Workshop on hastened death as "space for an appreciative discussion": A qualitative study.

AIM: To evaluate the suitability of a drama-based workshop as a method for ethical deliberation. BACKGROUND: Nurses worldwide are inadequately prepared to care for people who desire hastened death, which can lead to ethical and moral dilemmas. To address this problem, we developed a drama-based ethical deliberation workshop to assist nurses in these situations. Senghor and Racine's three moments of ethical deliberation and their quality criteria served as basis for evaluation. DESIGN: Qualitative descriptive study design. METHODS: Non-participant observations and a survey with incomplete sentences to be completed by nursing students were used. Data analysis followed Mayring's deductive content analysis approach. RESULTS: All three moments of ethical deliberation according to Senghor and Racine were identified. Participants recognised hastened death as morally problematic, shared their experiences and gained a deeper understanding of the problem. They reported feeling better prepared for encounters with persons seeking assisted suicide. In terms of its quality, the drama-based workshop achieved good and partial ethical deliberation. CONCLUSIONS: The workshop has demonstrated its suitability as a method for ethical deliberation. The workshop should be complemented by specific modules, such as communication skills and be tailored to other professional groups. A validated instrument is needed to ensure a more comprehensive assessment of the quality.

Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. METHODS: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. TRIAL REGISTRATION: The study is registered at ClinicalTrails.gov; NCT06418646.

Guideline "Parkinson's disease" of the German Society of Neurology (Deutsche Gesellschaft für Neurologie): concepts of care.

INTRODUCTION: In 2023, the German Society of Neurology published a new guideline on Parkinson's disease. An important section dealt with PD care concepts, which represent a particularly dynamic field of PD research, including their implementation in clinical practice. Parkinson's disease is the second most common age-associated neurodegenerative disease. Current estimates of the number of cases in the population describe a significant increase in prevalence in Germany by 2030 with higher proportions in rural areas, which also have a lack of sufficient PD care resources. RECOMMENDATIONS: In comparison with other international guidelines, which have so far mentioned palliative care and Parkinson's nurses in particular, the German S2k guideline expands the recommended concepts of PD care to include PD day clinics, inpatient complex treatment, and PD networks. CONCLUSION: Concepts of PD care guidelines are necessary because of the complex and rapidly evolving field of PD care provision. If applied appropriately, the potential for optimized care can be exploited and both the patient burden and the economic burden can be reduced. Given that modern care concepts have so far only been applied in a few regions, it is often impossible to generate broad evidence-based data, so that the evaluation of PD care concepts is partly dependent on expert opinion.

Multidisciplinary care in Parkinson's disease.

Parkinson's Disease (PD) is a multifaceted and progressive disorder characterized by a diverse range of motor and non-motor symptoms. The complexity of PD necessitates a multidisciplinary approach to manage both motor symptoms, such as bradykinesia, gait disturbances and falls, and non-motor symptoms, including cognitive dysfunction, sleep disturbances, and mood disorders, which significantly affect patients' quality of life. Pharmacotherapy, particularly dopaminergic replacement therapy, has advanced to alleviate many symptoms. However, these medications can also induce side effects or aggravate symptoms like hallucinations or orthostatic dysfunction, highlighting the need for comprehensive patient management. The optimal care for PD patients involves a team of specialists, including neurologists, physical and occupational therapists, speech-language pathologists, psychologists, and other medical professionals, to address the complex and individualized needs of each patient. Here, we illustrate the necessity of such a multidisciplinary approach in four illustrative PD cases with different disease stages and motor and non-motor complications. The patients were treated in different treatment settings (specialized outpatient clinic, day clinic, inpatient care including neurorehabilitation). The biggest challenge lies in organizing and implementing such comprehensive care effectively across different clinical settings.

Homecare amyotrophic lateral sclerosis (ALS): A multidisciplinary, home-based model of care for patients with ALS and their caregivers.

INTRODUCTION/AIMS: Multidisciplinary care for patients with amyotrophic lateral sclerosis (ALS) is recommended in international guidelines, but reaches its limits when immobility increases. This pilot project addresses this gap by delivering home-based, specialized, multiprofessional support to ALS patients who are not able to attend outpatient care. The study assessed the feasibility of this model of care and the satisfaction of both patients and caregivers. METHODS: This was a longitudinal cohort study of patients with ALS and their caregivers in the surroundings of Munich, Germany. Patients were regularly visited at home by a multiprofessional team (neurologists/palliative care physicians, nurse, social worker, chaplain). RESULTS: A total of 94 patients with ALS were included in the homecare project and 88 patients and 74 caregivers were enrolled in the accompanying study. The mean care duration was 221 days, enabling 61% of the 49 deceased patients to die at home. Notably, 20% of patients chose a way to hasten death. Patient satisfaction (ICECAP Supportive Care Measure [SCM]: 23.7/28, CollaboRATE: 10.6/12) and caregiver perception of the end-of-life phase (Caregiver Evaluation of the Quality of End-Of-Life Care [CEQUEL]: 24.9/26) were high. DISCUSSION: This pilot project successfully implemented specialized, home-based multidisciplinary care for ALS patients and caregivers, demonstrating both feasibility and high satisfaction. The program enabled a large proportion of patients to remain in their homes, reducing the need for hospital care. The multiprofessional approach, including neuropalliative, psychosocial and spiritual support provided comprehensive care that addressed needs of patients and caregivers. Further research is warranted to explore cost-effectiveness.

Factors associated with self-rated health in people with late-stage parkinson's and cognitive impairment.

PURPOSE: To investigate the contributors to self-rated health in people with late-stage Parkinson's disease (PD) and cognitive impairment. METHODS: A secondary analysis of baseline data from the international Care of Late-Stage Parkinsonism (CLaSP) cohort study was conducted. Participants with PD and either dementia or mild cognitive impairment or MMSE < 24/30 in the absence of major depression were included if they had completed the EQ-5D-3L assessment (n = 277). Factors associated with self-rated health (EQ-5D-3L Index and Visual Analogue Scale) were investigated through multivariable linear regression. RESULTS: More severe PD (motor and non-motor) was associated with worse self-rated health. The EQ-5D-3L dimensions of Mobility, Self-Care and Usual Activities were almost universally affected; the latter two particularly severely. Being unable to perform usual activities or having moderate to extreme anxiety or depression were significantly associated with EQ-5D-3L Visual Analogue Scale, suggesting these are particularly valued. Worse motor impairment and function and the non-motor symptom domains of mood, perception, sexual function, and miscellaneous (e.g., pain) were associated with worse self-rated health, whereas greater burden of gastrointestinal symptoms was associated with better self-rated health in multivariate analysis. Better self-rated health was associated with recent PD nurse consultation, and higher doses of dopaminergic medication. CONCLUSION: Improvement of activities of daily living, mood and anxiety should be prioritised in clinical practice, with consideration of perception and sexual function in this population. Recent nurse consultations and higher antiparkinsonian doses are associated with better self-rated health, suggesting there is no room for a therapeutic nihilism in this population of people within a complex phase of PD.

Factors Associated with Preferred Place of Care and Death in Patients with Parkinson's Disease: A Cross-Sectional Study.

Background: A significant proportion of people with Parkinson's disease (PwPD) die in hospital settings. Although one could presume that most PwPD would favor being cared for and die at home, there is currently no evidence to support this assumption. Objective: We aimed at exploring PwPD's preferences for place of end-of-life care and place of death, along with associated factors. Methods: A cross-sectional study was conducted to investigate PwPD's end-of life wishes regarding their preferred place of care and preferred place of death. Using different approaches within a generalized linear model framework, we additionally explored factors possibly associated with preferences for home care and home death. Results: Although most PwPD wished to be cared for and die at home, about one-third reported feeling indifferent about their place of death. Preferred home care was associated with the preference for home death. Furthermore, a preference for dying at home was more likely among PwPD's with informal care support and spiritual/religious affiliation, but less likely if they preferred institutional care towards the end of life. Conclusions: The variation in responses regarding the preferred place of care and place of death highlights the need to distinguish between the concepts when discussing end-of-life care. However, it is worth noting that the majority of PwPD preferred care and death at home. The factors identified in relation to preferred place of care and death provide an initial understanding of PwPD decision-making, but call for further research to confirm our findings, explore causality and identify additional influencing factors.

Care of Late-Stage Parkinsonism: Resource Utilization of the Disease in Five European Countries.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disease that leads to progressive disability. Cost studies have mainly explored the early stages of the disease, whereas late-stage patients are underrepresented. OBJECTIVE: The aim is to evaluate the resource utilization and costs of PD management in people with late-stage disease. METHODS: The Care of Late-Stage Parkinsonism (CLaSP) study collected economic data from patients with late-stage PD and their caregivers in five European countries (France, Germany, the Netherlands, UK, Sweden) in a range of different settings. Patients were eligible to be included if they were in Hoehn and Yahr stage >3 in the on state or Schwab and England stage at 50% or less. In total, 592 patients met the inclusion criteria and provided information on their resource utilization. Costs were calculated from a societal perspective for a 3-month period. A least absolute shrinkage and selection operator approach was utilized to identify the most influential independent variables for explaining and predicting costs. RESULTS: During the 3-month period, the costs were €20,573 (France), €19,959 (Germany), €18,319 (the Netherlands), €25,649 (Sweden), and €12,156 (UK). The main contributors across sites were formal care, hospitalization, and informal care. Gender, age, duration of the disease, Unified Parkinson's Disease Rating Scale 2, the EQ-5D-3L, and the Schwab and England Scale were identified as predictors of costs. CONCLUSION: Costs in this cohort of individuals with late-stage PD were substantially higher compared to previously published data on individuals living in earlier stages of the disease. Resource utilization in the individual sites differed in part considerably among these three parameters mentioned. © 2024 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

The Care Needs of Patients With Cognitive Impairment in Late-Stage Parkinson's Disease.

BACKGROUND: Cognitive impairment is common in Parkinson's disease (PD), but care needs and resource use for those with significant cognitive impairment are not well established. METHODS: 675 participants with PD from the international Care of Late-Stage Parkinsonism (CLaSP) study were grouped into those without (n = 333, 49%) and with cognitive impairment (MMSE < 24/30 or diagnosis of dementia or Mild Cognitive Impairment; n = 342, 51%) and their clinical features, care needs and healthcare utilisation compared. The relationship between cognition and healthcare consultations was investigated through logistic regression. RESULTS: Cognitive impairment was associated with more motor and non-motor symptoms, less antiparkinsonian but higher rates of dementia and antipsychotic medication, worse subjective health status and greater caregiver burden. A considerable proportion did not have a pre-established cognitive diagnosis. Care needs were high across the whole sample but higher in the cognitive impairment group. Home care and care home use was higher in the cognitive impairment group. However, use of healthcare consultations was similar between the groups and significantly fewer participants with cognitive impairment had had recent PD Nurse consultations. Worse cognitive impairment was associated with lower frequency of recent PD nurse and multidisciplinary therapy consultation (physiotherapy, massage, occupational therapy, speech training and general nursing). CONCLUSIONS: Those with cognitive impairment have more severe PD, higher care needs and greater social care utilisation than those with normal cognition, yet use of health care services is similar or less. Cognitive impairment appears to be a barrier to PD nurse and multidisciplinary therapy consultations. This challenges current models of care: alternative models of care may be required to serve this population. PLAIN LANGUAGE SUMMARY: Parkinson's disease is a long-term progressive health condition. Over time, many people with Parkinson's develop problems with thinking and memory, called cognitive impairment. This can negatively impact the daily lives of the person with Parkinson's and their caregiver. It is also thought to be a barrier to accessing healthcare. How people with Parkinson's who have cognitive impairment use healthcare and detail of their care needs is not well known.We analysed data from a large sample of people with advanced Parkinson's from six European countries to investigate their symptoms, care needs and healthcare use. We compared those with cognitive impairment to (342 people) to those without cognitive impairment (333 people).We found that those with cognitive impairment had more severe Parkinson's across a range of symptoms compared to those without cognitive impairment. They also had more care needs, reported their health status to be worse, and their caregivers experienced greater strain from caring. Whilst use of other healthcare services was similar between the two groups, those with cognitive impairment were less likely to have recently seen a Parkinson's nurse than those without cognitive impairment. Further analysis showed an association between cognitive impairment and not having seen a Parkinson's nurse or therapist recently, taking psychiatric symptoms, functional disability and care home residence into account. Therapists included were physiotherapy, massage, occupational therapy, speech training and general nursing. These findings highlight unmet need. We suggest that healthcare should be more targeted to help this group of people, given their higher care needs.

Barriers for Adult Patients to Access Palliative Care in Hospitals: A Mixed Methods Systematic Review.

BACKGROUND: Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs. AIM: To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients. DESIGN: A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477). DATA SOURCES: The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed. RESULTS: After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Interindividual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a noncancer condition or a low symptom burden, the focus on cure in hospitals, nonacceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians' emotional discomfort and difficult prognostication. CONCLUSION: Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.

A systematic practice review: Providing palliative care for people with Parkinson's disease and their caregivers.

BACKGROUND: People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. AIM: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers. DESIGN: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care. DATA SOURCES: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. RESULTS: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. CONCLUSIONS: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.

Meaning in Life in Late-Stage Parkinson's Disease: Results from the Care of Late-Stage Parkinsonism Study (CLaSP) in Six European Countries.

The Care of Late-Stage Parkinsonism (CLaSP) study is a longitudinal, multicentre, prospective cohort study to assess the needs and provision of care for people with late-stage Parkinson's disease and their caregivers in six European countries. As a cross-sectional study within the CLaSP study, 509 people with Parkinson's disease completed the "Schedule-for-Meaning-in-Life-Evaluation" (SMiLE) questionnaire. We compared the results to those of a representative sample of healthy participants (n = 856). People with late-stage Parkinson's disease reported family, partnership and spirituality as the greatest areas of importance. Overall, they had lower SMiLE indices compared to healthy participants. People with late-stage Parkinson's disease rated the importance of core meaning in life areas (namely family, social relations and health) as significantly lower than the representative cohort and they also rated satisfaction as significantly lower in most areas. In conclusion, people with late-stage Parkinson's disease do have areas where they can find meaning, such as family, partnership and spirituality. However, they indicate a lack of fulfilment of their individual MiL, reflected by low satisfaction rates in the majority of meaning in life categories. The need for spiritual support for people with Parkinson's disease indicates the important role of chaplains to help people with Parkinson's disease maintain meaning in life.

Speech and Nonspeech Parameters in the Clinical Assessment of Dysarthria: A Dimensional Analysis.

Nonspeech (or paraspeech) parameters are widely used in clinical assessment of speech impairment in persons with dysarthria (PWD). Virtually every standard clinical instrument used in dysarthria diagnostics includes nonspeech parameters, often in considerable numbers. While theoretical considerations have challenged the validity of these measures as markers of speech impairment, only a few studies have directly examined their relationship to speech parameters on a broader scale. This study was designed to investigate how nonspeech parameters commonly used in clinical dysarthria assessment relate to speech characteristics of dysarthria in individuals with movement disorders. Maximum syllable repetition rates, accuracies, and rates of isolated and repetitive nonspeech oral-facial movements and maximum phonation times were compared with auditory-perceptual and acoustic speech parameters. Overall, 23 diagnostic parameters were assessed in a sample of 130 patients with movement disorders of six etiologies. Each variable was standardized for its distribution and for age and sex effects in 130 neurotypical speakers. Exploratory Graph Analysis (EGA) and Confirmatory Factor Analysis (CFA) were used to examine the factor structure underlying the diagnostic parameters. In the first analysis, we tested the hypothesis that nonspeech parameters combine with speech parameters within diagnostic dimensions representing domain-general motor control principles. In a second analysis, we tested the more specific hypotheses that diagnostic parameters split along effector (lip vs. tongue) or functional (speed vs. accuracy) rather than task boundaries. Our findings contradict the view that nonspeech parameters currently used in dysarthria diagnostics are congruent with diagnostic measures of speech characteristics in PWD.

A Rejoinder to Otaiku: Religiosity and Risk of Parkinson's Disease in England and the USA-The Health Determinants of Spirituality, Religiosity and the Need for State of the Art Research.

This rejoinder refers to the research of Otaiku (J Religion Health 1-17, 2022), which concluded that low religiosity in adulthood is associated with an increased risk of developing Parkinson's disease. Although Otaiku points to a number of limitations of their own research and thus clearly qualifies that further work is needed to verify the findings, a number of concerns still need to be raised about this research. Five points are highlighted in this article, namely (1) it is not clear why and how the variables of religiosity and spirituality were combined; (2) it is not reported whether other variables were tested; (3) they refer to the four different groups of how religiosity plays a role, which include extremely small samples of 11, 16, 25, 22 participants, (4) the final conclusion is based only on the two extreme groups with Parkinson's disease, (5) it remains unclear whether all patients had Parkinson's disease. Consequently, we are of opinion that Otaiku's findings and conclusions are questionable, but agree that future studies are warranted that require state-of-the-art research. [Note: A detailed response to this rejoinder has been provided in a subsequent commentary; Koenig (Journal Religion Health 62, 2023)].

The involvement of palliative care with neurology - a comparison of UK, Switzerland and Italy.

OBJECTIVES: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. METHODS: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. RESULTS: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. CONCLUSIONS: Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.

Neurological consultations via telemedicine for specialized outpatient palliative care (SOPC) at home and in hospice (TANNE project): study protocol for a randomized controlled trial.

BACKGROUND: Neurological diseases cause numerous challenges in palliative care. Telemedicine may improve the access to specialized expertise in neurology for patients, their relatives, and palliative care physicians. The TANNE study offers teleconsultations by a hospital-based neuropalliative center for specialized outpatient palliative care (SOPC) and hospices. A prospective, partially randomized, controlled trial aims at generating evidence for clinical improvements, quality of life, and cost efficiency. METHODS: SOPC and hospice teams in Bavaria, Germany, are partially randomized to one of two study arms, namely a treatment group with teleconsultations by specialists for neurology and palliative medicine or to a control group with interventions after a 12-months delay. Individual and population-based measures are assessed with a mixed-methods design in order to evaluate the medical effects, the potential for implementation in standard care, and health economic aspects. The primary outcome consists of the mean change difference between groups in the Integrated Palliative Care Outcome Scale (IPOS), which physicians assess before and after treatment of a neurological event. Besides, several secondary outcomes are investigated, including quality of life, which is measured with the revised McGill Quality of Life Questionnaire (McGill QOL-R) as well as items regarding general and health-related quality of life. Further secondary outcomes include the concrete progress of the neurological signs and symptoms; the subjective change in well-being since the start of the treatment of the neurological diseases from the perspectives of patients, their relatives, as well as medical and nursing professionals; as well as patient, professional, and caregiver satisfaction with the teleconsultations. Moreover, a health economic evaluation compares group differences regarding hospital visits and emergency calls with utilization measurements. DISCUSSION: The TANNE trial provides a comprehensive and complex evaluation design for teleconsultations in neuropalliative care. Ethical considerations need to take the patients' vulnerability into account. The project promises to substantially broaden the width of health care services and to improve the quality of life for deserving patients. TRIAL REGISTRATION: German Clinical Trials Register ( www.germanctr.de [July 17, 2022], DRKS ID: DRKS00027436. Registered February 10th, 2022, retrospectively registered. https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00027436 [July 17, 2022].

European interprofessional postgraduate curriculum in palliative care: A narrative synthesis of field interviews in the region of Middle, Eastern, and Southeastern Europe and Central and West Asia.

OBJECTIVES: In 2018, a study was conducted in the Eastern and South-eastern Europe and Central Asia. National leaders of palliative care were asked to describe developments in postgraduate education in their region. They were asked whether the introduction of a European curriculum would be useful in their country. The aim was to explore the structures of postgraduate education at country level in order to define the barriers and opportunities. METHODS: This is an ethnographic study based on semi-structured field interviews. A thematic analysis was chosen for data extraction and a narrative synthesis for the systematic presentation and critical discussion of the results. RESULTS: Thirty-two interviews were recorded in 23 countries. The analysis revealed 4 main themes: (1) general barriers to access, (2) necessary to improve palliative care education, (3) palliative care core curriculum - the theoretical framework, and (4) challenges in implementation. These main themes were complemented by 19 subthemes. SIGNIFICANCE OF RESULTS: Palliative care is understood as a universal idea, which in practice means accepting social pluralism and learning to respect unique individual needs. This makes teaching palliative care a very special task because there are no golden standards for dealing with each individual as they are. In theory, a European curriculum recommendation is useful to convince governments and other key stakeholders of the importance of postgraduate education. In practice, such a curriculum needs to be adapted to the constraints of health services and human resources. Validated quality assessment criteria for palliative care education are crucial to advance postgraduate education.

International models of neuropalliative care.

Can equitable Neuropalliative care (NpC) be delivered globally? This chapter surveys existing services and ground realities in different parts of the world. In many countries, universal healthcare (UHC) seems to have been a precondition for the establishment of palliative care (PC). PC has been recognized as a basic human right as a part of UHC. Quality of Death and PC surveys provide an overview of the existing situation. Currently, PC is largely focused on the needs of cancer patients and this is a legacy issue for professionals and systems. Communities however recognize suffering and do not distinguish between medical diagnoses. The development of NpC as a subspecialty of neurology allows neurologists everywhere to become primary palliative care providers for their own patients. It is also necessary to integrate neurology with existing palliative care services. There is much that can be done to improve NpC provision even within the limits that bound every jurisdiction and trial evidence is emerging to inform this practice. This chapter is a survey of the challenges and the potential.