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 microg/h) with a median of 1.2 mg/day (50 microg/h). Median doses slowly increased throughout the observation period to 2.4 mg/day (100 microg/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.
This postal survey among 174 UK palliative physicians, aimed to assess current practice and perceived problems within the management of venous thromboembolism (VTE) in patients with advanced cancer. The questionnaire was returned by 131 out of 174 (74%) of the doctors surveyed. The most common estimated incidence of patients with VTE was 1-5%. The diagnosis of VTE is usually confirmed by further investigation and in general, outpatients are more likely to be anticoagulated than inpatients. Problems with anticoagulation include bleeding, international normalized ratio instability, appropriateness of anticoagulation, practical difficulties associated with monitoring, and recurrent VTE. Although probably less effective, 77 out of 128 (60%) of respondents use subtherapeutic regimes in order to minimize the risks. Patients with advanced malignancy and VTE are anticoagulated, if considered appropriate, by the vast majority of palliative physicians in the UK. Warfarin has been abandoned in favour of low-molecular-weight heparin (LMWH) by 26%. LMWH provides anticoagulation with no need for monitoring, has no significant drug interactions and is not affected by liver dysfunction. Theoretically, LMWH is more effective than warfarin in the secondary prevention of VTE with less risk of bleeding.
World Health Organization's essential drugs list can control the highly prevalent HIV-related pain and symptoms. Availability of essential medicines directly influences clinicians' ability to effectively manage distressing manifestations of HIV.
To determine the availability of pain and symptom controlling drugs in East Africa within President's Emergency Plan for AIDS Relief-funded HIV health care facilities.
Directly observed quantitative health facilities' pharmacy stock review. We measured availability, expiration and stock-outs of specified drugs required for routine HIV management, including the World Health Organization pain ladder.
A stratified random sample in 120 President's Emergency Plan for AIDS Relief-funded HIV care facilities (referral and district hospitals, health posts/centres and home-based care providers) in Kenya and Uganda.
Non-opioid analgesics (73%) and co-trimoxazole (64%) were the most commonly available drugs and morphine (7%) the least. Drug availability was higher in hospitals and lower in health centres, health posts and home-based care facilities. Facilities generally did not use minimum stock levels, and stock-outs were frequently reported. The most common drugs had each been out of stock in the past 6 months in 47% of facilities stocking them. When a minimum stock level was defined, probability of a stock-out in the previous 6 months was 32.6%, compared to 45.5% when there was no defined minimum stock level (χ (2) = 5.07, p = 0.024).
The data demonstrate poor essential drug availability, particularly analgesia, limited by facility type. The lack of strong opioids, isoniazid and paediatric formulations is concerning. Inadequate drug availability prevents implementation of simple clinical pain and symptom control protocols, causing unnecessary distress. Research is needed to identify supply chain mechanisms that lead to these problems.
We report a prospective study assessing the prevalence and severity of physical and nonphysical symptoms, and the benefits from treatment and intervention, in advanced cancer patients presenting to a local palliative care unit in Hong Kong. Patients were assessed by a modified version of the support team assessment schedule (STAS). The study highlighted some symptoms which needed better control, and also reinforced the team morale by demonstrating aspects where there was definite improvement. In general, the STAS was found to be practicable and acceptable by our patients and staff. The most important benefit gained from the study was the successful dissemination of the concept of audit and quality assurance throughout the unit, which is essential for continuous improvement in the future.
The clinical significance of studies on survival predictors in terminal cancer patients is hindered by both methodological limitations and the difficulty of finding common predictors for all final events in cancer related deaths. To evaluate the published medical literature concerned with the survival of patients with terminal cancer and identify potential prognostic factors, major electronic databases including MEDLINE (1966-), CANCERLIT (1983-) and EMBASE (1988-) were searched up to September 1999. Studies were included in our review if published in English, were cohort studies, addressed the identification of clinical prognostic factors for survival and looked at samples with median survival of < or = 3 months. Data extracted from selected papers included: sample size, median survival, type of study, sampling frame, cohort type, type of statistical analysis (univariate or multivariate), choice of models and underlying assumptions, predictors examined and their reported level of statistical significance. A total of 24 studies were found and reviewed. On the basis of these studies, performance status and the presence of cognitive failure, weight loss, dysphagia, anorexia and dyspnoea appear to be independent survival predictors in this population. Clinical estimation of survival by the treating physician appeared independently associated with survival but the magnitude of the association generally appeared small. Clinical predictions should be considered as one of many criteria, rather than as a unique criterion by which to choose therapeutic interventions or health care programmes for terminally ill cancer patients. The use of convenient samples as opposed to more representative inception cohorts, the inclusion of different variables in the statistical analyses and inappropriate statistical methods appear to be major limitations of the reviewed literature. Methodological improvements in the design and conduction of future studies may reduce the prognostic uncertainty in this population.
The palliation of cancer-related breathlessness is challenging and complex. An open pilot study was conducted, exploring the safety and efficacy of acupuncture in 20 patients who were breathless at rest and whose breathlessness was directly related to primary or secondary malignancy. Sternal and LI4 acupuncture points were used. Outcome measures included pulse, respiratory rate, oxygen saturation and patient-rated visual analogue scales of breathlessness, pain, anxiety and relaxation. At each time point the mean values of the variables were calculated and compared to their pretreatment levels (Student's t-test). Seventy per cent (14/20) of patients reported marked symptomatic benefit from treatment; there were significant changes in VAS scores of breathlessness, relaxation and anxiety at least up to 6 hours post acupuncture which were measured to be maximal at 90 minutes (p < 0.005, p < 0.001, respectively). There was a significant reduction in respiratory rate, which was sustained for 90 minutes post acupuncture (p < 0.02). The therapeutic value of acupuncture in the management of breathlessness requires further evaluation.
To identify all literature regarding depression in patients with advanced cancer and among mixed hospice populations, and to summarise the prevalence of depression according to different definitions.
A systematic review was performed using extensive electronic and hand searches. All studies with quantitative data on prevalence of depression were included and categorised according to their definition of depression.
We identified 46 eligible studies giving information on the prevalence of depression, and a further four which gave information on case finding. The most widely used assessment of depression was the Hospital Anxiety and Depression Scale (HADS), which gave a median prevalence of 'definite depression' (i.e., a score on the depression subscale of > 10) of 29%, (interquartile range, IQR, 19.50-34.25%). Studies that used psychiatric interviews indicated a prevalence of major depressive disorder ranging from 5% to 26%, with a median of 15%. Studies were generally small (median sample size 88.5, IQR 50-108), had high numbers of nonresponders, and rarely gave confidence intervals for estimates of prevalence.
Depression is a common problem in palliative care settings. The quality of much of the available research is poor, based on small samples of patients with very high nonparticipation rates. The clinical importance of depression is described in subsequent papers.
Palliative care for end-stage renal disease (ESRD) is developing in Hong Kong. This is the first local study to explore the symptom burden and quality of life (QOL) of ESRD patients on chronic dialysis and palliative care. This was a prospective cross-sectional study conducted on ESRD patients in a hospital in Hong Kong from January 2006 to April 2007. Data collected included demographics, socioeconomic status, modified Charlson Comorbidity Index (CCI), prevalence and intensity of 23 ESRD-related symptoms as rated by numerical rating scale (0-10), Brief Pain Inventory and QOL by MOS SF-36. A total of 179 ESRD patients completed the study; 45 patients (25.1%) were in the palliative care group and 134 patients (74.9%) in the dialysis group. The palliative care group were older (73.1 +/- 7.1 vs 58.2 +/- 11.4 years, P < 0.001), had marginally higher modified CCI (8.5 +/- 1.9 vs 6.1 +/- 2.4, P = 0.05), had more diabetics (62.2 vs 35.8%, P < 0.001) and were of poorer socioeconomic status than the dialysis group. The mean number of symptoms was 8.2 +/- 3.9 and 9.3 +/- 4.7 in the palliative care and the dialysis group, respectively (P = NS). Fatigue, cold aversion, pruritus, lower torso weakness and difficulty sleeping were the five most prevalent symptoms in both groups, and were also among the most intense symptoms. QOL was significantly impaired in both groups. Scores of all QOL domains correlated negatively with the number of symptoms (P < 0.001). Our ESRD patients under palliative care and dialysis had overlapping symptom prevalence and intensity, significant symptom burden and impaired QOL.
The aim of this review was to find the evidence for or against the use of hypnotherapy in the treatment of symptoms in terminally ill adult cancer patients. The title and abstract were evaluated following a search through Index Medicus/MEDLINE, EMBASE, CINHAHL, CancerLit, AHMED, Psychinfo, CISCOM, Cochrane and DARE. Search terms included hypnotherapy, cancer, terminal care and palliative care. Inclusion criteria included systematic reviews, randomized controlled trials, observational and prospective studies, retrospective surveys, case studies and reports. A total of 27 papers were evaluated. Two reviewers assessed the studies, one extracted the relevant data and 10% were evaluated independently by a third reviewer. The 27 papers comprised a randomized controlled trial, an observational study, a retrospective questionnaire and 24 case studies. Hypnotherapy was used to treat a variety of symptoms, including pain, anxiety and depression. The poor quality of the studies and heterogeneity of the study population limited further evaluation; further research is required to understand the role of hypnotherapy in managing symptoms.
Even though depression has serious and wide-ranging effects on outcomes in palliative care, errors in the identification of depressed patients are common.
To examine the clinical validity of widely publicised one- and two-question screening tools for depression in two palliative care settings. Also, to examine the construct validity and acceptability of a new empirically derived algorithm.
Participants were Australian palliative care patients in an inpatient hospice (n=22) or the community (n=69). Patients completed an unstructured interview about their feelings, questions relevant to three reference standards, two screening questions for depression and questions about the acceptability of the screening questions.
The clinical validity of the one- and two-question screening tools did not generalise across the two care settings. In contrast, the algorithm met stringent criteria for clinical validity for two reference standards in both settings. The algorithm also selectively identified patients whose unstructured interviews referred to themes consistent with depression. The algorithm includes potentially sensitive questions about anhedonia and depressed affect. However, almost all patients and staff reported that asking such questions soon after referral was acceptable.
A four-question algorithm designed to identify patients who warrant follow-up for depression showed clinical validity, generalizability and construct validity, and the content was acceptable to patients and clinicians.
This article reviews a sample of narratives written since 1950 by people knowingly facing death as a result of cancer and other diseases, in order to compare experiences and show how these relate to wider changes in practice in end of life care.
A bibliographic search of libraries, archives, journals and internet sources located English spoken literature, including books, poems, newspapers, journal articles, diaries, and internet postings of writings by people facing terminal disease. Bibliometric and qualitative content analysis explored changing authorship, experiences, purpose in writing, and reported the impact on readers.
The initial search located a wide range of published and unpublished narratives, to which inclusion/exclusion criteria were applied, yielding 148 narratives by different authors since 1950. A purposive sub-sample of 63 of these narratives was reviewed.
Over the last half century there have been changes in both the volume of available literature and patterns of writing about end of life experience. Therapeutic benefits of writing are reported as a way of making sense of dying combined with a strong sense of purpose in sharing the story. There is a clear awareness of social needs when dying, along with issues of communication with medical staff, symptom control, realities of suffering, and spiritual aspects of dying. Differences are found in the nature and style of writing about cancer in comparison to other illnesses.
Ageing nations have growing needs for end of life care, but these have never been projected in detail. We analysed past trends in place of death (1974-2003) and projected likely trends to 2030 in England and Wales and from these need for care.
Mortality trends and forecasts were obtained from official statistics. Future scenarios were modelled using recent five-year trends in age and gender specific home death proportions to estimate numbers of deaths by place to 2030, accounting for future changes in the age and gender distribution of deaths.
Annual numbers of deaths fell by 8% from 1974 to 2003, but are expected to rise by 17% from 2012 to 2030. People will die increasingly at older ages, with the percentage of deaths among those aged 85 and expected to rise from 32% in 2003 to 44% in 2030. Home death proportions fell from 31% to 18% overall, and at an even higher rate for people aged 65 and over, women and noncancer deaths. If recent trends continue, numbers of home deaths could reduce by 42% and fewer than 1 in 10 will die at home in 2030. Annual numbers of institutional deaths (currently 440,936) will be 530,409 by 2030 (20% increase).
In England and Wales home deaths have been decreasing. The projections underline the urgent need for planning care to accommodate a large increase of ageing and deaths. Either inpatient facilities must increase substantially, or many more people will need community end of life care from 2012 onwards.
This study explores the changing characteristics of patients admitted to Sir Michael Sobell House, Oxford, between 1978-89. These dates represent the period between the first available records and the first computerized records. Analysis is between these dates and has been undertaken to enable future comparison between the early life of the unit with more recent developments. Using secondary sources the following areas were compared statistically: information related to general characteristics such as sex and age; information related to referral such as the number of referrals; diagnosis on referral and reasons for referral; information related to problems presented and place of death. Significant findings included an increase in referrals and patient survival; an increase in patients dying at home; a decrease in symptoms presented on referral and fewer referrals for terminal care; and an increase in referral for rehabilitation, assessment and support. Reasons for these changes are suggested.
Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation.
A survey of hospice and specialist palliative care services in the UK in the year 1994-5 was undertaken, enquiring about inpatient, home care and day care services. Over 500 questionnaires were sent out in June 1995 and replies were analysed by the Hospice Information Service. Details of admissions, deaths, discharges and length of patient care are given, as well as an analysis of ethnic grouping, diagnosis, age and sex of patients. The response rates to various parts of the questionnaire are tabulated and national estimates are made of the numbers of patients receiving palliative care from specialist providers. The survey is one in a series of annual surveys and the development of specialist palliative care services over the last five years is discussed.
The purpose of this study was to ascertain where patients with malignant disease died and to establish whether such factors as age, sex, marital status, place of residence, diagnosis and interval between diagnosis and death bore any relation to the place of death. All medical records of 203 patients who died in one particular Swedish county in 1990 of cancers of the GI tract, the urogenital organs, the breast, the skin and the thyroid were analysed. Of all 203 patients, 25 (12%) died at home, 49 (24%) in nursing homes and 129 (64%) in hospital. The proportion of home deaths was significantly smaller when the interval from diagnosis to death was less than one month. Death in a nursing home, compared with death in a hospital, was more usual among patients older than 80 years, among those living more than 40 km from the hospital and among those from areas where the local health care centre had a nursing home attached.
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.
The objective of this study was to repeat part of a survey carried out the previous year and to describe and quantify the hospice and palliative care inpatient units throughout Great Britain and Ireland for the year 1991, this also to include a survey of palliative care day centres and hospital support services.
Questionnaires were sent to 346 hospice and palliative care services in Great Britain and Ireland. Replies were analysed by the Hospice Information Service.
A total of 293 replies were received (84% response). The report details bed usage, length of stay and admissions, deaths and discharges in inpatient units. It also describes provision of day centre places and type of services offered. An initial assessment is made of the different types of hospital palliative care support services available. An estimate of the number of patients receiving palliative care in inpatient units and in day care centres is made.
The purpose of this review was to identify and critique validation studies focusing on the Edmonton Symptom Assessment System (ESAS), a commonly used symptom assessment tool for advanced cancer and palliative patients.
Using a comprehensive literature search, the authors identified and screened 87 publications. Thirteen articles were selected for in-depth review, based on the following inclusion criteria: psychometric studies with a primary focus on the ESAS, 1991--2006 publication dates and peer-reviewed English language publications.
Most studies involved cancer patients (n = 11). The ESAS format varied across studies, in terms of scale format, item number, item selection and language. Studies focused on gathering reliability estimates (n = 8), content validity evidence (n = 1), concurrent validity evidence (n = 5), predictive validity evidence (n = 1), and sensitivity and/or specificity (n = 3). None of these studies involved patients' perspectives as a source of validity evidence.
The use of varying instrument formats and limited psychometric evidence support the need for further ESAS validation studies, including the involvement of patients.
A survey of the inpatient palliative care services throughout Great Britain and Ireland was undertaken, enquiring about activity for the year 1993. This is one in a series of annual surveys of the various aspects of palliative care. Questionnaires were sent out at the end of April 1994, and 174 replies were received from 200 initially sent (87%). Replies were analysed by the Hospice Information Service. The report gives details of admissions, deaths and discharges and considers length of patient stay and bed occupancy. A discussion of the apparent discrepancies in the reported statistics is included. Palliative care for children is separately considered, and admissions of noncancer patients are detailed.
De-institutionalization of health care services provided to terminally ill cancer patients is a cost-effective strategy that underpins health care reforms in Canada. The objective of this study therefore is to evaluate the economic implications associated with Canadian innovations in the delivery of palliative care services.
We identified 16,282 adults who died of cancer between 1993 and 2000 in two Canadian cities with newly introduced palliative care programs. Linkage of administrative databases was used to measure healthcare resource utilization. We sought to describe the utilization of palliative care services and its consequences for overall health care system costs.
Use of palliative services increased from 45 to 81% of cancer patients during the study period. Identifiable public health care services cost dollars 28093Cdn/patient (19033US dollars, 11,508GBł, 17,778 euro) for terminally ill cancer patients in their last year of life. Acute care accounted for two-thirds (67%) of these costs; physician (10%), residential hospice care (8%), nursing homes (6%), home care (6%) and prescription medications (3%) comprise the remainder. Increased costs associated with the introduction of palliative care programs were offset by cost savings realized when terminally ill cancer patients spent less time in hospital. Palliative home care and residential hospice care accounted for the bulk of this substitution effect. Cost neutrality was observed from the public perspective.
These results demonstrate that the introduction of comprehensive and community-based palliative care services resulted in increased palliative care service delivery and cost neutrality, primarily achieved through a decreased use of acute care beds.
In Japan, the first government-approved hospice (GAH) and palliative care unit was established and commenced operations in 1990, and hospice medical care was made eligible for health insurance coverage. By 31 December 2000, the number of GAH institutions had increased to 86 (1,590 beds). The ratio of hospices to population in Japan is currently approximately 1:1.5 million, with an average of one hospice bed for approximately every 80,000 people. This study of institutions reports a survey conducted to determine the number of deaths (hospice unit and home) of GAH cancer patients, and to determine the servicing status of hospice home care for the period 1995 through 2000. The place of death of the patients cared for by GAHs in 2000 were: hospice units 97.7% and home 2.3%. GAH patient deaths (both inpatient and at home) in 2000 was 2.6% of the total number of cancer patients' deaths, an increase of 3.8-fold since 1995. Of the total number of GAH institutions, 62% are engaged in home care services and 91 % offer hospice care by hospice-assigned doctors. In addition, 72% offer team care with nurses based at Home Care Agencies. In order for the hospice (including home care service) to become established in a way most appropriate to each region of Japan, GAH institutions must assume significant promotional roles in their respective regions. One of the goals and assignments of establishing medical service with hospice home care in Japan is to develop the systematic care programs of GAH institutions, which include home care service in addition to the already established hospice unit and outpatient services.
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.
Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998-2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life.
The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998-2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of 'family caregiving', 'end of life', and 'needs' are required as well as greater application and testing of theoretical and conceptual explanations.
Our aims were to determine the extent of coverage by designated palliative care services of the population of terminally ill cancer patients in South Australia, and to identify the types of patients who receive these services and the types who do not. All designated hospice and palliative care services in South Australia notified to the State Cancer Registry the identifying details of all their patients who died in 1999. This information was cross-referenced with the data for all cancer deaths (n=3086) recorded on the registry for 1999. We found that the level of coverage by designated palliative services of patients who died with cancer in 1999 was 68.2%. This methodology was previously used to show that the level of coverage had increased from 55.8% for cancer deaths in 1990 to 63.1% for those in 1993. Patients who died at home had the largest coverage by palliative services (74.7%), whereas patients who died in nursing homes had the lowest coverage (48.4%). Patients who did not receive care from these palliative services tended to be 80 years of age or older at death, country residents, those with a survival time from diagnosis of three months or less, and those diagnosed with a prostate, breast, or haematological malignancy. Gender, socioeconomic status of residential area, and race were not related to coverage by a designated palliative service, whereas migrants to Australia from the UK, Ireland, and Southern Europe were relatively high users of these services. We conclude that the high level of palliative care coverage observed in this study reflects widespread support for the establishment of designated services. When planning future care, special consideration should be given to the types of patients who most miss out on these services.
Since 1987 health authorities in England have been required to make plans for palliative care provision, but their record in doing so has been patchy. The production of health improvement plans (HlmPs), in which each health authority must set out its priorities and actions designed to improve the health and well-being of its local population, provides an opportunity to examine the extent to which palliative care provision in the NHS is regarded as a priority by policy makers in England. This paper reports on a structured documentary review of the HlmPs published by the 99 health authorities in England. The review indicates that at the moment, in spite of the longstanding duty placed on health authorities to develop strategic plans for palliative care and to assess the level of local palliative care needs, not all have made significant progress in this direction. Among those that do have plans for palliative care, the vast majority of these plans are for people with cancer. What emerges most clearly is a sense in which specialist palliative care, especially for non-cancer patients, is perceived as an 'optional extra' by many health authorities rather than an integral and essential part of the overall supportive care strategy which they clearly are at pains to develop.
We report on a study of the place of research on supportive, palliative and end-of-life care within the United Kingdom Research Assessment Exercise of 2001 and 2008. Sixty-seven Higher Education Institutions in 2001 and 66 in 2008 contributed work to the Research Assessment Exercise relevant to supportive, palliative and end-of-life care. This comprised 16 subject areas in 2001 and 25 in 2008, and was generated by 178 authors in 2001 and 176 authors in 2008. Seven 'high-intensity groups' of concentrated research activity were identified in 2001, and eight such groups in 2008. Between the years little growth occurred in contributions to the Research Assessment Exercise relating to supportive, palliative and end-of-life care, and the 'high-intensity groups' remain relatively fragile. With one exception, there is no concentration of effort in clinical studies relating to the medical aspects of supportive, palliative and end-of-life care. By 2008 there were still less than 40 university academics in the UK with major commitments to research in supportive, palliative and end-of-life care, as measured by their Research Assessment Exercise participation.
With increasing patient age in Western countries, evidence indicates a pervasive pattern of decreasing healthcare expenditures and less aggressive medical care, including end-of-life (EOL) care. However, the impact of age on EOL care for Asian cancer patients has not been investigated.
To explore how healthcare use at EOL varies by age among adult Taiwanese cancer patients.
Retrospective cohort study using administrative data among 203,743 Taiwanese cancer decedents, 2001-2006. Age was categorized as 18-64, 65-74, 75-84, and ≥85 years.
Elderly (≥65 years) Taiwanese cancer patients were significantly less likely than those 18-64 years to receive aggressive treatment in their last month of life, including chemotherapy, >1 emergency room visits, >1 hospital admissions, >14 days of hospitalization, hospital death, intensive care unit admission, cardiopulmonary resuscitation, intubation, and mechanical ventilation. However, they were significantly more likely to receive hospice care in their last year of life.
Elderly Taiwanese cancer patients at EOL received less chemotherapy, less aggressive management of health crises associated with the dying process, and fewer life-extending treatments, but they were more likely to receive hospice care in their last year and to achieve the culturally highly valued goal of dying at home.
We used complete Centers for Disease Control death certificate records and the Centers for Medicare and Medicaid Services 100% Standard Analytic File for hospice claims for 2002 to examine differences in hospice utilization between African-American and white decedents living in the United States. White decedents were more likely to use hospice in the year before their death than African-American decedents (29% vs 22%). Cause-specific hospice utilization rates among women were consistently higher than among men within a given race. African-American decedents were consistently less likely to use hospice than white decedents for almost all conditions. Hospice utilization was lower among African-American than among white decedents in 31 of 40 states. The higher the overall hospice utilization in a state, the less the positive difference between white and African-American usage rates; that is, the more accepted hospice is, as measured by 'market share', the lower the racial disparity in its use.
Palliative medicine is not recognized as a medical specialty in any of the five Nordic countries, but there is a great need for physicians with specialty qualifications to serve on an increasing number of palliative care services. The Associations for Palliative Medicine in the five countries agreed to develop a common Nordic course on a specialty level.
A theoretical training course in six modules in two years was developed, based on the British palliative medicine curriculum and including a limited research project and a written exam. Twenty-two out of 30 students completed the first course as scheduled in 2005, and five more have obtained their course diploma later. The evaluation from the students showed very satisfactory personal experiences and subjective learning outcomes, and a positive influence on the overall development of palliative care in the respective countries.
The Nordic Specialist Course in Palliative Medicine has proved a successful Nordic collaboration and may form the basis for a full specialist training programme.
To describe English specialist palliative care (SPC) services' provision for, and attitude to, heart failure patients, and to identify developments of particular interest or expertise in this area.
Postal survey of all lead consultants of English SPC services, September 2004.
Of 397 services, 233 replied (response rate 59%); 222 (95%) thought SPC had a role in severe/end stage heart failure, while three (1%) did not. A total of 197 services (85%) accepted heart failure patients, 26 (11%) did not. The most common reasons for not accepting heart failure patients were lack of resources or beds, implications for staff training or an organizational decision. The mean number of heart failure patients currently under a service was 2.2, but 15 had more than five (maximum 53). Fifteen services (6%) had specific referral criteria for heart failure patients, including recurrent hospital admissions without symptomatic improvement, inappropriateness of further hospital admission and severity of heart failure. Twelve services (5%) had or were developing treatment guidelines for heart failure: five were end of life pathways, three covered breathlessness management and three were symptom control guidelines. Some 137 services (59%) described local collaborative initiatives between SPC, heart failure services and primary care, such as mutual education, joint working and working groups. A number of models of joint working practices were described in detail. Twenty-seven (12%) knew of national initiatives.
The current situation of SPC services in England for patients with heart failure varies widely. One in 10 SPC services in this audit did not accept heart failure patients. Few have developed services of significant size. Local collaborative initiatives are common. Specific referral criteria and symptom control guidelines have been developed. Their role in promoting good palliative care in patients with heart failure remains unclear. Better dissemination of practical knowledge gained by these initiatives could significantly improve the provision of SPC services to heart failure patients.
Increased attention is being paid to the place where people die with a view to providing choice and adequately planning care for terminally ill patients. Secular trends towards an institutionalised dying have been reported in Britain and other developed world regions.
This study aimed to examine British national trends in place of death from 2004 to 2010.
Descriptive analysis of death registration data from the Office for National Statistics, representing all 3,525,564 decedents in England and Wales from 2004 to 2010.
There was a slow but steady increase in the proportion of deaths at home, from 18.3% in 2004 to 20.8% in 2010. Absolute numbers of home deaths increased by 9.1%, whilst overall numbers of deaths decreased by 3.8%. The rise in home deaths was more pronounced in cancer, happened for both genders and across all age groups, except for those younger than 14 years and for those aged 65-84, but only up to 2006. The rise was more evident when ageing was accounted for (age-gender standardised proportions of home deaths increased from 20.6% to 23.5%).
Following trends in the USA and Canada, dying is also shifting to people's homes in Britain. Home deaths increased for the first time since 1974 amongst people aged 85 years and over. There is an urgent need across nations for comparative evidence on the outcomes and the costs of dying at home.
This research examines 2006 population-based data on persons who died in US nursing homes (NHs) and received hospice in the NH.
We compared dying persons characteristics and lengths of hospice stay in five US states between 1992 and 1996 and in 2006. We also compared characteristics of dying persons in 2006 by whether they first entered hospice in the community (i.e. 'community-NH', N=12,950) or the NH (i.e. 'NH-only', N=159,065).
In five US states, dying persons who received NH hospice in 2006, compared to 1992-1996, were older, had more short hospice stays (≤7 days), and were less frequently diagnosed with cancer. Also, in 2006, dying persons receiving 'NH-only' versus 'community-NH' hospice were older, had more short stays, and were less frequently diagnosed with cancer.
Persons in 2006 who received hospice in the community and in the NH (vs. 'NH-only') were strikingly similar to hospice participants in 1992-1996. 2006 'NH-only' vs. 'community-NH' dying persons, more closely resemble U.S. NH residents.
Advance Care Planning is an iterative process of discussion, decision-making and documentation about end-of-life care. Advance Care Planning is highly relevant in palliative care due to intersecting clinical needs. To enhance the implementation of Advance Care Planning, the contextual factors influencing its uptake need to be better understood.
To identify the contextual factors influencing the uptake of Advance Care Planning in palliative care as published between January 2008 and December 2012.
Databases were systematically searched for studies about Advance Care Planning in palliative care published between January 2008 and December 2012. This yielded 27 eligible studies, which were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results.
Factors associated with greater uptake included older age, a college degree, a diagnosis of cancer, greater functional impairment, being white, greater understanding of poor prognosis and receiving or working in specialist palliative care. Barriers included having non-malignant diagnoses, having dependent children, being African American, and uncertainty about Advance Care Planning and its legal status. Individuals' previous illness experiences, preferences and attitudes also influenced their participation.
Factors influencing the uptake of Advance Care Planning in palliative care are complex and multifaceted reflecting the diverse and often competing needs of patients, health professionals, legislature and health systems. Large population-based studies of palliative care patients are required to develop the sound theoretical and empirical foundation needed to improve uptake of Advance Care Planning in this setting.
Rigorous clinical research in palliative care is challenging but achievable. Trial participants are likely to have deteriorating performance status, co-morbidities and progressive disease. It is difficult to recruit patients, and attrition unrelated to the intervention being trialled is high. The aim of this paper is to highlight practical considerations from a forum held to discuss these issues by active palliative care clinical researchers.
To date, the Australian Palliative Care Clinical Studies Collaborative (PaCCSC) has randomized more than 500 participants across 12 sites in 8 Phase III studies. Insights from the 2010 clinical research forum of the PaCCSC are reported. All active Australian researchers in palliative care were invited to present their current research and address three specific questions: (1) What has worked well? (2) What didn’t work well? and (3) How should the research be done differently next time?
Fourteen studies were presented, including six double-blind, randomized, controlled, multi-site trials run by the PaCCSC. Key recommendations are reported, including guidance on design; methodologies; and strategies for maximizing recruitment and retention. These recommendations will help to inform future trial design and conduct in palliative care.
There is growing recognition that patients should have greater opportunity to plan their future care, a process known as advance care planning. The aims of this phase I qualitative focus group study were (1) to explore the acceptability of an interview schedule, designed to encourage conversations regarding future care; and (2) to explore the suitability of such discussions and inquire about their possible timing, nature and impact. Purposive sampling was used to achieve a balanced sample of 22 palliative care and oncology patients, relatives and user group members. The results showed that, although some patients welcome the opportunity to discuss end-of-life care, others may not feel ready or able to do so. The timing of a discussion is likely to influence its acceptability and effect. A discussion might best be initiated after recurrence of disease. The person initiating discussion should be skilled in responding to the cues of the patient, and should enable the patient to close the topic down at the end of the discussion, in order to avoid dwelling too much on the end of life. Advance care planning should take place over a number of meetings, and be conducted by an appropriately trained professional with sufficient time to talk through the issues raised, and with the knowledge and skills to answer questions, tailor the discussion to the individual, and avoid destroying hope. Advance decisions to refuse treatment should not be the focus of the discussion, but one component of a broader conversation about end-of-life issues. If patients make an advance decision to refuse certain treatments, they should be given the opportunity to change their minds in the future.
Patients with chronic obstructive pulmonary disease report a symptom burden similar in magnitude to terminal cancer patients yet service provision and access has been reported as poor. In the absence of a specific national chronic obstructive pulmonary disease service framework the gold standards framework might support service developments. We surveyed 239 UK acute hospital units admitting chronic obstructive pulmonary disease patients, comprising 98% of all acute trusts, about their current and planned provision for palliative care services. Only 49% of units had a formal referral pathway for palliative care and only 13% had a policy of initiating end-of-life discussions with appropriate patients. Whilst 66% of units had plans to develop palliative care services, when mapped against the gold standards framework few were directly relevant and only three of the seven key standards were covered to any significant degree. We conclude that service provision remains poor and access is hindered by a lack of proactive initiation of discussion. Planned developments in chronic obstructive pulmonary disease palliative care services also lack a strategic framework that risks holistic design.
The aim of this study was to provide a comparative assessment of the health care resources consumed during the final month of life of patients undergoing palliative treatment and who died from cancer in the town of Mataró, Spain, in 1998, with respect to whether they benefited from home care teams or not. Relevant differences in the use of health care resources were found between the groups. Patients in the standard care group presented more hospital care admissions and longer length of stay, higher use of emergency and outpatient visits, and greater use of palliative care units within nursing homes than patients in the home care group. The monetary quantification of the use of the above-mentioned resources showed a 71% increase in the cost per patient in the standard care when compared to home care. According to the results of this study, home care teams for terminal cancer patients allow for savings to the health care system. A series of policy making and health services research implications are discussed.