Article
Public, Environmental & Occupational Health
Annelieke Driessen, Erica Borgstrom, Simon Cohn
Summary: In recent years, policies have encouraged patients to choose their place of death, with a focus on dying at home. However, there is a tendency to simplify the concept of preferred place of death as a static geographical location, overlooking the continuous efforts of palliative care teams to create suitable environments for the dying process.
SOCIAL SCIENCE & MEDICINE
(2021)
Article
Ethics
Victoire Haardt, Amelie Cambriel, Sidonie Hubert, Marc Tran, Cedric Bruel, Francois Philippart
Summary: This study found that GP residents expressed dissatisfaction with end-of-life care, mainly due to lack of knowledge about specific treatments, communication issues, and lack of mentorship. These concerns had consequences on their personal lives.
BMC MEDICAL ETHICS
(2022)
Article
Multidisciplinary Sciences
Maria Roura, Joseph W. LeMaster, Ailish Hannigan, Anna Papyan, Sharon McCarthy, Diane Nurse, Nazmy Villarroel, Anne MacFarlane
Summary: The use of ethnic identifiers in health systems is recommended in several European countries, but there are concerns about privacy, social control, and data protection issues. Both GP users and doctors in Irish general practices have doubts about the benefits of collecting ethnicity data and are worried about potential harm. Therefore, implementing an ethnicity identifier in Irish general practices will require a strong rationale and specific measures to ensure its benefits outweigh any potential harm, in accordance with the EU GDPR.
Article
Public, Environmental & Occupational Health
Jetty A. Overbeek, Karin M. A. Swart, Eline Houben, Fernie J. A. Penning-van Beest, Ron M. C. Herings
Summary: This study aimed to assess the completeness and representativeness of the PHARMO GP data for the Dutch population. The findings showed that the PHARMO GP data were representative of the Dutch population in terms of demographic characteristics and diagnoses, but differences were observed in non-urbanized areas and medication use. Therefore, caution should be exercised when using this data for research purposes.
CLINICAL EPIDEMIOLOGY
(2023)
Article
Public, Environmental & Occupational Health
Aileen Collier, Alex Broom
Summary: This study critically examines the considerations of space, place, and affect in relation to dying at the end of life using data from two qualitative Australian data sets. By challenging traditional views on specific locations for dying, the research focuses on the meanings of space and place rooted in normative expectations, developing a critical social science perspective on the intersections of space and place at the end of life.
SOCIAL SCIENCE & MEDICINE
(2021)
Article
Public, Environmental & Occupational Health
Kuai In Tam, Sok Leng Che, Mingxia Zhu, Sok Man Leong
Summary: This study explored the preferred place of care and death for Chinese residents in Macao. The majority of respondents preferred to be cared for at home in the last 6 months, but only a small proportion preferred to die at home. A significant number of respondents chose hospices or hospitals as their preferred place of death. The study suggests the need for palliative home care services in Macao and emphasizes the importance of education for healthcare professionals.
FRONTIERS IN PUBLIC HEALTH
(2023)
Article
Health Care Sciences & Services
Fur-Hsing Wen, Wen-Chi Chou, Ming-Mo Hou, Po-Jung Su, Wen-Chi Shen, Jen-Shi Chen, Wen-Cheng Chang, Mei Huang Hsu, Siew Tzuh Tang
Summary: This study examines the associations between caregivers' cognitive and emotional preparedness for the death of their relatives and caregiving outcomes and end-of-life care received by cancer patients. The findings suggest that caregivers' death-preparedness states are linked to subjective caregiving burden, depressive symptoms, quality of life, and end-of-life care for patients. Cultivating caregivers' accurate prognostic awareness and improving their emotional preparedness may lead to more favorable end-of-life caregiving outcomes and limit potentially nonbeneficial care.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Oncology
Armin Fereidouni, Mahmood Salesi, Maryam Rassouli, Fariba Hosseinzadegan, Mohammad Javid, Maryam Karami, Maryam Elahikhah, Salman Barasteh
Summary: The purpose of this study was to determine the preferred place of end-of-life care and death in cancer patients in Iran. The majority of cancer patients chose their homes as the preferred location for end-of-life care and final disposition. Researchers recommend strengthening the home care system to meet the needs of patients near the end of life.
FRONTIERS IN ONCOLOGY
(2022)
Article
Geriatrics & Gerontology
Zhong Li, Ziqin Ding, Panpan Zhao
Summary: This study examines the differences in functional disability, place of death, and end-of-life medical expenditures between centenarians and non-centenarians in China. The results show that centenarians have higher rates of full and partial dependence in activities of daily living compared to other elderly individuals. They are also less likely to die in hospitals. These findings highlight the need for policy efforts to improve long-term and end-of-life care for the oldest-old population in China.
Article
Health Care Sciences & Services
Filippo Binda, Marco Clari, Gabriella Nicolo, Simone Gambazza, Barbara Sappa, Paola Bosco, Dario Laquintana
Summary: Although access to national palliative care programs has improved in the last decade, a large proportion of patients still die in hospitals, particularly in internal medicine wards. A study in Italy examined treatments, symptoms, and clinical management of adult patients at the end of life, finding that few treatments were associated with the expectation of death. Nurses perceived quality of dying as good when death was moderately or highly expected, while physicians rated it similarly but with a fair agreement between the two professionals. Only two patients requested palliative care consultation, suggesting inadequate care for dying patients in medical and surgical wards.
BMC PALLIATIVE CARE
(2021)
Article
Health Care Sciences & Services
Kyoko Hanari, Sandra Y. Moody, Takehiro Sugiyama, Nanako Tamiya
Summary: This study aims to investigate whether the preferred place of end-of-life care differs by the assumed clinical scenario. The results show that the preferred place of end-of-life care differed based on different clinical scenarios of cancer, end-stage heart disease, and dementia. Concrete information about diseases and their status should be provided during discussions about preferred place for end-of-life care to reveal people's preferences more accurately.
Article
Oncology
Jennifer W. Mack, Colin Cernik, Hajime Uno, Lanfang Xu, Cecile A. Laurent, Lauren Fisher, Nancy Cannizzaro, Julie Munneke, Robert M. Cooper, Joshua R. Lakin, Corey M. Schwartz, Mallory Casperson, Andrea Altschuler, Lori Wiener, Lawrence Kushi, Chun R. Chao
Summary: This study aimed to characterize the prevalence and timing of conversations about goals of care and advance care planning among adolescents and young adults (AYAs) with cancer at the end of life, and to analyze the relationship between such conversations and end-of-life care measures.
JOURNAL OF CLINICAL ONCOLOGY
(2023)
Article
Health Care Sciences & Services
Danai Papadatou, Vasiliki Kalliani, Eleni Karakosta, Panagiota Liakopoulou, Myra Bluebond-Langner
Summary: The study found that parents make decisions about end-of-life care and death for their child through consensus, accommodation, imposition of professional decisions, or imposition of parents' decisions. Factors influencing these decisions include awareness of dying, parental caregiving competence, professional competence, views on symptom management, timing of decision-making, and the desire to be seen as a 'good parent'. Supporting parents in decision-making includes providing clear and honest information, recognizing their understanding of being 'good parents', and offering opportunities to enhance their caregiving skills.
PALLIATIVE MEDICINE
(2021)
Article
Public, Environmental & Occupational Health
R. Wilson, F. Gaughran, T. Whitburn, I. J. Higginson, W. Gao
Summary: The study revealed that patients with serious mental disorders are more likely to utilize acute care services and die in the hospital at the end of life. Patients with more comorbidities tend to receive more end-of-life care and have a higher rate of hospital deaths.
Article
Clinical Neurology
Remko M. van Eenennaam, Willeke Kruithof, Anita Beelen, Leonhard A. Bakker, Ruben P. A. van Eijk, Maud Maessen, Joost F. Baardman, Johanna M. A. Visser-Meily, Jan H. Veldink, Leonard H. van den Berg
Summary: This study aimed to investigate whether the frequency of euthanasia in patients with amyotrophic lateral sclerosis had increased since 2002 and to assess factors associated with end-of-life practices and the quality of end-of-life care. The study found that 25% of reported deaths from amyotrophic lateral sclerosis between 2012 and 2020 were euthanasia or physician-assisted suicide. The frequency of euthanasia in patients with amyotrophic lateral sclerosis was higher in 2014-2016 compared to previous years, and it was not associated with disease or patient characteristics, depression or hopelessness, or the availability or quality of end-of-life care. Euthanasia had no effect on overall survival.
Article
Nursing
Charlotte Boven, Liesbeth Van Humbeeck, Lieve van den Block, Ruth Piers, Nele Van Den Noortgate, Let Dillen
Summary: This study investigates the experiences of healthcare providers in the interaction with and provision of bereavement care to relatives during and after euthanasia. The findings show that healthcare providers strive to create a serene atmosphere throughout the euthanasia process to help relatives cope with their loss.
INTERNATIONAL JOURNAL OF NURSING STUDIES
(2023)
Article
Psychiatry
Wei Qi Koh, Tijs Vandemeulebroucke, Chris Gastmans, Rose Miranda, Lieve van den Block
Summary: Pet robots are being increasingly used to improve the wellbeing of people with dementia, but their implementation in nursing homes raises ethical debates. Care professionals and organisational leaders have different ethical intuitions regarding the use of pet robots. Future research should involve care practitioners, people with dementia, and their family members in the ethical dialogue to support the sustainable and ethical use of pet robots.
FRONTIERS IN PSYCHIATRY
(2023)
Editorial Material
Health Care Sciences & Services
Aline De Vleminck, Lieve van den Block
PALLIATIVE MEDICINE
(2023)
Article
Geriatrics & Gerontology
Romy Van Rickstal, Aline De Vleminck, Sebastiaan Engelborghs, Lieve van den Block
Summary: Despite the importance of advance care planning (ACP) for people with dementia, its uptake in this population is low. This study investigates physicians' experiences and perspectives on discussing ACP with people with young- and/or late-onset dementia. Five online focus groups were conducted with physicians from different specialisms, and results show that physicians acknowledge the value of ACP but face challenges in implementation.
FRONTIERS IN AGING NEUROSCIENCE
(2023)
Article
Nursing
Pierre-Alain Charmillot, Lieve Van den Block, Mariska Oosterveld-Vlug, Sophie Pautex
Summary: This study examined the perceptions of healthcare professionals after implementing the PACE Steps to Success program in the French-speaking part of Switzerland. Through qualitative descriptive study methods, thematic analysis was conducted on semi-structured face-to-face and group interviews with health professionals, PACE coordinators, and managers in four long-term home facilities. The results showed that the PACE program implementation improved communication with residents regarding end-of-life issues and helped identify patients' needs. Additionally, the introduction of codified tools supported decision-making and promoted inter-professional collaboration.
Article
Health Care Sciences & Services
Fanny Monnet, Charles Dupont, Tinne Smets, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block, Lara Pivodic
Summary: This paper presents a study protocol for the development and usability testing of an advance care planning (ACP) website designed for people with dementia and their families. The study aims to develop an ACP website in a user-centered manner, with the involvement of patients and the public. The results of the study will be used to refine the design and conduct a larger evaluation study.
JMIR RESEARCH PROTOCOLS
(2023)
Meeting Abstract
Primary Health Care
Hakki Demirkapu, Lieve Van de Block, Stephanie De Maesschalck, Aline De Vleminck, Fatma Zehra Colak, Dirk Devroey
BRITISH JOURNAL OF GENERAL PRACTICE
(2023)
Meeting Abstract
Primary Health Care
Hakki Demirkapu, Redouan Hajji, Brahim Chater, Stephanie De Maesschalck, Lieve Van de Block, Aline De Vleminck, Dirk Devroey
BRITISH JOURNAL OF GENERAL PRACTICE
(2023)
Article
Public, Environmental & Occupational Health
Romy Van Rickstal, Aline De Vleminck, Kenneth Chambaere, Lieve Van den Block
Summary: Research showed that people with young-onset dementia and their family caregivers often discuss the topic of euthanasia when talking about advance care planning. Their considerations for euthanasia are usually related to the impact of disease progression on themselves and their loved ones. Caregivers also discuss the emotional impact of discussing euthanasia and share their opinions on euthanasia laws.
PATIENT EDUCATION AND COUNSELING
(2023)
Article
Public, Environmental & Occupational Health
Hakki Demirkapu, Redouan Hajji, Brahim Chater, Stephanie De Maesschalck, Lieve Van den Block, Aline De Vleminck, Dirk Devroey
Summary: This study aimed to explore ACP-related knowledge, experience, views, facilitators and barriers among older Moroccan adults in Belgium. The 25 interviewees lacked ACP knowledge initially, but became more willing to discuss it after receiving concrete information. Barriers included lack of knowledge, fear of talking about death, and trust in children's decision-making ability. Facilitators included GPs' information provision and involvement of adult children.
PATIENT EDUCATION AND COUNSELING
(2023)
Article
Primary Health Care
Hakki Demirkapu, Lieve van den Block, Stephanie De Maesschalck, Aline De Vleminck, F. Zehra Colak, Dirk Devroey
Summary: There is a lack of knowledge and engagement in advance care planning among older Turkish-origin adults in Belgium requiring palliative care. This lack of engagement is linked to their family dynamics and religious beliefs.
EUROPEAN JOURNAL OF GENERAL PRACTICE
(2023)
Article
Public, Environmental & Occupational Health
Charlotte Boven, Let Dillen, Sigrid Dierickx, Lieve Van den Block, Ruth Piers, Nele Van Den Noortgate, Liesbeth Van Humbeeck
Summary: This study provides insight into the experiences of bereaved relatives in euthanasia processes and their interactions with healthcare providers. The study found that relatives wanted to be involved early on and appreciated support from healthcare providers. Achieving peace and maintaining a serene atmosphere were important for relatives' grief process.
QUALITATIVE HEALTH RESEARCH
(2023)
Article
Health Care Sciences & Services
Charless Dupont, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block, Tinne Smets
Summary: This article introduces the development and evaluation of a web-based advance care planning (ACP) tool for people with dementia and their families. The study uses innovative methods to involve people with dementia in the research without overburdening them. The combination of interviews, surveys, and ongoing data logging provides valuable insights into the use of support tools in daily contexts.
Article
Clinical Neurology
Jenny T. van der Steen, Miharu Nakanishi, Lieve van den Block, Paola Di Giulio, Silvia Gonella, Juergen In Der Schmitten, Rebecca L. Sudore, Karen Harrison Dening, Deborah Parker, Ninoslav Mimica, Iva Holmerova, Philip Larkin, Sandra Martins Pereira, Judith A. C. Rietjens, Ida J. Korfage
Summary: This study aimed to conceptualize advance care planning for dementia through a Delphi study, focusing on defining the concept and identifying key issues such as capacity, family, and engagement. The results highlighted the importance of communication and relationship-centered approach for ACP in dementia.
ALZHEIMERS & DEMENTIA
(2023)
Article
Medical Informatics
Charless Dupont, Tinne Smets, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Lieve van den Block
Summary: This study aims to develop an interactive website for individuals with dementia and their family caregivers to support them in advance care planning (ACP), and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals.
BMC MEDICAL INFORMATICS AND DECISION MAKING
(2023)