bluuebunny/crossref_metadata_2025 huggingface dataset:
A survey of education and research facilities for palliative medicine trainees in the United Kingdom
Authors: Stirling L Caroline , Pegrum Helen , George Rob
Published: May 2003

In June 1997 a postal questionnaire was sent to all palliative medicine trainees in the United Kingdom to ascertain the resources available to facilitate education and research, and the experiences of trainees who had undertaken research. Questions posed related to protected study time, library facilities, information technology (IT) support, postgraduate educational activities, details of research projects undertaken, level of senior supervision and overall impressions.

The response rate was 85%. Thirty-six per cent of respondents were undertaking postgraduate educational courses and 30% of those remaining planned to do so. Protected time for study was allocated to almost all trainees, but access to educational resources was more variable. The availability of several journals and of information technology support was lower than their perceived importance. Satisfaction scores for the availability of books covering areas related to clinical practice were high, but were lower for availability of the Internet and of books covering specific training issues.

Ninety-one per cent of respondents had been involved in research/audit projects, twothirds had published at least one article and half had presented an oral or written paper. Details of 162 projects were received, together with problems encountered.

The results indicate that many of the foundations for specialist education in palliative medicine are in place and that trainees are highly motivated towards conducting research. The aspects in need of improvement on the educational side include IT facilities and the availability of specific speciality related journals. There is a need for more accessible supervision from senior colleagues and training in research methodology.
Cognitive impairment and its influence on pain and symptom assessment in a palliative care unit: development of a Minimal Documentation System
Authors: Radbruch Lukas , Sabatowski Rainer , Loick Georg , Jonen-Thielemann Ingeborg , Kasper Mario , Gondek Barbara , Lehmann Klaus A , Thielemann Ingeborg
Published: May 2003

Symptom assessment in the palliative care unit must consider the reduced physical and mental status of the patients. Standardized instruments are often not completed by patients with cognitive impairment. We tried to combine minimal burden for patients and staff with sufficient information content in a Minimal Documentation System (MIDOS) for pain and symptom assessment in palliative care patients.

From January to July 1998, 108 patients (123 consecutive admissions) with a mean age of 63 years (range 32–87 years) were admitted to the palliative care unit. Pain was reported as the reason for admission in 70% of the patients, and 71% were treated with opioids. Using a cut-off point of 20/21, 35% of the patients were impaired in the Mini Mental State Examination (MMSE). The number of missing values in the Brief Pain Inventory (BPI) and the quality-of-life questionnaire SF-12 correlated highly with each other and with the MMSE sum score, but not with the summary scores of BPI or SF-12. Only 31 patients completed the SF-12 quality-of-life questionnaire. Age was not correlated to MMSE scores, and neither were opioid doses for 26 patients with slow-release oral morphine or for 20 patients with transdermal fentanyl.

Only a minority of patients was able to use the numerical scale for symptoms other than pain, though most patients were able to score symptom intensity on the verbal categorical scale. Pain and symptom assessments were performed by the physician for 17% of the patients at admission, and for 16% of the follow-up controls because self-assessment was not possible.

In this study, cognitive impairment prevented symptom assessment with longer and more complicated instruments such as the SF-12 in a large number of the patients admitted to the palliative care unit. Assessment instruments for patients with advanced disease must provide simple categorical scales and the possibility of being administered by interview.
Macmillan Carers Schemes in England: results of a multicentre evaluation
Authors: Clark David , Ferguson Claire , Nelson Catherine
Published: May 2003

Maintaining sick and elderly people at home, particularly as they approach the end of life, is a long-established challenge for health and social care services. Over the past 30 years palliative care providers have attempted a variety of innovations in this area. We report on a descriptive study of seven pilot Macmillan Carers Schemes in England. The schemes sought to provide practical and emotional help to cancer patients and families living in their own homes. Data are available on 624 referrals to the schemes over a 1-year period. Emphasizing comparisons between schemes, we report on reasons for and sources of referral, services offered, number and duration of visits and tasks undertaken. We consider the views of informal carers who made use of the service, the perceptions of Macmillan carers themselves, and we compare financial costs of schemes. It is concluded that the schemes have the potential for further development but face problems, which reflect on their borderline position between ‘health’ and ‘social care’. Current policy changes may be beneficial to the schemes in this respect.
Learning to care: a medical perspective
Authors: MacLeod Rod
Published: May 2003

The development of palliative care as a recognizable specialty has been supported by an acknowledgment of palliative medicine as a discrete discipline within the medical profession. While the knowledge and skills required for training in palliative medicine are well defined, there are elements of the medical care of people at the end of life that are more difficult to outline. Nursing practitioners and academics in particular have made important contributions in defining caring as an entity, and published work in the field of nursing, bio-ethics and philosophy has encouraged an understanding of what caring is and how it is practised. However, it has rarely been addressed specifically in the medical literature. Undergraduate and postgraduate curricula outline some of the attitudes required to practise palliative medicine but the way in which doctors learn to care and indeed should care has not been clearly detailed. This paper reviews some of the literature pertinent to this aspect of palliative care, with particular reference to some of the elements that may influence how and why doctors learn to care in the way that they do in their practice of medicine.
Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients
Authors: Bruera Eduardo , Neumann Catherine M , Mazzocato Claudia , Stiefel Fritz , Sala Raul
Published: May 2003

The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada.

A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists.

Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that ‘do not resuscitate’ orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know.

There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence.

In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world.
Spirituality and palliative care: a model of needs
Authors: Kellehear Allan
Published: May 2003

This paper provides a theoretical model of spiritual needs in palliative care based on a review of the palliative care literature. Three sources of transcendence, the building blocks of spiritual meaning, are identified: the situational, the moral and biographical, and the religious. After these areas of transcendence are described and explained, implications for future theory, research and practice are identified.
Futilitarianism: knowing how much is enough in end-of-life health care
Authors: Dunphy Kilian
Published: May 2003

The concept of futility is frequently invoked by doctors as providing ethical justification for the unilateral witholding/withdrawal of treatment of marginal benefit. The term now appears in many institutional policies. Yet it provokes controversy in its application, often being characterized as an unwarranted infringement of patient autonomy. This paper explores the substance of assertions of futility and attempts to dissect out the issues commonly intertwined in appeals to the concept. An ethical analysis of its component parts is presented using a principle-based approach to derive appropriate duties of care applicable in specific scenarios. The usefulness of the concept of futility is challenged and an alternative model is offered to deal with the ethical dilemmas posed by the availability of treatments of marginal benefit.
Does spirometry predict dyspnoea in advanced cancer?
Authors: Heyse-Moore Louis , Beynon Teresa , Ross Vernon
Published: May 2003

This study explores the similarities and differences between subjective assessments of dyspnoea and objective spirometric indices of respiratory function in advanced cancer. Of 155 patients investigated, 71 (46%) were dyspnoeic and 108 (70%) had spirometry (94 post-salbutamol). Of the 94, 84 had height and weight measured to calculate predicted spirometry. Average dyspnoea levels over 24 h were measured by patient visual analogue scales (VASMe 24). Forced expiratory volume after 1 s (FEV1) and forced vital capacity (FVC) were almost always lower than predicted, indicating frequent impaired respiratory function. Mean spirometric increase post-salbutamol was 21% for FEV1 and 12% for FVC. Correlations between VAS dyspnoea scores and spirometry were low; hence, the latter cannot be relied upon as a measure of the former. Respiratory impairment tended to be obstructive (mean FEV1/FVC = 65%).
A randomized controlled trial of a hospital at home service for the terminally ill
Authors: Grande G E , Todd C J , Barclay S I G , Farquhar M C
Published: May 2003

This study evaluated the impact of a Cambridge hospital at home service (CHAH) on patients' quality of care, likelihood of remaining at home in their final 2 weeks of life and general practitioner (GP) visits. The design was a randomized controlled trial, comparing CHAH with standard care. The patient's district nurse, GP and informal carer were surveyed within 6 weeks of patient's death, and 225 district nurses, 194 GPs and 144 informal carers of 229 patients responded. There was no clear evidence that CHAH increased likelihood of remaining at home during the final 2 weeks of life. However, the service was associated with fewer GP out of hours visits. All respondent groups rated CHAH favourably compared to standard care but emphasized different aspects. District nurses rated CHAH as better than standard care in terms of adequacy of night care and support for the carer, GPs in terms of anxiety and depression, and informal carers in terms of control of pain and nausea. Thus whilst CHAH was not found to increase the likelihood of remaining at home, it appeared to be associated with better quality home care.
The reality of palliative care in Spain
Authors: Centeno Carlos , Arnillas Pedro , Hernansanz Silvia , Flores Luis Alberto , Gómez Marcos , López-Lara Francisco
Published: May 2003

With the sponsorship of the Spanish Society of Palliative Care (SECPAL), two nation-wide studies from the University of Valladolid were carried out in 1996 and 1998 into the state of palliative care teams in Spain. This report is based on those studies and is the first overall analysis of the current situation of palliative care in Spain. A total of 143 programmes were identified and data were collected from 128 teams (89%): 53 were programmes with hospitalised patients, 75 for home-based patients and 15 were mixed programmes. From the activity data, provided by 75% of the teams, it may be estimated that each year 22 638 terminally ill patients receive palliative care attention. Of these, 18 021 (79.6%) are cancer sufferers. Of the patients who die from cancer each year in our country, 21.2% receive palliative care during the final weeks of life. More than 10 years have passed since the first teams in Spain started their work. The time has now come to recognize the reality of palliative care in our society and to adopt a national policy for terminally ill patients, in line with World Health Organization recommendations formulated in 1989.
Minimum dataset activity for hospice and hospital palliative care services in the UK 1997/98
Authors: Eve Ann , Higginson Irene J
Published: May 2003

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.
What do palliative medicine consultants do?
Authors: Makin Wendy , Finlay Ilora G , Amesbury Brendan , Naysmith Anne , Tate Teresa
Published: May 2003

A workload study of consultants in palliative medicine was carried out, in which a task inventory questionnaire was sent to the consultant members of the Association for Palliative Medicine of Great Britain and Ireland. The median number of hours per week worked by a palliative medicine consultant was 49.5 (mean 51.3), excluding time on-call and breaks. The median consultant first on-call roat is 1:3. Palliative medicine consultants work a median of 22.5 direct clinical and 4.5 indirect clinical hours per week. This is very similar to the hours worked by consultants in other specialties who work an average 51.3 h per week, but with a median on-call rota of 1:6. Further studies are planned to monitor the pattterns of consultant activity and workload in this specialty.
Perceptions of health care need in lung cancer. Can prospective surveys provide nationally representative data?
Authors: Krishnasamy Meinir
Published: May 2003

This paper considers the potential of a prospective questionnaire survey to provide nationally representative data of perceptions of health care need. The paper focuses on methodological problems encountered during the study, reserving the discussion of key findings to further publications. Data were gathered from patients with lung cancer, lay carers and professionals from 24 randomly selected hospitals throughout the UK. A number of factors had an impact on the survey's potential to provide nationally representative data. These included an unanticipatedly high death rate of patients registered in hospitals as being in receipt of treatment or follow-up care. Of a potential sample of 785 patients identified as being alive by the participating hospitals prior to data collection, 319 (41%) were found to have died after checking with general practitioner surgeries. As a consequence of consultants declining to participate, or where they did not reply to any correspondence, eight hospitals were withdrawn from the study on the grounds of inability to gain access to a representative sample of patients. In conclusion, a retrospective design, supplemented by the views of patients would have ensured greater success in terms of patient response rate (45%) and representativeness of data. Nevertheless, the survey represents a first attempt at undertaking a national assessment of patients with lung cancer and has provided rich data drawn from patients' experiences of living with a diagnosis of lung cancer and its treatment.
Using bisphosphonates to control the pain of bone metastases: evidence-based guidelines for palliative care
Authors: Mannix Kathryn , Ahmedzai Sam Hjelmeland , Anderson Heather , Bennett Michael , Lloyd-Williams Mari , Wilcock Andrew
Published: May 2003

This work was undertaken by the Science Committee of the Association for Palliative Medicine of Great Britain and Ireland (APM) as a demonstration project in developing clinical guidelines relevant to palliative care from a pragmatic approach to literature review and grading of clinical evidence. CANCERLIT and Embase were searched for relevant papers written in English, published since 1980. Each study identified was rated against agreed criteria for levels of evidence. Most studies were not specifically designed to define speed of response, and were not undertaken in palliative care patients. Thus, careful reading and grading of each study was necessary. Sufficient evidence was identified to make recommendations for clinical practice in a palliative care population of patients, and areas for future research have been identified. Bisphosphonates appear to have a role in managing pain from metastases which has been refractory to conventional analgesic management and where oncological or orthopaedic intervention is delayed or inappropriate.
Nonwhite ethnicity and the provision of specialist palliative care services: factors affecting doctors' referral patterns
Authors: Karim Kelvin , Bailey Maria , Tunna Kate
Published: May 2003

The aim of this paper was to examine the use of palliative care services by members of black/minority ethnic communities. Referral patterns of hospital consultants and general practitioners (GPs) to Birmingham St Mary's Hospice were examined. Semistructured interviews were carried out to explore doctors' perceptions of the benefits and limitations of hospice services for their black/minority ethnic patients and to identify potential barriers to referral. In total, 27 doctors were interviewed: 15 hospital consultants and 12 GP. The GPs were selected according to size of practice within areas of Birmingham with significant black/minority ethnic populations. Referrals received by the hospice for the period April 1996 to November 1997 were collected from the Hospice's computerized database. Results show that, compared to white Europeans, there was an underutilization of day care and inpatient hospice services by members of black/minority ethnic communities. Doctors did, however, refer their black/minority ethnic patients for hospice home-care services: 8.5% of referrals received by the hospice were for nonwhite patients. This referral rate increased to 19.3% in specific postcode areas known to have significant black/minority ethnic communities. Further research is needed to establish levels of awareness, explore attitudes towards palliative care services and assess the demand for specific services within various black/minority ethnic communities.
Common threads? Palliative care service developments in seven European countries
Authors: Clark David , ten Have Henk , Janssens Rien
Published: May 2003

Since the late 1960s hospice and palliative care services have been developing in many European countries. Although attention has been given to patterns of development in specific national contexts, so far we lack a comparative understanding of how these services are organized and delivered. Such a comparison poses certain practical and methodological difficulties. It does, however, allow a wider view of the current provision of palliative care in Europe, together with a consideration of implications for the future. We report on an analysis of palliative care developments in seven European countries which gave attention to early origins, patterns of provision, and structural and policy integration. We conclude that, despite different processes of development, the emergent discipline of palliative care now finds its most congenial home within the structures of the formal health care system. Accordingly, inequities between the seven countries can be more clearly identified, posing continuing challenges to policy makers and planners who operate with a European perspective.
Death anxiety in brain tumour patients and their spouses
Authors: Adelbratt Susan , Strang Peter
Published: May 2003

When a person is diagnosed with a severe disease, it seems plausible that existential questions and death anxiety are easily intensified. The aims of this study were to explore whether this is the case, to what extent patients and their next of kin experience death anxiety, and how these experiences are expressed. Following a purposive sampling technique, 20 patients with brain tumours and 15 of their next of kin took part in interviews. A content and context analysis were performed using a hermeneutic approach, in order to identify and analyse main categories. Six main categories common to patients and their next of kin emerged during the process: (1) emotional reactions that could be related to death anxiety and included general anxiety, anguish, sadness, hope and despair; (2) existential fear, existential anxiety and existential pain; (3) contradictions; (4) trigger situations; (5) coping strategies related to death anxiety; and (6) new values for life. Besides these categories, a further category emerged, experiences characteristic of the next of kin.

The study shows that both the patients and their next of kin are preoccupied with existential thoughts and death anxiety. The problems are easily overlooked as the death anxiety is not always expressed directly. Staff need to be more aware of these situations in order to provide existential support.
Using videoconferencing in palliative care
Authors: Regnard Claud
Published: May 2003

Recent technological advances and reducing costs have meant that videoconferencing is a possible new medium for health-care teams. The IMPaCT (Interactive Multimedia Palliative Care Training) project began in 1997 with the aims of assessing the practicalities of videoconferencing in palliative care and assessing its educational effectiveness. The use of videoconferencing was closely evaluated during the first 2 years of the project and this paper presents the results of that monitoring. Twenty-two sites were linked worldwide, reaching 136 professionals without the costs or time needed to travel. The savings on travel and time within the UK alone would have paid for the equipment in 1 year. Sites only continued with videoconferencing if they reached a point where their organization saw the advantages of videoconferencing. Links were easy to establish and rarely failed regardless of distance. Users rapidly adapted to the new medium, and links could be used in a variety of settings and audiences, including journal clubs and expert workshops. Videoconferencing offers a new and unique way of supporting palliative care professionals while reducing time and costs for both tutors and learners.
Drugs and syringe drivers: A survey of adult specialist palliative care practice in the United Kingdom and Eire
Authors: O'Doherty C A , Hall E J , Schofield L , Zeppetella G
Published: May 2003

Subcutaneous delivery of drugs using a syringe driver is common practice within specialist palliative care units. There is, however, little documented information regarding clinical practice. A survey performed in 1992 reported that at least 28 drugs were used in combination with others in a single syringe driver. The aim of the present study was to reassess practice in this field and to enquire more specifically about newer drugs. Postal questionnaires were sent to all adult specialist palliative care in-patient units in the UK and Eire ( n=208). One hundred and sixty-five units (79%) responded. The most common syringe driver in use was the Graseby 26 (61% of responding units). Most units delivered the contents of the syringe over 24 h, and water was usually used as the diluent in 90% of cases. The maximum number of drugs that respondents were prepared to mix in a single syringe was usually three (51%) or four (35%). In the UK, all units used diamorphine in doses from 2.5 mg/24 h upwards. All respondents also used haloperidol, in doses from 0.5 to 60 mg/24 h. A total of 28 different drugs were used in syringe drivers. The most common combinations were diamorphine and midazolam (37%), diamorphine and levomepromazine (35%), diamorphine and haloperidol (33%), and diamorphine and cyclizine (31%). In conclusion, there is much in common with regard to the way in which drugs are delivered in syringe drivers. However, a wide variety of drugs and drug combinations are still in use.
The prevalence of episodic pain in cancer: a survey of hospice patients on admission
Authors: Swanwick M , Haworth M , Lennard R F
Published: May 2003

Pain that varies with time, referred to here as episodic pain, is a commonly encountered but under-investigated clinical problem. Previous studies of cancer patients have found that a significant proportion of their pains are episodic. To establish the prevalence and characteristics of episodic pains in hospice in-patients we assessed 245 consecutive admissions to four hospices in Yorkshire. The admitting doctor completed a questionnaire, detailing the characteristics of all pains experienced by the patient in the previous 24 h. Two hundred and forty-two questionnaires were entered into the study. One hundred and thirty-two patients reported pain in the preceding 24 h, of these 93% had at least one episodic pain. In total, 228 pains were described, of which 211 were episodic with a wide variation in their temporal characteristics, intensities and limitation. One hundred and fifty-two episodic pains had a precipitating factor; movement and weight bearing being the most frequent precipitants. One hundred and sixty-eight episodic pains had a relieving factor, medication improving 54%. Ninety-five pains were related to the malignancy and 47 to concurrent illness.

The study confirms that episodic pain is extremely common in cancer patients referred for in-patient hospice care and highlights the need for further evaluation of its management.
Retrospective study of the use of hydromorphone in palliative care patients with normal and abnormal urea and creatinine
Authors: Lee Mark A , Leng Mhoira E F , Tiernan Eóin J J
Published: May 2003

An uncontrolled retrospective study was conducted looking at the use of oral controlled-release hydromorphone in palliative care patients. Over a 2-year period 55 patients were switched to hydromorphone therapy, and the efficacy and outcomes were assessed. Urea and electrolyte measurements were also recorded at the time of opioid switch and renal impairment defined as urea > 10.5 mmol/l and/or creatinine [.greaterequal] 101 mmol/l. This group of 29 patients with abnormal urea and/or creatinine (Group 1) was compared with the remaining 26 patients (Group 2) who had normal urea and creatinine.

The major reasons for change to hydromorphone were side-effects (cognitive/ drowsiness/nausea) on previous therapy. Following a switch to hydromorphone these side-effects improved in over 80% of patients ( n = 55). Comparison between Group 1 and 2 demonstrated a significant difference in renal function but no significant differences in reasons for change, dose of opioids or response to change (over 80% improvement following opioid switch).

We conclude that hydromorphone is a flexible second-line alternative to morphine that is particularly useful when intolerable side-effects are experienced with other opioids. In renal impairment (including two patients with end-stage renal failure) we found hydromorphone to be safe and effective. Further clinical and pharmacokinetic studies are required.
Spiritual thoughts, coping and ‘sense of coherence’ in brain tumour patients and their spouses
Authors: Strang Susan , Strang Peter
Published: May 2003

When a person is diagnosed with a life-threatening disease, existential questions are easily triggered. The aims of this study were to explore to what extent brain tumour patients and their next of kin were able to cope, understand and create meaning in their situation, to explore whether spirituality could be supportive and to analyse whether these concepts are related to Antonovsky's concept of sense of coherence. Using a purposive sampling technique, 20 patients and 16 of their next of kin took part in tape-recorded interviews. A content and context analysis was performed using a hermeneutic approach.

We found that comprehensibility was to a large extent constructed by the patient's own thoughts and theories, despite an insecure situation. Manageability was achieved by active information-seeking strategies, by social support and by coping, including positive reinterpretation of the situation. Meaningfulness was central for quality of life and was created by close relations and faith, as well as by work. A crucial factor was whether the person had a ‘fighting spirit’ that motivated him or her to go on. As only three patients were believers, trust in God had generally been replaced by a belief and confidence in oneself, in science, in positive thinking and by closeness to nature.

Sense of coherence as a concept can explain how exposed persons handle their situation. In its construction, sence of coherence integrates essential parts of the stress/coping model (comprehensibility, manageability) and of spirituality (meaning).
Use of bisphosphonates for the treatment of metastatic bone pain. A survey of palliative physicians in the UK
Authors: Johnson Ian S
Published: May 2003

A postal survey of palliative physicians in the UK conducted in 1999 demonstrated widespread use of bisphosphonates for treatment of bone metastases from a variety of tumour types. In the absence of clear guidelines, however, there was found to be wide variation in treatment regimes, and opinions about efficacy varied greatly between respondents. Pamidronate was the most popular choice of drug, but a number of respondents chose to use clodronate, often on the basis of cost saving. A high level of uncertainty about how to monitor side-effects and efficacy was revealed. As well as acute treatment of severe pain, a significant number of respondents reported treating patients prophylactically, and the majority thought that their use of bisphosphonates would increase over the next 2 years. The potential financial consequences of this are considered.
A prospective survey of the use of dexamethasone on a palliative care unit
Authors: Hardy Janet R , Rees Elizabeth , Ling Julie , Burman Rachel , Feuer David , Broadley Karen , Stone Patrick
Published: May 2003

One hundred and six consecutive patients started on glucocorticosteroids (steroids) according to a defined prescription policy were surveyed each week to document the indications for use, any beneficial effect, any toxicity incurred and the reason for stopping. All patients had advanced malignant disease and survived for a median of 40.5 days (range 1–398+ days) from the start of steroid treatment. Fifty-seven per cent of patients completed three or more assessments. The most common specific indications for starting steroids were spinal cord compression, cerebral metastases, lymphangitis carcinomatosa and intestinal obstruction. The most common non-specific indications were anorexia, nausea, low mood, pain and vomiting. The median duration of steroid use was 21.5 days (range 1–89 days). The most common reason for the discontinuation of steroids was death or deteriorating condition. Symptom scores improved at some stage for the majority of patients started on steroids for anorexia, nausea, pain, low mood, vomiting and weakness but not in patients complaining of dyspnoea or poor mobility. The most common side-effects that were most probably attributable to steroid therapy were oral candidosis and proximal myopathy. The benefits of steroids when used according to defined guidelines were thought to outweigh toxicity.
Visual hallucinations: a prevalence study among hospice inpatients
Authors: Fountain Averil
Published: May 2003

The aim of the study was to determine the prevalence of visual hallucinations among hospice inpatients, and the prevalence of a number of possible associated risk factors.

One hundred consecutive admissions to St. John's Hospice in Wirral were screened for visual hallucinations in a semi-structured interview. The prevalence of opioid administration, other drugs known to cause hallucinations, brain tumours, liver metastases, bone metastases, lung metastases, known renal failure, eye disease, Alzheimer's disease, Parkinson's disease, other neurodegenerative disorder, psychiatric disorder and epilepsy were also recorded. Subjects were screened for cognitive function using the Folstein mini-mental state examination (MMSE). Survival times from assessment to death were calculated.

The results were analysed using arithmetical means with 95% confidence intervals (Cl) and odds ratios with 95% confidence intervals.

Almost half (47%) the patients had experienced visual hallucinations within the previous month. Hypnagogic or hypnopompic hallucinations of a person standing by the bedside were the commonest type. Median survival time for hallucinators was 15 days (range 0–50 days) and for non-hallucinators was 11 days (range 0–89 days). There was no significant difference in cognitive scores between hallucinators and nonhallucinators. Hallucinations were associated with multiple possible risk factors in every case. Hallucinators were more likely to be taking opioids, although the association was not strong (odds ratio 4.48, 95% CI = 1.6–12.19), and were taking larger numbers of potentially hallucinogenic drugs. It is not clear why some patients on opioids hallucinate and others do not. Data on the prevalence of various possible risk factors yielded ample material for the planning of future studies.
The meaning of the lived experience of hope in patients with cancer in palliative home care
Authors: Benzein Eva , Norberg Astrid , Saveman Britt-Inger
Published: May 2003

The aim of this study was to illuminate the meaning of the lived experience of hope in patients with cancer in palliative home care. Narrative interviews with 11 patients were interpreted using a phenomenological–hermeneutic method, inspired by Ricoeur. The findings revealed a tension between hoping for something, that is a hope of getting cured, and living in hope, that is reconciliation and comfort with life and death. This tension is highlighted, according to the views of the French philosopher Gabriel Marcel, as a state of ‘recollection’. The interviewees told of the hope of living as normally as possible and of the experience of confirmative relationships as dimensions of their lived experience of hope. These findings show that hope is a dynamic experience, important to both a meaningful life and a dignified death, for those patients suffering from incurable cancer.
Implementation of the World Health Organization ‘analgesic ladder’ in Saudi Arabia
Authors: Isbister William H , Bonifant John
Published: May 2003

The European School of Oncology recently sponsored a symposium at the King Faisal Specialist Hospital in Saudi Arabia entitled ‘The modern management of advanced cancer: how to help your patients’. During this symposium, a workshop was organized in order to address the problem of ‘the availability and the distribution of narcotics’ for patients with advanced symptomatic cancer in the Kingdom of Saudi Arabia. Many country-wide problems were identified including the lack of specific information, religious acceptance and education for patients, health care professionals and government, the availability of medications and access to palliative care. It was suggested that clear protocols for the acceptance of patients into palliative care programmes, the prescribing and delivery of medication, and their availability throughout the country, be established. The goal of allowing patients with advanced cancer to die with dignity and without pain was identified as a worthy one and one that would be appreciated not only by patients themselves but by their relatives, carers, religious leaders and government. The workshop discussed some of the ways of trying to achieve this goal, and its conclusions are reported here.
A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer
Authors: Edmonds Polly , Karlsen Saffron , Khan Saba , Addington-Hall Julia
Published: May 2003

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.
Transdermal fentanyl for the management of cancer pain: a survey of 1005 patients
Authors: Radbruch Lukas , Sabatowski Rainer , Petzke Frank , Brunsch-Radbruch Anke , Grond Stefan , Lehmann Klaus A
Published: May 2003

Transdermal fentanyl was released in Germany in 1995. From October 1996 to February 1998 transdermal treatment was documented for 1005 patients (506 men and 499 women with a mean age of 60 years, range 20–92 years) with chronic pain in an open survey including 290 physicians from hospitals and general practitioners throughout Germany. Most patients suffered from cancer pain and only 11 patients had chronic pain from non-malignant disease. Physicians were asked to complete a questionnaire for patients treated with transdermal fentanyl on initiation of therapy (day 0), and days 3, 6, 18, 30 thereafter, followed by monthly follow-up intervals. Patients were asked to complete a pain diary. Transdermal therapy was documented from day 0 for 824 patients, while 181 patients had been treated with transdermal fentanyl before admission in the survey. Most of the other 824 patients had been treated with other step 3 opioids (55% of the patients) or step 2 opioids (23%) before conversion to transdermal fentanyl, whereas 8% had been treated only with non-opioids and 14% had received analgesics only as required or not at all before initiation of transdermal therapy. The most important reasons for switching to transdermal opioid therapy were insufficient pain relief with the previous medication followed by a variety of gastrointestinal symptoms impeding oral analgesic therapy. Initial fentanyl doses ranged from 0.6 to 9.6 mg/day (25 to 400 [.mu]g/h) with a median of 1.2 mg/day (50 [.mu]g/h). Median doses slowly increased throughout the observation period to 2.4 mg/day (100 [.mu]g/h) after 4 months of treatment. Most patients continued transdermal therapy until the time of death (47% of patients). Other reasons for discontinuation were inadequate pain relief (10%), pain relief with other analgesic regimens (10%), other symptoms than pain (5%), rejection of transdermal therapy by the patient (6%) or miscellaneous (16%). Adverse events were documented as the reason for discontinuation of transdermal therapy in 49 patients (5%). Dyspnoea was documented for seven patients as the reason for discontinuation. One of these patients, as well as another patient with an episode of apnoea, had to be treated with artificial respiration for several hours, but both patients recovered without sequelae.

Transdermal therapy with fentanyl was safe and efficient in this national survey. Transdermal fentanyl can be recommended for treatment of moderate to severe cancer pain and probably may even be used as a first-line drug on step 3 of the World Health Organization recommendations in selected patient groups.
Accounts of carers' satisfaction with health care at the end of life: A comparison of first generation black Caribbeans and white patients with advanced disease
Authors: Koffman Jonathan , Higginson Irene J
Published: May 2003

While much research has described experiences at the end of life, no studies have explored the black Caribbean perspective. This paper compares the final year of life of first generation black Caribbeans and white patients with advanced disease in an inner London health authority, focusing on their satisfaction with service provision in both primary care and acute settings using face-to face interviews with carers of deceased patients. Of the 106 black Caribbean patients and 110 white deceased patients identified as dying during the study period 50 interviews per ethnic group were conducted with family members or close friends, a response rate of 47% and 45%. Even though examples of excellent and good care were cited, a larger proportion of negative satisfaction ratings of health care was recorded among respondents representing black Caribbean patients. This was true for all health care settings, particularly primary care, but less so for specialist palliative care nurses. However, few black Caribbean patients accessed specialist palliative care nurses or hospices. Qualitative data provided a deeper insight into the black Caribbean experience care at the end of life. We recommend that where examples of best practice in palliative care and culturally sensitive provision are evident they be extended to more health care professionals through education and training. Access to specialist palliative care services needs to be improved.
Attitudes and knowledge about cancer pain in Flanders. The educational effect of workshops regarding pain and symptom control
Authors: Bauwens S , Distelmans W , Storme G , Kaufman L
Published: May 2003

Despite international agreements and recommendations regarding cancer pain therapy, the effectiveness of pain treatment is still a major problem even in Western countries. Part of the problem is that physicians and nurses often lack knowledge of methods for the assessment and treatment of cancer pain and may have many rigid beliefs and attitudes. This study investigated the misconceptions of physicians and nurses that play a role in the undertreatment of pain in Flanders (Belgium). We approached 197 health care workers who participated in the pain and symptom control education sessions organized by the Federation Palliative Care Flanders, and asked them to complete a questionnaire both before and after the sessions. The impact of the education sessions on their knowledge and beliefs regarding the management of cancer pain was substantial. Methods of reaching the target groups that do not feel the need for further education are discussed.