A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.     

Palliative care in nursing homes: exploring care assistants' knowledge

Aim.  To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context.
Background.  In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent.
Method.  Questionnaire to CAs in 48 of 91 private nursing homes in one UK region.
Findings.  A population of 1135 CAs were targeted with a response rate of 45% ( n  = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes.
Conclusion.  Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.     

Minimum dataset activity for hospice and hospital palliative care services in the UK 1997/98

This study reports on the third in an annual series of surveys covering England, Wales, Scotland and Northern Ireland on the activity of palliative care services. This report concentrates on inpatient (hospice and hospital) services. All 640 known UK palliative services were sent a standardized questionnaire asking about the characteristics and numbers of patients cared for. Results were analysed for those services primarily for adults. From the 189 inpatient units (2955 beds) there was an 84% response rate in total, but the response to many of the questions was lower than this. Sixty per cent of services recorded 24,362 new patients, and about 50% provided details showing that 96.7% patients had cancer, and one-third were aged under 65 years. This is higher than the national distribution of cancer deaths where 24% are under 65 years. Conversely, only 7% were in the over 84 age group, which has 14% of cancer deaths. Most patients (73%) were admitted from their own home. Half of the admissions ended in death, and the majority of discharges were to the patient's own home. The mean length of stay was 13.1 days, with larger units tending to have a longer length of stay. Forty per cent of admissions were for one week or less (2.3% of patients died on the day of admission) and 15% were for more than three weeks. Bed occupancy varied between 99.7 and 48.9%. Responses were received from 74% of the 326 hospital support services, although again many questions were answered by less than half of those eligible to do so. Details of 37,194 new patients were reported (5.9% did not have cancer, although there was a wide range between services). Patients typically had four contacts with the service, although almost a quarter were single contacts. Three-quarters of the contacts were by a clinical nurse specialist. National estimates suggest that of the 155,000 patients dying of cancer in the UK each year 27,600 (18%) die in a hospice. There are 39,000 new hospice admissions each year and about 100,000 patients have contact with a hospital support service. Overall, the national provision of palliative care is increasing but there are groups who still appear to be missing out on palliative care, especially older people. Increasingly, patients appear to be admitted to a hospice earlier in care and are discharged home.     

Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data

Haematological malignancies are complex diseases, affecting the entire age spectrum, and having marked differences in presentation, treatment, progression and outcome. Patients have a significant symptom burden and despite treatment improvements for some sub-types, many patients die from their disease. We carried out a systematic review and meta-analysis to examine the proportion of patients with haematological malignancies that received any form of specialist palliative or hospice care. Twenty-four studies were identified, nine of which were suitable for inclusion in the meta-analysis. Our review showed that patients with haematological malignancies were far less likely to receive care from specialist palliative or hospice services compared to other cancers (Risk Ratio 0.46, [95% confidence intervals 0.42-0.50]). There are several possible explanations for this finding, including: ongoing management by the haematology team and consequent strong bonds between staff and patients; uncertain transitions to a palliative approach to care; and sudden transitions, leaving little time for palliative input. Further research is needed to explore: transitions to palliative care; potential unmet patient needs; where patients want to be cared for and die; existing practices in the delivery of palliative and end-of-life care; and barriers to specialist palliative care and hospice referral and how these might be overcome.     

Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals

OBJECTIVES: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. DATA SOURCES: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997-October 2003) was also hand-searched. STUDY SELECTION: Systematic search for studies, reports and policy papers written in English. DATA EXTRACTION: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. RESULTS: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. CONCLUSIONS: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.     

A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to end-of-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions. This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care.     

Bereaved carers' views of a hospice at home service

INTRODUCTION: In recent years, there has been an increase in specialist palliative care services in the home. Despite this, there have been relatively few published evaluations of such care. METHODS: This is a qualitative study which used semistructured interviews to explore bereaved carers' views and experiences of a hospice at home (HAH) service in the East Midlands, UK. Eleven interviews were conducted and analysis followed the framework approach. RESULTS: Carers' views were divided into four themes: caring for someone at home; formal care provided by HAH; access to out-of-hours care; and provision of specialist equipment. CONCLUSIONS: Bereaved carers generally gave very positive accounts on care delivered by the HAH service. Shortcomings identified were the provision of out-of-hours care and the untimely supply and removal of specialist equipment. It is suggested that bereaved carers provide useful insights for qualitative evaluations of end-of-life services delivered in the home.     

Registered nurses’ knowledge,attitudes and beliefs about end-of-life care in non-specialist palliative care settings: A mixed studies review

AimThe aim of this study was to describe, evaluate and synthesise the literature on registered nurses’ knowledge, attitudes and beliefs towards end-of-life care in adult non-specialist palliative care settings.BackgroundLittle is known about the knowledge, attitudes and beliefs of Registered Nurses working in non-specialist palliative care settings about end-of-life care.DesignA mixed-methods systematic review and narrative synthesis was conducted (PROSPERO Registration No: CRD4202148114). Five databases (Medline, CINAHL, PubMed, PsycINFO and Web of Science) were searched from inception to August 2020. Study quality was assessed using the Mixed Methods Appraisal Tool.ResultsNineteen studies met the inclusion criteria. Registered nurses in non-specialist palliative care settings demonstrated good knowledge of pain symptoms and management and positive attitudes towards caring for dying patients and their families. Knowledge deficits were identified in the psychosocial and spiritual aspects of end-of-life care and registered nurses reported negative attitudes towards communication about death. Only five of the included studies explored registered nurses’ beliefs towards end-of-life care.ConclusionsThere is a need to enhance palliative care education in clinical practice settings and in undergraduate programs to improve registered nurses’ knowledge, attitudes and beliefs about end-of-life care. Future studies that use reliable and validated methods to measure registered nurses’ beliefs about end-of-life care should be conducted.Tweetable abstractRNs in non-specialist palliative care settings want more education on pain management & greater knowledge on communicating about death/dying.