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Background: The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300-400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ('Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE'), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. Methods: PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. Results: The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. Conclusions: The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process.

Background: a wide range of palliative care services has been implemented in Catalonia over the past 20 years. Quantitative and qualitative differences in the organization of palliative care services between districts and settings can result in wide variability in the quality of these services, and their accessibility. Methods: we implemented a benchmark methodology to compare dimensions of care and organization, to identify aspects requiring improvement, and to establish indicators to measure progress. The overall aim was to generate a consensus document for submission to the Department of Health (DoH) of the Government of Catalonia. Results: a Steering Committee convoked a meeting in Barcelona (Catalonia, Spain) and representatives (n = 114) of all the 37 districts within our health care remit (rural, urban, intermediate, and metropolitan) and settings of the health care system (hospitals, social health centers, community, and nursing homes) attended and took part in plenary sessions and workshops to define areas that, in their experience, were considered weak. Twenty-one consensus recommendations achieving high levels of consensus were generated for submission to the DoH. These included the formal definition of the model of care and organization of palliative care services at all levels in the region, the implementation of measures for improvement in different settings and scenarios, systems for continuous care, and facilities for the continuing training of health care personnel. These proposals have since been implemented in a trial region and, depending on the outcomes, will be applied throughout our health service. Conclusion: we conclude that benchmark methodology is valuable in acquiring data for use in improving palliative care organization for patients' benefit.

People have been thinking, writing and proposing legislation about euthanasia for decades. Arguments from either side have been weighted with moral, religious, ethical, social, human and scientific issues. We too debate euthanasia, propose laws which seek to protect that which is sacred to us; life itself, dignity, control, faith, religion, pulling the favours towards and against its use. ; N/A

Protecting and promoting patients' and families' sense of dignity at end-of-life is an indispensable goal, one that palliative care professionals have pursued unceasingly in the modern era. While researchers have made several attempts to uncover the intricate meaning and constitution of dignity and dignified end-of-life care in recent years, their works are solely based upon a Western individualistic paradigm that may not be applicable in Eastern collective societies. This limitation underscores that the existing body of knowledge is missing an important articulation on the Chinese experience. Thus, to fill this important knowledge gap, this study has applied 'micro', 'meso' and 'macro' levels of inquiries to attain a holistic understanding of dignity and dignified end-of-life care in the Hong Kong Chinese context. Through meaning-oriented interviews with 18 Chinese palliative terminal cancer patients and 18 of their family caregivers, as well as four interpretive-systemic focus groups with 30 key informants involved in a novel end-of-life care pathway programme (N=66), a total of 31 themes that elucidate dignity and dignified end-of-life care have been generated. These 31 themes are carefully organized into 9 categories that reflect the Individual, Familial and Institutional dimensions of dignity at end-of-life. First, the Individual dimension includes: 1) "Personal Autonomy", which consists of Regain Control, Self-Sufficiency, Informed Care Decisions and Future Planning; 2) "Family Connectedness", which consists of Express Appreciation, Achieve Reconciliation, Fulfill Family Obligations and Strengthen Family Bond; and 3) "Spiritual Plasticity", which consists of Enduring pain, Spiritual Surrender, Moral Transcendence and Transgenerational Unity. Second, the Familial dimension involves: 1) "Social Agency", which comprises of Caregiving Resources, Caregiver Assertiveness and Communicative Action; 2) "Family Integrity", which comprises of Mutual Support, Kinship Involvement and Family Adaptability; and 3) "Filial Compassion", which comprises of Compassionate Duty, Reciprocal Relationship and Emotional Connection. Third, the Institutional dimension entails: 1) "Regulatory Empowerment", which encompasses Interdisciplinary Teamwork, Resource Allocation, Culture Building and Collaborative Policymaking; 2) "Family-Centered Care", which encompasses Continuity of Care, Family Conference and Care Partnership; and 3) "Collective Compassion", which encompasses Devotion in Care, Empathic Understanding, and Compassionate Action. These 9 categories and their respected 31 themes are clearly interrelated and embedded within the political, cultural, and spiritual contexts of society, highlighting the intricate interplay of systemic structure and social discourse for promoting dignity at end-of-life. These findings have further led to the development of the 'Patient-Family Model of Dignified Care' and the 'Interpretive-Systemic Framework of Dignity at End-of-Life'. The former provides a new clinical protocol for identifying and evaluating the strengths and weaknesses within the personal, interpersonal and transpersonal functioning of the patient-family dyads in Chinese end-of-life care. The latter offers a public health roadmap for social change that accentuates the necessity for a collective consciousness of compassion in pushing forth the ultimate ideal of living and dying with dignity in Hong Kong. Based on this body of work, recommendations for patient-family care at end-of-life, expansion of community-based palliative care, and development of palliative long-term-care for ensuring quality and equality in the care of dying patients and their families are discussed. ; published_or_final_version ; Social Work and Social Administration ; Doctoral ; Doctor of Philosophy

The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian. RESULTS: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%). CONCLUSION: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.

There is an increased risk of debilitating illnesses that often have no curative treatment with aging. The mainstay of treatment in many such conditions is palliative care: a holistic approach focused on preventing and relieving physical, psychosocial, legal, ethical, and spiritual problems. It involves the facilitation of end-of-life care decisions aimed at relieving distress and improving quality of life. In this article, the authors discuss the role of mental health professionals in legal issues related to palliative care in the elderly around decision-making, right to autonomy, euthanasia, and advanced directive. The cognitive decline associated with aging and mental health issues in the palliative care setting of an individual such as dementia, depression, and hopelessness, and impact on the family members like burnout may influence the overall capacity of that individual to make decisions about their treatment. While an individual has a right to self-determination and autonomy, withholding or withdrawing treatment has many legal and ethical implications, more so in those with incapacity, especially in India due to the absence of uniform legislation. The decision to withhold or withdraw treatment might be a restrictive choice due to limited options in a setting with a lack of palliative care options, poor psychosocial support, nonaddress of mental health issues, and lack of awareness. As the right to health is a constitutional right, and the right to mental health is legally binding under Section 18 of the Mental Health Care Act 2017, systematic efforts should be made to scale up services and reach out to those in need.

Background In increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched. Methods This qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives. Results Interviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes. Conclusion This study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.

Background: Acupuncture has one of the fastest developing evidence bases in Complementary Medicine and is one of the leading therapies included within integrative health care. This narrative review includes two separate parts: the first is about evaluation of the current evidence status in reviews on acupuncture and the second examines and gives examples of available recommendations on acupuncture in treatment guidelines from health care experts and public health organizations recommending acupuncture as a viable treatment in patients in palliative care. Methods: Electronic searches were performed in Pubmed using the terms 'acupuncture' + 'palliative' and adding the term 'safety' to find review articles documenting safety and evidence of effectiveness of acupuncture for treatment of symptoms in palliative care patients. Treatment guidelines that recommend use of acupuncture for symptom control in palliative care were found by searching through a database currently under construction by the lead author. Results: Acupuncture shows emerging evidence for 17 indications in palliative care. Examples were found and presented of publications recommending acupuncture for treatment of symptoms for patients in palliative care from Government, public health, oncology and medical expert sources. The most publications are in oncology, but other conditions were found and a number were found in paediatric care. Conclusions: While the evidence for use of acupuncture to treat symptoms in palliative care patients is relatively weak, the evidence base is growing. Experts worldwide are also increasingly recommending acupuncture as a treatment for symptoms in palliative care. Since acupuncture is a safe, non-pharmacological treatment but with small, clinically significant effects, these recommended uses appear as pragmatic efforts to bridge the gap of treatment options available to this patient group.

Idiopathic pulmonary fibrosis (IPF) is a rare, chronic and ultimately fatal disease for which only palliative treatments existed until recently. Between 2011 and 2015, two new drugs, pirfenidone and nintedanib, were approved in the US and Europe for the treatment of IPF, providing hope for patients. The objectives of our work were to understand physicians' expected use of these new treatments in the US and Europe, and to estimate their potential. To achieve this goal, we conducted surveys amongst US and European Union (EU) pulmonologists caring for patients with IPF. There was a significant difference between EU and US physicians in the treatment of patients with mild disease with pirfenidone; the EU physicians anticipated using pirfenidone for 57% of their patients with mild disease, whereas the US pulmonologists anticipated using it for 34% of their patients (p = 0.01). Regarding patients with severe disease, the US pulmonologists anticipated treating 74% with either pirfenidone (46%) or nintedanib (28%), whereas the EU pulmonologists treated 28% with pirfenidone and anticipated treating 20% with nintedanib. These findings suggest treatment with pirfenidone and nintedanib based on disease severity may vary between US and EU physicians, which may affect patient outcomes.

Background Cervical cancer treatment and care remains limited in Zimbabwe despite the growing burden of the disease among women. This study was aimed at investigating strategies to address barriers in accessing treatment and care by women with cervical cancer in Harare, Zimbabwe. Methods A qualitative inquiry was conducted to generate evidence for this study. Eighty-four (84) participants were purposively selected for interviews and participation in focus group discussions. The participants were selected from cervical cancer patients, caregivers of cervical cancer patients, health workers involved in the care of cervical cancer patients as well as relevant policy makers in the Ministry of Health and Child Care. Participants were selected in such as a way as to ensure different of characteristics to obtain diverse perspectives about the issues under study. Discussion and interview guides were used as data collection tools and discussions/interviews were audio-recorded, transcribed and translated into English. Inductive thematic analysis was conducted using Dedoose software. Results Salient sub-themes that emerged in the study at the individual patient level were: provision of free or subsidized services, provision of transport to treating health facilities and provision of accommodation to patients undergoing treatment. At the societal level, the sub-themes were: strengthening of health education in communities and training of health workers and community engagement. Salient sub-themes from the national health system level were: establishment of more screening and treatment health facilities, increasing the capacities of existing facilities, decentralization of some services, building of multidisciplinary teams of health workers, development and rolling out of standardized guidelines and reformation of Acquired Immunodeficiency Virus (AIDS) levy into a fund that would finance priority disease areas. Conclusion This study revealed some noteworthy strategies to improve access to cervical cancer treatment and care in low-income settings. Improved domestic investments in health systems and reforming health policies underpinned on strong political are recommended.

BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian Region, little is known about physician knowledge and perspectives on palliative care. METHODS: The "Assessing Doctors' Attitudes on Palliative Treatment" (ADAPT) survey was developed as an evidence-based and culturally-relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. Statistical analysis was complemented by qualitative analysis of open-ended responses. RESULTS: We received 424 responses from 11 countries in Eurasia. Mean alignment between provider perspectives and WHO recommendations was 70% (range 7%−100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident delivering at least one component of palliative care. CONCLUSION: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions which must be tailored to the local political, economic, and cultural context.

Although antiretroviral therapy has reduced mortality among people with HIV, inadequate treatment coverage, ageing, and the increasing incidence of organ failure and malignancies mean that high-quality care should include care at the end of life. This Review summarises the epidemiology of HIV in relation to mortality, and the symptoms and concerns of people with AIDS and those living with HIV who have either related or unrelated advanced comorbidities. In response to the evidence of a need for palliative care, the principles and practice of palliative care are described, and the evidence for its effectiveness and cost-effectiveness is appraised. The core practices of palliative care offer a mechanism to enhance the person-centred nature of HIV care; I identify the gaps in this type of care, and present evidence for effective models of care to address these. I detail the policies that prompt governments and health systems to respond to the palliative care needs of their population. Finally, I conclude this Review with evidence-based recommendations to improve the delivery of, and access to, high-quality HIV care until the end of life, reducing unnecessary suffering while optimising person-centred outcomes.

Age-related macular degeneration (AMD) is the leading cause of blindness in the Western world. With an ageing population, it is anticipated that the number of AMD cases will increase dramatically, making a solution to this debilitating disease an urgent requirement for the socioeconomic future of the European Union and worldwide. The present paper reviews the limitations of the current therapies as well as the socioeconomic impact of the AMD. There is currently no cure available for AMD, and even palliative treatments are rare. Treatment options show several side effects, are of high cost, and only treat the consequence, not the cause of the pathology. For that reason, many options involving cell therapy mainly based on retinal and iris pigment epithelium cells as well as stem cells are being tested. Moreover, tissue engineering strategies to design and manufacture scaffolds to mimic Bruch's membrane are very diverse and under investigation. Both alternative therapies are aimed to prevent and/or cure AMD and are reviewed herein.

Age-related macular degeneration (AMD) is the leading cause of blindness in the Western world. With an ageing population, it is anticipated that the number of AMD cases will increase dramatically, making a solution to this debilitating disease an urgent requirement for the socioeconomic future of the European Union and worldwide. The present paper reviews the limitations of the current therapies as well as the socioeconomic impact of the AMD. There is currently no cure available for AMD, and even palliative treatments are rare. Treatment options show several side effects, are of high cost, and only treat the consequence, not the cause of the pathology. For that reason, many options involving cell therapy mainly based on retinal and iris pigment epithelium cells as well as stem cells are being tested. Moreover, tissue engineering strategies to design and manufacture scaffolds to mimic Bruch's membrane are very diverse and under investigation. Both alternative therapies are aimed to prevent and/or cure AMD and are reviewed herein.

Age-related macular degeneration (AMD) is the leading cause of blindness in the Western world. With an ageing population, it is anticipated that the number of AMD cases will increase dramatically, making a solution to this debilitating disease an urgent requirement for the socioeconomic future of the European Union and worldwide. The present paper reviews the limitations of the current therapies as well as the socioeconomic impact of the AMD. There is currently no cure available for AMD, and even palliative treatments are rare. Treatment options show several side effects, are of high cost, and only treat the consequence, not the cause of the pathology. For that reason, many options involving cell therapy mainly based on retinal and iris pigment epithelium cells as well as stem cells are being tested. Moreover, tissue engineering strategies to design and manufacture scaffolds to mimic Bruch's membrane are very diverse and under investigation. Both alternative therapies are aimed to prevent and/or cure AMD and are reviewed herein.