Palliative Care and Social Practice最新文献

Background: The majority of deaths from chronic obstructive pulmonary disease (COPD) occur in low- and middle-income countries. Primary palliative care is commonly proposed as the best model to ensure access to appropriate care. However, the existing evidence on needs, models and outcomes comes from high-income settings. The purpose of the study was to determine the experiences of adults with COPD attending primary care, their informal caregivers and healthcare professionals to identify current care provided and gaps in this care in primary care settings in South Africa.

Methods: Cross-sectional qualitative interview study collected in-depth data from three stakeholder groups: adults with COPD attending one of five primary care settings, informal carers of patients and healthcare professionals. The cross-national research team developed a coding frame through inductive thematic analysis.

Results: The study participants comprised 22 COPD patients, 19 family caregivers and 22 healthcare professionals. Four main themes emerged. (1) Importance of communication to quality primary palliative care, with poor health literacy regarding the diagnosis and its progression. (2) Symptoms and concerns among patients and caregivers, with multidimensional impact on social participation, poverty and family mental health. (3) The role of health systems in promoting quality primary palliative care, with unreliable drug supply, the need for rapid access pathways during exacerbations and continuity of care from the acute sector through primary care into the home. (4) Patient preferences and agency, with patients favouring holistic assessment, self-management and adequate information and consultation to participate in decision-making.

Discussion: Palliative care health literacy for COPD patients, families and staff attending primary settings may ensure well-planned continuous care, symptom management and support care at home.

Background: Adolescence is a period of significant physical, psychological, and social changes, which can be intensified by the diagnosis of serious or chronic illnesses. This makes promoting autonomy in palliative care particularly challenging.

Aim: The present review aimed to identify factors and strategies that promote the autonomy of adolescents in palliative care.

Design: We conducted a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, searching PubMed, Web of Science, and Scopus. This systematic review synthesized existing literature and evidence regarding communication, involvement, and psychosocial support strategies in adolescent palliative care.

Methods: The study examined various tools and models, including Voicing My Choices, Building Our Solutions Together for Pediatric Advance Care Planning (BOOST-pACP), and the Family-Centered Advance Care Planning (FACE) model, to evaluate their effectiveness in facilitating communication, family support, and decision-making.

Results: Effective communication tools and family-centered approaches are crucial for promoting adolescent autonomy. Strategies focused on open communication, psychosocial support, and active adolescent involvement in decisions can enhance autonomy, although further research is needed to assess their effectiveness.

Conclusion: Implementing communication facilitation, psychosocial support, and adolescent involvement strategies is essential. Despite the need for more evidence, the review offers a set of recommendations to support the autonomy of adolescents in palliative care.

[This corrects the article DOI: 10.1177/26323524251366788.].

Goals of care (GOC) discussions and advance care planning (ACP) emphasize patient's autonomy and dignity in healthcare delivery. These discussions become crucial as individuals approach the terminal phase of their illness, enabling them to make informed decisions about their end-of-life care (EOLC). Globally, there is a rising trend in discussions related to GOC, especially among those with serious or chronic conditions. In Asian countries, including Nepal, cultural factors, family dynamics, and limited awareness among healthcare professionals hinder ACP implementation. Nepal faces challenges in healthcare accessibility, with a significant portion of healthcare expenditure directed toward the elderly population. Palliative care medicine has made some progress in Nepal, despite the scarcity of its resources. Cultural influences contribute to healthcare providers' and patients' unawareness and limited proactive involvement in end-of-life decision-making. The integration of GOC discussions in Nepal's healthcare system is imperative to ensure access to basic palliative care resources in both rural and urban areas. Efforts should focus on addressing challenges in palliative care and promoting understanding of GOC concepts with clear documentation, comprehensive EOLC plans, and increased awareness among both healthcare providers and the public. Implementing a centralized record system can enhance nationwide access to GOC information, contributing to a patient-centered healthcare system.

Background: Studies have highlighted a perceived lack of information concerning end-of-life (EoL) decisions and discrepancies in communication between physicians and cancer patients, despite the fact that sharing these dimensions remains central to the therapeutic process.

Objective: We aimed to investigate healthcare professionals' disclosure of information on EoL, considering the perspectives of professionals and patients and relatives, and the professional factors that may affect communication.

Design: The descriptive, mono-centric study E.L.D.Y.-CA.RE. (End of Life Decisions study - CAregivers RElatives) was conducted in 2018 at the Veneto Institute of Oncology in Padua, Italy.

Methods: Three different questionnaires were created for professionals, patients, and caregivers to investigate EoL decisions, opinions, psychological reactions, and quality of communication. Descriptive analysis and logistic regression were carried out, in order to corroborate the data.

Results: A total of 425 questionnaires were completed by 136 healthcare professionals, 171 patients, and 118 relatives. Some subjects were frequently discussed: diagnosis and purpose of medical treatment (89%) or possible complications (92%); less frequently discussed subjects were life expectancy (22%), existential and spiritual dimensions (11%), withholding/withdrawing life-sustaining treatment (11%), and the option of hastening death (3%). Discrepancies emerged especially regarding palliative options, care delivery problems, emotional/psychological, and social problems. Up to 55% of patients did not answer questions because they believed they were not relevant to their health and a consistent proportion of professionals still felt inadequate in communicating bad news and in confronting with terminally ill patients. As emerged from logistic regression models, role, gender, age, and previous training of healthcare professionals, as well as strength of their own and the patients' beliefs, significantly influenced the subjects discussed.

Conclusion: The perceptions of EoL communication in physician-patient and physician-relative relationships reveal ongoing problems in terms of sensitive and psychological issues, which are often experienced differently. At the same time, the management of terminally ill patients has an emotional impact on medical professionals and affects how they view death. Increased attention to palliative care and training in both communication and bioethics may help to improve professional communication skills and make healthcare professionals better prepared to manage the final stages of a patient's life and personal reactions to death.

Background: Palliative care should be delivered alongside surgical care for adults with serious illness. Yet, most do not routinely integrate palliative principles in their surgical practices.

Objectives: This study aims to examine barriers to integration of palliative care in surgery using a socio-ecological framework.

Design: A qualitative study using semi-structured, video-based interviews was conducted.

Methods: Qualitative interviews were conducted between April and July 2023 in a tertiary academic center in Singapore. Surgeons were purposively sampled across various surgical subspecialty teams. The interview guide was informed by the socio-ecological model (SEM), exploring individual, interpersonal, community, organizational, and policy level barriers to surgical palliative care, that is, the integration of palliative care principles in surgical care. Reflexive thematic analysis was used to analyze the data.

Results: Fourteen surgeons (50% male, with an average of 12 years of practice) participated in this study. Three themes were constructed, based on the SEM framework. At the individual level, inadequate palliative care training and a misalignment between the surgeon's professional identity and their understanding of palliative care impede the delivery of surgical palliative care. At the interpersonal and community level, poor intra- and inter-teamwork act as barriers. At the organizational and policy level, subspecialization, lack of incentives, and organizational support further inhibit the practice of surgical palliative care.

Conclusion: Barriers to the integration of palliative care in surgery exist at multiple levels of the SEM. Our findings highlight opportunities for targeted interventions to improve the delivery of palliative care for adults with serious illness in surgery.

Background: The first palliative day care program (PDCP) marks its 50th anniversary.

Aim: This study examined the distinctive features of PDCPs that have endured, as well as the changes they have undergone in the United Kingdom and Canada, to identify avenues for the development of these programs.

Methods: Using primary data from two qualitative studies, conducted in the United Kingdom and Canada, a thematic meta-synthesis was carried out using the expansive secondary analysis approach to identify similarities and distinctions between the PDCPs identified in the two original studies.

Results: The results were drawn from group and individual interviews with 19 participants in Canada, including 13 professionals and 6 managers across 6 PDCPs, and 35 participants in the United Kingdom, including 16 professionals and 18 managers from 3 PDCPs. The results indicate that the administrative structure of the PDCPs, the adoption of a palliative care philosophy, and the multidisciplinary nature of the professional and volunteer teams are the components of the programs that have endured. However, patient characteristics, care models, and institutionalization are constantly evolving.

Conclusions: As PDCPs continuously innovate to adapt to the needs of their patients, the evolution of their components is desirable. However, pressure to demonstrate the relevance of their services to justify financial resources could, while ensuring their sustainability, deprive them of the values and practices that are their most valuable asset and purpose: supporting people living with advanced diseases with palliative care while still remaining in their own homes.