Palliative Care and Social Practice最新文献

Background: Palliative care in primary care and nursing home settings is becoming increasingly important. A multidimensional palliative care approach, provided by a multiprofessional team, is essential to meeting patients' and relatives' values, wishes, and needs. Factors that hamper the provision of palliative care in this context have not yet been fully explored.

Objectives: To identify the barriers to providing palliative care for patients at home or in nursing homes as perceived by healthcare professionals.

Design: Cross-sectional survey study.

Methods: A convenience sample of nurses, doctors, chaplains, and rehabilitation therapists working in primary care and at nursing homes in the Netherlands is used. The primary outcome is barriers, defined as statements with ⩾20% negative response. The survey contained 56 statements on palliative reasoning, communication, and multiprofessional collaboration. Data were analyzed using descriptive statistics.

Results: In total, 249 healthcare professionals completed the survey (66% completion rate). The main barriers identified in the provision of palliative care were the use of measurement tools (43%), consultation of an expert (31%), estimation of life expectancy (29%), and documentation in the electronic health record (21% and 37%). In primary care, mainly organizational barriers were identified, whereas in nursing homes, most barriers were related to care content. Chaplains and rehabilitation therapists perceived the most barriers.

Conclusion: In primary care and nursing homes, there are barriers to the provision of palliative care. The provision of palliative care depends on the identification of patients with palliative care needs and is influenced by individual healthcare professionals, possibilities for consultation, and the electronic health record. An unambiguous and systematic approach within the multiprofessional team is needed, which should be patient-driven and tailored to the setting.

Background: In 2016, Canada joined the growing number of jurisdictions to legalize medical assistance in dying (MAiD), when the Supreme Court of Canada's decision in Carter v Canada took effect and the Canadian Parliament passed Bill C-14. Five years later, Bill C-7 introduced several significant amendments. These included removing the 'reasonably foreseeable natural death' requirement (an aspect that was widely debated) and introducing the final consent waiver. Since Bill C-7 is so new, very little research has investigated its operation in practice.

Objectives: This study investigates the experiences of MAiD assessors and providers regarding the Bill C-7 amendments. It explores implications for understanding and improving regulatory reform and implementation.

Design: Qualitative thematic analysis of semi-structured interviews.

Methods: In all, 32 MAiD assessors and providers (25 physicians and 7 nurse practitioners) from British Columbia (n = 10), Ontario (n = 15) and Nova Scotia (n = 7) were interviewed.

Results: The analysis resulted in five themes: (1) removing barriers to MAiD access; (2) navigating regulatory and systems recalibration; (3) recognizing workload burdens; (4) determining individual ethical boundaries of practice and (5) grappling with ethical tensions arising from broader health system challenges.

Conclusion: This is one of the first studies to investigate physicians' and nurse practitioners' experiences of the impact of Bill C-7 after the legislation was passed. Bill C-7 addressed key problems under Bill C-14, including the two witnesses requirement and the 10-day waiting period. However, it also introduced new complexities as practitioners decided how to approach cases involving a non-reasonably foreseeable natural death (and contemplated the advent of MAiD for persons with a mental disorder as a sole underlying condition). This study highlights the importance of involving practitioners in advance of legislative changes. It also emphasizes how the regulation of MAiD involves a range of organizations, which requires strong leadership and coordination from the government.

Background: People experiencing homelessness have limited access to palliative care support despite high levels of ill health and premature mortality. Most research exploring these challenges in the United Kingdom has focused on people living in hostels or temporary accommodation. People with uncertain or restricted immigration status are often unable to access this accommodation due to lack of entitlement to benefits. There is little research about the experiences of those in the United Kingdom who cannot access hostels or temporary accommodation due to restricted or uncertain immigration status with regards to palliative and end-of-life care access.

Aim: To explore the barriers to palliative and end-of-life care access for people with uncertain or restricted immigration status, who are experiencing homelessness and have advanced ill health, and the experiences of UK hospices of supporting people in this situation.

Design: A multi-method cross-sectional study.

Setting/participants: An online survey for hospice staff followed by online focus groups with staff from inclusion health, homelessness and palliative care services, charities and interviews with people experiencing homelessness.

Results: Fifty hospice staff responded to the online survey and 17 people participated in focus groups and interviews (focus groups: n = 10; interviews: n = 7). The survey demonstrated how hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless and that hospice staff have received limited training around eligibility for entitlements or National Health Service (NHS) care. Interview and focus group data demonstrated high levels of unmet need. Reasons for this included a lack of consistency around eligibility for support from local authorities, issues relating to NHS charging, and mistrust and limited knowledge of the UK health and social care system. These barriers leave many people unable to access care toward the end of their lives.

Conclusion: To advocate for and provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people's entitlement to care and support, as well as easier access to specialist legal advice.

Context: The majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). Increased access to PC education is greatly needed.

Objectives: This paper describes the process to adapt an advanced PC training course for a Chilean context.

Methods: A joint team of intercultural PC educators from the US and Chile conducted a series of key informant interviews and a target audience survey to iteratively design a PC training course in Chile.

Results: Eight key informant interviews identified a strong need for formal PC education pathways, confirmed the five central learning domains, and helped to identify potential course sub-topics. A target audience survey of 59 PC providers from across Chile confirmed a strong desire to participate in such a course.

Conclusion: Our team of intercultural PC educators adapted an advanced PC course to the unique context of Chilean providers.

Cancer pain is a common symptom in patients with cancer and can largely affect their quality of life. Pain management is important to minimize the impact of pain on daily activities. Cancer nurses are significantly involved in all steps of pain management and contribute to the success of therapy through their knowledge and expertise. While they generally play an important role in the screening, assessment, diagnosis, treatment and follow-up of patients and their (pain) symptoms, this varies from country to country in Europe. An important aspect is their role in educating patients and their families about what pain is, what impact it can have, how it can be treated pharmacologically or non-pharmacologically and what effects or problems can occur during treatment. While there is a great discrepancy between education and training opportunities for cancer nurses in different European countries, there is a continued need for education and training in pain management. Cancer is increasingly becoming a chronic disease, and the management of pain in cancer survivors will be crucial to maintain an adequate quality of life. With this, the crucial role of cancer nurses is becoming even more important.

Background: Palliative care aims to provide holistic support for people with life-limiting illness, responding to psychological, social and spiritual needs, as well as to clinical and physical. In the United Kingdom, hospice day services (including day care, group interventions, group activities, and social events for palliative care outpatients) aim to provide opportunities for patients to gain social support, which is thought to improve their quality of life.

Objectives: This research explored social support within hospice day services, to explain in detail how and why social support obtained within a hospice day service could be beneficial to palliative care patients.

Design: Qualitative research using observations of hospice day services and interviews with service providers.

Methods: Data collection involved nineteen interviews with hospice service providers (n = 19) and researcher observations of hospice day services. The findings detail how patient and hospice context interact to produce mechanisms that lead to outcomes beyond the hospice day service.

Results: Practical, clinical and social aspects of the hospice day service are important for patients feeling welcome and safe in the setting. The opportunity to connect with other people and work towards personal goals can boost self-confidence for patients who have lost access to meaningful activity. New friendships between patients encourages reciprocal support and feelings of belonging. It is beneficial to have permission to speak freely about topics deemed inappropriate elsewhere, because honest communication is helpful in accepting and adapting to their circumstances.

Conclusion: Hospice day services facilitate group settings for reciprocal social support. This research proposes an initial programme theory that can be further developed and tested. It explains how and why, in some contexts, social support increases personal and practical resources to cope with illness and death, leading to changes outside of the hospice (to mood, interpersonal interactions and behaviour) that could improve quality of life.

Background: The exploration and monitoring of the personal values, wishes, and needs (VWN) of patients in the palliative phase by hospital clinicians is essential for guiding appropriate palliative care.

Objective: To explore the barriers and facilitators concerning communication with patients in the palliative phase about their VWN as perceived by hospital clinicians.

Design: A mixed-methods systematic review following the Joanna Briggs Institute guidelines for mixed-method systematic reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines was conducted (PROSPERO ID: CRD42021216693).

Data sources and methods: Eight databases, including PubMed, Embase, and CINAHL, were searched without time restrictions. The search string was built using the search Palliative cAre Literature rEview iTeraTive mEthod (PALETTE) framework. Eligible studies focused on (1) hospital clinicians and (2) perceived barriers and facilitators regarding the exploration and monitoring of the VWN of adult patients in the palliative phase. Two researchers independently selected articles and evaluated the quality. Findings were synthesized using a convergent integrated approach.

Results: In total, 29 studies were included: 14 quantitative, 13 qualitative, and 2 mixed methods. Five synthesized findings were identified: (1) the clinician's professional manners, (2) the image formed of the patient and loved ones, (3) the human aspect of being a clinician, (4) the multidisciplinary collaboration, and (5) the contextual preconditions. Most studies seemed focused on communication about treatment decision making.

Conclusion: A patient-centered approach seems lacking when clinicians discuss the patient's VWN, since most studies focused on treatment decision making rather than on the exploration and monitoring of the multidimensional well-being of patients. This review emphasizes the need for the development and integration of a systematic approach to explore and monitor the patients' VWN to improve appropriate palliative care in hospitals.

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities.

Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying.

Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals.

Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement.

Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need.

Background: Screening patients with patient-reported outcome measures allows identification of palliative care concerns. The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for this purpose. Tools developed in another setting might not be readily usable locally. We previously evaluated the validity and reliability of the IPOS in our cardiology setting. However, it remains uncertain what factors would influence the subsequent implementation of IPOS for routine screening of patients with advanced heart failure in future practice.

Objectives: This study aimed to identify the factors that could affect the IPOS implementation for patients with advanced heart failure.

Design: This was a qualitative study conducted at the National Heart Centre Singapore.

Methods: Patients with advanced heart failure who participated in our previous IPOS validation study were purposively recruited for semi-structured interviews. Healthcare workers caring for these patients and involved in the testing of the IPOS tool were also invited for interviews. The interviews were analyzed thematically and mapped to the Consolidated Framework for Implementation Research (CFIR).

Results: Our analysis identified six potential facilitators and six potential barriers to implementation across five major domains of the CFIR (intervention characteristics, inner setting, outer setting, individual characteristics, and process). Facilitators include: (i) perception of utility, (ii) perception of minimal complexity, (iii) perception of relatability, (iv) conducive culture, (v) dedicated resources, and (vi) advocates for implementation. Barriers include: (i) need for adaptation, (ii) mindsets/role strains, (iii) resource constraints, (iv) cultural concerns, (v) individual needs, and (vi) change process.

Conclusion: Institutions could focus on cultivating appropriate perceptions and conducive cultures, providing dedicated resources for implementation and introducing facilitators to advocate for implementation. Adaptation of IPOS to suit workflows and individual needs, consideration of change processes, and systemic changes to alleviate cultural, resource, and staff role strains would improve IPOS uptake during actual implementation in clinical services.

Trial registration: Not applicable.

Background: A living will document is known to be an important tool for preparing for future care together with healthcare professionals. A living will supports an older person's self-determination and autonomy. Only a few studies have approached the underlying factors of a living will document among older long-term care recipients.

Objectives: To explore how common having a living will was among older persons receiving home care or round-the-clock long-term care, as well as to evaluate associations between socio-demographical factors and functional capacity with a living will.

Design: The study population consisted of older persons receiving long-term care in Finland in 2016-2017. Data were collected via individual assessments at home or at a care facility. The questions in the assessment covered health, functional capacity, service use, and social support.

Methods: Primary outcome 'living will' and associated factors were identified for each person aged 65 or older from RAI-assessment data (Resident Assessment Instrument, RAI). Cross-tabulations with χ²-tests and adjusted binary logistic regression models were performed to evaluate the association between the factors and a living will.

Results: Of the 10,178 participants, 21% had a living will - a greater proportion were female (22%) than male (18%), and a greater proportion of residents in assisted living (25%) and residential care homes (20%) compared with home care residents (15%) had a living will. Female gender (p < 0.001), having a proxy decision-maker (p = 0.001), increasing age (p = 0.003), impairing functional capacity (activities of daily living hierarchy p < 0.001, Cognitive Performance Scale p < 0.001), instability of health status (Changes in Health, End-Stage Disease and Signs and Symptoms p < 0.001), and closeness of death (p < 0.001) were significantly associated with a living will among older persons. Extensive differences in results were found between home care clients and clients of round-the-clock long-term care.

Conclusion: Preparedness for the future with a living will varies according to services and on individual level. To reduce inequalities in end-of-life care, actions for advance care planning with appropriate timing are warranted.