Palliative Care and Social Practice最新文献

Background: People with dementia experience a gradual decline in cognitive and physical functioning, which makes the organization of end-of-life care in the right place challenging for them, their caregivers, and healthcare providers.

Objectives: This study aims to understand the challenges of organizing end-of-life care for people with dementia in Latin America.

Design: The study used a qualitative design.

Methods: Two focus groups, one individual interview, and one dyadic interview were conducted with 15 stakeholders from 12 Latin American countries: Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, El Salvador, Guatemala, Mexico, Paraguay, Peru, and Uruguay. Thematic analysis was used to identify patterns within the data.

Results: Although there were differences between and within the countries, end-of-life care was often affected by the socioeconomic contexts, which represent barriers for access to healthcare services; under-tapped informal caregivers' potential; societal norms and cultural expectations around care and informal caregiving; the dementia-trajectory itself; and an inadequate assurance of policies, skilled workforce, and services.

Conclusion: In Latin America, end-of-life care for people with dementia has many challenges for those directly affected, caregivers, and the wider healthcare system. Routes to improvement are needed to ensure that all people with dementia and their families can navigate the end-of-life process with adequate and equitable support.

Background: Compassionate communities are part of an international public health movement aiming to address social determinants of death by fostering supportive environments. Yet, empirical research on community engagement in this field is still limited, particularly the influence of local contexts on engagement patterns.

Objectives: This study aimed to identify effective engagement practices and contextual factors influencing the development and sustainability of compassionate communities.

Research design and method: A comparative ethnographic method was used to examine community engagement processes in two culturally distinct compassionate communities in Montréal (Canada): Centre-Sud and West Island. Data collection included participant observation, semistructured interviews, and logbooks. Informed by developmental evaluation, the analysis was guided by a thematic lens approach and the Ecology of Engagement framework.

Results: Two distinct, context-sensitive paths to community engagement emerged, shaped by the sociocultural realities of each setting. In Centre-Sud, a grassroots, community-led approach focused on shared leadership and building trust fostered a resilient network that achieved sustainability through the creation of an independent nonprofit organization. In contrast, West Island's institutionally led strategy was a pragmatic response to navigate contextual barriers like preexisting community distrust, achieving sustainability by embedding the initiative within the lead organization via a permanent staff role.

Conclusion: This comparative ethnography demonstrates that success is not defined by a single model but by adapting engagement strategies to local dynamics of trust and power. It highlights that while community-led approaches can foster deep ownership, institutionally led strategies can provide a crucial pathway to sustainability in contexts facing systemic barriers. The study offers a practical framework for practitioners and key lessons for developing evidence-based policy to support compassionate communities in diverse settings.

Background: Potentially inappropriate medications (PIMs) pose a significant burden on patients with advanced cancer approaching the end of life. However, trends in the prescription of PIMs and the factors associated with deprescribing PIMs in these patients remain unclear.

Objective: To describe trends in the prescription of PIMs and explore the factors associated with the deprescribing of PIMs in patients with advanced cancer in Japan.

Design: Retrospective cohort study using medical claims data.

Methods: We analyzed patients aged >65 years who were diagnosed with cancer 6 months before death and died between December 2017 and August 2023 in the city of Mito, Ibaraki prefecture, Japan. Sociodemographic, clinical, and prescription data were collected at 6 months (M6), 3 months (M3), and 1 month (M1) before death. PIMs were assessed according to the OncPal Deprescribing Guidelines.

Results: The mean age of 1269 patients was 80.6 years, and 62.2% were male. PIMs were prescribed to 77.0% at M6, 76.4% at M3, and 70.0% at M1 (p < 0.001, M6 to M1). The factors associated with deprescribing at least one PIM from M6 to M1 included female sex, number of medications at M6, number of comorbidities, admission to a palliative care unit, and admission to a general ward.

Conclusion: In patients with advanced cancer, PIM use decreased as they approached death. Deprescribing PIMs was more common in females, patients with polypharmacy and comorbidities, and patients admitted to hospitals, especially palliative care units.

Introduction: The World Health Organization defines palliative care (PC) as an approach aimed at improving the quality of life of patients and families facing life-threatening illness. In developing countries, gaps persist in coverage, late referrals, and limited integration of PC into hospital care, especially for non-oncologic conditions.

Objective: To evaluate the relationship between chronic diseases and the need for PC among hospitalized patients in a hospital in southern Peru.

Methods: Analytical cross-sectional study in a public referral hospital. We included adults ⩾18 years admitted to Internal Medicine, General Surgery, Obstetrics and Gynecology, or the Emergency Department; we excluded pregnant/postpartum patients, those managed exclusively in the ICU/Trauma Shock Unit, urgent surgical cases precluding assessment, and patients with cognitive impairment (Pfeiffer ⩾2). The need for PC was assessed using the SPICT-TM-ES (⩾2 general indicators + ⩾1 clinical indicator). Sociodemographic and clinical variables were collected via interview and chart review. Associations were estimated using Poisson regression with robust variance, reporting adjusted prevalence ratios (aPR) and 95% confidence intervals (95% CI).

Results: We included 150 patients; 67.3% met criteria for PC need. Multimorbidity (⩾2 comorbidities) and ⩾2 hospitalizations in the past year were associated with a higher need for PC. In adjusted models, dementia (aPR = 1.15; 95% CI: 1.05-1.26) and malignancy (aPR = 1.14; 95% CI: 1.05-1.24) were positively associated with PC need, whereas type 2 diabetes mellitus was inversely associated (aPR = 0.85; 95% CI: 0.77-0.93).

Conclusion: The need for PC among hospitalized patients with chronic conditions was high.

Background: Continuous subcutaneous infusions combining several drugs are routinely used in palliative care, particularly for severe pain management. Parenteral administration routes, however, have been found to be prone to errors. According to previous studies, standardising the compositions of parenteral mixtures can improve medication safety.

Objectives: To evaluate the potential for standardisation of parenteral drug mixtures used in palliative and hospice care by identifying the most commonly administered compositions of mixtures containing morphine or oxycodone.

Design: A retrospective medical record review of parenteral drug mixture administrations containing morphine or oxycodone.

Methods: Drug administration records of 120 deceased patients treated in two inpatient units and in the At-home hospital providing palliative and hospice care in the City of Helsinki, Finland, were collected. The data were analysed with descriptive statistics.

Results: The patients (n = 120) received a total of 329 parenteral morphine or oxycodone containing drug mixtures administered as continuous subcutaneous infusions during a 10-month period from 28 April 2022 to 28 February 2023. Altogether, 29 different drug combinations were administered, of which the combinations of haloperidol and midazolam admixed with either morphine or oxycodone were the most prevalent ones (26.4% and 21.9% of all administrations, respectively). Of the 329 administrations, 175 different compositions were identified. In some of the mixtures, an increase in opioid quantity correlated with an increase in the other component quantities.

Conclusion: Although palliative and hospice care patients need individualised medications, standardisation might be possible for the morphine-based drug mixtures and for the mixtures containing midazolam and haloperidol admixed with morphine or oxycodone.

Background: Developing robust care systems to support the evolving landscape of Medical Assistance in Dying (MAID) in Canada has proven difficult. The complexity of applicants applying under Track 2, in which a reasonably foreseeable natural death is not required for eligibility, has challenged the capacities of systems that were initially developed to care for Track 1 applicants.

Objective: To identify structures and practices described by healthcare providers involved in Track 2 care as key to developing a robust system of high quality and safe care for persons applying under Track 2 MAID in Canada.

Design: A qualitative study informed by the principles of Interpretive Description, a pragmatic research approach developed for health disciplines.

Methods: Fifty-five healthcare providers, MAID program administrators, and key informants participated in semi-structured interviews. Interviews were conducted over Zoom™, audio-recorded, transcribed, and analysed using strategies outlined in Interpretive Description.

Results: The work of Track 2 care was described as complex, emotionally-laden, risky, and in some regions, inadequately remunerated. MAID coordination centres were effective for Track 2 care when they were team-based; had a structured intake that supported assessors and managed the expectations of applicants; and provided education and navigation support for applicants and family. The coordination centre role was particularly critical when applicants had no primary care provider. The availability of prospective interdisciplinary case consultation was considered essential for optimizing care in the context of Track 2 applicants.

Conclusion: The assessment for, and provision of, MAID is unique in healthcare. It is the only federally legislated healthcare act, and it is irreversible. It is also morally contentious, particularly in the case with Track 2 where applicants' years of life lost may be significant. The safe and effective implementation of Track 2 requires a robust systems approach that to-date is available in only some regions of Canada.

Introduction: Loneliness and social isolation negatively affect an individual's mental and physical health. Although there is literature exploring loneliness in informal caregivers and literature exploring the unique challenges of providing informal palliative care, there is no existing literature with an explicit focus on loneliness and social isolation in informal palliative caregivers. This systematic review aims to explore the experiences of loneliness and social isolation in informal palliative caregivers.

Methods: The databases of CINAHL, Embase, PsycINFO and PubMed were searched on 23 October 2024. Qualitative literature that studied loneliness and/or social isolation in adult informal palliative and/or end-of-life caregivers was included. Quantitative and non-English language literature was excluded. The studies were screened, and the literature was analysed using thematic analysis. The included studies were critically appraised using the CASP Qualitative Studies Checklist.

Results: Of all the articles screened, 28 were included in the review. The total number of participants across the studies was 505. Three overarching themes (with subthemes) were identified from the analysis. The themes were Caring is complex (19 studies), Lack of support (14 studies) and What helps (9 studies).

Discussion: The challenging and unique experiences of providing palliative care can lead to or exacerbate feelings of loneliness and social isolation. Caregivers struggle with managing the demands of palliative care while having little support during the patient's illness and after they have died. Social support and faith practices alleviated feelings of loneliness for some caregivers. The critical appraisal identified issues around ethical considerations and the researcher-participant relationship. Practitioners should support caregivers to develop meaningful occupations that allow for social connection.

Background: Providing universal access to palliative care is increasingly recognised as a global public health priority, especially in low- and middle-income countries. Compassionate communities could help with provision by fostering community-led responses to dying, death and grief. Despite their global growth, compassionate communities are often absent from national and international palliative care strategies, and few are represented in academic literature. This, along with their diversity and community-defined nature, can contribute to difficulties in documentation, evaluation and visibility, limiting the ability to showcase their benefits, form partnerships and evaluate practice.

Objectives: This study protocol outlines the development of the first global atlas of compassionate communities, aiming to map their locations and increase understanding of their structures, activities and impacts.

Design: A participatory methodology was used. This enabled global participants to complete and share the survey based on their experiences with community programmes addressing serious illness, dying and grief. A diverse steering committee guided the design, validation and piloting of the survey to ensure clarity, cultural sensitivity and accessibility. Eighteen global experts contributed to developing and validating the survey, with 14 of 15 items meeting the Content Validity Index threshold. The final survey captures data on location, aims, evaluation, challenges and impact. Dissemination involves global networks, social media and snowball sampling.

Discussion: This protocol addresses a critical gap in Public Health Palliative Care literature by providing an inclusive and participatory method to map the compassionate community's landscape. The resulting data will promote visibility, partnerships and future research, supporting greater recognition of global compassionate communities and their contributions to primary palliative care.

Background: Palliative care supports human dignity across the trajectory of a serious illness. In addition to addressing multiple dimensions of suffering among patients, palliative care aims to foster healing-a relational process through which one experiences personal growth and transcendence. Palliative care clinicians build relationships with patients through communication practices that enhance trust and other relational elements. These relationships hold the potential to mitigate patient suffering. However, patients from visible minority groups may face structural barriers and clinician biases that impede the formation of healing-oriented relationships. We know little about their experiences of relationships in this setting.

Objectives: To examine the qualities of healing clinician-patient relationships from the perspective of visible minority patients receiving outpatient palliative care.

Design: Interpretive description.

Methods and analysis: We will recruit 10-15 patients who identify themselves as being part of a visible minority group and have had at least two outpatient palliative care visits. We will conduct semi-structured in-depth individual interviews and analyze these based on deductive-inductive thematic analysis initially grounded in current evidence. We will identify relational elements that patients value and that promote positive connections with clinicians. We will produce a rich description of "healing" and understand the role of relationships in healing.

Ethics: We have obtained institutional ethics board approval to conduct this study.

Discussion: Relationships may alleviate patient suffering and promote healing even in settings of serious illness. Clinicians should attend to nurturing meaningful relationships with patients from visible minority groups who face additional challenges beyond those brought by a serious illness. Our findings may inform clinical training programs that promote relationship-building behaviors. Efforts to promote higher quality relationships with these patient groups may improve their overall quality of care and address inequities in palliative care.

Background: Healthcare systems have become increasingly institutionalized, distancing death from everyday life and limiting community capacity to support dying and bereavement. Compassionate Communities (CCs) aim to address this gap through a public health approach to palliative care. Evidence on their development and evaluation remains limited, particularly in Southern Europe.

Objectives: To describe the co-creation process of the first Italian CC and outline an evaluation framework to guide implementation and sustainability.

Design: Participatory, mixed-methods protocol covering the first two phases of the InVita! project: (I) Discover and assess and (II) Focus and commit.

Methods and analysis: Phase I will map local needs and resources through semi-structured interviews with interest-holders, focus groups with caregivers, and reflexive field diaries. A descriptive survey of adult residents will assess knowledge of palliative care, attitudes toward death, perceived self-efficacy, and community engagement. The survey adapts an existing instrument and incorporates death literacy dimensions, with cultural adaptation through interest-holder review. Phase II will translate findings into a shared mission and prioritized actions via participatory workshops and a community awareness event. Data will be analyzed using reflexive thematic analysis for qualitative data and descriptive statistics for survey data. Integration will follow GRAMMS guidelines.

Ethics: The study was reviewed by the Comitato Etico Area Vasta Emilia-Nord, which determined that formal approval was not required due to its noninterventional nature. All participants will provide informed consent, and data will be anonymized in compliance with GDPR.

Discussion: This protocol introduces a structured, participatory approach to developing Italy's first CC. By integrating qualitative and quantitative methods and embedding public involvement, the study aims to generate actionable insights for scaling CC initiatives and advancing public health palliative care.

Trial registration: Not applicable.