Search

Abstract Background In March 2020, the outbreak caused by the SARS-CoV-2 virus was declared a pandemic, resulting in numerous fatalities worldwide. To effectively combat the virus, it would be beneficial to involve professionals who specialize in symptom control for advanced illnesses, working closely with other specialties throughout the illness process. This approach can help manage a range of symptoms, from mild to severe and potentially life-threatening. No studies have been conducted in Portugal to analyse the intervention of Palliative Medicine at the end of life of Covid-19 patients and how it differs from other specialties. This knowledge could help determine the importance of including it in the care of people with advanced Covid-19. Objectives The objective of this study is to examine potential differences in the care provided to patients with Covid-19 during their Last Hours and Days of Life (LHDOL) between those who received care from Palliative Medicine doctors and those who did not. Methods This is a retrospective cohort study spanning three months (Dec 2020 to Feb 2021), the duration of the Support Unit especially created to deal with Covid-19 patients. The database included clinical files from 181 patients admitted to the Support Unit, 27 of which died from Covid-19. Results Statistically significant differences were identified in the care provided. Specifically, fewer drugs were administered at the time of death, including drugs for dyspnoea, pain and agitation, suspension of futile devices and use of palliative sedation to control refractory symptoms. Conclusions End-of-life care and symptomatic control differ when there’s regular follow-up by Palliative Medicine, which may translate less symptomatic suffering and promote a dignified and humane end of life.

Background: In March 2020, the outbreak caused by the SARS-CoV-2 virus was declared a pandemic, resulting in numerous fatalities worldwide. To effectively combat the virus, it would be beneficial to involve professionals who specialize in symptom control for advanced illnesses, working closely with other specialties throughout the illness process. This approach can help manage a range of symptoms, from mild to severe and potentially life-threatening. No studies have been conducted in Portugal to analyse the intervention of Palliative Medicine at the end of life of Covid-19 patients and how it differs from other specialties. This knowledge could help determine the importance of including it in the care of people with advanced Covid-19. Objectives: The objective of this study is to examine potential differences in the care provided to patients with Covid-19 during their Last Hours and Days of Life (LHDOL) between those who received care from Palliative Medicine doctors and those who did not. Methods: This is a retrospective cohort study spanning three months (Dec 2020 to Feb 2021), the duration of the Support Unit especially created to deal with Covid-19 patients. The database included clinical files from 181 patients admitted to the Support Unit, 27 of which died from Covid-19. Results: Statistically significant differences were identified in the care provided. Specifically, fewer drugs were administered at the time of death, including drugs for dyspnoea, pain and agitation, suspension of futile devices and use of palliative sedation to control refractory symptoms. Conclusions: End-of-life care and symptomatic control differ when there's regular follow-up by Palliative Medicine, which may translate less symptomatic suffering and promote a dignified and humane end of life. [ABSTRACT FROM AUTHOR]

Abstract Background Within Germany, there is a heterogeneous range of training and continuing education in palliative care for different professional groups. The German Society for Palliative Medicine (DGP), together with the German Hospice and Palliative Care Association (DHPV), have defined quality requirements for postgraduate training in palliative care. These requirements include the evaluation of course structures and the assessment of outcomes. Aim To assess the ‘learning gains’ in palliative care nurses and physicians undertaking continuing education programmes, and evaluate the structures and processes. To identify if/how the continuing education programmes could be improved. Material and methods The development of Nurses’ and Physicians’ learning was determined using a retrospective self-assessment procedure. The evaluation was based on learning objectives developed in the DGP Education Working Group, using a six-point Likert scale for each item, and space for ‘free-text’ comments. Assessments were conducted after training. Results Five hundred twenty nine self-assessments were recorded (456 nurses / 73 physicians). An increase in learning is demonstrated in all areas (knowledge, skills, social and self-competence) for each profession. The greatest gain was in symptom control. However, there were significant differences in the extent of learning gains between nurses and physicians. Conclusion Analysis suggests current training results in improvements, but personal competences progress less than knowledge and skills. One way to improve this would be to introduce more interprofessional continuing education elements. Evaluation, as a basis for improving training concepts, is essential for continual development.

Abstract Background Palliative sedation is consciously reducing the patient’s consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. Method This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. Results From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). Conclusion Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children.

Abstract Background In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. Objectives To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. Methods Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients’ characteristics, quality of dying and nurses’ expectation about death was summarized by means of multiple correspondence analysis (MCA). Results Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P

Background: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. Method: This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. Results: From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). Conclusion: Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children. [ABSTRACT FROM AUTHOR]

Abstract Background Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids, but there is little high quality evidence to guide clinicians. This study aims to define the role of cannabidiol (CBD) in the management of symptom burden in patients with advanced cancer undergoing standard palliative care. Methods and design This study is a multicentre, randomised, placebo controlled, two arm, parallel trial of escalating doses of oral CBD. It will compare efficacy and safety outcomes of a titrated dose of CBD (100 mg/mL formulation, dose range 50 mg to 600 mg per day) against placebo. There is a 2-week patient determined titration phase, using escalating doses of CBD or placebo to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians. Discussion A major strength of this study is that it will target symptom burden as a whole, rather than just individual symptoms, in an attempt to describe the general improvement in wellbeing previously reported by some patients in open label, non controlled trials of medicinal cannabis. Randomisation with placebo is essential because of the well-documented over reporting of benefit in uncontrolled trials and high placebo response rates in cancer pain trials. This will be the first placebo controlled clinical trial to evaluate rigorously the efficacy, safety and acceptability of CBD for symptom relief in advanced cancer patients. This study will provide the medical community with evidence to present to patients wishing to access medicinal cannabis for their cancer related symptoms. Trial registration number ALCTRN12618001220257 Registered 20/07/2018.

Background: In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. Objectives: To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. Methods: Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients' characteristics, quality of dying and nurses' expectation about death was summarized by means of multiple correspondence analysis (MCA). Results: Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P < 0.001). The palliative care consultant was requested for only two patients. Conclusion: Staff in medical and surgical wards still deal inadequately with the needs of dying people. Presence of hospital-based specialist palliative care could lead to improvements in the patients' quality of life. [ABSTRACT FROM AUTHOR]

Abstract Background Individuals with HIV have a high prevalence of physical and psychological symptoms throughout their disease course. Despite the clinical and public health implications of unresolved pain and symptoms, little is known about the effect of anti-retroviral therapy (ART) on these outcomes. This study aimed to assess the impact on symptom burden for the year after ART initiation in individuals with a CD4 count

Background: Individuals with HIV have a high prevalence of physical and psychological symptoms throughout their disease course. Despite the clinical and public health implications of unresolved pain and symptoms, little is known about the effect of anti-retroviral therapy (ART) on these outcomes. This study aimed to assess the impact on symptom burden for the year after ART initiation in individuals with a CD4 count <200 cells/uL in Uganda. Methods: HIV-infected, ART-naıve adults referred from voluntary testing and counseling services in rural Uganda for enrollment into a randomized controlled trial to test fluconazole as primary prophylaxis against cryptococcal disease were invited to complete the Memorial Symptom Assessment Scale-Short Form (MSAS-SF) prior to commencing ART and at two subsequent follow up visits. This tool measures self-reported 7-day period prevalence and associated burden of physical and psychological symptoms. Changes in the total number of symptoms and distress indices with time on ART and trial arm were investigated through fitting Linear Mixed Models for repeated measures. Results: During the first year of ART initiation the prevalence of most individual symptoms remained constant. The notable exceptions which improved after commencing ART are as follow; prevalence of pain (prevalence changed from 79% to 60%), weight loss (67% to 31%), lack of appetite (46% to 28%), feeling sad (52% to 25%) and difficulty sleeping (35% to 23%). The total number of symptoms and distress indices reduced after treatment commenced. Of concern was that half or more study participants remained with symptoms of pain (60%), itching (57%), skin changes (53%) and numbness in hands and feet (52%) after starting ART. Sixteen symptoms remained with a burden of 25% or more. Conclusion: Despite the beneficial effect of ART on reducing symptoms, some patients continue to experience a high symptom burden. It is essential that HIV services in sub-Saharan Africa integrate management of symptoms into their programmes. Trial registration: CRYPTOPRO [ISRCTN 76481529], November 2004. [ABSTRACT FROM AUTHOR]

Background: Children's palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. Methods: The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007. Results: 1590 diagnoses from children's hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions. Conclusion: The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care. [ABSTRACT FROM AUTHOR]

Background: Levomepromazine is an antipsychotic drug that is used clinically for a variety of distressing symptoms in palliative and end-of-life care. We undertook a systematic review based on the question "What is the published evidence for the use of levomepromazine in palliative symptom control?". Methods: To determine the level of evidence for the use of levomepromazine in palliative symptom control, and to discover gaps in evidence, relevant studies were identified using a detailed, multi-step search strategy. Emerging data was then scrutinized using appropriate assessment tools, and the strength of evidence systematically graded in accordance with the Oxford Centre for Evidence-Based Medicine's 'levels of evidence' tool. The electronic databases Medline, Embase, Cochrane, PsychInfo and Ovid Nursing, together with hand-searching and cross-referencing provided the full research platform on which the review is based. Results: 33 articles including 9 systematic reviews met the inclusion criteria: 15 on palliative sedation, 8 regarding nausea and three on delirium and restlessness, one on pain and six with other foci. The studies varied greatly in both design and sample size. Levels of evidence ranged from level 2b to level 5, with the majority being level 3 (non-randomized, non-consecutive or cohort studies n = 22), with the quality of reporting for the included studies being only low to medium. Conclusion: Levomepromazine is widely used in palliative care as antipsychotic, anxiolytic, antiemetic and sedative drug. However, the supporting evidence is limited to open series and case reports. Thus prospective randomized trials are needed to support evidence-based guidelines. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to determine factors associated with the severity of cancer related fatigue (CRF) and predictors of improvement of CRF at the first follow-up visit in patients with advanced cancer referred to outpatient palliative care clinic (OPC). Methods: We reviewed the records of consecutive patients with advanced cancer presenting to OPC. Edmonton Symptom Assessment System (ESAS) scores were obtained at the initial and subsequent visits between January 2003 and December 2008. All patients received interdisciplinary care led by palliative medicine specialists following an institutional protocol. Fatigue improvement was defined as a reduction of ≥2 points in ESAS score relative to the baseline. Descriptive statistics were used to summarize patient characterstics. Univariate analyses were performed and only significant variables were included in multivariate regression analysis to determine factors associated with severity and improvement in CRF. Results: A total of 1778 evaluable patients were analyzed (median age, 59 years; 52% male). The median time between visits was 15 days. Median fatigue scores on the ESAS were 6 at baseline and 5 at follow-up. Severity of all ESAS items and low serum albumin were associated with fatigue at baseline (p < 0.0001). The improvement of fatigue was observed in 586 patients (33%). The hierarchical model showed that fatigue improved over time (b = −0.009; p = 0.0009). low appetite (odds ratio [OR] = 1.09 per point; p = 0.0113) and genitourinary cancer (OR = 1.74 per point; p = 0.0458) were significantly associated with improvement of fatigue. Conclusions: CRF is strongly associated with physical and emotional symptoms. Genitourinary cancer and low appetite at baseline were associated with successful improvement of fatigue. [ABSTRACT FROM AUTHOR]

Abstract Background The administration of sedatives in terminally ill patients becomes an increasingly feasible medical option in end-of-life care. However, sedation for intractable distress has raised considerable medical and ethical concerns. In our study we provide a critical analysis of seven years experience with the application of sedation in the final phase of life in our palliative care unit. Methods Medical records of 548 patients, who died in the Palliative Care Unit of GK Havelhoehe between 1995–2002, were retrospectively analysed with regard to sedation in the last 48 hrs of life. The parameters of investigation included indication, choice and kind of sedation, prevalence of intolerable symptoms, patients' requests for sedation, state of consciousness and communication abilities during sedation. Critical evaluation included a comparison of the period between 1995–1999 and 2000–2002. Results 14.6% (n = 80) of the patients in palliative care had sedation given by the intravenous route in the last 48 hrs of their life according to internal guidelines. The annual frequency to apply sedation increased continuously from 7% in 1995 to 19% in 2002. Main indications shifted from refractory control of physical symptoms (dyspnoea, gastrointestinal, pain, bleeding and agitated delirium) to more psychological distress (panic-stricken fear, severe depression, refractory insomnia and other forms of affective decompensation). Patients' and relatives' requests for sedation in the final phase were significantly more frequent during the period 2000–2002. Conclusion Sedation in the terminal or final phase of life plays an increasing role in the management of intractable physical and psychological distress. Ethical concerns are raised by patients' requests and needs on the one hand, and the physicians' self-understanding on the other hand. Hence, ethically acceptable criteria and guidelines for the decision making are needed with special regard to the nature of refractory and intolerable symptoms, patients' informed consent and personal needs, the goals and aims of medical sedation in end-of-life care.

Background: Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids, but there is little high quality evidence to guide clinicians. This study aims to define the role of cannabidiol (CBD) in the management of symptom burden in patients with advanced cancer undergoing standard palliative care. Methods and design: This study is a multicentre, randomised, placebo controlled, two arm, parallel trial of escalating doses of oral CBD. It will compare efficacy and safety outcomes of a titrated dose of CBD (100 mg/mL formulation, dose range 50 mg to 600 mg per day) against placebo. There is a 2-week patient determined titration phase, using escalating doses of CBD or placebo to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians. Discussion: A major strength of this study is that it will target symptom burden as a whole, rather than just individual symptoms, in an attempt to describe the general improvement in wellbeing previously reported by some patients in open label, non controlled trials of medicinal cannabis. Randomisation with placebo is essential because of the well-documented over reporting of benefit in uncontrolled trials and high placebo response rates in cancer pain trials. This will be the first placebo controlled clinical trial to evaluate rigorously the efficacy, safety and acceptability of CBD for symptom relief in advanced cancer patients. This study will provide the medical community with evidence to present to patients wishing to access medicinal cannabis for their cancer related symptoms. Trial registration number: ALCTRN12618001220257 Registered 20/07/2018. [ABSTRACT FROM AUTHOR]