Identifying the palliative care needs of frail, older, housebound patients in the community: A cross-sectional study.

BACKGROUND: The early introduction of palliative care can have a positive impact on the quality of life of patients suffering from life-limiting diseases. However, the palliative care needs of older, frail, housebound patients are still mostly unknown, as is the impact of frailty on the importance of these needs. OBJECTIVES: To identify the palliative care needs of frail, older, housebound patients in the community. METHODS: We conducted a cross-sectional observational study. This study took place in a single primary care center and included patients who were ≥65 years old, housebound, followed by the Geriatric Community Unit of the Geneva University Hospitals. RESULTS: Seventy-one patients completed the study. Most patients were female (56.9%), and mean age (SD) was 81.1 (±7.9). The Edmonton Symptom Assessment Scale mean (SD) score was higher in frail patients as opposed to vulnerable patients for tiredness (p = 0.016), drowsiness (p = 0.0196), loss of appetite (p = 0.0124), and impaired feeling of well-being (p = 0.0132). There was no difference in spiritual well-being, measured by the spiritual scale subgroup of the Functional Assessment of the Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-sp) between frail and vulnerable participants, although scores in both groups were low. Caregivers were mainly spouses (45%) and daughters (27.5%) with a mean (SD) age of 70.7 (±13.6). The overall carer-burden measured by the Mini-Zarit was low. SIGNIFICANCE OF RESULTS: Older, frail, housebound patients have specific needs that differ from non-frail patients and should guide future palliative care provision. How and when palliative care should be provided to this population remains to be determined.

[Assisted suicide: a need for clarification]. / Suicide assisté : un besoin de clarification.

In Switzerland, altruistic assisted suicide is permitted. We present here the federal regulations, the deontological rules, the provisions adopted by the cantons and other requirements applicable to assisted suicide. Given the complexity of these different rules and the legal questions that remain open, we recommend the preparation of brochures for patients, as well as better training and support for people faced with requests for assisted suicide.

En Suisse, l'assistance altruiste au suicide est admise. Nous présentons ici la règlementation fédérale, les règles déontologiques, les dispositions adoptées par les cantons et les éventuelles autres exigences applicables en matière de suicide assisté. Vu la complexité de ces différentes règles et les questions juridiques encore ouvertes, nous recommandons la rédaction de brochures à destination des patients, ainsi qu'une meilleure formation et encadrement des personnes confrontées à des demandes d'assistance au suicide.

[Early palliative care for the management of breathlessness in pulmonary diseases]. / Prise en charge palliative précoce de la dyspnée dans les maladies pulmonaires.

Dyspnoea in chronic respiratory disease is a very frequent symptom with a significant impact on quality of life (QoL). The aim of palliative care is to improve and maintain the QoL of patients with life-threatening diseases and its early implementation is now recommended in many evolving pulmonary diseases. The effectiveness of symptomatic treatments to relieve refractory breathlessness (morphine, oxygen supply, hypnosis, pulmonary rehabilitation) is often limited. These measures are more effective if offered early in the holistic management of the patient. This article illustrates and describes, with the help of a clinical situation, these treatments options and the collaborations established between the palliative care and pneumology divisions.

La dyspnée en lien avec une maladie respiratoire chronique est un symptôme très fréquent avec un impact important sur la qualité de vie (QoL). Les soins palliatifs ont pour objectif d'améliorer la QoL et les symptômes des personnes atteintes de maladies potentiellement mortelles et sont recommandés dans la prise en charge usuelle de nombreuses pathologies pulmonaires évolutives. Les traitements symptomatiques de la dyspnée réfractaire (morphine, oxygène, hypnose, réadaptation respiratoire) ont souvent un effet limité. Ces mesures sont d'autant plus efficaces si elles sont proposées précocement dans la prise en charge holistique du patient. Cet article illustre et décrit, à partir d'une situation clinique, ces modalités thérapeutiques et les collaborations établies entre les soins palliatifs et la pneumologie.

[Advance care planning: how can we do better in geriatrics?] / Projet de soins anticipé : comment pouvons-nous mieux faire en gériatrie ?

How can we improve the discussion and documentation of goals of care with older people and their relatives? When promoting advance care planning one is expected to address a threefold challenge: an ethical challenge, a quality of care - patient safety challenge, and a public health challenge. The aim of this article is to describe how we integrated advance care planning at the Geneva University Hospitals with a focus on the department of geriatrics and rehabilitation. We explain how we improved the documentation in the electronic medical records. We detail how we trained healthcare professionals and disseminated the information to patients and to the general public. Finally, we point out the success factors and barriers in this process, as they might be encountered by healthcare institutions and networks implementing advance care planning elsewhere in Switzerland.

Comment pouvons-nous mieux discuter et documenter les objectifs de soins avec les personnes âgées et leurs proches ? Promouvoir le projet de soins anticipé (ProSA), c'est relever un triple enjeu : d'éthique, de qualité-sécurité des soins et de santé publique. L'objectif de cet article est de décrire comment nous avons intégré le ProSA aux Hôpitaux universitaires de Genève en l'illustrant du retour d'expérience du Département de réadaptation et gériatrie. Nous expliquons comment la documentation électronique a été améliorée. Nous détaillons la formation des personnels et les outils d'information pour l'institution et le grand public. Enfin, nous indiquons les facteurs de succès et obstacles de ce processus que pourront rencontrer les institutions et réseaux de santé en Romandie et au-delà implémentant le ProSA en Suisse.

[Improving access to palliative care for patients with heart failure: advances and challenges]. / Améliorer l'accès aux soins palliatifs pour les patients atteints d'insuffisance cardiaque chronique - Avancées et défis.

Following the therapeutic progress of the last decades, patients suffering from chronic heart failure (HF) are living longer than ever before. However, recovery from a HF syndrome remains rare and patients more often have to live with chronic HF which considerably impacts their quality of life. For several years, national and international cardiology societies have recommended the early integration of palliative care for HF patients. Although the impact of palliative care on the quality of life, depression and general symptom management of patients with HF has now been clearly established, its implementation is still scarce. The objective of this review is to highlight recommendations and models of care for the implementation of palliative care for patients with HF.

Grâce aux progrès thérapeutiques des dernières décennies, les personnes atteintes d'insuffisance cardiaque (IC) ont une espérance de vie qui augmente. Cependant, la guérison du syndrome d'IC reste rare et le plus souvent les patients vivent avec une IC chronique ayant un impact considérable sur leur qualité de vie. Depuis de nombreuses années, les recommandations nationales et internationales de cardiologie préconisent une prise en charge palliative intégrée et précoce de ces patients. Bien que son impact sur la qualité de vie, la dépression et la gestion globale des symptômes des patients souffrant d'IC soit maintenant clairement démontré, son implémentation dans la pratique reste insuffisante. L'objectif de cet article est de mettre en lumière les recommandations et modèles de prise en charge palliative pour les patients souffrant d'IC.

[Opiod prescription in primary care: the case of chronic non cancer pain]. / Prescription des opiacés en médecine de premier recours : le cas des douleurs chroniques non cancéreuses.

Pain, including chronic non-cancer pain (CNCP), is a common reason for primary care consultation. CNCP encompasses a heterogeneous group of patients, whose care is often complex. The increase in opioid prescription in Switzerland and worldwide is associated with CNCP, while opioid use for this indication is debated. Several studies suggest a limited effect on pain and function, while adverse effects are frequent. This article aims to summarize what is known about opioid prescription for CNCP and international guidelines and highlight important aspects for the general practitioner.

La douleur, dont la douleur chronique non cancéreuse (DCNC), est un motif de consultation très fréquent en médecine de premier recours. La DCNC regroupe des populations hétérogènes de patients dont la prise en charge est généralement complexe. L'augmentation de la prescription d'opiacés en Suisse et dans le monde concerne davantage les DCNC, alors que l'utilisation d'opiacés pour cette indication est controversée. Différentes études suggèrent que les effets bénéfiques sur la douleur et la fonctionnalité seraient limités contrairement aux effets secondaires relativement fréquents. Cet article a pour but de résumer l'état des connaissances sur la prescription d'opiacés pour les DCNC et les recommandations internationales pour fournir une aide pratique en médecine générale.

Monitoring nociception and awareness during palliative sedation: A systematic review.

BACKGROUND: Providing unawareness and pain relief are core elements of palliative sedation. In addition to clinical scales, nociception and electroencephalogram-based depth of sedation monitoring are used to assess the level of consciousness and analgesia during sedation in intensive care units and during procedures. AIM: To determine whether reported devices impact the outcomes of palliative sedation. DESIGN: Systematic review and narrative synthesis of research published between January 2000 and December 2020. DATA SOURCES: Embase, Google Scholar, PubMed, CENTRAL, and the Cochrane Library. All reports describing the use of any monitoring device to assess the level of consciousness or analgesia during palliative sedation were screened for inclusion. Data concerning safety and efficacy were extracted. Patient comfort was the primary outcome of interest. Articles reporting sedation but that did not meet guidelines of the European Association for Palliative Care were excluded. RESULTS: Six reports of five studies were identified. Four of these were case series and two were case reports. Together, these six reports involved a total of 67 sedated adults. Methodological quality was assessed fair to good. Medication regimens were adjusted to bispectral index monitoring values in two studies, which found poor correlation between monitoring values and observational scores. In another study, high nociception index values, representing absence of pain, were used to detect opioid overdosing. Relatives and caregivers found the procedures feasible and acceptable.

Shifting palliative care paradigm in primary care from better death to better end-of-life: a Swiss pilot study.

BACKGROUND: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late. The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients' quality of life. METHODS: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues. 3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis. RESULTS: Eight PCPs were trained. Patient recruitment was a challenge for PCPs who feared to impose additional loads on their patients. PCPs became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient's cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life. CONCLUSIONS: While the intervention was acceptable to PCPs, recruitment was a challenge and a follow up trial was not deemed feasible using the current design but PCPs reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life. TRIAL REGISTRATION: The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki.

No difference in effects of 'PACE steps to success' palliative care program for nursing home residents with and without dementia: a pre-planned subgroup analysis of the seven-country PACE trial.

BACKGROUND: 'PACE Steps to Success' is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents' comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. METHODS: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying-End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). RESULTS: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (- 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (- 0.6; p = 0.741), non-advanced and without dementia (- 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632). CONCLUSIONS: The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents' comfort, this program needs further development. TRIAL REGISTRATION: ISRCTN, ISRCTN14741671 . Registered 8 July 2015 - Retrospectively registered.

Characteristics of the skills of caregivers of people with dementia: observational study.

BACKGROUND: Due to demographic change within an aging population as announced by the WHO, the involvement of caregivers is essential. Caregivers are required to change their roles within the family unit. Such life transitions experienced by caregivers to people confronted with dementia-type pathologies are sometimes difficult, necessitating the acquisition and development of certain skills. Few studies have shown that caregivers develop specific and essential skills to promote quality care and safety. To characterize their skills, there is a need to identify the abilities, knowledge, resources, obstacles and constraints that contribute to caregivers' transitions. The research question for this study was: What skills do caregivers use to care for their loved one with dementia? METHODS: Qualitative observational research based on the epistemological paradigm of socioconstructivist knowledge was conducted. The study was carried out in the canton of Geneva and recruitment was carried out through the participation of the Alzheimer's association and the association for the support and assistance of elderly people in medical and social institutions and their families (APAF). Observations and semi-structured interviews were conducted in the homes of 14 family carers caring for their loved one with dementia. The observations were transcribed on observation grids and the interviews were recorded. Subsequently, according to the classic distinction of Denzin (Interpretive interractionism, 2001), we analysed the observation notes and verbatims, then as recommended by Miles et al. (Qualitative data analysis: a methods sourcebook, 2014), two researchers triangulated the results. RESULTS: The results identified five types of situations regularly experienced by caregivers. The study characterized 11 skills that caregivers use to cope with their daily lives. The learning process and maladaptive behaviours in caring for their loved ones with dementia were also highlighted. CONCLUSION: This study was able to point out that today's caregivers have developed more competency than their predecessors. This evolution can be explained by new paradigms of care requiring caregivers to be more involved. Although some caregivers need training, others through their experiences can act upon and provide knowledge. To improve the quality and safety of care for people with dementia, this expertise can be the subject of partnerships between caregivers and health care staff.

[Palliative and intensive care collaborative approach in the management of therapeutic withdrawals: lessons learned from the COVID-19 experience]. / Approche collaborative des soins palliatifs et des soins intensifs dans la gestion des retraits thérapeutiques - Ce qu'il faut retenir de l'expérience du COVID-19.

During the COVID-19 pandemic, many of the usual aspects of therapeutic withdrawals had to be adapted. Preparing and supporting patients, next of kin and staff to death was particularly challenging. Palliative care was integrated into the process of therapeutic withdrawals in intensive care units during this crisis. Continuing education related to end-of-life issues and defining collaboration with palliative care is essential for intensive care teams.

Durant la pandémie Coronavirus Disease 19, certains aspects habituels des retraits thérapeutiques ont dû être adaptés. L'accompagnement des patients et de leurs proches au décès ainsi que le soutien aux équipes de soins ont amené à résoudre de nouveaux défis. L'intégration des soins palliatifs dans les processus de retraits thérapeutiques aux soins intensifs a pu être mise en œuvre durant cette crise sanitaire. La formation continue aux questions en lien avec la fin de vie et l'établissement de plans de collaboration avec les soins palliatifs est essentielle aux soins intensifs.

[Intensive treatment in family medicine : use of pumps and continuous glucose measurement systems]. / Traitements intensifs en médecine de famille : usage de pompes et systèmes de mesure en continu du glucose.

New technologic devices are presented: insulin pumps and continuous glucose monitoring (CGM) devices as well as morphine pumps to help general practitioners to deal different intensive situations. Insulin pumps and CGM devices are revolutionary for the management of diabetes. However, their use requires strong patient involvement, the opposite of automated diabetes management. Morphine pumps are a great help when patients in end-of-life stage cannot swallow oral morphine anymore. This article summarizes the main principles of use of these technological devices, common problems and situations at risk primary care practice.

Les dispositifs technologiques font partie de la médecine actuelle. Les pompes à insuline, la mesure en continu du glucose (MCG) ainsi que les pompes à morphine sont présentées ici pour aider le médecin de famille à gérer ces différentes situations intensives. Les pompes à insuline externes et la MCG ont révolutionné la prise en charge du diabète sucré. Pourtant, leur utilisation demande une forte implication du patient, soit l'opposé d'une gestion automatisée du diabète. Les pompes à morphine sont une grande aide lorsque le patient en fin de vie ne peut plus avaler de comprimés ou lorsque l'absorption orale est aléatoire. Cet article résume les principes de fonctionnement de ces dispositifs technologiques, les problématiques communes et les situations à risque pour la pratique du médecin de premier recours.

Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementia.

OBJECTIVE: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia. METHODS: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes. RESULTS: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers. CONCLUSION: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent.

Can Early Introduction of Palliative Care Limit Intensive Care, Emergency and Hospital Admissions in Patients with Severe Chronic Obstructive Pulmonary Disease? A Pilot Randomized Study.

BACKGROUND: Despite their poor prognosis, patients with severe chronic obstructive pulmonary disease (COPD) have little access to palliative care and tend to have a high rate of hospital and intensive care unit (ICU) admissions during their last year of life. OBJECTIVES: To determine the feasibility of a home palliative care intervention during 1 year versus usual care, and the possible impact of this intervention on emergency, hospital and ICU admissions, survival, mood, and health-related quality of life (HRQL). METHODS: Prospective controlled study of patients with severe COPD (GOLD stage III or IV) and long-term oxygen therapy and/or home noninvasive ventilation and/or one or more hospital admissions in the previous year for acute exacerbation, randomized to usual care versus usual care with add-on monthly intervention by palliative care specialists at home for 12 months. RESULTS: Of 315 patients screened, 49 (15.5%) were randomized (26 to early palliative care; 23 to the control group); aged (mean ± SD) 71 ± 8 years; FEV1 was 37 ± 14% predicted; 88% with a COPD assessment test score > 10; 69% on long-term oxygen therapy or home noninvasive ventilation. The patients accepted the intervention and completed the assessment scales. After 1 year, there was no difference between groups in symptoms, HRQL and mood, and there was a nonsignificant trend for higher admission rates to hospital and emergency wards in the intervention group. CONCLUSION: Although this pilot study was underpowered to formally exclude a benefit from palliative care in severe COPD, it raises several questions as to patient selection, reluctance to palliative care in this group, and modalities of future trials.

A framework for cross-cultural development and implementation of complex interventions to improve palliative care in nursing homes: the PACE steps to success programme.

BACKGROUND: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar. METHODS: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support. RESULTS: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention. CONCLUSIONS: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts.

Written interprofessional communication in the context of home healthcare: A qualitative exploration of Swiss perceptions and practices.

The aim of this study was to explore the practices and perceptions of Swiss home care professionals with regards to written interprofessional communication. We analyzed 11 home care notebooks and conducted six focus groups with home health-care professionals in 2015-2016. Interprofessional written communication was rarely explicit. Health professionals reported a lack of clarity about what to document and for whom. They felt unsure how to reconcile the need for confidential information-sharing among health professionals and the desire for patient/families' active involvement. An ideal (electronic) tool should allow patients to formulate goals and use the platform while allowing health professionals to communicate confidentially among themselves in order to avoid information retention.

Are Informal Caregivers of Persons With Dementia Open to Extending Medical Aid in Dying to Incompetent Patients? Findings From a Survey Conducted in Quebec, Canada.

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.

How do expatriate health workers cope with needs to provide palliative care in humanitarian emergency assistance? A qualitative study with in-depth interviews.

BACKGROUND: Given the worldwide increase of chronic diseases, expatriate health workers on assignment with humanitarian emergency organisations can face more clinical situations that require advanced pain control or palliative care. Multiple reasons can prevent the provision of this care. AIM: To better know how health workers react to and cope with this dilemma. DESIGN: A qualitative interview study using inductive thematic analysis was performed. SETTING/PARTICIPANTS: A total of 15 expatriate health workers took part in individual in-depth interviews after their assignment with the organisation 'Médecins sans Frontières'. RESULTS: Clinical situations requiring advanced pain control or palliative care do occur during assignments. Expatriate health workers have different levels of knowledge of pain control and palliative care. Lacking opioids were a main reason for inadequate pain control. The expatriates felt helpless, distressed and frustrated in such situations. Peer support was sometimes helpful. Guidelines for palliative care in emergency settings would have been useful. CONCLUSION: Pain control and palliative care needs occur during clinical practice in emergency humanitarian assistance. Training for expatriate health workers should be improved. Humanitarian organisations should strengthen their capacity to provide pain control and palliative care by developing and applying adapted guidelines.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

BACKGROUND: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. METHODS: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). SECONDARY OUTCOMES: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. DISCUSSION: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. TRIAL REGISTRATION: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.