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General Practitioners' use and experiences of palliative care services: a survey in South East England.
Background:
The role of the General Practitioner (GP) is central to community palliative care. Good liaison between the different professionals involved in a patient's care is extremely important in palliative care patients. In cases where GPs have previously been dissatisfied with palliative services, this may be seen as a barrier to referral when caring for other patients. The aim of this survey is to investigate the use and previous experiences of GPs of two palliative care services, with particular emphasis on barriers to referral and to explore issues surrounding the GP's role in caring for palliative patients.
Methods:
Design: Descriptive postal survey of use and experience of palliative care services with particular emphasis on barriers to referral. Setting: One Primary Care Trust (PCT), south London, England, population 298,500. Subjects: 180 GPs in the PCT, which is served by two hospice services (A&B).
Results:
An overall questionnaire response rate of 77% (138) was obtained, with 69% (124) used in analysis. Over 90% of GPs were satisfied with the palliative care services over the preceding two years. Two areas of possible improvement emerged; communication and prescribing practices. GPs identified some patients that they had not referred, most commonly when patients or carers were reluctant to accept help, or when other support was deemed sufficient. Over half of the GPs felt there were areas where improvement could be made; with clarification of the rules and responsibilities of the multi disciplinary team being the most common. The majority of GPs were working, and want to work with, the specialist services as part of an extended team. However, a greater number of GPs want to hand over care to the specialist services than are currently doing so.
Conclusions:
A large number of GPs were happy with the service provision of the palliative care services in this area. They suggested that 3 out of 4 terminally ill patients needed specialist input. Views of services were largely positive, and reasons for non referral were unrelated to previous experience of the specialist services.
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A randomized, double-blind comparison of OROS hydromorphone and controlled-release morphine for the control of chronic cancer pain
Background:
Long-acting opioid formulations are advocated for maintaining pain control in chronic cancer pain. OROS hydromorphone is a sustained-release formulation of hydromorphone that requires dosing once daily to maintain therapeutic concentrations. The objective of this study was to demonstrate the clinical equivalence of immediate-release and sustained-release formulations of hydromorphone and morphine for chronic cancer pain.
Methods:
200 patients with cancer pain (requiring up to 540 mg/d of oral morphine) participated in this double-blind, parallel-group trial. Patients were randomized to receive hydromorphone or morphine (immediate-release for 2-9 days, sustained-release for 10-15 days). Efficacy was assessed with the Brief Pain Inventory (BPI), investigator and patient global evaluations, Eastern Cooperative Oncology Group performance status, and the Mini-Mental State Examination. The primary endpoint was the 'worst pain in the past 24 hours' item of the BPI, in both the immediate-release and sustained-release study phases, with treatments deemed equivalent if the 95% confidence intervals (CI) of the between-group differences at endpoint were between -1.5 and 1.5. No equivalence limits were defined for secondary endpoints.
Results:
Least-squares mean differences (95% CI) between groups were 0.2 (-0.4, 0.9) in the immediate-release phase and -0.8 (-1.6, -0.01) in the sustained-release phase (intent-to-treat population), indicating that the immediate-release formulations met the pre-specified equivalence criteria, but that the lower limit of the 95% CI (-1.6) was outside the boundary (-1.5) for the sustained-release formulations. BPI 'pain now PM' was significantly lower with OROS hydromorphone compared with controlled-release morphine (least-squares mean difference [95% CI], -0.77 [-1.49, -0.05]; p = 0.0372). Scores for other secondary efficacy variables were similar between the two sustained-release treatments. At endpoint, > 70% of investigators and patients rated both treatments as good to excellent. The safety profiles of hydromorphone and morphine were similar and typical of opioid analgesics.
Conclusions:
Equivalence was demonstrated for immediate-release formulations of hydromorphone and morphine, but not for the sustained-release formulations of OROS hydromorphone and controlled-release morphine. The direction of the mean difference between the treatments (-0.8) and the out-of-range lower limit of the 95% CI (-1.6) were in favor of OROS hydromorphone.
Trial registration: ClinicalTrials.gov: NCT0041054
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Prevalence of distressing symptoms in hospitalised patients on medical wards: A cross-sectional study
Background:
Many patients with advanced, serious, non-malignant disease belong to the population generally seen on medical wards. However, little research has been carried out on palliative care needs in this group. The aims of this study were to estimate the prevalence of distressing symptoms in patients hospitalised in a Department of Internal Medicine, estimate how many of these patients might be regarded as palliative, and describe their main symptoms.
Methods:
Cross-sectional (point prevalence) study. All patients hospitalised in the Departments of Internal Medicine, Pulmonary Medicine, and Cardiology were asked to do a symptom assessment by use of the Edmonton Symptom Assessment System (ESAS). Patients were defined as "palliative" if they had an advanced, serious, chronic disease with limited life expectancy and symptom relief as the main goal of treatment.
Results:
222 patients were registered in all. ESAS was completed for 160 patients. 79 (35.6%) were defined as palliative and 43 of them completed ESAS. The patients in the palliative group were older than the rest, and reported more dyspnea (70%) and a greater lack of wellbeing (70%). Other symptoms reported by this group were dry mouth (58%), fatigue (56%), depression (41%), anxiety (37%), pain at rest (30%), and pain on movement (42%).
Conclusion:
More than one third of the patients in a Department of Internal Medicine were defined as palliative, and the majority of the patients in this palliative group reported severe symptoms. There is a need for skills in symptom control on medical wards.
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Caregivers' active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study
Background:
Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.
Methods:
The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.
Results:
Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).
Conclusion:
The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.
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An evaluation of Canada's Compassionate Care Benefit from a family caregiver's perspective at end of life
Background:
The goal of Canada's Compassionate Care Benefit (CCB) is to enable family members and other loved ones who are employed to take a temporary secured leave to care for a terminally ill individual at end of life. Successful applicants of the CCB can receive up to 55% of their average insured earnings, up to a maximum of CDN$435 per week, over a six week period to provide care for a gravely ill family member at risk of death within a six month period, as evidenced by a medical certificate. The goal of this study is to evaluate the CCB from the perspective of family caregivers providing care to individuals at end of life. There are three specific research objectives. Meeting these objectives will address our study purpose which is to make policy-relevant recommendations informed by the needs of Canadian family caregivers and input from other key stakeholders who shape program uptake. Being the first study that will capture family caregivers' experiences and perceptions of the CCB and gather contextual data with front-line palliative care practitioners, employers, and human resources personnel, we will be in a unique position to provide policy solutions/recommendations that will address concerns raised by numerous individuals and organizations.
Methods:
We will achieve the research goal and objectives through employing utilization-focused evaluation as our methodology, in-depth interviews and focus groups as our techniques of data collection, and constant comparative as our technique of data analysis. Three respondent groups will participate: (1) family caregivers who are providing or who have provided end of life care via phone interview; (2) front-line palliative care practitioners via phone interview; and (3) human resources personnel and employers via focus group. Each of these three groups has a stake in the successful administration of the CCB. A watching brief of policy documents, grey literature, media reports, and other relevant items will also be managed throughout data collection.DiscussionWe propose to conduct this study over a three year period beginning in October, 2006 and ending in October, 2009.
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How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews
Background:
In contemporary medical research, randomised controlled trials are seen as the gold standard for establishing treatment effects where it is ethical and practical to conduct them. In palliative care such trials are often impractical, unethical, or extremely difficult, with multiple methodological problems. We review the utility of Cochrane reviews in informing palliative care practice.
Methods:
Published reviews in palliative care registered with the Cochrane Pain, Palliative and Supportive Care Group as of December 2007 were obtained from the Cochrane Database of Systematic Reviews, issue 1, 2008. We reviewed the quality and quantity of primary studies available for each review, assessed the quality of the review process, and judged the strength of the evidence presented. There was no prior intention to perform any statistical analyses.
Results:
25 published systematic reviews were identified. Numbers of included trials ranged from none to 54. Within each review, included trials were heterogeneous with respect to patients, interventions, and outcomes, and the number of patients contributing to any single analysis was generally much lower than the total included in the review. A variety of tools were used to assess trial quality; seven reviews did not use this information to exclude low quality studies, weight analyses, or perform sensitivity analysis for effect of low quality. Authors indicated that there were frequently major problems with the primary studies, individually or in aggregate. Our judgment was that the reviewing process was generally good in these reviews, and that conclusions were limited by the number, size, quality and validity of the primary studies.We judged the evidence about 23 of the 25 interventions to be weak. Two reviews had stronger evidence, but with limitations due to methodological heterogeneity or definition of outcomes. No review provided strong evidence of no effect.
Conclusion:
Cochrane reviews in palliative care are well performed, but fail to provide good evidence for clinical practice because the primary studies are few in number, small, clinically heterogeneous, and of poor quality and external validity. They are useful in highlighting the weakness of the evidence base and problems in performing trials in palliative care.
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Family meetings in palliative care: Multidisciplinary clinical practice guidelines
Background:
Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion.
Methods:
The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia.
Results:
The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented.
Conclusion:
Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.
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Emergency calls and need for emergency care in patients looked after by a palliative care team: Retrospective interview study with bereaved relatives
Background:
During the last stage of life, palliative care patients often experience episodes of respiratory distress, bleeding, pain or seizures. In such situations, caregivers may call emergency medical services leading to unwanted hospital admissions. The study aims to show the influence of our palliative care team to reducing emergency calls by cancer patients or their relatives during the last six month of life.
Methods:
Fifty relatives of deceased patients who had been attended by our palliative care team were randomly selected. Data was obtained retrospectively during a structured interview. In addition to demographic data, the number of emergency calls made during the final six months of the patient's life, the reason for the call and the mental compound score (MCS-12) of the caregivers was registered.
Results:
Forty-six relatives agreed to the interview. Emergency calls were placed for 18 patients (39%) during the final six months of their lives. There were a total of 23 emergency calls. In 16 cases (70%) the patient was admitted to the hospital. Twenty-one (91%) of the calls were made before patients had been enrolled to receive palliative care from the team, and two (9%) were made afterwards. The mean mental compound score of the caregivers at the time of the interview was 41 (range 28–57). There was a lack of correlation between MCS-12 and number of emergency calls.
Conclusion:
Emergency calls were more likely to occur if the patients were not being attended by our palliative care team. Because of the lack of correlation between MCS-12 and the number of emergency calls, the MCS-12 cannot indicate that acutely stressful situations triggered the calls. However, we conclude that special palliative care programs can reduce psychosocial strain in family caregivers. Therefore, the number of emergency calls may be reduced and this fact allows more palliative patients to die at home.
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A reliability and validity study of the Palliative Performance Scale
Background:
The Palliative Performance Scale (PPS) was first introduced in1996 as a new tool for measurement of performance status in palliative care. PPS has been used in many countries and has been translated into other languages.
Methods:
This study evaluated the reliability and validity of PPS. A web-based, case scenarios study with a test-retest format was used to determine reliability. Fifty-three participants were recruited and randomly divided into two groups, each evaluating 11 cases at two time points. The validity study was based on the content validation of 15 palliative care experts conducted over telephone interviews, with discussion on five themes: PPS as clinical assessment tool, the usefulness of PPS, PPS scores affecting decision making, the problems in using PPS, and the adequacy of PPS instruction.
Results:
The intraclass correlation coefficients for absolute agreement were 0.959 and 0.964 for Group 1, at Time-1 and Time-2; 0.951 and 0.931 for Group 2, at Time-1 and Time-2 respectively. Results showed that the participants were consistent in their scoring over the two times, with a mean Cohen's kappa of 0.67 for Group 1 and 0.71 for Group 2. In the validity study, all experts agreed that PPS is a valuable clinical assessment tool in palliative care. Many of them have already incorporated PPS as part of their practice standard.
Conclusion:
The results of the reliability study demonstrated that PPS is a reliable tool. The validity study found that most experts did not feel a need to further modify PPS and, only two experts requested that some performance status measures be defined more clearly. Areas of PPS use include prognostication, disease monitoring, care planning, hospital resource allocation, clinical teaching and research. PPS is also a good communication tool between palliative care workers.
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A reassuring presence: An evaluation of Bradford District Hospice at Home service
Background:
Within the United Kingdom, a developing role for primary care services in cancer and palliative care has resulted in an increase in palliative home care teams. The provision of professional care in the home setting seeks to provide necessary services and enhanced choice for patients whose preference is to die at home.A mismatch between patient preference for home death and the actual number of people who died at home was identified within Bradford, the locality of this study. In response to this mismatch, and reflecting the policy environment of wishing to enhance community service provision, the four Primary Care Trusts (PCTs) in the city sought to offer support to patients who wished to remain in their own homes through the final stages of a terminal illness. To offer this support they set up a dedicated hospice at home team. This would provide services and support for patients in achieving a dignified, symptom free and peaceful death, allowing families to maximise time spent together. The aim of the study was to evaluate the Bradford hospice at home service from the perspective of carers, nurses and General Practitioners.
Methods:
Postal questionnaires were sent to carers (n = 289), district nurses (n = 508) and GP's (n = 444) using Bradford's hospice at home service. Resulting quantitative data was analysed using the Statical Package for Social Sciences (SPSS) and qualitative data was analysed using grounded theory techniques.
Results:
The data from carers, district nurses and GPs provide general support for the Bradford hospice at home service. Carers valued highly the opportunity to 'fulfil a promise' to the individual who wished to be cared for at home. District nurses and GPs cited the positive impact of access to specialist expertise. This was a 'reassuring presence' for primary healthcare teams and offered 'relief of carer anxiety' by providing prompt, accessible and sensitive care.
Conclusion:
Carers and health professionals welcomed the increased possibility of patients being cared for at home. The study identified the need to focus on improving skill levels of staff and on ensuring continuity of care.
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