bluuebunny/crossref_metadata_2025_split huggingface dataset:
Is videotaping of consultations acceptable to patients attending a hospice day centre?
Authors: Hargreaves Peter N , Peppiatt Roger 
Published: May 2003

The use of a videotape recorder to analyse consultations in UK general practice is accepted, well established and has been extensively researched. The technique has potential in palliative medicine for training and the continuing assessment of communication skills as part of peer review. However, there have been no published studies on whether or not videotaping of consultations would be acceptable to a hospice population. Using a semi-structured questionnaire, we interviewed 31 patients who had agreed to have their consultation with a doctor videotaped. Although 30 (97%) did not regret having given permission and would ‘definitely’ or ‘possibly’ agree to another recording in the future, three (10%) felt that the procedure had been inadequately explained to them, six (19%) felt that they were ‘possibly’ or ‘definitely’ not given sufficient notice of the recording and one patient felt under pressure to agree to the recording. These findings suggest that if videotaping of consultations in the hospice setting is to be undertaken, more advanced notice than that usually given in general practice is required and strict safeguards should be in place to protect vulnerable patients.
The concerns of patients under palliative care and a heart failure clinic are not being met
Authors: Anderson H , Ward C , Eardley A , Gomm S A , Connolly M , Coppinger T , Corgie D , Williams J L , Makin W P 
Published: May 2003

Patients with a terminal illness, identified by palliative care teams working in Manchester, and patients attending a heart failure clinic, were asked to participate in a prospective survey to determine their main concerns. Data were collected from 213 palliative care (PC) patients (mostly with cancer) and 66 patients with heart failure (HF). The median ages of the two patient groups were similar, but the HF patients were more likely to be male and living with a partner; 13% of PC and 7% of HF patients reported that they had no carer. The PC patients had more district nurse, hospice, social work and physiotherapy input. The most frequently reported troublesome problems for PC patients were pain (49%), loss of independence (30%) and difficulty walking (27%). HF patients reported dyspnoea (55%), angina (32%) and tiredness (27%) as the most troublesome problems. From a checklist of symptoms, the frequency of tiredness (PC = 77%, HF = 82%) and difficulty getting about (PC = 71%, HF = 65%) were high in each group. Psychological problems were reported by 61% of PC and 41% of HF patients. Cardiac patients reported more breathlessness and cough than PC patients (83% vs 49% and 44% vs 26%, respectively). Reduced libido was more common in cardiac patients (42% vs 21%). Patient disclosure of troublesome problems to professional carers was high (>87% in both PC and HF patients). Documented action was greater for physical than social or psychological problems. For PC patients, documented action was recorded for 83% physical, 43% social/functional and 52% psychological problems. For HF patients documented action was recorded for 74% cardiac, 60% physical–non-cardiac, 30% social/functional and 28% psychological problems. Clearly many patients' troublesome problems were not being addressed. As a result of this study, specific action by health care professionals was taken in 50% of PC patients and 71% of HF patients. We plan to target specific educational events on the treatment of physical problems, psychological assessment and social service provision.
The role of disodium pamidronate in the management of bone pain due to malignancy
Authors: Groff L , Zecca E , De Conno F , Brunelli C , Boffi R , Panzeri C , Cazzaniga M , Ripamonti C 
Published: May 2003

A number of controlled studies have recently demonstrated the role of disodium pamidronate in the prevention of skeletal complications in patients with metastatic bone disease due to breast cancer and multiple myeloma. They have also shown that it relieves pain and is well tolerated. The aim of this open prospective study was to evaluate the acceptability of a new schedule of pamidronate infusion and to assess pain, analgesic consumption and the Karnofsky Performance Status (KPS) in patients with metastatic bone pain treated with pamidronate in association or not with chemotherapy, radiotherapy, and hormone therapy. Patients with different types of cancer and at least one painful bone metastasis were treated with two cycles of 60 mg intravenous (iv) pamidronate weekly for three consecutive doses, with a 3-week interval between the two cycles (six infusions over 7 weeks), followed by one infusion every 3 weeks for a total of 24 infusions. Two hundred patients were enrolled in the study, of whom 94 received at least the first six infusions; 25 patients received all 24 infusions. Pamidronate was well tolerated in the majority of the patients both during the first six infusions and during the whole study period. In the patients under study, pain intensity decreased compared with T0sub after the first two infusions (second week of treatment). The mean equivalent daily dose of oral morphine required ranged from 21.5 to 41.5 mg/day and was low and stable during the study. For the patients who remained in the study, the KPS remained around 70 during the whole treatment period and intrasubject analysis showed a substantial stability of the KPS within each subject. A first fracture occurred within 321 days in 25% of the whole population under study. Pamidronate represents a further valid therapy to add to an already consolidated list of therapies such as radiotherapy, chemotherapy, hormone therapy and orthopaedic intervention in the pain management of patients with bone metastases. Future studies are necessary to evaluate the role of pamidronate and the appropriate schedule in patients with advanced or terminal cancer who are no longer being treated with oncological therapies.
Receiving a diagnosis of lung cancer: patients' interpretations, perceptions and perspectives
Authors: Yardley S J , Davis C L , Sheldon F 
Published: May 2003

Lung cancer has a higher incidence than any other type of cancer and more than 80% of sufferers die within a year of diagnosis. An important aspect of caring for cancer patients is the breaking of bad news, something that most doctors admit to having difficulty with. Only a few publications on this issue adopt the patients' perspective. This study aimed to document patients' views on delivery of lung cancer diagnoses, their attitudes to methods used and ideas for improvement. Patients were selected from medical, surgical and general practitioner clinics to provide insight into patients' perceptions of care in different environments. Those who gave informed consent completed a taped semi-structured interview. Transcripts were analysed qualitatively using a phenomenological approach. Recruitment was stopped when saturation was reached: no new themes were being identified. A summary of results was sent to patients, whenever possible, for their comment. An independent researcher coded four transcripts to establish the degree of inter-rater reliability. Thirteen patients were recruited. There were five key areas: communication (including the use of words such as ‘tumour' and ‘growth'), family/community issues, reaction to diagnosis, views on treatment and prognosis (all of which were very variable), and suggested improvements (e.g. a clearer explanation of the experience of bronchoscopy in the patient information leaflet, PIL). Inter-rater reliability was good. The PIL is being revised. Factors including family situation and personal experience of illness vary greatly and yet they influence patients' reactions to receiving a diagnosis of lung cancer, their interpretation of this and their attitudes to the illness and treatment. These findings underline the need to continue to develop lung cancer services that can provide quality care tailored to each patient.
General practitioners' and district nurses' views of hospital at home for palliative care
Authors: Todd C J , Grande G E , Barclay S IG , Farquhar M C 
Published: May 2003

Cambridge Hospital at Home (CH@H) provides 24-h nursing in a patient's own home to patients requiring terminal and palliative respite care. To investigate views of the service, we surveyed all GPs and district nurses (DNs) in the catchment area of the scheme. Responses were received from 85% of DNs and 65% of GPs. The majority of DNs (93%) and GPs (57%) had patients referred to CH@H, whereas 90% of DNs and 42% GPs had patients admitted. The most commonly reported reason for non-referral was lack of availability of places (GPs 62%; DNs 63%). Ninety per cent DNs and 84% GPs rated continuation of the scheme as important. The most important reported benefits were 24-h care (GPs 84%; DNs 82%) and help in keeping patients at home (GPs 69%; DNs 83%). Seventy-four DNs also considered help in arranging discharge to be important. Almost half GPs and DNs considered CH@H worse than other NHS services in terms of availability and limits on the duration of care. Whilst 65% of DNs thought CH@H had reduced workload, 77% GPs reported it had made no difference or had increased it. Most indicated that CH@H made a difference in allowing patients to die at home (GPs 60%; DNs 68%). The CH@H scheme is viewed as beneficial for patients requiring palliative care at home, although GPs and DNs expressed realistic reservations about specific aspects of the scheme. With the emergence of Primary Care Trusts, NHS commissioning of hospice at home services will more firmly rest with primary care practitioners, who on balance clearly prize them.
Family satisfaction with inpatient palliative care in Japan
Authors: Morita T , Chihara S , Kashiwagi T 
Published: May 2003

Whereas satisfaction is one of the most important outcomes in palliative care settings, there have been no systematic studies investigating the effects of family and organizationrelated variables on family satisfaction with care. To clarify factors contributing to family satisfaction with inpatient palliative care services, a cross-sectional mailed survey was performed. A 60-item questionnaire was mailed to 1026 bereaved subjects who had lost family members at one of 37 palliative care units in Japan to evaluate their sociodemographic characteristics and satisfaction levels with care. An institution survey was performed to collect organization-related variables. Caregiver satisfaction was rated on the Satisfaction scale for Family members receiving Inpatient Palliative Care (Sat-Fam-IPC). A total of 640 responses were analysed (response rate=62%). The responses to overall satisfaction were ‘satisfied’ in 41% and ‘very satisfied’ in 47%. The mean total score of the Sat-Fam-IPC was 82.4±13.2 on the 0— 100 scale. The mean subscale scores were: 85.8±14.5 (Nursing Care), 81.5±18.4 (Symptom Palliation), 85.0±13.8 (Facility), 83.3±16.6 (Information), 83.1±17.3 (Availability), 78.3±18.9 (Family Care), and 79.8±17.3 (Cost). Significant determinants of family satisfaction identified were: nursing system, the number of nurses at night and presence of attending medical social workers (Nursing Care), patient age and the number of physicians (Symptom Palliation), floor space per bed (Facility), duration of admission and presence of attending medical social workers (Availability), patient age, family age, gender and occupational status (Family Care), patient age and the extra charge for a private room (Cost). In conclusion, informal caregivers are generally satisfied with inpatient palliative care services provided by members of the Japanese Association of Hospice and Palliative Care Units. The levels of satisfaction are influenced by various family and organization-related variables.
Where do cancer patients die? Ten-year trends in the place of death of cancer patients in England
Authors: Higginson Irene J , Astin Paul , Imperial Susan Dolan 
Published: May 2003

Although studies have found that 50–70% of cancer patients would prefer to die at home, there has been a trend towards the hospitalization of the dying in many countries. No study has attempted to analyse the changes in place of death in detail. The aim was to analyse the 10-year trends in place of death of cancer patients, by region and by diagnosis, within England. To do this, data on the place of death and patients' characteristics were derived from death registrations for all cancer deaths between the years 1985–94. We examined trends in the place of death for the whole of England, for each region separately and for the main cancer diagnoses. The results show that there were over 1.3 million death registrations from cancer during the 10 years. The mean age increased over the period from 69.9 years in 1985, to 71.3 years in 1994. The percentage who died in a UK National Health Service (NHS) hospital or nursing home fell gradually from 58% (1985) to 47.3% (1994), while the percentage who died in non-NHS hospitals, nursing homes, hospices and communal establishments increased. The percentage who died at home fell slightly but steadily between 1985 and 1992 from 27% to 25.5% and since then increased slightly to 26.5% in 1994. The percentage of home deaths was lowest in the two Thames regions (less than 25%) and highest in the West Midlands, Anglia and Oxford (over 29%). These differentials were maintained across age groups and diagnoses. Older people and women were less likely to die at home than younger people and men. Significant trends showing an increase in home deaths were found in two regions: North Thames and South Thames. Patients with cancers of the lung, colorectum, respiratory organs, bone or connective tissue and lip, oral cavity and pharynx were more likely to die at home (over 29% in 1994) than patients with cancers of the breast (women, 25% in 1994) or the lymphatic or haematological system (16% in 1994). It can be concluded that the trend towards a reducing home death rate from cancer in England appears to have halted, although this varies between regions. This has implications for primary care services. Although hospital is still the most common place of death from cancer, the percentage of cancer patients who die in hospital is reducing. The largest rise is in the increasing use of hospices and communal establishments, including residential and nursing homes. Given the ageing population, this trend is likely to continue.
The relationship between opioid use and laxative use in terminally ill cancer patients
Authors: Sykes N P 
Published: May 2003

The frequency of the use of laxatives, and the relationship between doses of laxatives and of opioid analgesia, were determined by a prospective study of 498 hospice inpatients with advanced cancer. Laxatives were required by 87% of patients taking oral strong opioids, 74% of those on weak opioids and 64% of those not receiving opioid analgesia. The form of the relationship appears to be hyperbolic, as suggested by the presentation of the results arranged by opioid quartile and by the improved correlation obtained by subjecting the opioid data to a logarithmic transformation. It is concluded that opioids account for about a quarter of the constipation found in terminally ill cancer patients in a hospice. However, the dose of laxative required is likely to be significantly higher if an opioid is being taken than if not. The form of the relationship between laxative and strong opioid doses is what might be expected from the mediation of opioid-induced constipation by opioid receptors.
Do hospital palliative care teams improve symptom control? Use of a modified STAS as an evaluation tool
Authors: Edmonds Polly M , Stuttaford Joanna M , Penny Jane , Lynch Anna Marie , Chamberlain Joe 
Published: May 2003

The support team assessment schedule (STAS) has previously been validated as an evaluation tool for community palliative care teams and inpatient units. This study reports on use of an expanded STAS (E-STAS) to determine symptom prevalence and outcome for inpatients and outpatients referred to a multiprofessional hospital palliative care team. E-STAS forms were completed on patients at referral and twice weekly thereafter. Between August 1996 and May 1997, 352 patients had one or more E-STAS forms completed; 122 of this group had three or more assessments. One-hundred-and-eighty-two patients were male and 170 were female, the median age was 68.5 years (range 26–101 years) and all but 27 (8%) had malignant disease. Of the symptoms assessed on referral, the most common were psychological distress 93%, anorexia 73%, pain 59%, mouth discomfort 59%, depression 40%, constipation 36%, breathlessness 32%, nausea 24% and vomiting 13%. In the 122 patients where three or more assessments were completed, statistically significant improvements from first to last assessment were seen in all symptoms except depression. This study suggests that E-STAS may be a useful tool to evaluate interventions by a hospital palliative care team in patients with advanced disease.
Lay carers' satisfaction with community palliative care: results of a postal survey
Authors: Lecouturier Jan , Jacoby Ann , Bradshaw Colin , Lovel Tim , Eccles Martin 
Published: May 2003

This paper reports the substantive findings of a study that examined the feasibility of using postal questionnaires to assess the satisfaction of lay caregivers with the care received in the community by those dying of cancer. The focus of the analysis was the quality of information provided by health professionals, health services used in the final year of the dying person's life and the lay carer's views about the quality of these services. The study was a retrospective survey of lay carers identified from death certificates over a 9-month period. Of the 355 people contacted, 156 completed the questionnaires, a 44% response rate. The results of the survey indicate that information provision was deemed unsatisfactory by a large proportion of respondents, and that dissatisfaction with care received from hospital, the district nursing service and the general practitioner was common. Levels of satisfaction with care were clearly related to a range of service factors. Our survey also highlighted clear differences in the perceived quality of specialist and generic services for those dying of cancer. A comparison of the findings from this postal study with those reported in earlier retrospective interview surveys of lay carers suggests that the use of the postal questionnaire is a valid and cost-effective approach for assessing quality of care. The data provide baseline information against which improvements in the quality of care can be measured.
Specialist palliative care and patients with noncancer diagnoses: the experience of a service
Authors: Kite Suzanne , Jones Kate , Tookman Adrian 
Published: May 2003

This retrospective review was undertaken to identify the pattern of noncancer referrals to a specialist palliative care service, comprising a teaching hospital support team, home care, outpatients and inpatient hospice, over a 1-year period. Of 287 hospital ward referrals, 83 patients had a noncancer diagnosis (29%); they were referred predominantly for symptom control (92%), particularly of pain (84%). Of 130 outpatient referrals, 30 had a noncancer diagnosis (23%) and were also referred mainly for the management of pain (85%). Of 196 home care referrals, 18 had a noncancer diagnosis (9%); they tended to be referred for multiprofessional care of endstage disease. Of 421 hospice inpatient admissions, 17 were for patients with a noncancer diagnosis (4%) and were predominantly for respite care. These admissions accounted for 2% of occupied bed days. It is concluded that specialist palliative care skills are perceived to be transferable to patients with noncancer diagnoses. Resource implications focus on hospital and outpatient services, where shared care with medical teams is usual practice. Defining management goals at the outset is particularly important.
A longitudinal evaluation of a communication skills programme
Authors: Wilkinson Susie , Bailey Koren , Aldridge Judith , Roberts Anita 
Published: May 2003

Communication is an essential component of palliative care, but patients and their families are often dissatisfied with their interactions with health professionals. Communication difficulties are also a recognized stress factor among health professionals. Education and training, however, are said to improve communication skills. A communication skills training programme for 110 nurses has demonstrated statistically significant improvements in the nurses' skills, but no long-term effect was evaluated. This paper presents the results of the long-term follow-up study. Of the 110 nurses contacted, 20% refused to participate, 45% agreed and 35% did not respond; 33 nurses returned usable data. The mean length of time since completing the original study was 2.5 years. Since completion of the original course there was no statistically significant deterioration or improvement in eight of the nine areas of assessment skills evaluated. In the area of psychological assessment there was a statistically significant improvement, and overall the nurses maintained their skills and improved in this area. The results suggest that over time the nurses became more confident in the emotional areas of care as a result of the training. The two key elements of the training were audio-tape recordings and feedback, which raised self-awareness, and experiential workshops covering ways of handling difficult situations. Whether a similar training effect could be achieved by a short 3–5-day course on communication skills needs addressing, because the integrated training skills course evaluated here is costly. Preliminary evidence suggests that the 3–5-day course may not be as effective, so the increased costs associated with the integrated training skills course may be wisely spent if it improves the quality of nurse–patient interaction as evidence here suggests.
The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives
Authors: Hinton John 
Published: May 2003

Awareness and acceptance of dying were assessed weekly by semistructured interviews in a randomized sample of 76 hospice cancer patients and caring relatives. During the final eight weeks of the study, patients' awareness showed only slight increase (about 42% fully certain) while relatives' certainty clearly progressed (from 53% to 81% certain). Depression was linked with greater awareness in relatives but not patients. Patients were more anxious if death seemed probable rather than certain or no more than possible. Acceptance usually increased, with 51% of patients and 69% of relatives becoming nearly/fully accepting. Many individuals diverged from the average progress of awareness and acceptance; 18% of patients and 24% of relatives showed fluctuating or falling acceptance. Patients' and relatives' levels of awareness were positively correlated ( r = 0.46), as was acceptance ( r = 0.47). Relatives accepted more if patients were over 70 years, weak, unable to concentrate or had a quality of life index (QLI) below five, but patients were more accepting if female and if the QLI was above five. Pain did not increase acceptance. Acceptance was described in terms of death's inevitability, faith and spiritual values, life's diminishing rewards, completing life, final benefits, humour, sharing, etc. Individuals often used more than one concept. Generalizing exact figures from this sample needs caution, but some patterns of progress, possible influential factors and ways of acceptance may apply widely.