Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study.

BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

Humour interventions for patients in palliative care-a randomized controlled trial.

PURPOSE: The effect of humour on end-of-life patients could be beneficial and is worth investigating. However, data on humour interventions for patients in palliative care are scarce. This study evaluated the effects of a humour intervention in a palliative care setting. METHODS: A two-step intervention was developed based on the humour habits programme by McGhee. Patients were assisted to remember funny episodes from their past and recognize humorous aspects of the present and encouraged to produce humour. The intervention and control group completed questionnaires on life satisfaction, cheerfulness, symptom burden, and perceived stress and if possible gave saliva samples to investigate oxytocin levels. The study was a randomized controlled monocentre study on patients treated in a palliative care ward. Participants had to be conscious and alert enough to complete data collection. Overall, 55 patients were included and randomized to the intervention or control group. RESULTS: Parameters in the control group did not change significantly. In the intervention group, seriousness, bad mood, and stress were reduced. Cheerfulness increased significantly after the intervention. However, the methodologically complex intervention setting was too exhausting for the majority of patients. CONCLUSION: Patients who were able to participate benefited from the effects of the intervention on multiple levels. For future research simple interventions, biomarkers for well-being and assessments by staff or proxies are needed to include patients with reduced cognitive and physical performance status at the end of their lives. TRIAL REGISTRATION: DRKS00028978 German Registry of Clinical Studies.

Cannabis-based medicines and medical cannabis for adults with cancer pain.

BACKGROUND: Pain is a common symptom in people with cancer; 30% to 50% of people with cancer will experience moderate-to-severe pain. This can have a major negative impact on their quality of life. Opioid (morphine-like) medications are commonly used to treat moderate or severe cancer pain, and are recommended for this purpose in the World Health Organization (WHO) pain treatment ladder. Pain is not sufficiently relieved by opioid medications in 10% to 15% of people with cancer. In people with insufficient relief of cancer pain, new analgesics are needed to effectively and safely supplement or replace opioids. OBJECTIVES: To evaluate the benefits and harms of cannabis-based medicines, including medical cannabis, for treating pain and other symptoms in adults with cancer compared to placebo or any other established analgesic for cancer pain. SEARCH METHODS: We used standard, extensive Cochrane search methods. The latest search date was 26 January 2023. SELECTION CRITERIA: We selected double-blind randomised, controlled trials (RCT) of medical cannabis, plant-derived and synthetic cannabis-based medicines against placebo or any other active treatment for cancer pain in adults, with any treatment duration and at least 10 participants per treatment arm. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methods. The primary outcomes were 1. proportions of participants reporting no worse than mild pain; 2. Patient Global Impression of Change (PGIC) of much improved or very much improved and 3. withdrawals due to adverse events. Secondary outcomes were 4. number of participants who reported pain relief of 30% or greater and overall opioid use reduced or stable; 5. number of participants who reported pain relief of 30% or greater, or 50% or greater; 6. pain intensity; 7. sleep problems; 8. depression and anxiety; 9. daily maintenance and breakthrough opioid dosage; 10. dropouts due to lack of efficacy; 11. all central nervous system adverse events. We used GRADE to assess certainty of evidence for each outcome. MAIN RESULTS: We identified 14 studies involving 1823 participants. No study assessed the proportions of participants reporting no worse than mild pain on treatment by 14 days after start of treatment. We found five RCTs assessing oromucosal nabiximols (tetrahydrocannabinol (THC) and cannabidiol (CBD)) or THC alone involving 1539 participants with moderate or severe pain despite opioid therapy. The double-blind periods of the RCTs ranged between two and five weeks. Four studies with a parallel design and 1333 participants were available for meta-analysis. There was moderate-certainty evidence that there was no clinically relevant benefit for proportions of PGIC much or very much improved (risk difference (RD) 0.06, 95% confidence interval (CI) 0.01 to 0.12; number needed to treat for an additional beneficial outcome (NNTB) 16, 95% CI 8 to 100). There was moderate-certainty evidence for no clinically relevant difference in the proportion of withdrawals due to adverse events (RD 0.04, 95% CI 0 to 0.08; number needed to treat for an additional harmful outcome (NNTH) 25, 95% CI 16 to endless). There was moderate-certainty evidence for no difference between nabiximols or THC and placebo in the frequency of serious adverse events (RD 0.02, 95% CI -0.03 to 0.07). There was moderate-certainty evidence that nabiximols and THC used as add-on treatment for opioid-refractory cancer pain did not differ from placebo in reducing mean pain intensity (standardised mean difference (SMD) -0.19, 95% CI -0.40 to 0.02). There was low-certainty evidence that a synthetic THC analogue (nabilone) delivered over eight weeks was not superior to placebo in reducing pain associated with chemotherapy or radiochemotherapy in people with head and neck cancer and non-small cell lung cancer (2 studies, 89 participants, qualitative analysis). Analyses of tolerability and safety were not possible for these studies. There was low-certainty evidence that synthetic THC analogues were superior to placebo (SMD -0.98, 95% CI -1.36 to -0.60), but not superior to low-dose codeine (SMD 0.03, 95% CI -0.25 to 0.32; 5 single-dose trials; 126 participants) in reducing moderate-to-severe cancer pain after cessation of previous analgesic treatment for three to four and a half hours (2 single-dose trials; 66 participants). Analyses of tolerability and safety were not possible for these studies. There was low-certainty evidence that CBD oil did not add value to specialist palliative care alone in the reduction of pain intensity in people with advanced cancer. There was no difference in the number of dropouts due to adverse events and serious adverse events (1 study, 144 participants, qualitative analysis). We found no studies using herbal cannabis. AUTHORS' CONCLUSIONS: There is moderate-certainty evidence that oromucosal nabiximols and THC are ineffective in relieving moderate-to-severe opioid-refractory cancer pain. There is low-certainty evidence that nabilone is ineffective in reducing pain associated with (radio-) chemotherapy in people with head and neck cancer and non-small cell lung cancer. There is low-certainty evidence that a single dose of synthetic THC analogues is not superior to a single low-dose morphine equivalent in reducing moderate-to-severe cancer pain. There is low-certainty evidence that CBD does not add value to specialist palliative care alone in the reduction of pain in people with advanced cancer.

ANTECEDENTES: El dolor es un síntoma común en las personas con cáncer; entre el 30% y el 50% de las personas con cáncer experimentarán dolor de moderado a intenso. Esto puede tener un gran impacto negativo en su calidad de vida. Los fármacos opiáceos (similares a la morfina) se utilizan habitualmente para tratar el dolor por cáncer moderado o intenso, y se recomiendan para este propósito en la escala de tratamiento del dolor de la Organización Mundial de la Salud (OMS). El dolor no se alivia lo suficiente con los medicamentos opiáceos en el 10% al 15% de las personas con cáncer. En las personas con un alivio insuficiente del dolor por cáncer, se necesitan nuevos analgésicos que complementen o sustituyan de forma eficaz y segura a los opiáceos. OBJETIVOS: Evaluar los efectos beneficiosos y perjudiciales de los medicamentos con cannabis, incluido el cannabis medicinal, para tratar el dolor y otros síntomas en adultos con cáncer en comparación con placebo o cualquier otro analgésico establecido para el dolor por cáncer. MÉTODOS DE BÚSQUEDA: Se utilizaron los métodos exhaustivos estándar de búsqueda de Cochrane. La última fecha de búsqueda fue el 26 de enero de 2023. CRITERIOS DE SELECCIÓN: Se seleccionaron los ensayos controlados aleatorizados (ECA) doble ciego de cannabis medicinal, medicamentos derivados de plantas y sintéticos con cannabis versus placebo o cualquier otro tratamiento activo para el dolor por cáncer en adultos, con cualquier duración del tratamiento y al menos 10 participantes por grupo de tratamiento. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Se utilizaron los métodos estándar de Cochrane. Los desenlaces principales fueron los siguientes: 1. proporción de participantes que declararon dolor leve; 2. Patient Global Impression of Change (PGIC) de mucha o muchísima mejoría y 3. retiros debido a eventos adversos. Los desenlaces secundarios fueron 4. número de participantes que declararon un alivio del dolor del 30% o superior y un consumo general de opiáceos reducido o estable; 5. número de participantes que declararon un alivio del dolor del 30% o superior, o del 50% o superior; 6. intensidad del dolor; 7. problemas de sueño; 8. depresión y ansiedad; 9. dosis diaria de opiáceos de mantenimiento y de inicio; 10. abandonos por falta de eficacia; 11. todos los eventos adversos del sistema nervioso central. Se utilizó el método GRADE para evaluar la calidad de la evidencia de cada desenlace. RESULTADOS PRINCIPALES: Se identificaron 14 estudios con 1823 participantes. Ningún estudio evaluó las proporciones de participantes que declararon un dolor no peor que leve a los 14 días de inicio del tratamiento. Se encontraron cinco ECA que evaluaron nabiximoles oromucosos (tetrahidrocannabinol [THC] y cannabidiol [CBD]) o THC solo, con 1539 participantes con dolor moderado o intenso a pesar del tratamiento con opiáceos. Los periodos doble ciego de los ECA variaron entre dos y cinco semanas. Para el metanálisis se dispuso de cuatro estudios con un diseño paralelo y 1333 participantes. Hubo evidencia de certeza moderada de que no hubo efectos beneficiosos clínicamente relevantes en las proporciones de PGIC de mucha o muchísima mejoría (diferencia de riesgos [DR] 0,06; intervalo de confianza [IC] del 95%: 0,01 a 0,12; número necesario a tratar para lograr un resultado beneficioso adicional [NNTB] 16; IC del 95%: 8 a 100). Hubo evidencia de certeza moderada de que no hubo diferencias clínicamente relevantes en la proporción de retiros debido a eventos adversos (DR 0,04; IC del 95%: 0 a 0,08; número necesario a tratar para lograr un desenlace perjudicial adicional [NNTD] 25; IC del 95%: 16 a infinito). Hubo evidencia de certeza moderada de que no hubo diferencias entre nabiximols o THC y placebo en la frecuencia de eventos adversos graves (DR 0,02; IC del 95%: ­0,03 a 0,07). Hubo evidencia de certeza moderada de que los nabiximoles y el THC utilizados como tratamiento complementario para el dolor por cáncer refractario a los opiáceos no difirieron del placebo en cuanto a la reducción de la intensidad media del dolor (diferencia de medias estandarizada [DME] ­0,19; IC del 95%: ­0,40 a 0,02). Hubo evidencia de certeza baja de que un análogo sintético del THC (nabilona) administrado durante ocho semanas no fue superior a placebo para reducir el dolor asociado con la quimioterapia o la radioquimioterapia en personas con cáncer de cabeza y cuello y cáncer de pulmón de células no pequeñas (dos estudios, 89 participantes, análisis cualitativo). En estos estudios no fue posible realizar análisis de tolerabilidad y seguridad. Hubo evidencia de certeza baja de que los análogos sintéticos del THC fueron superiores a placebo (DME ­0,98; IC del 95%: ­1,36 a ­0,60), pero no superiores a la codeína en dosis bajas (DME 0,03; IC del 95%: ­0,25 a 0,32; cinco ensayos de dosis única; 126 participantes) en cuanto a la reducción del dolor moderado a intenso por cáncer después de la interrupción del tratamiento analgésico previo durante tres a cuatro horas y media (dos ensayos de dosis única; 66 participantes). En estos estudios no fue posible realizar análisis de tolerabilidad y seguridad. Hubo evidencia de certeza baja de que el aceite de CBD no agregó valor a los cuidados paliativos especializados solos en la reducción de la intensidad del dolor en personas con cáncer avanzado. No hubo diferencias en el número de abandonos debido a eventos adversos ni eventos adversos graves (un estudio, 144 participantes, análisis cualitativo). No se encontraron estudios que utilizaran la planta de cannabis. CONCLUSIONES DE LOS AUTORES: Existe evidencia de certeza moderada de que los nabiximoles y el THC por vía oromucosa no son efectivos para aliviar el dolor de moderado a intenso por cáncer refractario a los opiáceos. Hay evidencia de certeza baja de que la nabilona no es efectiva para reducir el dolor asociado con la radio­quimioterapia en personas con cáncer de cabeza y cuello y cáncer de pulmón de células no pequeñas. Hay evidencia de certeza baja de que una dosis única de análogos sintéticos del THC no es superior a una dosis única baja equivalente de morfina para reducir el dolor moderado a intenso por cáncer. Hay evidencia de certeza baja de que el CBD no aporta valor a los cuidados paliativos especializados solos en la reducción del dolor en personas con cáncer avanzado.

Regulations on palliative sedation: an international survey across eight European countries.

BACKGROUND: Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. METHODS: An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. RESULTS: One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. CONCLUSIONS: Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.

Monitoring the clinical practice of palliative sedation (PALSED) in patients with advanced cancer: an international, multicentre, non-experimental prospective observational study protocol.

BACKGROUND: Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient's burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded. METHODS: The study is an international prospective non-experimental observational multicentre study. Patients are recruited from in-patient palliative care settings in Belgium, Germany, Italy, Spain and the Netherlands. Adult patients with advanced cancer are monitored by using proxy observations of discomfort (DS-DAT) and depth of sedation/agitation levels (RASS-PAL) during palliative sedation. After the palliative sedation period, the care for the specific participant case is evaluated by one of the attending health care professionals and one relative via a questionnaire. DISCUSSION: This study will be the first international prospective multicenter study evaluating the clinical practice of palliative sedation including observations of discomfort levels and levels of sedation. It will provide valuable information about the practice of palliative sedation in European countries in terminally ill cancer patients. Results from this study will facilitate the formulation of recommendations for clinical practice on how to improve monitoring and comfort in patients receiving palliative sedation. TRIAL REGISTRATION: This study is registered at Clinicaltrials.gov since January 22, 2021, registration number: NCT04719702.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

[Postoperative pain experience after proximal femur fracture in dementia]. / Postoperatives Schmerzerleben nach proximaler Femurfraktur bei Demenz.

BACKGROUND: The present study aimed to assess the postoperative pain experience in cognitive deficit patients with special reference to sensory or affective pain quality. METHODS: Nineteen patients with normal cognition up to cognitive impairments according to the DemTect screening-tool were studied regarding their postoperative pain experience after proximal femur fracture. The numerical rating scale (NRS), the cognitive DemTect questionnaire, the pain sensation questionnaire (SES), and a quantitative sensory test (QST) were used as examination instruments. RESULTS: The mean ± SD age of the patients was 83.8 ± 10.0 years. Of the 19 patients, 6 (31.6%) had normal cognitive abilities. In 4 patients (21.1%) there were indications of mild cognitive impairments, and in 9 patients (47.4%) the suspicions of the presence of dementia arose. The mean postoperative pain intensity (NRS) was 4.0 (1.6). With comparable analgesic therapy, the reported pain intensities did not differ between the three patient groups with different cognitive impairments and the first three postoperative treatment days. There were no statistically significant differences between the groups for the sensory or affective total scores of the pain sensation scale. The QST parameters deep pain (PPT), superficial mechanical pain after needle stimulation (MPT), and the superficial sensitivity to light touch stimuli (MDT) showed a significantly increased sensitivity of the operated side. For the sensation of vibration (VDT) no differences between operated and healthy extremities could be proven. DISCUSSION: The postoperative pain experience does not differ between patients with normal and limited cognition. The quantitative sensory testing showed mechanical hyperalgesia in the operated area. The study points to the importance of adequate postoperative pain management even in those with dementia.

[Who is afraid of Ockham's razor? : A discourse analysis on resilience in palliative care (2000-2021)]. / Wer hat Angst vor "Ockham's Razor"? : Eine Diskursanalyse zur Resilienz in der Palliativversorgung (2000­2021).

BACKGROUND: The concept of resilience is becoming increasingly disseminated from material science into various fields of science. It is infiltrating medical fields predominantly via psychology and is also recommended for coping with the special burdens in pain management and palliative care. A precise definition of the term and its operationalization pose problems. AIM: A critical stocktaking of the use of this term in the discourse of palliative care research. METHOD: Analytical discourse analysis of a text corpus from palliative medical care publications in the time period from 2000 to 2021, obtained by means of a systematic literature search. RESULTS: In the research discourse of palliative care, resilience is a topic primarily as a strategy for self-optimization of employees (e.g., burnout prophylaxis with the aim of preserving the workforce). Only rarely does the question of whether it offers potential for patients and their families take center stage, and then more as a catchword than as a concrete concept. The reason is that there is so far no adequate operationalization of the concept of resilience. Furthermore, there is a lack of sufficient justification for the relevance of the concept in patient care of palliative medicine. CONCLUSION: There is a lack of qualified contributions of palliative research to the metadiscourse about resilience, especially in the context of affected patients. A successful operationalization of the term requires a highly complex multidimensionality of the palliative path of an interdisciplinary approach. There is a lack of ethical standards that prevent an affirmative instrumentalizing application of the term.

[Concept-dependent and -independent care effects of site-specific care concepts using "pain" as an example]. / Konzeptabhängige und -unabhängige Versorgungseffekte standortspezifischer palliativer Versorgungskonzepte am Beispiel "Schmerz".

BACKGROUND: Structures of palliative care, cross-sectoral transitions and care pathways of patients with palliative care needs were investigated at two sites. The systematic comparison of similarities and differences using the topic of 'pain' as an example is intended to provide information on the extent to which these are related to site-specific palliative care concepts (integrated and cooperative). METHODS: The study follows a mixed-methods design. In addition to a document analysis of anonymised patient records (n = 774), expert interviews (n = 20), as well as interviews with patients, relatives (n = 60) and focus groups (n = 12), were conducted. RESULTS: The systematic comparative analysis provides evidence for concept-independent commonalities (e.g. sociodemographic distribution, aggravated pain treatment) as well as concept-dependent differences (e.g. care pathways, facilitated continuous symptom control through integrated care structures) in the context of integrated or cooperative palliative care. DISCUSSION: Commonalities and differences with regard to the topic of pain, as focused on here, and its organisational management become tangible as effects of the respective organisational structure (= concept-dependent) as well as concept-independent external influencing factors.

Development of Care Pathway for Assessment and Treatment of Fatigue in Palliative Care.

Objectives: Fatigue is a frequent and burdensome symptom in patients with advanced disease in palliative care. However, it is under-assessed and undertreated in clinical practice, even though many treatment options have been identified in systematic reviews. Care pathways with defined and standardised steps have been recommended for effective management in the clinical setting. This paper describes a care pathway for managing fatigue in palliative care patients. This study aims to develop a care pathway with detailed guidance for screening, assessment, diagnosis, and treatment of fatigue in palliative care patients. Material and methods: A collaborative effort of multidisciplinary clinicians participated in constructing the care pathway. The care pathway was developed using the following steps: (a) Developing an intervention; (b) piloting and feasibility; (c) evaluating the intervention; (d) reporting; and (e) implementation. This paper covers the first step, which includes the evidence base identification, theory identification/development, and process/outcomes modeling. A literature search was conducted to understand the extent of the fatigue problem in the palliative care setting and identify existing guidelines and strategies for managing fatigue. Consistent recommendations emanating from the included papers were then contributed to a care pathway. Patient representatives and palliative care professionals provided feedback on the draft. Results: The care pathway address the following care processes: (1) Screening for the presence of fatigue; (2) assessment to evaluate the severity of fatigue; (3) diagnostic procedure, including history, physical examination, and laboratory finding; (4) therapeutic management pathway for clinical decision-making; and (5) valuation of treatment effect, using questionnaires, diaries and physical activity monitoring with body-worn sensors. Conclusion: The development of a care pathway will help to implement regular and structured assessment, diagnosis, and treatment of fatigue for healthcare professionals treating palliative care patients. Reviewing the pathway with a multidisciplinary expert group and field testing the pathway will be the next steps toward implementation.

[Perceptions on the use of opioids in COVID-19 : A survey of members of the German Association for Palliative Medicine]. / Wahrnehmungen zum Umgang mit Opioiden bei COVID-19 : Eine Umfrage unter Mitgliedern der Deutschen Gesellschaft für Palliativmedizin.

BACKGROUND: Opioids efficiently alleviate pain and dyspnea. However, guidelines on symptom management with opioids differ, which may lead to an uncertainty concerning opioid indication and ethical implication among medical staff, especially when caring for COVID-19 patients. AIMS: We aimed to examine the perception of members of the German Association for Palliative Medicine (DGP) concerning the administration of morphine as the gold standard opioid (subsequently termed M/O) for symptom control within and outside of a palliative care (PC) setting, including care for COVID-19 patients. METHODS: DGP members received an anonymized online questionnaire (Survey Monkey®) containing questions regarding their perception of symptom management with M/O in general and in particular concerning COVID-19 patients. Participants were asked to rate their perception within and outside of a PC setting. RESULTS: Of the 6129 DGP members, N = 506 participated. DGP physicians and nurses perceived handling of M/O as "certain and confident" (98%) and "clearly regulated" within PC (95%) but rated it significantly lower for outside PC (48%/38%). When caring for COVID-19 patients, handling of M/O was even less often rated "certain and confident" (26%) or "clearly regulated" (23%) for outside PC. Dyspnea (99%/52%), relief from the dying process (62%/37%), restlessness (30%/15%) and fear or panic (27%/13%) were more frequently rated as general indications for morphine within versus outside PC. Most participants (89%) wished to involve palliative care consultation teams. CONCLUSIONS: DGP members perceived substantial uncertainty in the handling of M/O for medical fields outside PC. Uniform interdisciplinary guidelines for symptom control, more education, and involvement of a PC consultation team should be increasingly considered in the future.

[Transitions at the End of Life]. / Schnittstellen in der Versorgung am Lebensende.

Transitions at the End of Life Abstract. Transitions in places of care are often associated with a high symptom burden, a constantly growing care network and / or frequent changes between ambulatory and inpatient care. Interface problems occur at the organizational, communication, information, and knowledge levels, as well as in the networking of care facilities and services. Indications of care deficits at the end of life and the extent to which unsuccessful symptom relief or frequent changes between ambulatory and inpatient care can be cushioned are discussed on the basis of study results. At the end of life, open empathic conversations, symptom relief, psycho-social support, and, if necessary, the addressing of spiritual questions with needs-based availability of facilities and services are important cornerstones for the dying and the bereaved. An overview of the various kinds of hospice and palliative care services in the ambulatory and inpatient sector, including those for the bereaved, will also be presented.

No evidence to support the impact of migration background on treatment response rates and cancer survival: a retrospective matched-pair analysis in Germany.

BACKGROUND: Immigration has taken the central stage in world politics, especially in the developed countries like Germany, where the continuous flow of immigrants has been well documented since 1960s. Strikingly, emerging data suggest that migrant patients have a poorer response to the treatment and lower survival rates in their new host country, raising concerns about health disparities. Herein, we present our investigation on the treatment response rate and cancer survival in German patients with and without an immigrant background that were treated at our comprehensive cancer center in Germany. METHODS: Initially, we considered 8162 cancer patients treated at the Center for Integrated Oncology (CIO), University Hospital Bonn, Germany (April 2002-December 2015) for matched-pair analysis. Subsequently, the German patients with a migration background and those from the native German population were manually identified and catalogued using a highly specific name-based algorithm. The clinical parameters such as demographic characteristics, tumor characteristics, defined staging criteria, and primary therapy were further adjusted. Using these stringent criteria, a total of 422 patients (n = 211, Germans with migration background; n = 211, native German population) were screened to compare for the treatment response and survival rates (i.e., 5-year overall survival, progression-free survival, and time to progression). RESULTS: Compared to the cohort with migration background, the cohort without migration background was slightly older (54.9 vs. 57.9 years) while having the same sex distribution (54.5% vs. 55.0% female) and longer follow-up time (36.9 vs. 42.6 months). We did not find significant differences in cancer survival (5-year overall survival, P = 0.771) and the response rates (Overall Remission Rate; McNemar's test, P = 0.346) between both collectives. CONCLUSION: Contrary to prior reports, we found no significant differences in cancer survival between German patients with immigrant background and native German patients. Nevertheless, the advanced treatment protocols implemented at our comprehensive cancer center may possibly account for the low variance in outcome. To conduct similar studies with a broader perspective, we propose that certain risk factors (country-of-origin-specific infections, dietary habits, epigenetics for chronic diseases etc.) should be considered, specially in the future studies that will recruit new arrivals from the 2015 German refugee crisis.

Fatigue in advanced disease associated with palliative care: A systematic review of non-pharmacological treatments.

BACKGROUND: Fatigue is a common complaint reported by patients with advanced disease, impacting their daily activities and quality of life. The pathophysiology is incompletely understood, and evidence-based treatment approaches are needed. AIM: This systematic review aims to evaluate the efficacy of non-pharmacological interventions as treatment for fatigue in advanced disease. DESIGN: The review design follows the Cochrane guidelines for systematic reviews of interventions. DATA SOURCES: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, PsycINFO, PubMed, ClinicalTrials.gov and a selection of journals up to February 28th 2019, for randomised controlled trials (RCTs) investigating the effect of non-pharmacological treatments for fatigue in advanced disease associated with palliative care. Further potentially relevant studies were identified from the reference lists in relevant reviews, and in studies considered for this review. RESULTS: We screened 579 publications; 15 met the inclusion criteria, with data from 1179 participants: 815 were treated with physical exercise, 309 with psycho-educational therapy and 55 with an energy restoration approach. Sources of potential bias included lack of description of blinding and allocation concealment methods, and small study sizes. Physical exercise as treatment for fatigue in patients with advanced cancer was supported by moderate-quality evidence. CONCLUSION: Physical exercise should be considered as a measure to reduce fatigue in patients with advanced cancer, but data on other advanced diseases is lacking. Due to the differences between studies, no clear recommendations can be made with respect to the best type of physical therapy. Restoration exercise and psycho-educational therapy are promising treatment options, although further research is needed.

How to measure the effects and potential adverse events of palliative sedation? An integrative review.

BACKGROUND: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. AIM: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. DESIGN: Integrative review of most recent empirical research. DATA SOURCES: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010-2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. RESULTS: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. CONCLUSIONS: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment.

Audiobooks from terminally ill parent for their children - a qualitative evaluation.

BACKGROUND: Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. METHODS: Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. The contents of the audiobooks are not part of the evaluation. RESULTS: The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of 7 years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention. CONCLUSION: Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

The impact of COVID-19 on palliative care workers across the world: A qualitative analysis of responses to open-ended questions.

OBJECTIVE: With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a "tsunami of suffering." Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation. METHOD: We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame. RESULTS: Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies. SIGNIFICANCE OF RESULTS: The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers' capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.

Availability as key determinant in the palliative home care setting from the patients' and family caregivers' perspectives: A quantitative-qualitative-content analysis approach.

OBJECTIVE: A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

Impact of COVID-19 Pandemic on Palliative Care Workers: An International Cross-sectional Study.

OBJECTIVES: The COVID-19 pandemic and the measures taken to mitigate spread have affected countries in different ways. Healthcare workers, in particular, have been impacted by the pandemic and by these measures. This study aims to explore how COVID-19 has impacted on palliative care (PC) workers around the world. MATERIALS AND METHODS: Online survey to members of the International Association for Hospice and PC during the initial months of the COVID-19 pandemic. Convenience sampling was used. Statistical descriptive and contingency analyses and Chi-square tests with P < 0.05 were conducted. RESULTS: Seventy-nine participants (RR = 16%) from 41 countries responded. Over 93% of those who provide direct patient care reported feeling very or somewhat competent in PC provision for patients with COVID-19. Eighty-four felt unsafe or somewhat safe when caring for patients with COVID-19. Level of safety was associated with competence (P ≤ 0.000). Over 80% reported being highly or somewhat affected in their ability to continue working in their PC job, providing care to non-COVID patients and in staff availability in their workplace. About 37% reported that availability and access to essential medicines for PC were highly or somewhat affected, more so in low-income countries (P = 0.003). CONCLUSION: The results from this study highlight the impact of COVID-19 on the provision of PC. It is incumbent on government officials, academia, providers and affected populations, to develop and implement strategies to integrate PC in pandemic response, and preparedness for any similar future events, by providing appropriate and comprehensive education, uninterrupted access to essential medicines and personal protective equipment and ensure access to treatment and care, working together with all levels of society that is invested in care of individuals and populations at large. The long-term effects of the pandemic are still unknown and future research is needed to monitor and report on the appropriateness of measures.