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

The 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.

Data on pain prevalence and severity were collected prospectively from advanced cancer patients as an integral part of two service evaluations. Six multidisciplinary palliative care teams working in Ireland formed the basis of one study and five teams based in the South of England were included in the second. A total of 695 cancer patients were referred and died in care in a minimum 6-month data collection period. Of these, 70% (486/695) were experiencing pain at referral to the services. After 2 weeks, there was a significant reduction (P < 0.0001) in the levels of pain experienced by patients, and no patient had overwhelming pain. The data emphasize that pain prevalence in advanced cancer patients cared for in the community is as high as that observed in other settings. Multidisciplinary palliative care teams are shown here to be effective in alleviating pain.

This study aimed to document current palliative care initiatives, identify any reported changes in working practice as a result of audit, and determine the opinions of palliative care staff towards audit. All 31 established palliative care services within the former North West Thames Regional Health Authority were sent a brief postal questionnaire on previous and current audit activities. Of the 28 units who responded, most (78%, n = 21) were currently involved in audit with a further 7% (n = 2) planning to implement audit in the near future. Changes as a result of audit included implementation of standards, for example response to referrals; improvements in documentation, for example revision of case notes; and changes to unit practice, such as converting to multidisciplinary care plans. The respondents viewed the main advantage of carrying out any audit project as the improvement or maintenance of the quality of patient care. The principal disadvantage expressed was the time-consuming nature of audit. An audit with a clear aim and thorough design can provide valuable evidence upon which new policies or strategies in palliative care can be based. By educating and training staff in audit and illustrating the benefits, any concerns about carrying out audit could be addressed.

Between 50 and 70% of patients with a terminal illness indicate a preference to remain at home for as long as possible until their death. Nevertheless, a much smaller percentage actually die at home in England and Wales. A new hospice-at-home service in North London for patients with HIV/AIDS is described in this report. Terminal care for HIV/AIDS patients can be provided at home by a multidisciplinary team which offers 24-hour care.

Background: Measurement of the quality of psychiatric care including assessment of patients' views have become increasingly important as expectations of the standard of care rises., Methods: Attitudes and satisfaction of acute psychiatric in-patients were investigated using a questionnaire looking at satisfaction, patients' views on personal and professional qualities of psychiatrists, empowerment and insight., Results: The response rate was 79.2% (137 out of 173). Patients with a diagnosis of a non-affective psychotic illness, particularly those lacking insight were significantly less satisfied with their care. Respondents were more satisfied with the personal rather than the professional qualities of the doctors, and less satisfied with their empowerment and doctors' availability., Conclusions: In-patients' attitudes towards their psychiatric care involves a complex relationship between clinical and sociocultural characteristics. Satisfaction studies can serve as an important monitor and reminder of patient dissent.

Higher research degrees, such as the PhD, MPhil and MD, have existed within universities for 80 years or more, although the differences between the MD and PhD remain confused. A higher research degree training provides individuals with greater research knowledge and skills, and benefits the specialty. Concern exists about the levels of supervision sometimes provided, failure to complete degrees, and the variable levels of research knowledge and skills attained. We propose that higher research degrees in palliative care have four functions: extending personal scholarship, generating knowledge, training for the individual and contributing to the growth of the specialty. Such an approach may include: a formalised first year with taught components such as in research MSc programmes, formal supervision and progress assessment. In palliative care, clinical and academic approaches need greater integration. Multiprofessional learning is essential. To allow individuals to undertake higher research degree programmes, fellowships or specific funding are needed.

Care for the family and bereavement follow-up is considered part of good palliative practice. Risk assessment schedules and recommended methods of follow-up are available but the extent to which these are used in practice is not known. This study examines the bereavement follow-up to families and carers by five palliative support teams in England, UK. We report the bereavement follow-up provided and compare the responses of different teams. Data were collected on all patients using standardized records. This included patient and family details and the initial bereavement follow-up after the death. A total of 320 patients were cared for until death: 55% men, 45% women, mean age 64 years. All patients had cancer except one who had AIDS. Civil status was 64% married, 20% widowed, 5% divorced or separated, 9% single, and 2% other. 49% lived with one other person, 19% alone, and the remainder with two or more people. Spouses were the most significant carers at 62%. Bereavement follow-up was offered to 215 or 67% of families, but this varied greatly between the teams (10%-94%). Initial follow-up was made mainly by the nurses (78%). 50% of follow-ups were by visits, 45% by telephone contact, 3% by letter, and 1% other. Reasons for no follow-up included (a) no relatives 12%, (b) staff did not know the family well enough 29%, (c) carers lived outside the visiting area of the team 25%, (d) carers were judged as having no need 23%, (e) carers refused 1%, (e) other 4%, and (f) not recorded 5%. The results indicate the diversity of bereavement follow-up and suggest a need for training, clear protocols, and further research into the needs of families.

Adrenaline has been used in cardiac resuscitation for many years, yet until recently its mechanism of action and optimal dosage remained poorly investigated or understood. Recent guidelines suggest the use of higher doses of adrenaline at an early stage in paediatric resuscitation. This paper examines the use of adrenaline in paediatric resuscitation and studies the arguments in favour of using higher doses than previously accepted.

Forty-one of 68 palliative care clinicians responded to an anonymous questionnaire assessing the attitudinal, training, management, and support needs for introducing audit. Most respondents (88%) felt it was a good idea; reservations concerned the increase in work load. Although 66% of respondents had received audit training, only 39% were currently involved in audit. Respondents identified a need for more information and feedback, experienced assistance, and support. These concerns have to be addressed by health care managers if audit is to be successfully maintained. Current training sessions do not adequately meet staff needs; palliative care staff require an advanced audit training that includes staff motivation, analysis of results, and the provision of feedback.

This article presents a synopsis of the psychosocial needs of patients and families in the terminal phase of malignant disease, as well as approaches to auditing the care of these clients. Recommendations for future research from the National Cancer Institute of Canada Workshop on Symptom Control and Supportive Care in Patients with Advanced Cancer are presented. These include recommendations on the need for more effective tools to measure the symptoms and burden of illness; an improved taxonomy to describe terminal illness; and studies to (1) measure the impact of interventions for improved symptom relief on the psychosocial distress of patients and families, (2) determine the impact of psychosocial interventions on the symptomatology associated with terminal illness, (3) operationalize "good palliative care" and the optimal delivery of palliative care, (4) assess the auditing of palliative care, (5) develop family typologies of adaptation to terminal illness, (6) describe high risk families, and (7) measure the impact of staff support programs on improving patient/family care.

We compared two measures that have been used by professionals to assess the quality of life and care of patients with advanced cancer. The Support Team Assessment Schedule (STAS) is an instrument for palliative cancer support teams to record and evaluate their care; the Hebrew Rehabilitation Centre for the Aged Quality of Life (HRCA-QL) index was used in the National Hospice Study (USA) to assess patients with advanced cancer. STAS has 17 items, each scaled 0 (best) to 4 (worst), and HRCA-QL has five items scaled 0 (worst) to 2 (best). The STAS and the HRCA-QL were assessed contemporaneously by the members of one support team on 128 consecutive patients referred over 17 months. Seventy-four patients spent more than four weeks in care. Ratings for four out of five HRCA-QL items deteriorated significantly in the four to six weeks before death. HRCA-QL index items correlated with similar STAS items. Correlations were highest at referral, especially in patients seen more than four weeks before death (e.g. symptom control (STAS) with health (HRCA-QL) Spearman's rho = -0.64) and the HRCA-QL total was correlated with STAS subtotal of six items (rho = -0.45). There were few correlations at death. The findings support the validity of both measures for the aspects compared, but indicated that STAS was more sensitive to changes in patients in the last six weeks of life.

Assessments of need carried out so far have concentrated on single diseases or interventions rather than care groups or on people who have multiple pathologies. We therefore began a needs assessment for older people in a central London health authority. The health district--then called Parkside--covered 25 square miles in north London and had a resident population of 432,600 people, of which 7% were aged 75 years and over and 2% were aged 85 years and over. Estimates of the number of people with different disabilities and diseases were calculated using data from the General Household Survey, the office of Population Census Survey (OPCS) Disability Survey or other national or reliable surveys. Although the majority of older people were well--indicating a need for health promotion and disease prevention--we estimated the number of disabled older people in the district was in excess of 25,000, with the most common types of disability being those concerned with locomotion, hearing and personal care. Using data from the OPCS survey we were able to estimate there were 7328 people aged 75 years and over who were in the OPCS top five severity rating, which would mean that they probably required services. For mental health we estimated there would be approximately 6000 older people suffering from clinically significant depression, 6000 older people suffering from anxiety, and between 2740 and 4441 suffering moderate to severe dementia. A next step is to match an assessment of the prevalence of disease and disability, with an estimate of that being served locally.

Objective: To compare assessments made retrospectively by bereaved family members (or the nearest carer to the patient) with assessments made before death by palliative staff and, where available, by patients themselves or the family member., Methods: SETTING--two palliative care support teams. ASSESSMENTS--were recorded prospectively by team staff, patients and their family members for consecutive patients referred, and then were recorded retrospectively by family members during interview seven months after bereavement. MEASURES--seven items each rated 0 (best) to 4 (worst) using standard definitions. The rater was asked to average the severity over one week. ANALYSIS--ratings were tested for percentage agreement, for Cohen's Kappa (which controls for chance agreement) and for Spearman correlations., Results: Staff ratings and family members' retrospective ratings, which described the last week of life, were available for 35 patients. Six patients and seven family members had also been interviewed shortly before the patient's death. The main problems identified by all raters were similar: family anxiety, symptom control, patient anxiety and pain control. For three items, practical aid, wasted time and communication, agreement was good--all cases except one were equal or within one score. However, problems were rarely identified for these items. For the other four items: pain control, other symptom control, family anxiety and patient anxiety, there was little agreement, Cohen's Kappa ranged 0.05-0.22. Agreement for one item (patient anxiety) was significantly improved if a patient had died at home. Comparison of ratings made by the family members before the death and seven months after bereavement suggests that family members alter their assessments during bereavement., Conclusion: Retrospective assessments by bereaved family members may be valid for some items related to service provision, but not as the sole assessment of a patient's pain, symptoms or anxiety. We suggest that studies which rely on these retrospective ratings should assess the validity of their responses and record more information about the mood and grief of the family member.

Palliative medicine has a history of critical appraisal dating back to the start of the hospice movement during the 1970s. Methods and audit tools are available and have been tested, especially for clinical audit. Practical approaches such as the Support Team Assessment Schedule, the Edmonton Symptom Assessment System and topic audits are particularly recommended. Developments in clinical audit could lead to clinical algorithms or protocols to assist patient management. Organizational audit is less well developed, and the scientific basis of choosing the standards is questioned. However, only with the piloting of organizational audits will their true value emerge. There are, however, constraints of time and resources: audit should be cost effective and in the future will need management and evaluation.

Palliative care arose out of the change from acute to chronic causes of death and the emphasis of health care on improving quality of life. In the United Kingdom, specialist palliative care is provided mainly for cancer patients through hospices and support teams, which have grown rapidly in the last 30 years. Single sites and more recently several units have demonstrated their effectiveness, acceptability and efficiency. However, the majority of people who die will not receive these services but will receive much of their care in hospital, nursing home and community settings. The growing numbers of people who are likely to die from HIV/AIDS and the growing numbers of older people make it important that palliative care becomes more integrated with hospital, community and general practitioner services. Palliative care should become a gradually increasing part of care from diagnosis to death, rather than being concerned only with the terminal phase. A palliative care component and appropriate standards could be included in the needs assessment and the contracts for many hospital and community services. In research on new treatments, particularly for cancer and HIV/AIDS, palliative aspects should be measured along with survival and the usually fairly basic estimates of quality of life. Hospices, and in particular support teams and day care, require further evaluation if they are to extend their role to providing care for the younger people with HIV/AIDS and the older people who are dying from chronic diseases such as cardiovascular disease.

This study aimed to assess the validity of the Support Team Assessment Schedule (STAS), a measure of the outcome of palliative care, through comparisons with the views of patients and family members. STAS ratings completed by two support teams were compared with (1) patients' ratings and (2) family member/carer ratings of seven (of the total 17 STAS) items, collected by independent interviewers. Of 183 patients referred to the teams, 84 (46%) were interviewed and 99 (54%) could not be contacted. Sixty-seven patients had family members or carers, all of whom were interviewed. Tests for agreement between team and patient were high for four items, and showed moderate correlations (Spearman's rho ranged 0.45-0.66) for five items, excepting two items including family needs. The summed scores for seven items were correlated, rho = 0.66, p < 0.0001. Where differences were found, team members identified more problems than patients' self-ratings, except for one item, 'pain control', where team members identified fewer problems. Team ratings were usually closer to those of the patients than to those of the family member; a team rating often lay between the patient's and family member's rating. The STAS is a measure of professional assessment which is independent from, although based on, the patient and family. The results support the validity of STAS as a measure of the outcome of palliative care from the perspective of a palliative care team.

The palliative care of 227 consecutive patients by two support teams was measured according to 17 key indicators in the Support Team Assessment Schedule (STAS), an instrument previously developed and validated for use in these settings. Mean time in care was 71 days (range 1-547); 56 per cent of patients died at home, 26 per cent in hospital, 18 per cent in a hospice. Totalled ratings (sum of 15 items, excluding two items owing to missed ratings) improved in 83 per cent of cases, remained unchanged in 3 per cent and deteriorated in 13 per cent. The main problems which the STAS identified at referral were family anxiety, symptom control, patient anxiety and communication between patient and family. Fifteen of the 17 items showed significant improvements (Wilcoxon Z ranged from -3.18 to -8.20, p less than 0.00005) between referral ratings and ratings for the last week of the patient's life; family anxiety and spiritual needs did not. Patient anxiety and symptom control, although improved, also remained relatively severe at death. These results demonstrate the value of measuring key indicators and indicate areas where improvement in palliative care is needed.

We report the work of two community teams who care for people with AIDS/HIV related illness, the characteristics of patients referred, and the impact of the teams on four aspects of quality of life. Data was collected on 140 patients (85 St. Mary's Home Support Team, 55 Bloomsbury Community Care Team) who were referred to and remained in the care of these teams until death. All patients were male, mean age 37.9 years, 116 were homosexual. Most referrals were from genito-urinary medicine clinics (48%) or AIDS wards (41%). There was a wide range of reasons for referral. At referral 62% were in hospital and 35% at home. Mean time in care was 31 weeks 5 days. Fifty-seven per cent died in hospital, 22% at home and 21% in a hospice. The Support Team Assessment Schedule (STAS), consisting of 17 items of care, was used by the teams to measure aspects of quality of life. Throughout care until death four STAS items: pain control, symptom control, patient anxiety and practical aid are reported in detail. Symptom control was a commonly severe problem at referral and although the teams had some success in improving this item it remained a serious problem throughout care. Patient anxiety, also a commonly severe problem at referral, improved significantly throughout care. Pain control was less commonly severe at referral and improved significantly throughout care. Practical aid, in contrast, was rarely a severe problem at any stage of care.

This paper describes a consecutive series of 103 patients with HIV and AIDS related illnesses who were referred to, and remained in, the care of two community teams. The characteristics of the patients are outlined and the early experiences of the teams are described. The findings of this study should assist doctors and nurses caring for patients with HIV and AIDS related illnesses in the community, and provide valuable data for service planners.

The use of slow release morphine was compared between those with cancer and those with advanced HIV disease in two retrospective studies covering a total of 512 patients at home. Pain was found to be less severe in HIV/AIDS but still requiring opioid use in over a third of patients of which 14% needed subcutaneous diamorphine infusion when seriously ill at home. Slow release morphine was used by 45% of those with cancer and 17% of those with HIV/AIDS. It was found to be a simple and convenient preparation for use at home with most patients never needing more than 30 mg twice daily. Half the cancer patients prescribed slow release morphine were able to take it until the day of death.