Family carers providing support to a person dying in the home setting: a narrative literature review

Background: This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how\ud to best support them. Aim: The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home. Design: A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, ‘terminal care’, ‘supportive care’, ‘end of life care’, ‘palliative care’, ‘domiciliary care’ AND home AND death OR dying. Data sources: During April–May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focusing on family carers providing end-of-life care in the home and those published between 2000 and 2013. Results: A total of 28 studies were included. The overarching themes were family carers’ views on the impact of the home as a setting for end-of-life care, support that made a home death possible, family carer’s views on deficits and gaps in support and transformations to the social and emotional space of the home. Conclusion: Many studies focus on the support needs of people caring for a dying family member at home, but few studies have considered how the home space is affected. Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services

'A bed in the middle of nowhere': parents' meanings of place of death for adults with cystic fibrosis

As populations age and chronic conditions become more prevalent, an individual's ability to choose the location of their end-of-life care and death is increasingly considered important in the provision of good healthcare, with home implied as the 'best' place of death through UK government policy and specialist and voluntary palliative care services. However, considering meanings of place of end-of-life care and death is complex for young adults with life-limiting conditions where the disease course is variable and uncertain, and aggressive and palliative treatments are administered both at home and in hospital often until death. Although 'place' is a pivotal element in healthcare practice, research and policy, there has been little attempt to understand the meaning and importance of place in understanding experiences of care at end of life. Through analysis of in-depth interviews and letters received from parents of 27 young adults in England, Scotland and Wales who died from cystic fibrosis from 1999 to 2002 aged 17-36 years, key factors that influence families' meanings of place at end of life are presented. Both home and hospital deaths are reported, with no deaths in hospices. Preferences for possible locations of death are generally limited early in the disease course by choice of aggressive treatment, particularly lung transplantation. Rate of health decline, organisation and delivery of services, and relationships with specialist and general healthcare staff strongly influence parents' experience of death at home or in hospital, although no physical location was regarded a 'better' place of death. Meanings of, and attachment to place are mediated for families through these factors, questioning the appropriateness of a 'home is best' policy for those dying from life-limiting conditions. © 2009 Elsevier Ltd. All rights reserved

Understanding the relationship transitions and associated end of life clinical needs of young adults with life-limiting illnesses:a triangulated longitudinal qualitative study

Background: Care of young adults with life-limiting illnesses can often be complex due to the fact that they are growing and developing within the continuing presence of their illness. There is little research conducted nationally and internationally, which has examined the life issues of young adults or taken a longitudinal approach to understand such issues over a period of time. Aim: To gain clear understanding of one particular and pertinent life issue—relationship transition—occurring in the context of being a young adult with a life-limiting illness and the clinical needs arising from this. Design: This was a triangulated, longitudinal, qualitative study involving young adults with life-limiting illnesses and their significant others, namely, family members and healthcare professionals. Semi-structured interviews were conducted with participants and analysed using thematic analysis. Clinical case note reviews were also carried out. Setting/participants: A total of 12 young adults (aged between 17 and 23 years) from 2 hospices and 22 nominated significant others participated in a total of 58 interviews. Results: Thematic analysis revealed 4 main themes and 11 subthemes. The main themes were ‘Dependence dichotomy’, ‘In it together’, ‘Biographical uncertainty’, and ‘Conserving integrity’. These themes helped to establish the nature of relationship transitions that the young adult participants from the study experienced and additionally allowed insight into their possible needs at their end of life. Conclusion: This study has identified the nature of relationship transitions pertinent to young adults and has highlighted associated end of life clinical needs. This study can influence further research into the transitions and end of life needs of this particular patient group receiving palliative care, while informing the lacking evidence base which exists internationally

Patterns of diagnoses among children and young adults with life-limiting conditions: a secondary analysis of a national dataset

Background: Numbers of children and young people with life-limiting conditions are rising, and increasing lifespans require young adults with life-limiting condition to transit to appropriate adult services. Aim: To describe the prevalence of life-limiting condition in children and young adults by age, sex, diagnostic group, ethnicity and deprivation. Design: A secondary analysis of the English Hospital Episode Statistics dataset was undertaken to calculate prevalence per 10,000 population. Setting/participants: Individuals (040 years) with life-limiting conditions were identified within an English Hospital Episode Statistics dataset by applying a customised coding framework of International Classification of Diseases, 10th Edition, disease codes. Results: There were 462,962 inpatient hospital admissions for 92,129 individual patients with a life-limiting condition. Prevalence-byage group curve is U shaped with the highest overall prevalence in the under 1-year age group (127.3 per 10,000), decreasing until age 2125 years (21.1 per 10,000) before rising steeply to reach 55.5 per 10,000 in the 3640 -year age group. The distribution by diagnostic group varies by age: congenital anomalies are most prevalent in children until age 1620 years with oncology diagnoses then becoming the most prevalent. Conclusion: Non-malignant diagnoses are common in children and young adults, and services that have historically focussed on oncological care will need to widen their remit to serve this population of life-limited patients. The diagnosis determining a patients lifelimiting condition will strongly influence their palliative care service needs. Therefore, understanding the diagnostic and demographic breakdown of this population of teenagers and young adults is crucial for planning future service provision

A qualitative study of health care professionals' views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. MethodsA qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. ResultsTwenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff.Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic. Aim: To investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life. Design and data collection: Qualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total. Setting: General practices and community care settings in the East Midlands of England. Findings: The study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare. Conclusions: Advance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity. Future work: Attention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care. Funding: The National Institute for Health Research Health Services and Delivery Research programme