One hundred and six consecutive patients started on glucocorticosteroids (steroids) according to a defined prescription policy were surveyed each week to document the indications for use, any beneficial effect, any toxicity incurred and the reason for stopping. All patients had advanced malignant disease and survived for a median of 40.5 days (range 1-398+ days) from the start of steroid treatment. Fifty-seven per cent of patients completed three or more assessments. The most common specific indications for starting steroids were spinal cord compression, cerebral metastases, lymphangitis carcinomatosa and intestinal obstruction. The most common non-specific indications were anorexia, nausea, low mood, pain and vomiting. The median duration of steroid use was 21.5 days (range 1-89 days). The most common reason for the discontinuation of steroids was death or deteriorating condition. Symptom scores improved at some stage for the majority of patients started on steroids for anorexia, nausea, pain, low mood, vomiting and weakness but not in patients complaining of dyspnoea or poor mobility. The most common side-effects that were most probably attributable to steroid therapy were oral candidosis and proximal myopathy. The benefits of steroids when used according to defined guidelines were thought to outweigh toxicity.
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.
Context. Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development. Objectives. To conduct the first regional assessment of pediatric palliative care (PPC) development and provision using data from the European Association for Palliative Care atlas of palliative care 2019. Methods. Two surveys were conducted. The first one included a single question regarding PPC service provision and was addressed by European Association for Palliative Care atlas informants. The second one included 10 specific indicators derived from an open-ended interview and rating process; a specific network of informants was enabled and used as respondents. Data were analyzed and presented in the map of the figure. Results. Data on PPC service provision were gathered from 51 of 54 (94%) European countries. Additional data were collected in 34 of 54 (62%) countries. A total of 680 PPC services were identified including 133 hospices, 385 home care services, and 162 hospital services. Nineteen countries had specific standards and norms for the provision of PPC. Twenty-two countries had a national association, and 14 countries offered education for either pediatric doctors or nurses. In seven countries, specific neonatal palliative care referral services were identified. Conclusion. PPC provision is flourishing across the region; however, development is less accentuated in low-to-middleincome countries. Efforts need to be devoted to the conceptualization and definition of the models of care used to respond to the unmet need of PPC in Europe. The question whether specialized services are required or not should be further explored. Strategies to regulate and cover patients in need should be adapted to each national health system. J Pain Symptom Manage 2020;60:746e753.
Background: In 2009, the EAPC published recommendations on standards and norms for palliative care in Europe, and a decade later, wished to update them to reflect contemporary practice. Aim: To elicit consensus on standards and norms for palliative care in Europe, taking account of developments since 2009. Design: A Delphi technique used three sequential online survey rounds, and a final expert consultation (EAPC Board). The original 2009 questionnaire with 134 statements was updated with 13 new concepts and practices following a scoping of the literature between 2009 and 2020 (total: 147 statements). Setting/participants: One contact of Boards of 52 national European organisations affiliated to the EAPC were invited to participate, with subsequent rounds sent to respondees. The EAPC Board ( n = 13) approved final recommendations. Results: In Round 1: 30 organisations (14 organisations × two people, 16 organisations × one person, total n = 44) in 27 countries responded (response rate 58% organisations, 82% countries), Round 2 ( n = 40), Round 3 ( n = 38). 119 statements reached consensus in Round 1, 9 in Round 2, 7 in Round 3. In total 135/145 statements in five domains (terminology, philosophy, levels, delivery, services) reached consensus (defined as >75% agreement), (122) were original EAPC recommendations with 13 new recommendations included emerging specialisms: neonatal, geriatric and dementia care, and better care practices. Seven statements failed to reach consensus and four were removed as irrelevant or repetition. Conclusions: Most recommendations on standards and norms for palliative care in Europe remain unchanged since 2009. Evolving concepts in palliative care can be used to support advocacy.
Most children with a life-limiting condition are cared for in the family home by their parents, who require professional support to provide this care. Owing to advances in medicine and medical technology these children are living longer and, given the often relentless and all-encompassing nature of caring for children with life-limiting conditions, respite (facilitation of short breaks) is considered central to quality palliative care provision for children and their families. However, there is still ambiguity in exactly what is meant by the term 'respite', what constitutes respite care, whether the services currently provided meet the needs of the child and family, and how respite is best provided. This paper reviews the literature relating to respite as a component of children's palliative care. Themes from the literature are identified and discussed. Challenges for the providers of respite care are identified and suggestions made regarding the future development of responsive and family-focused respite care.
Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.
The efficacy and toxicity of sodium valproate for cancer-related neuropathic pain was evaluated in a phase II study at this cancer center. Twenty-five patients entered the study over a 13 month period. Pain was assessed using a pain scale based on the Brief Pain Inventory at days 0, 8 and 15. Nineteen patients completed the two week study period, one patient discontinued treatment because of toxicity, and five discontinued because of progressive disease. The most frequently observed side effects were drowsiness, unsteadiness, nausea, and decreased appetite. Response was defined as a decrease in pain score in the absence of increased need for analgesic medication. The response rate for average pain at day 15 in assessable patients was 55.6% (30.8-78.5%, 95% CI), but response rates varied considerably depending on the mode of analysis. Baseline efficacy data have been gained on which to base future comparative studies against antidepressants.
Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation. Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change). Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities.
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