bluuebunny/crossref_metadata_2025 huggingface dataset:
Bereavement research: methodological issues and ethical concerns
Authors: Stroebe Margaret , Stroebe Wolfgang , Schut Henk
Published: May 2003

Principles of conducting research in the field of bereavement are introduced. The review focuses on issues of design and methodology, and considers ethical concerns, particularly in view of the fact that bereaved people are frequently in acute grief when scientific study is conducted. Accurate assessment is fundamental, and requires methodologically stringent procedures. The merits and disadvantages of different types of investigation are considered, the often-neglected need for control groups is described, and quantitative versus qualitative methodological approaches are reviewed. Also considered are biases due to selection and limits on generalizability. Understanding of ethical matters arising in this field of research is essential for the conduct of worthwhile research, and involves methodological sophistication.
Pitfalls in placebo-controlled trials in palliative care: dexamethasone for the palliation of malignant bowel obstruction
Authors: Hardy Janet , Ling Julie , Mansi Janine , Isaacs Richard , Bliss Judith , A'Hern Roger , Blake Peter , Gore Martin , Shepherd John , Hanks Geoff
Published: May 2003

To determine the effect of dexamethasone when treating malignant bowel obstruction, 35 patients were randomized to receive intravenous dexamethasone or a placebo, crossing over to the alternate treatment arm if there had been no resolution of obstruction by day 5. This was done in two consecutive studies. Patients were stratified according to whether or not they had received specific anticancer therapy within 28 days of study. In trial 1, 15 out of 22 patients ‘responded’ (resolution of obstruction by day 5; 10 on dexamethasone, five on placebo). Eleven out of 15 patients were ‘on treatment’. In trial 2, six out of 13 responded (three on dexamethasone, three on placebo); three out of six were ‘on treatment’. When both studies are combined, 60% (21/35) patients responded (13 on dexamethasone, eight on placebo). Poor patient accrual terminated both studies. Numbers are too small to allow a combination of studies or formal statistical analysis. We are unable to make any conclusion as to the effectiveness of dexamethasone in the palliation of malignant bowel disease.
Pain in Chinese cancer patients under palliative care
Authors: Sze Frank Kai-hoi , Chung T K , Wong Eric , Lam K K , Lo Raymond , Woo Jean
Published: May 2003

Over a 4-month period, 218 Chinese patients with advanced cancer were admitted to a palliative care unit in Hong Kong. Ninety-five (44%) of them had pain. Of these 95, 70 (mean age 61.7 years) were evaluated with the visual analogue scale (VAS) and the numerical rating scale (NRS). Forty-two per cent of the 70 patients were illiterate. Eighty-three per cent had metastases. Eighty-seven per cent had pain due to the disease process. Forty-nine per cent had more than one pain, 54% had moderate pain and 20% had severe pain. The most common primary tumour was lung cancer. NRS scores strongly correlated with corresponding VAS scores, suggesting that NRS can routinely be used for pain intensity assessment in the Chinese. The study also showed that 64% of these patients with pain had moderate to severe disabilities in the basic activity of daily living, although there was no correlation between the severity of pain and the severity of disability.
Intrathecal baclofen and homeopathy for the treatment of painful muscle spasms associated with malignant spinal cord compression
Authors: Thompson Elizabeth , Hicks Fiona
Published: May 2003

In this case study we describe a dual approach to the palliation of difficult muscle spasms using intrathecal baclofen via a fully implanted system, together with the homeopathic approach to symptom control. The homeopathy is seen to complement rather than to replace conventional prescribing and using both approaches together appears to have avoided the necessity for increasing drug doses and to have minimized side-effects. As well as encouraging us to take on experience from other disciplines, this case study also suggests that palliative care could be a forum for evaluating the effectiveness of the homeopathic approach in symptom control in carefully designed studies.
Challenging assumptions in end-of-life situations
Authors: Bolmsjö Ingrid , Hermerén Göran
Published: May 2003

An actual case is used to highlight ethical and psychological problems which may arise in the care of terminally ill patients. The case is structured and analysed, focusing on five different situations in which more than one alternative action is possible.

This study shows that between description and prediction on the one hand, and decision making on the other, the interpretation of the situation and the consideration of possible alternative actions both play an important role. Different factors that may influence the interpretations made by the staff include their values, knowledge, experiences and empathy.
The last month of life: continuity, care site and place of death
Authors: Sahlberg-Blom E , Ternestedt B-M , Johansson J-E
Published: May 2003

A hospice ward was opened in 1991 at the Örebro Medical Centre Hospital (ÖMCH) in Sweden. Shortly afterwards, a research project was started, which aimed to describe different aspects of the final period of life of a group of cancer patients. This exploratory study is part of this project and aims to assess continuity in the site of care for a group of severely ill cancer patients during the final stages of their lives, and their place of death within different cultures of care.

This prospective study involved 56 adults with cancer who had been admitted to six specialized departments at ÖMCH. Demographic and diagnostic data, documentation of when the patients changed from one care form to another, as well as place of death were obtained. The analysis of continuity in terms of care site involved care-oriented cultures (hospice ward, hospital-based home care, primary care-based home care and nursing home) and cure-oriented cultures (acute hospital wards).

Considered as a group, the patients spent one-third of their time at home during their final month of life, with or without formal caregivers. For individual patients, however, there were great variations with regard to continuity of care site and care form. A pattern was found for the type of cancer the patients had and where they were during their final month. Ten patients died in their own homes, and of the 46 who died in an institution, approximately the same number died in a care-oriented culture as in a cure-oriented culture.
New directions in bereavement research: exploration of gender differences
Authors: Stroebe Margaret S
Published: May 2003

Psychological research on the phenomena of bereavement has moved from a concern to establish the range and severity of mental and physical health consequences, to the examination of factors that make particular persons or subgroups especially vulnerable, to most recently an investigation of ways of coping with loss that may influence the course of recovery and adjustment. This trend is illustrated by exploring gender differences in reactions to spousal bereavement. Both males and females are vulnerable to ailments and illnesses on becoming bereaved, but research has shown that widowers have even more excessive detrimental consequences than widows. A new framework that has been developed to help understanding of such processes in coping with loss is outlined.
An evaluation of palliative care services for cancer patients in the Southern Health and Social Services Board of Northern Ireland
Authors: Field David , McGaughey Jennifer
Published: May 2003

An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status.
The use of specialist palliative care services by patients with human immunodeficiency virus-related illness in the Yorkshire Deanery of the Northern and Yorkshire region
Authors: Salt S , Wilson L , Edwards A
Published: May 2003

To examine the use of palliative care services by patients affected by human immunodeficiency virus (HIV) in hospices which do not specialize in the care of HIV patients, a tape-recorded, semistructured interview was carried out in 12 hospices in the UK. The interview explored concerns about such provision, as well as actual issues encountered.

The study revealed that all 12 hospices accepted referrals for people affected by HIV and had clear working practices on infection control. Between 1990 and 1996, 48 individuals affected by HIV had contact with the hospices. The number of referrals was not related to the size of the hospice. Thirty-nine individuals had a total of 655 days of inpatient care (range 1–35 days); mean length of stay 12.7 days. Twenty-four (62%) died during their first admission. Referrals came from disparate sources and this affected the amount and type of specialist HIV support available to the hospice. The paucity of referrals raised concerns in most of the units as to how to maintain skills. Issues about maintaining confidentiality of diagnosis in a multiprofessional team, and after death were highlighted. All units expressed concerns about the impact on fundraising of HIV-related admissions. Overall it was felt that the hospice units were failing to meet the palliative care needs of the majority of people affected by HIV or acquired immunodeficiency syndrome (AIDS) in the region. Possible reasons for this are given.
Access to palliative medicine training for Canadian family medicine residents
Authors: Oneschuk Doreen , Bruera Eduardo
Published: May 2003

The authors conducted a nine-item mail questionnaire of the 16 Canadian family medicine teaching programme directors to determine the accessibility and operation of palliative care education for their respective family medicine residents. All 16 faculties of medicine responded (100%). The survey revealed that while all universities offer elective time in palliative care only five out of 16 (31%) have a mandatory rotation. The median durations of the mandatory and elective rotations are limited to two and three-and-a-half weeks, respectively. The majority of the universities offer formal lectures in palliative care (12/16, 75%) and educational reading material (13/16, 81%), with the main format in 14/16 (87%) of the sites being case-based learning. The two most common sites for teaching to occur for the residents are the community/outpatient environment and an acute palliative care unit. Fifty-six per cent (9/16) of the universities have designated faculty positions for palliative medicine with a median number of two positions per site. Only one centre offers a specific palliative medicine examination during the rotation. Feedback from the residents regarding their respective palliative medicine programmes were positive overall.

Findings from our survey indicate an ongoing need for improved education in palliative medicine at the postgraduate level.
Measuring quality of life for patients with terminal illness: the Missoula–VITAS® quality of life index
Authors: Byock Ira R , Merriman Melanie P
Published: May 2003

Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The Missoula–VITAS® Quality of Life index (MVQOLI) has been developed to provide a measure of quality of life that is meaningful to both clinicians and patients. Unique features of the instrument include its focus on the terminal phase of life, the item structure and a scoring system that allows the weighting of each dimension of QOL by the respondent, and the subjective wording of the items that allows respondents to interpret the measured elements according to their own experience. The validity and reliability of the patient-reported survey instrument were tested by administering the 25-item questionnaire to 257 patients in 10 communitybased hospices. Participants were incurably ill with predicted survival of six months or less. Exclusion criteria included inability to communicate, dementia, or psychological symptoms that might be intensified by completing the index. Reliability and validity of the new index were examined using standard statistical and psychometric analyses. The MVQOLI demonstrated internal consistency (Cronbach's alpha = 0.77). MVQOLI total scores were correlated with scores on the Multidimensional Quality of Life Scale–Cancer 2 and with patient-reported global QOL ratings. MVQOLI scores did not correlate with observer-rated functional status scores indicating divergent validity. The MVQOLI could be completed by patients of varied educational level, age, functional status, and length of time with a terminal illness. The instrument is designed to contribute to the task of planning care by evaluating patient-identified sources of distress, strength and satisfaction, including issues of life closure. This information contributes to crafting highly specific interventions. Further studies are necessary to determine the usefulness of the instrument in measuring outcomes of end-of-life care in nonhospice settings, and for racial and diagnostic groups under-represented in this sample.
Relationships between symptom relief, quality of life, and satisfaction with hospice care
Authors: Tierney Ryan M , Horton Samuel M , Hannan Terry J , Tierney William M
Published: May 2003

Hospices were founded to alleviate suffering at the end of life. Quality improvement in hospices should, therefore, target patients' subjective assessments of their care and its outcomes. However, little is known about the relationships among subjective measures of care among hospice patients.

The aim was to assess the relationships between hospice patients' physical and psychological symptoms, quality of life, and satisfaction with inpatient care.

This was achieved with a prospective cohort study of 42 patients admitted to an Australian hospice's inpatient service during a two-month study period. The Edmonton symptom assessment system, McGill quality of life questionnaire, and a new measure of patient satisfaction with hospice inpatient care were used.

It was shown that while there were marked variations in symptoms and quality of life scores, most patients were satisfied with their care. Satisfaction on the day after admission was lower among patients with worse quality of life scores ( r = -0.40, P = 0.008), but there was no correlation with symptoms ( r = -0.12, P = 0.43). Among the 26 patients (62%) with at least one subsequent inpatient interview, satisfaction was correlated with both worse quality of life ( r = -0.51, P = 0.01) and symptoms ( r = -0.41, P = 0.05). The symptom, quality of life, and satisfaction scales all had sufficient precision to identify patients with significant changes between the two interviews.

It can be concluded that satisfaction with hospice care was associated with quality of life more than symptoms, although symptoms became important later during inpatient stays. Patients can assess their care and can provide valuable information for improving palliative care.
Development of an aromatherapy service at a Cancer Centre
Authors: Kite S M , Maher E J , Anderson K , Young T , Young J , Wood J , Howells N , Bradburn J
Published: May 2003

The aromatherapy service at the Cancer Support and Information Centre (CSIC) of this regional Cancer Centre has been continually assessed since its inception in 1993. New methods of assessing complementary therapies, based on the ‘therapy-as-practised’, have been explored. The present study evaluates the service following changes made after an initial pilot. The professional aromatherapist developed an evaluation tool, and formal questionnaires were limited to the Hospital Anxiety and Depression Scale (HADS). HADS was completed before and after a course of six aromatherapy sessions. Of 89 patients referred, 58 patients completed the six sessions. Referrals were made by health professionals working in the Cancer Centre and in the CSIC. The majority of patients were female with breast cancer and were receiving radical oncological treatment.

Tension, stress and anxiety/fear were the most common reasons for referral, and this was reflected in high initial HADS scores. There were significant improvements in HADS scores in the 58 patients completing the course (mean anxiety, depression, and combined scores dropped from 8.9 to 6.2, 6.1 to 4.0 and 15.0 to 10.2, respectively, P < 0.001). Fifty per cent or more of the sample reported a significant improvement in the eight most commonly assessed symptoms. The therapist was initially cautious about using questionnaires, but she gained confidence in using HADS as an assessment tool. The areas covered by her own evaluation tools were broadly comparable to established instruments such as the EORTC QLQ-C30.

We conclude that aromatherapy massage has a role in reducing psychological distress, and improving symptom control in cancer patients. Further service evaluation is needed to promote appropriate referral and effective planning of treatment, and to justify cost. Given the multifaceted nature of complementary therapies, the need to develop new research methodologies is acknowledged.
Evaluation of a hospital-based palliative support service with particular regard to financial outcome measures
Authors: Axelsson Bertil , Christensen Svend Borup
Published: May 2003

The object of this study was a financial assessment of a hospital-based palliative support service, to be made by comparing the study group with a matched historical control group and a group of contemporary reference patients. The staff consisted of one full-time nurse supported by a surgeon one half-day per week. The patients in the study group utilized fewer institutional days than the control group, according to such parameters as duration of terminal hospitalization (P < 0.05), ratio of days at home to total inclusion days (P < 0.001), and days at home during last two months of life (P < 0.01). These three outcome measures all focus on the most care-intensive last months of life and appeared to be sensitive enough to identify economic advantages of palliative care intervention. The palliative support service defrayed its own costs and in excess of that saved another SK17000 per patient (US$2500).
Why is the pain relief of dying patients often unsuccessful? The relatives' perspectives
Authors: Miettinen Terhikki T , Tilvis Reijo S , Karppi Pertti , Arve Seija
Published: May 2003

In order to determine relatives' opinions of the pain relief of dying patients a postal questionnaire was sent to close relatives ( n = 371) of aged patients (mean age 80.1 years) who had died one to two years earlier. In the relatives' opinions, 57% of the patients ( n = 211) had suffered from moderate to severe pain and in 22% ( n = 46) of these the pain relief was unsuccessful. Inadequate pain relief was associated with a feeling of helplessness in the patients (odds ratio 2.6), insufficient self-determination of analgesic use (9.4), unsatisfactory care of daily needs such as nutrition (8.3), and insufficient care of concomitant symptoms such as dry mouth (6.2). The pain relief was also evaluated as having been unsuccessful when the relatives received limited information about the forthcoming death (5.7), when it was difficult to discuss with the clinical staff (5.7), and when the relatives were not supported by, for example, comforting and heartening (7.9) or encouraging to participate in the care (7.2).

In the multivariate analysis, the self-determination of the patients about their pain medication (5.7), difficulties of the relatives to discuss issues with the nursing staff (3.7) and poor atmosphere of the treatment environment (2.8) emerged as the most significant associates of unsuccessful pain relief. The results show that dissatisfaction with the pain management is associated with low appreciation of the treatment of other discomforts and complaints.

Successful pain management therefore requires a holistic approach to the wider spectrum of problems in dying patients.
Sedation for intractable distress in the dying–a survey of experts
Authors: Chater Susan , Viola Raymond , Paterson Judi , Jarvis Virginia
Published: May 2003

‘Terminal sedation’ is a phrase that has appeared in the palliative care literature in the last few years. There has not been a clear definition proposed for this term, nor has there been any agreement on the frequency with which the technique is used. A postal survey of 61 selected palliative care experts (59 physicians, two nurses) was carried out to examine their response to a proposed definition for ‘terminal sedation’, to estimate the frequency of this practice and the reasons for its use, to identify the drugs and dosages used, to determine the outcome, and to explore the decisionmaking process. Opinions on physician-assisted suicide and voluntary euthanasia were also sought. Eighty-seven per cent of the experts responded from eight countries, although predominantly from Canada and the United Kingdom. Forty per cent agreed unequivocally with the proposed definition, while 4% disagreed completely. Eighty-nine per cent agreed that ‘terminal sedation’ is sometimes necessary and 77% reported using it in the last 12 months–over half of these for up to four patients. Reasons for using this method included various physical and psychological symptoms. The most common drugs used were midazolam and methotrimeprazine. Decision making usually involved the patient or family, and varied with respect to the ease with which the decision was made. The use of sedation was perceived to be successful in 90 out of 100 patients recalled. Ninety per cent of respondents did not support legalization of euthanasia. In conclusion, sedating agents are used by palliative care experts as tools for the management of symptoms. The term ‘terminal sedation’ should be abandoned and replaced with the phrase ‘sedation for intractable distress in the dying’. Further research into the management of intractable symptoms and suffering is warranted.
Methicillin-resistant Staphylococcus aureus infection in palliative care
Authors: Prentice Wendy , Dunlop Robert , Armes P J , Cunningham D E , Lucas Caroline , Todd Jennifer
Published: May 2003

Our objective was to assess the impact of methicillin-resistant Staphylococcus aureus (MRSA) infection in palliative care.

The study was conducted at three hospices in south London, totalling 118 beds, and the following two methods were used. Firstly, a retrospective review of the notes of patients who were known to be MRSA positive at admission or were subsequently found to be MRSA positive was taken. Secondly, a prospective study of factors influencing bed occupancy in one hospice was conducted.

The proportion of admissions who were MRSA positive ranged from 4% to 8% in the three hospices. Seven of the 43 patients who had MRSA suffered clinically significant infections. Risk factors for colonization and bacteraemia were similar to the general population. Sites of infection were variable and multiple and treatment regimes for eradication were variable, with varying outcomes. MRSA infection appeared to delay admission because of the need for single rooms, of which there are few. Time spent cleaning rooms after discharge or death also reduced the number of available beds.

It was concluded that MRSA infection is associated with significant morbidity in a small number of palliative care patients. Beds unavailable because of MRSA should be considered in bed occupancy figures, otherwise bed occupancy may appear artificially low. The psychological and financial impact of the infection in palliative care patients needs further evaluation.
How do cancer patients who die at home differ from those who die elsewhere?
Authors: Karlsen Saffron , Addington-Hall Julia
Published: May 2003

Our objective was to investigate how cancer patients who die at home differ from those who do not.

A postbereavement survey of 229 people who registered the death of a random sample of cancer deaths in an inner London health authority was conducted. It was found that a fifth of patients (21%) died in their own home. Overall, 38% were reported to have expressed a preference for place of death, 73% of whom wanted to die at home. Only 58% achieved this. Having special equipment and stating a preference for place of death was associated with an increased likelihood of dying at home; using social and health services for social care was associated with a decreased likelihood of so doing.

It was concluded that, as in previous studies, most patients who expressed a preference wanted a home death, but nearly half did not achieve this. Recognition of a preference for home death, providing the motivation to ‘stick it out’ at home, and adequate community support to provide the practical means to fulfil the preference, appear to be crucial in the achievement of a home death for all who desire it.
The use of the Edmonton Symptom Assessment Scale (ESAS) within a palliative care unit in the UK
Authors: Rees Elizabeth , Hardy Janet , Ling Julie , Broadley Karen , A'Hern Roger
Published: May 2003

The Edmonton Symptom Assessment scale (ESAS) was used on 1004 occasions to assess 71 patients with advanced malignant disease admitted to a palliative care unit in the UK over a six-week period. The median length of inpatient stay was eight days (range 1–36) and the median survival from start of ESAS to death was 16 days (range 2–202). Across all patients there was a trend towards worsening symptom scores over the first five days from admission with a significant deterioration in appetite scores. When scores were analysed retrospectively over five days according to outcome (death–group 1, or discharge–group 2) there was a significant improvement in pain scores in group 2 but no change in overall score, and a significant deterioration in activity, drowsiness and appetite in group 1 with no change in overall score. ESAS did not seem an appropriate tool in this group of patients as the total symptom scores were so often biased by the inevitable increase in individual symptom scores immediately prior to death.
Managing terminally ill prisoners: reflection and action
Authors: Finlay Ilora G
Published: May 2003

In 1997 a young remand prisoner was ‘shackled’ to his bed until shortly before his death. An outcry ensued. This paper discusses issues concerning care of terminally ill prisoners. In Cardiff, the Prison Service, local National Health Service trusts and the hospice have produced joint guidance on the escorting of ill prisoners and managing a bedwatch; these are outlined.
Day hospice care–a review of the literature
Authors: Spencer D J , Daniels L E
Published: May 2003

This paper traces the development and evaluation of day care hospice provision through analysis of the available literature. The CD-ROM was utilized to access and review the Medline, CINAHL and Healthstar databases. In addition, a hand search of Progress in Palliative Care was conducted. The literature describes the provision of a service within a day hospice, and access to day hospice services. Issues regarding the provision of a day hospice as a mechanism to meet consumer needs are explored. The literature reveals little evaluation of evidence-based practice or of the cost-effectiveness of day hospice provision. There is a dearth of research relating to day care, evaluation studies in particular. It is clearly important that future research compares outcomes with other models of service provision.
Development of an instrument to measure terminal restlessness
Authors: Jones C Louise , King Michael B , Speck Peter , Kurowska Anna , Tookman Adrian J
Published: May 2003

Terminal restlessness is a clinical phenomenon that is frequently observed but poorly defined. Its management is important in providing good quality palliative care. We present the development of an objective observer-rated instrument to measure terminal restlessness.
Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review
Authors: Hearn Julie , Higginson Irene J
Published: May 2003

The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a systematic literature review of published research.

The source of the data included studies identified from a systematic search of computerized databases (Medline, psychINFO, CINAHL and BIDS to the end of 1996), hand-searching specialist palliative care journals, and studying bibliographies and reference lists. The inclusion criteria for articles were that the study considered the use of specialist palliative care teams caring for patients with advanced cancer. Articles were assessed and data extracted and synthesized, with studies graded according to design.

A variety of outcomes were considered by the authors. These addressed aspects of symptom control, patient and family or carer satisfaction, health care utilization and cost, place of death, psychosocial indices and quality of life.

Overall, 18 relevant studies were identified, including five randomized controlled trials. Improved outcomes were seen in the amount of time spent at home by patients, satisfaction by both patients and their carers, symptom control, a reduction in the number of inpatient hospital days, a reduction in overall cost, and the patients' likelihood of dying where they wished to for those receiving specialist care from a multiprofessional palliative care team.

It was concluded that all evaluations were of services considered to be leading the field, or were pioneering training and treatments. However, when compared to conventional care, there is evidence that specialist teams in palliative care improve satisfaction and identify and deal with more patient and family needs. Moreover, multiprofessional approaches to palliative care reduce the overall cost of care by reducing the amount of time patients spend in acute hospital settings.
A telephone survey of the provision of palliative day care services
Authors: Copp Gina , Richardson Alison , McDaid P , Marshall-Searson D A
Published: May 2003

A telephone survey was conducted to gather preliminary data in order to identify the nature of palliative day care provision in the UK. A random sample of 131 day centres was taken from 17 regional locations in the UK, providing a 60% representation out of a total of 215 adult day care facilities. A combination of a structured and semistructured interview schedule was used to collect the data. The results obtained from this preliminary survey provided further information on the nature, range, and types of services that are currently provided by UK palliative day care centres; management and organizational issues; and the nature of common problems and care issues of patients attending day centres. Data from the study provided further information on the current status of day care services. The implications for future evaluative research are discussed, particularly in the area of the impact and cost-effectiveness of day care services and the potential work with regard to different models of service provision.
Quality of life of cancer patients and their spouses in palliative home care
Authors: Axelsson Bertil , Sjödén Per-Olow
Published: May 2003

Incurably ill cancer patients ( n = 37) and their spouses, while receiving support from a hospital-based palliative service, were assessed monthly regarding quality of life, using the assessment of quality of life at the end of life instrument. Lowest ratings for patients during the final six weeks were found in the following items: ability to do what one wants, physical strength, global quality of life, and meaningfulness. The pain situation was stable over time. Generally, patients were less anxious than spouses. The least-optimal items at the end of life for the patients' partners were: ability to leave the patient unattended, need for assistance with hygiene/dressing and anxiety. Meaningfulness was the item with the strongest correlation to global quality of life, for both patients and spouses. A more ambitious approach to the existential domain appears to be essential if we wish to optimize quality of life for patients within palliative care.
Specialist palliative care in nonmalignant disease
Authors: Addington-Hall Julia , Fakhoury Walid , McCarthy Mark
Published: May 2003

The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care.

This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials.

The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71 744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care.

It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.
Palliative care in chronic obstructive airways disease: a needs assessment
Authors: Skilbeck J , Mott Laurie , Page Hilary , Smith Diane , Hjelmeland-Ahmedzai Sam , Clark David
Published: May 2003

The view that palliative care should move beyond cancer is widely endorsed, however, there remains a lack of clarity about the level at which this should occur. In order to target the palliative approach effectively, the value of more detailed and localized needs assessment becomes apparent. This paper provides evidence from a study commissioned by a department of public health, where the focus was the palliative care needs of an individual with chronic obstructive airways disease (COAD). Over a six-month period, 63 individuals in the district were interviewed about their experiences of living with COAD and the services utilized, using a combination of qualitative and quantitative research methods. The findings revealed a poor quality of life, relating to a high degree of social isolation and emotional distress, associated with low physical functioning and disability, and physical symptoms. Current service provision focused on acute exacerbations. Consequently, there is a need to manage the health and social care interface more effectively, with a shift in emphasis from reactive ad hoc provision, which is where the palliative approach to care could be best suited to meet the needs identified.
Opioid medication in the palliative care of motor neurone disease
Authors: Oliver David
Published: May 2003

In the palliative care of patients with motor neurone disease (MND) symptoms are encountered that can be helped by the use of strong opioid medication. A retrospective survey of the 32 patients dying of MND at the Wisdom Hospice who required opioids showed that 75% received oral opioids, 94% received parenteral opioids and 72% received both oral and parenteral opioids. The median oral morphine dose was 60 mg/24 h, with a median duration of 51 days and the median parenteral dose was 180 mg/24 h with a median duration of use of three days. The results show that strong opioids can be used safely and effectively in the palliative care of patients with MND.
An audit of long-stay patients in an inner city palliative care centre
Authors: Jennings A L , Naysmith A
Published: May 2003

An audit was carried out of patients with long admissions to a palliative care centre in central London. The records of patients remaining in the centre for more than 28 days were examined to see whether there were particular features characteristic of long-stay patients which could be identified to improve future admission planning.
Community-based palliative care for Bangladeshi patients in east London. Accounts of bereaved carers
Authors: Spruyt Odette
Published: May 2003

The aim of this paper is to describe the palliative care experience of Bangladeshi patients and carers in the Tower Hamlets area in the east of London. Semi-structured interviews were carried out in Sylheti, the Bengali dialect of this community, with bereaved primary carers of 18 patients (10 male, eight female) referred to an east London community palliative care team between 1986 and 1993. It was found that patients were young, with a mean age of males of 55 years (range 34–65) and females of 40 years (range 28–57). Communication difficulties were common. The fluency in English of patients was low, with reliance on family members, especially children, for translation. The diagnosis was known by all patients, but only 56% of carers agreed with disclosure. Team dissatisfaction with communication was recorded in 16 cases. Fourteen patients died in London; however, 13 were buried in Bangladesh. Carers often reported symptoms as poorly controlled. Pain was said to be severe for 14 patients, and pain control said to be poor in 11. Family and friends provided most support during the illness and bereavement. Serious financial difficulties occurred in nine families. General practitioners were involved actively in six cases. In conclusion, there are ethno-specific needs in this particular community, many of which arise from socio-economic factors, recent migration and religious beliefs, and which are highlighted by terminal illness.
Encounters with doctors: quantity and quality
Authors: Smith S D M , Nicol K M , Devereux J , Cornbleet M A
Published: May 2003

Continuity of care and the large numbers of health care professionals who deliver that care are issues that frequently concern patients and their families. This study examined the number of doctors encountered by 50 patients, during the period of their cancer care. This ranged from 4 months to 26 years, with a median time of 2 years and 4 months. The doctors included in this number were general practitioners, doctors met during hospital inpatient admissions and when attending outpatient appointments, and doctors at the hospice. Descriptive statistics are included detailing the total number of doctors encountered by patients; the number met by patients within the first year of their cancer care; and the average number of new doctors met each year.

The minimum number of doctors met was 13, maximum 97 and median 32. Notable examples include one patient who met 31 doctors during a 6-month period, and one patient who met 73 doctors during a period of 2 years and 1 month. Patients in this study with a history of less than 1 year met 28 doctors on average.

Semi-structured interviews with these patients were conducted adopting a qualitative approach. Patients were asked about their recollections of the doctors they had met during their cancer care and what value they attributed to these encounters. Interviews were subject to thematic analysis. The major themes to emerge were: continuity of care, the provision of information and explanations and honesty in that process, breaking of bad news, the manner adopted by the doctor and issues relating to specialist referral.

The large number of health care professionals, including the doctors quantified in this study, involved in the care of each patient represents a major challenge to ‘seamless’ and consistent communication between those involved.
Treasure Weekend: supporting bereaved siblings
Authors: Potts Shirley , Farrell Michael , O'Toole Janet
Published: May 2003

The importance of allowing bereaved siblings the opportunity to be involved and mourn the loss of a sibling family member has gained increasing recognition. Child family members may need support in the same way that parents might need support to cope with a devastating loss. However, there are often few support services specifically focused to support bereaved children. Therefore, this article describes how a children's hospice provides specific support for bereaved siblings, by providing an opportunity for bereaved siblings to share a residential support weekend, known as the Treasure Weekend. The article describes the rationale, aims and the experience of the children's hospice, in facilitating this support service.
Communication and awareness about dying in the 1990s
Authors: Field David , Copp Gina
Published: May 2003

Since the 1960s communication and awareness about dying in modern western societies have been topics for debate, with a considerable amount of literature on the need for open communication and the strategies which can be used by health professionals to improve their communication with patients facing a terminal prognosis. Despite the difficulties of comparing studies using different methodologies and the additional problems of ascertaining patients' knowledge and awareness about their impending deaths, the trend is clear. In advanced industrial societies there is increasing evidence that doctors have shifted from a policy of ‘withholding’ to a policy of ‘revealing’ to the patient his or her terminal prognosis. This change in medical practice is further supported by other data which show an increase in the percentage of those patients who were aware they were dying from chronic diseases, especially cancer. However, despite the perceived trend towards open disclosure of the patient's terminal illness, recent studies have suggested that in their daily encounters with dying patients health workers employ ‘conditional’ rather than ‘full open disclosure’. Such moderating strategies in discussing the patient's prognosis may be employed despite open awareness of a patient's prognosis. This paper examines this apparent paradox by analysing the complex tensions and conflicts of such communication through a discussion of existing literature on modes of communication and patient awareness.
Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial
Authors: Jordhøy M S , Kaasa S , Fayers P , Underland G , Ahlner-Elmqvist M
Published: May 2003

Randomized controlled trials (RCTs) in palliative cancer care often experience methodological problems. In this paper we discuss issues of major concern, including recruitment, patient attrition and compliance, arising from an RCT that compared comprehensive palliative care to conventional care.

The main criteria for trial entry were incurable malignant disease and a survival expectancy of between 2 and 9 months. Patients' health-related quality of life (HRQL), self-assessed by multi-item questionnaires, was a defined endpoint. The planned number of patients was successfully recruited, although the patients were referred late in the course of their disease so that follow-up tended to be short. Compliance in completing HRQL questionnaires was good up to 1 month before the patient's death; but in the final weeks it was found to drop substantially.

Based on our experience, recommendations are given for those planning similar research. Procedures for improving patient recruitment are suggested, stressing the need for local data management, repeated information to referral sources, extensive screening for potentially eligible patients and simple referral routines. Precise inclusion criteria, including prognostic factors other than physicians' estimates of life expectancy, should be used to ensure a sufficient follow-up period. For HRQL assessment, multi-item questionnaires can achieve excellent compliance up to 1 month before patients' death, but in order to evaluate the very final weeks of life we recommend the use of simpler methods.
‘Someone to talk to’ and ‘pain control’: what people expect from a specialist palliative care team
Authors: Jarrett N , Payne S , Turner P , Hillier R
Published: May 2003

This paper presents a qualitative analysis of a subsample of data from a larger investigation into general practitioner referrals to specialist palliative care services (SPCS). The aim was to identify the expectations and perceptions of patients with advanced cancer and their relatives. Twenty-nine individuals were interviewed (18 patients, 11 relatives). Qualitative analysis of the interview transcripts was undertaken using an approach based on interpretative phenomenological analysis. The results indicated that SPCS were perceived as providing psychosocial services, characterized as ‘support’ and ‘someone to talk to’. SPCS were expected to have ‘expertise in symptom control’, particularly in relation to pain management. The study demonstrated that patients' and relatives' expectations of a referral to SPCS were of psychosocial support and symptom control. It is argued that the implications of this restricted view of SPCS may mean that other salient concerns are not raised by patients and relatives.