Adjusting to the caregiving role: the importance of coping and support.

BACKGROUND: Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development. METHOD: One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients. RESULTS: Caregivers' existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding form family and friends. CONCLUSIONS: The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.

How common are palliative care needs among older people who die in the emergency department?

OBJECTIVE: To determine the prevalence and nature of palliative care needs in people aged 65 years or more (65+) who die in emergency departments (EDs). METHODS: This was a retrospective analysis of routine hospital data from two EDs in South London. Patients aged 65+ living in the hospitals' catchment area who died in the ED during a 1 year period (2006-2007) were included. Palliative care needs identified by diagnosis and symptoms, and problems likely to benefit from palliative care documented in clinical records 3 months prior to the final ED attendance were extracted. RESULTS: Over 1 year, 102 people aged 65+ died in the ED, frequently following an acute event (n = 90). 63.7% presented out of hours. 98/102 were admitted by ambulance, over half (n = 59) from home. Half (n = 50) had attended the same ED or been admitted to the same hospital in the previous 12 months. Over half (58/102) presented with diagnoses that signalled palliative care need. Of these, 29 had recorded symptoms a week before death and 28 had complex social issues 3 months prior to death. Only eight were known to palliative care services. CONCLUSIONS: There is considerable palliative care need among older people who ultimately died in the ED, of whom only a minority were known to palliative care services in this study. Previous ED and hospital admission suggest opportunities for referral and forward planning. More older people in need of palliative care must be identified and managed earlier to avoid future undesired admissions and deaths in hospital.

Provision of palliative care for chronic heart failure inpatients: how much do we need?

BACKGROUND: Clinical guidance recommends early CHF palliative care intervention, but the magnitude of need is unknown and evidence-based referral criteria absent.This study aimed to: 1) Measure point prevalence of inpatients appropriate for palliative care. 2) Identify patient characteristics associated with palliative care appropriateness. 3) Propose evidence-based clinical referral criteria. METHODS: Census: all adult medical inpatient files in a UK tertiary teaching hospital were reviewed, identifying patients with CHF as a reason for current admission, using NYHA stage 3/4 classification, cross referenced with existing ECHO data. Each CHF patient was classified according to appropriateness for palliative care against a definition of unresolved pain and/or symptoms and/or psychosocial problems 7 days post admission. RESULTS: Three hundred and sixty-five patient files were reviewed, and 28 clinically identified as having CHF. Of these, 11 had confirmed unpreserved ejection fraction,16 of the 28 patients were appropriate for palliative care. Of the total inpatient population reviewed, 10 (2.7%) had both confirmed ejection fraction 45% also require palliative care. Our conservative criteria suggest a point prevalence of 2.7% of patients having both ejection fraction

Improving district nurses' confidence and knowledge in the principles and practice of palliative care.

AIM: This paper is a report of part of an evaluation of the impact of a national palliative care education and support programme on the knowledge and confidence of members of district nursing teams. BACKGROUND: District nursing teams are the mainstay of 'hands on' provision of care at home. In recognition of their central role, the English Department of Health commissioned a national palliative care education programme as postregistration education had been limited. METHODS: The evaluation, conducted between 2002 and 2004, had a mixed methods design. In the summative component, 1280 nurses were randomly selected from eight cancer networks to receive postal questionnaires 1 year apart, before and after the educational intervention. Changes in scores were calculated and a multiple regression analysis undertaken to identify predictors of improvement in confidence in competence and knowledge. The formative component involved qualitative interviews with a sub-sample of 39 district nurses participating in the programme. FINDINGS: Nurses who responded in both years (374/32%) were included in the analysis. There was a small statistically significant increase in confidence in palliative care competency and knowledge after participation in the educational programmes. Nurses without district nursing qualifications and who had never worked in specialist palliative care had the largest improvements in scores. Qualitative data supported these findings. CONCLUSION: The findings suggest that the education programme led to improvements in self-reported district nursing confidence in palliative care competencies and knowledge; it is likely that the baseline level of palliative care confidence in competency and knowledge has as a result been raised nationally.

Palliative care services in England: a survey of district nurses' views.

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.

Lutrol gel: a potential role in wounds?

Excoriated skin from malignant wounds or from their effluent are uncommon but difficult situations. Many preparations are available that may relieve discomfort; however, difficulties arise because such wounds often occur in areas where dressings are difficult to apply and keep in place. Lutrol gel is a thermoreversible gel, first reported as a potentially useful base substance by MacGregor in 1994. We report three cases where lutrol gel appeared to reduce discomfort, improve functional ability, and quality of life for the patient. We also discuss other potentially useful agents for similar situations.

Prevalence and severity of pruritus and quality of life in patients with cutaneous T-cell lymphoma.

CONTEXT: Cutaneous T-cell lymphoma (CTCL), although rare, is associated with a significant symptom burden. Pruritus appears to be one of the most prominent and disturbing symptoms. OBJECTIVES: To describe the prevalence and severity of pruritus and quality of life (QOL) in patients with CTCL. METHODS: Patients with CTCL able to complete two questionnaires were invited to complete a visual analogue scale for itch (VAS(itch)) and the Skindex-29. Prevalence of pruritus, mean score, and SD were estimated for the VAS(itch) and Skindex-29, and the Pearson's correlation coefficient was calculated to evaluate the relationship between severity of pruritus and QOL. RESULTS: One hundred patients were recruited (mean [SD] age 57.9 [12.9] years, range 30-86 years). Eighty-eight percent reported pruritus in the preceding four weeks, 46% indicating that it was often or always a problem. The mean (SD) of VAS(itch) (n=92) was 3.2 (3.2), range zero to 10. The mean (SD) total Skindex-29 score was 43.3 (27.7). More advanced disease stage was associated with poorer QOL. The Skindex-29 correlated strongly with the VAS(itch) (Pearson's correlation coefficient=0.72, P<0.001). CONCLUSION: All aspects of QOL are affected in CTCL. Pruritus is a common and troublesome symptom. A more advanced disease stage and more severe pruritus symptoms were associated with poorer QOL in this study.

How common are palliative care needs among older people who die in the emergency department?

OBJECTIVE: To determine the prevalence and nature of palliative care needs in people aged 65 years or more (65+) who die in emergency departments (EDs). METHODS: This was a retrospective analysis of routine hospital data from two EDs in South London. Patients aged 65+ living in the hospitals' catchment area who died in the ED during a 1 year period (2006-2007) were included. Palliative care needs identified by diagnosis and symptoms, and problems likely to benefit from palliative care documented in clinical records 3 months prior to the final ED attendance were extracted. RESULTS: Over 1 year, 102 people aged 65+ died in the ED, frequently following an acute event (n=90). 63.7% presented out of hours. 98/102 were admitted by ambulance, over half (n=59) from home. Half (n=50) had attended the same ED or been admitted to the same hospital in the previous 12 months. Over half (58/102) presented with diagnoses that signalled palliative care need. Of these, 29 had recorded symptoms a week before death and 28 had complex social issues 3 months prior to death. Only eight were known to palliative care services. CONCLUSIONS: There is considerable palliative care need among older people who ultimately died in the ED, of whom only a minority were known to palliative care services in this study. Previous ED and hospital admission suggest opportunities for referral and forward planning. More older people in need of palliative care must be identified and managed earlier to avoid future undesired admissions and deaths in hospital.

Meeting the communication and information needs of chronic heart failure patients.

There is a lack of evidence on how best to meet policy guidance in fulfilling the information needs of patients with chronic heart failure (CHF) and their families. We aimed to generate guidance for appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participants were 20 CHF patients (New York Heart Association Functional Classification III, III-IV, and IV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carers severely lacked understanding of CHF and its symptoms. None had discussed disease progression or advanced care planning with staff. Although patients expected honest discussion of disease implications, data from clinicians described an unwillingness to disclose poor prognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first study to integrate cardiology, palliative care, and patient and family views to develop feasible recommendations on meeting information needs. Three recommendations for hospital-based clinical practice were generated from the data: (1) improved methods of providing information; (2) introduction of mutual education and joint working; and (3) development of care pathways and referral criteria.

Psychological, social and spiritual distress at the end of life in heart failure patients.

PURPOSE OF REVIEW: Chronic heart failure patients have palliative care needs that include psychosocial and spiritual support, particularly towards the end of life, when breathlessness and resultant immobility become increasingly severe. This review informs clinicians of the importance of understanding, assessing and managing patients' psychosocial and spiritual needs. RECENT FINDINGS: The high prevalence of depression (9-77.5%) among chronic heart failure patients is well documented. Clinical assessment and treatment of depression and anxiety are key to good patient care, although no model for assessment has been agreed. Evidence suggests that social support and spiritual belief are important coping resources, but there is a dearth of research into social and spiritual distress in chronic heart failure. Patients rarely access social services support, and family carers experience considerable burden. Little is known about how psychosocial and spiritual variables influence each other, and the impact of social and spiritual distress on outcomes such as quality of life. SUMMARY: We hope this review will inform cardiac and palliative care staff about the prevalence of psychosocial and spiritual distress in advanced chronic heart failure, and highlight the importance of their assessment and management. There is an urgent need for research in this field, including the rigorous development and evaluation of service models and nonpharmacological interventions.

Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UK.

OBJECTIVE: To describe current provision of specialist palliative care for chronic heart failure (CHF) patients, and explore challenges, referral criteria and recommendations to inform service development. METHOD: Semi-structured qualitative telephone survey of key professionals involved in CHF palliative care in the UK. RESULTS: Twenty telephone interviews were conducted with staff from 17 services comprising three main types: hospital-based (n = 7), community-based (n = 6) and hospice-based (n = 4). The main recommendations made were to establish mechanisms for joint working between palliative care and cardiology; to ensure that stakeholders are involved from the outset of service planning; and to involve community heart failure nurses in service provision. Referral guidelines were collected from four services, covering diagnostic, symptomatological, psychosocial and team-related criteria. CONCLUSIONS: Information regarding existing services' challenges, recommendations and referral systems is essential when designing a new service, maximising feasibility and acceptability. This study design is of particular value when descriptions and evaluations of service models are lacking in the literature. The survey gives much-needed depth and detail to the types of services currently providing palliative care to CHF patients across the UK.

Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't".

BACKGROUND: Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life. AIMS: (1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues. DESIGN: Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III-IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians. SETTING: A tertiary hospital in London, UK. RESULTS: Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified. CONCLUSIONS: The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.