Definition Of Palliative Care Research Articles

LOWER SOCIOECONOMIC STATUS PREDICTS NEGATIVE PREFERENCES FOR PALLIATIVE CARE

Abstract With an aging US population, more people than ever live with serious illnesses. Although palliative care (PC) can improve outcomes in serious illness, there are inequities in PC utilization. People with low socioeconomic status (SES), men, and Black and Hispanic people are less likely to receive and benefit from PC services. Despite these established demographic differences in PC utilization, there is a dearth of relevant survey research on preferences for PC in the general population. To address this gap, we surveyed a random sample of 1,500 NJ adults. Respondents were given a brief definition of PC and asked to indicate how likely they would be to schedule, attend, and routinely attend PC visit(s) if they were diagnosed with a serious illness. Predictors included in logistic regression modeling were SES indicators (income, educational attainment, insurance status, employment status), gender, and race/ethnicity. Data were weighted to be representative of the population of NJ. Modeling results revealed that lower income and lower educational attainment were associated with significantly lower odds of endorsing willingness to schedule, attend, and routinely attend PC visits in the event that one would become seriously ill. Unexpectedly, there were no gender or race/ethnicity differences in preferences for PC. These findings highlight the importance of public health education for what PC is and its benefits for an aging population, especially among those with lower SES. Future research efforts are needed to understand discrepancies in reported PC preferences versus real-world PC utilization for men and Black and Hispanic individuals.

Navigating Compassion: A Comprehensive Review of Palliative Care in Respiratory Medicine.

Palliative care has emerged as a crucial aspect of comprehensive healthcare, particularly in respiratory medicine. This review navigates the intricate landscape of palliative care in the context of respiratory diseases, including chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis (IPF), and lung cancer. The exploration begins with a comprehensive examination of palliative care's definition, significance, and purpose in respiratory medicine. It progresses to understanding common respiratory diseases, their impact on patients' quality of life, and the nuances of disease progression and prognosis. Delving into the principles of palliative care, the review highlights the importance of a patient- and family-centered approach, emphasizing the multidisciplinary collaboration required for holistic care. Symptom management takes center stage, with a detailed exploration of dyspnea, cough, and pain, covering pharmacological and non-pharmacological interventions. The psychosocial and spiritual dimensions are then unveiled, recognizing the psychological impact of respiratory diseases and the significance of addressing spiritual needs with cultural sensitivity. Communication in palliative care is explored through breaking lousy news, advance care planning, and shared decision-making. The section acknowledges the complex considerations surrounding end-of-life care, including recognizing the end-of-life phase, establishing care goals, and withdrawing life-sustaining therapies. Recognizing the indispensable role of caregivers, the review underscores the importance of caregiver support. It delineates strategies for providing emotional and practical support alongside a crucial focus on self-care for caregivers who shoulder the responsibilities of providing palliative care. As the exploration concludes, the challenges in implementing palliative care in respiratory medicine are outlined, from late referrals to communication barriers. However, the review also envisions a future marked by innovation, with emerging approaches, such as telehealth and personalized medicine, offering promising avenues for improvement. Research gaps and areas for improvement are identified, emphasizing the need for a collaborative effort to enhance the quality of palliative care for individuals facing respiratory diseases. The review culminates in a call to action, urging early palliative care integration, investment in education and training, research initiatives, advocacy for accessible services, and collaboration across disciplines. By heeding this call, healthcare providers, researchers, and policymakers can collectively contribute to the evolution and enhancement of palliative care in the challenging landscape of respiratory medicine.

Palliative Care for the Elderly With Heart Diseases in Tertiary Health care: A Concept Analysis.

The increasing incidence of heart failure (HF) in the elderly leads to increased mortality, hospitalization, length of hospital stay, and health care costs. Older adults often face multiple drug treatments, comorbidities, frailty, and cognitive problems, which require early palliative care. However, these patients do not receive adequate palliative care. This concept analysis aimed to develop an in-depth understanding of palliative care for elderly patients with cardiac diseases in tertiary care. The analysis was guided by Walker and Avant's method, and databases were searched using keywords, such as palliative care, tertiary care, elderly, and heart. Covidence was used to review the results using the inclusion and exclusion criteria. The World Health Organisation's definition of palliative care is widely accepted. Palliative care for older adults with heart disease in tertiary care is preceded by chronic illness, polypharmacy, symptom burden, physical and cognitive decline, comorbidities, and psychosocial/spiritual issues. The main attributes of palliative care for this population include health care professionals and patient education, holistic patient/family-centered care, symptom management, shared decision-making, early integration, advanced care planning, and a multidisciplinary approach. Palliative care improves elderly cardiac patients' and their family satisfaction while reducing readmission, hospital stays, and unnecessary invasive procedures. Collaboration between hospitals, community organizations, transitional palliative care services, and research has the potential to improve early palliative care and the well-being of the elderly cardiac population. Advanced Practice Nurses (APNs) competencies play a crucial role in promoting palliative care in the elderly HF population.

Do palliative care research priorities match those for its care? A journals content analysis 2021–22

Background Most international definitions of palliative care in the worlds of policy and practice emphasize the ‘holistic’ dimensions of end-of-life experience and its care. Aim To discover whether the definitions of palliative care are reflected in the field’s research priorities. Design and Setting A content analysis of two research journals, one British and the other American, is described to provide a simple indicative answer to this question. The abstracts of 609 research papers drawn from these two journals between the years 2021–22 were examined thematically. Results The categories of physical alone, physical, and psychological, and psychological alone, when combined accounted for 69% of all research reports. The broader social aspects of care, outside of communication and advance care planning, were largely unaddressed. The social domain accounted for 29%, but 78% of this figure was about advance care planning and communication. Likewise, the role of spirituality, present in most of the definitions, was under researched and under reported. Even within this context, the results were disappointing. Spiritual care accounted for only 2% of reports. Conclusion Examination of research publications of two major palliative care research journals showed a significant overemphasis on symptom management and health service delivery assessments. This significant dearth of investigation in the major areas of social and spiritual domains is a call to action for researchers, grant making bodies, researchers, ethics committees, and journal editorial teams.

European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Palliative care in advanced Huntington’s disease: a scoping review

BackgroundAs Huntington’s disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.ObjectiveTo review the literature focusing on palliative care in advanced stage HD, and the level of evidence.MethodsPublications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) – V (low) were determined as defined by the Joanna Briggs Institute.ResultsOur search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).ConclusionsTo deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient’s wishes and needs.

INTEGRATION OF PALLIATIVE CARE INTO MEDICAL SCHOOL CURRICULUM IN NEPAL – An analytical study among medical students in Nepal

Introduction The holistic approach of palliative care aims at improving the life of patients with life-threatening diseases and their families through early identification, assessment, and treatment of physical, psychological, or spiritual pain. Despite the recognition of palliative care as a human right and essential for the improvement of the quality of life of patients – and their families, many low-income countries either lack palliative care services or have limited access to it. The WHO suggests that one of the steps that countries can take to eliminate these barriers is to include palliative care into the core curricula of all new health professionals. A study in 2019 showed that 58,000 adults required palliative care in Nepal in 2012, and most of them lived in rural areas. Palliative care in Nepal is still new and training programs for doctors and nurses are not fully developed and in place in undergraduate medical schools. This study evaluates the working knowledge of palliative care among undergraduate medical students, and the presence of it in their academic curriculum. Methods This analytical study was designed during an internship at the Binaytara Foundation Cancer Center in Nepal. The study was conducted among undergraduate medical students between March 6th, 2020 to July 6th, 2020. The questionnaire results were entered on Microsoft Excel and then analyzed. Results Results showed that 63.2% of the respondents had heard of “Palliative Medicine”, but 68.4% did not know the WHO definition of Palliative Care (Table 2 (135189)). Among all the students from the different universities, 33.3% said that palliative care is part of their curriculum, while 66.6% said it is not (Table 5 (135192)). Conclusions The results from the study demonstrated inadequate knowledge and perception of palliative care among undergraduate medical students in Nepali institutions. The EAPC indications on a palliative care curriculum could be taken as a blueprint for developing a tailored one for medical schools in Nepal to set a strong base for the next generation of doctors to be able to appropriately meet the needs of patients and their families.

Cuidados paliativos em uma metodologia ativa de ensino

Abstract This study evaluates the knowledge about palliative care of medical students in their final years at universities that adopt problem-based learning methodology in Northeast Brazil. It was observed that 78% of the students did not have sufficient information on the care of terminally ill patients, and only 55% knew the World Health Organization’s definition of palliative care. Regarding specific knowledge, students showed an unsatisfactory level of achievement in the domains of dyspnea, psychiatric and gastrointestinal problems; acceptable in the pain domain and excellent in philosophy of palliative care and communication skills. Knowledge regarding pain management, dyspnea and psychiatric problems improved during the internship. Therefore, it was found that students come into contact with the subject but have a significant deficit in issues related to the management of common symptoms in palliative care.

Limits of and Alternatives to Conventional Medicine in the Context of Terminal Illness (e.g., Palliative Care)

This paper aims at analysing the evolution of palliative care in the international context and their role in the path of care for the patient and the family. Method: born in 1967 by Cicely Saunder, palliative care were aimed at assisting the terminally ill, accommodating both the needs of the patient and the family. Not only to be cured or healed, but to be taken care of. The paper examines the definitions of palliative care provided by the World Helth Organization. We observe that palliative care is not only an effective and timely response to the clinical, psychological, social and spiritual needs of the sick person and their family in an advanced and terminal stage, but an integrated care to support specialist treatment in the presence of an advanced disease picture; a space for in-depth study for the sick person and the family so that the sick person can consciously and freely choose the available treatment proposals, their limits and their consequences. A treatment path in which the transparency of the proposals is a condition for building a shared consensus with the patient and adequate communication with the family. Palliative care has acquired its own identity, its own role in the path of care for the patient and the family, pursuing the proportionality of therapeutic options and the support of the patient and the family without discrimination, with equity and equality.

Attitudes toward euthanasia among medical students from different countries

Introduction. This study conducted among medical students from different countries aimed to compare their knowledge of palliative care, euthanasia, and assisted suicide, their attitudes toward euthanasia practice, law, and its legalization, as well as motives behind their ethical choices. Material and methods. The 18-item questionnaire survey was conducted among medical students. Questionnaires were voluntary and anonymous and they were completed within 30 minutes after completion of obligatory 30-hour palliative medicine courses. During theoretical seminars and practical classes, students were provided with basic knowledge on symptom management, and psychological, social, and spiritual support. An ethical approach was presented, in which both euthanasia and assisted suicide were not acceptable. Results. A total of 659 students participated. There were 486 (73.75%) students from Poland and 173 (26.25%) foreign students from Taiwan 54 (8.19%), USA 48 (7.28%), Norway 32 (4.86%), Canada 27 (4.10%), Germany 5 (0.76%), Great Britain 4 (0.61%), and Sweden 3 (0.45%). Students from Poland and other countries did not differ in terms of knowledge of palliative care, but differences emerged regarding knowledge of euthanasia and assisted suicide. Respondents from different countries differed in their responses to all questions regarding legal aspects and euthanasia. The only exception was assisted suicide where no difference was found. Conclusions. A significant percentage of students were unable to provide definitions of palliative care, euthanasia, or assisted suicide. The results suggest differences in the attitudes toward euthanasia between students originating from different continents. Culture, religious affiliation, and gender might be factors influencing these results.

Public interest in medical assistance in dying and palliative care

ObjectivesMedical assistance in dying (MAiD) is legal in an increasing number of countries, but there are concerns that its availability may compromise access to palliative care. We assessed public interest...

Evaluation of Medical Students' Knowledge on Palliative Care: A Single Institution Cross-sectional Study.

BackgroundPalliative care is the branch of medicine which has a target of setting focus on the improvement of the quality of life of patients, particularly toward their end of life, such as cases of terminal diseases with low prognosis. Despite growing recognition of the importance of palliative care, a gap remains in medical education. Our study aims to evaluate the current level of knowledge of medical students in regard to palliative care.MethodsA cross-sectional descriptive study was conducted in Batterjee Medical College, Jeddah, Saudi Arabia, through a period of three months from December 2021 to March 2022.ResultsA total of 254 students participated in our study. Psychosocial and spiritual needs of the patient alongside definition of palliative care were perceived the most important by the students with a mean score of 3.9 each.ConclusionOur study concludes that there is an overall lack of confidence among medical students in providing palliative care. We recommend further enhancement and implementation of palliative care as part of undergraduate mandatory courses.

Stigma about palliative care: origins and solutions.

Despite high-level evidence demonstrating the benefits of integrating palliative care early in the trajectory of advanced cancer, there remains a stigma surrounding this important discipline. This stigma is rooted in the origins of palliative care as care for the dying and is propagated by misinformation and late referrals to palliative care services. Current official definitions of palliative care emphasise the importance of early identification and treatment of symptoms and provision of care concurrently with treatments aimed at improving survival. However, this model of palliative care is neither widely known by patients and their caregivers nor consistently practiced. Herein, we describe changes that are necessary at the levels of practice, policy and public education to shift the status quo. Change requires palliative care teams that are staffed, trained and resourced to accommodate early referrals; education for referring physicians to provide high-quality primary palliative care, as well as timely referral to specialists; and a public health strategy for timely palliative care that educates and engages policymakers, stakeholders and the public. The hospice movement was directed at improving care for the dying; continued expansion of this movement is necessary so that all patients with advanced cancer may benefit from its principles throughout the course of illness.

Nurturing Socioculturally and Medically Appropriate Palliative Care Delivery: Lessons Learned by Israeli Medical Faculty

Israel is one of the few countries worldwide with a national policy and defined standards of palliative care (PC); its culture is highly diverse and more traditionally oriented in comparison with Western countries. This study describes the current state of PC in Israel through examination of: (1) its current status, self-image and structural factors; (2) its relation to cultural and political characteristics; and (3) the chances, goals and obstacles of advancing PC in Israel. Face-to-face interviews were conducted at all five public medical faculties in Israel from November 2017 to February 2018. The following findings are reported: (1) definition of palliative care, (2) multidisciplinary approach, (3) special role of nurses, (4) personal perceptions of death, (5) understanding the role of medicine, (6) specialty palliative medicine, (7) religious, spiritual and cultural aspects, (8) political and economic aspects, (9) obstacles and weaknesses, and (10) prospects and goals of palliative care. Participants perceive PC as an integrative healthcare service that should be available to all patients, including children and their families, at any stage of illness. They internalize that PC principles apply regardless of ethnic, cultural, and religious background. Utilizing nurses’ leadership, enhancing multidisciplinary teamwork, and person-centered approach, supports better PC to more people.

Значення міжнародних визначень, підходів і стандартів для оптимізації надання паліативної допомоги в Україні

Актуальність. Аналіз медико-статистичних даних щодо розвитку медико-демографічної ситуації у світі і в Україні, наукової літератури, нормативно-правових документів України і авторитетних міжнародних організацій свідчить про швидке постаріння населення, поширення захворюваності та смертності від хронічних неінфекційних та інфекційних захворювань, низьку доступність паліативної та хоспісної допомоги (ПХД) для населення в Україні. Мета. На підставі медико-соціального аналізу сучасних міжнародних визначень, підходів і стандартів паліативної допомоги визначити оптимальні моделі надання ПХД в Україні. Матеріали та методи. Під час проведення роботи були використані нормативно-правові документи міжнародних організацій і України, інформаційно-аналітичні матеріали діяльності закладів паліативної та хоспісної медицини, дані галузевої статистики, наукова література. При обробці матеріалів використовувались загальноприйняті методи. Результати. Порівняльний медико-соціальний аналіз вітчизняного законодавства, нормативно-правових документів України та авторитетних міжнародних організацій свідчить, що визначення «паліативна допомога» в українському законодавстві не зовсім відповідає сучасній міжнародній практиці, оскільки відповідно до нормативно-правової бази України, поняття «паліативна допомога» є видом медичної допомоги та застосовується тільки стосовно інкурабельних пацієнтів із прогнозованою (обмеженою) тривалістю життя і членів їх сімей, у той час як Всесвітня організація охорони здоров’я (ВООЗ) визначає паліативну допомогу як підхід, що дозволяє поліпшити якість життя пацієнтів (дітей, дорослих) і їх сімей, які зіштовхнулися з проблемами, пов’язаними із загрозливими для життя захворюваннями. Безумовно, такий підхід значно розширює контингент пацієнтів, збільшує потребу у ПХД. Обґрунтовується мультидисциплінарна та міжсекторальна модель надання паліативної допомоги у стаціонарних і амбулаторних умовах, зокрема вдома, умови створення та впровадження доступної, якісної й ефективної системи паліативної допомоги в Україні. Автори показують важливість і значення розробки стратегії створення та розвитку системи ПХД в Україні, заснованої на міжнародно визнаних визначеннях, а також обговорюють можливі моделі й рівні інтеграції ПХД населенню в практику охорони здоров’я. Висновки. Відповідно до визначення ВООЗ, паліативна допомога є підходом, що надає можливість поліпшити якість життя пацієнтів (дітей, дорослих) і їх сімей, які зіштовхнулися з проблемами, пов’язаними із загрозливим (небезпечним) для життя захворюванням, що значно розширює контингент пацієнтів, збільшує потребу у ПХД. Сьогодні ПХД є сучасним мультидисциплінарним пацієнт-сім’я-орієнтованим підходом, який найбільш адекватно забезпечує потреби та належну якість життя паліативних пацієнтів і членів їх сімей, сприяє забезпеченню прав, збереженню людської гідності тяжкохворих, зокрема інкурабельних пацієнтів з обмеженим прогнозом тривалості життя. Порівняльний аналіз нормативно-правових документів України й авторитетних міжнародних організацій свідчить, що визначення «паліативна допомога» в українському законодавстві не зовсім відповідає сучасній міжнародній практиці, оскільки в Україні паліативна допомога є видом медичної допомоги і застосовується тільки стосовно інкурабельних пацієнтів з обмеженим прогнозом тривалості життя і членів їх сімей. В умовах реформування системи громадської охорони здоров’я в Україні урядовці, політики, фахівці з ПХД, правозахисники, представники громадських організацій повинні взяти на себе відповідальність за створення та впровадження інноваційного підходу — доступної, якісної та ефективної системи ПХД населенню, що вимагає удосконалення, оптимізації нормативно-правових документів відповідно до міжнародних підходів та стандартів. Служба ПХД, яка базується на міжнародних стандартах і підходах, повинна стати невід’ємною інтегрованою складовою системи охорони здоров’я та соціального захисту населення України, що буде свідченням європейського вибору нашої держави.

Palliative Care: A Concept Analysis

Objective: Palliative care is a defined medical specialty, and it is focused on helping patients and families who are facing serious illness achieve the best possible quality of life. Despite the extensive literature available about palliative care, it still has imprecise due to its involvement in different specialties and disciplines of healthcare. Therefore, it is crucial to clarify what is meant by palliative care and defines its defining attributes, antecedents and consequences. Method: This study adopted Walker and Avant’s concept analysis approach for analyzing palliative care concept. A thorough literature search was performed in PubMed, CINAHL and Embase databases during the period (1970-2021). A total of 17 articles were reviewed and used to achieve the study objective. Result: After reviewing the screened articles, the study formulated a definition of palliative care as the meaningful and intentional holistic care of patients suffering from terminal illnesses caused by acknowledging and minimize symptoms that would deter the patients’ quality of life while achieving patient dignity by utilizing compassion and support. The study revealed that the defining attributes of palliative care include Holistic, compassion, support, individualized, realistic care. Conclusion: Palliative care was identified as holistic, compassion, supportive and individualized realistic care provided for patients suffering serious illness in order to achieve the desired level of quality of life.

Palliative and Hospice Social Work Roles in the U.S.

Palliative care services worldwide continue to grow, primarily in response to a human rights approach and to respond to the aging of the population, increasing prevalence of chronic illnesses and cancer mortality. While there is recognition in the WHO definition of palliative care that not only physical, but also psychological, social and spiritual aspects of care must be part of services provided, how these are addressed varies greatly by country and region of the world.In the U.S., social work services are mandated to be provided by hospice organizations seeking funding from Medicare (governmental insurance for people over age 65) and supports the tenets of the palliative care philosophy to provide person-centered holistic care. The role of palliative and hospice social workers is highly aligned with the values of the profession centered on the dignity and worth of all humans and the commitment to improving quality of life throughout life and especially at the end of life. Older adults make up the overwhelming majority of hospice recipients in the U.S. and attention to their daily needs and those of the family caregivers is essential to maximize quality of life.This presentation will focus on the roles of social workers in the U.S., particularly with older adults, in various palliative care settings and how this may compare to roles across the globe.

Fear increases likelihood of seeking decisional support from others when making decisions involving ambiguity

AbstractIndividuals often turn to others for decision‐making advice, which has the potential to improve decision‐making outcomes when advice is drawn from a reliable source. Because seeking advice is a kind of information seeking, it is likelier to occur when decisions involve ambiguity or when full information about outcomes is unavailable. We examined whether experimentally induced incidental fear, known to increase information seeking, increased intentions to seek decision‐making advice and whether this effect was stronger for decisions involving ambiguity. In Study 1, fear increased the likelihood of seeking advice about an ambiguous decision in which both options carried some risk, compared to neutral emotion (and anger). In Study 2, a 2 (emotion) by 2 (minimal vs. extensive information) design, fear increased the likelihood of seeking advice about palliative care only after a simple definition of palliative care (minimal information), but not after more comprehensive (extensive) information about its nature, benefits, and efficacy. These findings suggest that incidental fear may encourage people to seek advice about decisions involving ambiguity or when full information to make the decision is not available.

The conscious state of the dying patient: An integrative review.

The cognitive state of the dying in the last days of life may deteriorate, resulting in a reduced ability to communicate their care needs. Distressing symptoms, physical and existential, may go unrecognized and untreated. The objectives of this integrative review were to systematically interrogate the literature to determine the changing conscious state of dying adults and to identify changes in their care needs. An integrative review protocol was registered with PROSPERO (CRD42020160475). The World Health Organization definition of palliative care informed the review. CINAHL, MEDLINE (OVID), Scopus, PsycINFO, Cochrane Library, and PubMed were searched from inception to October 2019 using search strategies for each database. Inclusion and exclusion criteria were applied. Methodological quality was appraised using the Joanna Briggs Institute Checklist for the Case Series appraisal tool. Extracted data were synthesized using a narrative approach. Of 5,136 papers identified, 11 quantitative case series studies were included. Six themes were identified: conscious state and change over time, awareness, pain, absence of holistic care, the voiceless patient, and signs and symptoms of dying. In the last days of life, the physical and conscious state of the dying patient declines, resulting in an inability to express their care needs. Dignity in dying and freedom from pain and suffering are both an imperative and a human right; and unvoiced care needs can result in unnecessary suffering and distress. This review revealed that little is known about how healthcare professionals assess holistic care needs at this vulnerable time. Although much has been written about palliative and end-of-life care, the assessment of care needs when patients are no longer able to voice their own needs has largely been ignored, with little attention from clinical, educational, or research perspectives. This gap in evidence has important implications for the dying and their families.

Using the Delphi technique to achieve consensus on bereavement care in palliative care in Europe: An EAPC White Paper

Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.