an ANC under the care of the service from December 2006 to April 2012. Results: All 62 patients had multidisciplinary care coordinated by a key worker-a clinical nurse specialist (CNS) in palliative neurology. Mental capacity was assessed in 95% of cases, of which 95% had a documented advance care plan or best interest decision. The CNS had specific input regarding carer distress in 77% of cases. Mean hospital admissions were 0.9 per patient in the last year of life, compared with 3.5 nationally across all diagnoses. The service demonstrated better outcomes in other key areas, including place of death, with more patients dying at home or in the hospice compared with national figures. Conclusion: This service model fulfils key NEoLCP recommendations, as well as resulting in low hospital admissions and deaths. INSET: Box I. Definitions of advance care planning and best interest.... [ABSTRACT FROM AUTHOR]

The authors discusses developments in palliative care, particularly in Great Britain, as of February 2014. They focus on the importance of the electronic palliative care coordination systems (EPaCCS) in providing an effective way to enhance quality and integration at the end of life. Among the parties involved in EPaCCS implementation are the service providers, information technology (IT) system suppliers, and planners.

The author discusses her involvement in the Dying Matters Awareness Week in May 2015 set up by the National Council of Palliative Care in 2009 to encourage people to talk about death and dying. Topics cited include steps to make end-of-life experiences better such as writing the will, recording the funeral wishes and planning future care and support and their creation of a death cafe where health and social students can meet to stimulate conversations that focus on living and dying.