Terminal care

The authors reflect on the importance of learning and development for transforming dementia and end-of-life care. Topics discussed include dependency of quality of dementia care on care providers including registered practitioners, support staff and informal carers, focus on person-centred care and building the leadership skills and confidence to influence care given by diverse and multiprofessional team.

Optimal palliative care cannot be realized unless nurses have a full understanding of what the patient’s family is experiencing. There is a gap in nursing knowledge related to informal care and ethnic minorities. The aim of this retrospective qualitative exploratory study was to investigate the experiences of Bangladeshi informal carers living in the UK, associated with caring for a dying relative. Semi-structured interviews using an interpreter were carried out and patient notes were examined. Four categories emerged from the data: caring, support, communication, and home and family.

BACKGROUND: Many terminally ill patients want to die at home. Family carers are fundamental to achieving this, but often feel anxious and unprepared for the role. Supporting them is vital in palliative care.

AIM: To explore the experiences of carers of patients dying at home, in particular their expectations and preparedness for the dying process.

METHOD: The study followed a qualitative approach. In-depth, semi-structured interviews with 15 carers were carried out.

The delivery of services and benefits to people supporting older and disabled relatives and friends depends largely on their identification within constructs of ‘care-giving’ and ‘carer’. Those who are married or living with a partner may be particularly resistant to adopting the identity of ‘care-giver’ or ‘care receiver’. This paper investigates the circumstances of couples and their adoption of carer identities, drawing on a study of the financial implications of a partner's death.

The aim of this study was to explore the lived experience of palliative nursing care for different generations of a migrant family in the New Zealand context. Methodology used was an intrinsic case study. The twin threads of the family's region and their immigration experience influenced their experiences and their ways of coping in the four domains of family relationships, the support they received from their community, their ability to communicate, and their relationship with palliative care services.

The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community.

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining.

This article explores the role of the district nurse in supporting family and friends who act as informal carers for patients who wish to die at home. The district nurse can support carers by promoting patient comfort, assessing carer needs, using communication and counselling skills, providing timely information, planning for anticipated needs, and co-ordinating and liaising with appropriate services and professionals. This requires the district nurse to develop a trusting carer-nurse relationship.

Background: This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Context: A number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.

Objectives: The aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.