Palliative Care and Social Practice最新文献

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.

Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view.

Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites.

Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis.

Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care.

Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Background: Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.

Objectives: The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.

Methods: Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.

Results: In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.

Conclusion: The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.

Drugs that are commercially available but have novel mechanisms of action should be explored as analgesics. This review will discuss haloperidol, miragabalin, palmitoylethanolamide (PEA), and clonidine as adjuvant analgesics or analgesics. Haloperidol is a sigma-1 receptor antagonist. Under stress and neuropathic injury, sigma-1 receptors act as a chaperone protein, which downmodulates opioid receptor activities and opens several ion channels. Clinically, there is only low-grade evidence that haloperidol improves pain when combined with morphine, methadone, or tramadol in patients who have cancer, pain from fibrosis, radiation necrosis, or neuropathic pain. Miragabalin is a gabapentinoid approved for the treatment of neuropathic pain in Japan since 2019. In randomized trials, patients with diabetic neuropathy have responded to miragabalin. Its long binding half-life on the calcium channel subunit may provide an advantage over other gabapentinoids. PEA belongs to a group of endogenous bioactive lipids called ALIAmides (autocoid local injury antagonist amides), which have a sense role in modulating numerous biological processes in particular non-neuronal neuroinflammatory responses to neuropathic injury and systemic inflammation. Multiple randomized trials and meta-analyses have demonstrated PEA's effectiveness in reducing pain severity arising from diverse pain phenotypes. Clonidine is an alpha2 adrenoceptor agonist and an imidazoline2 receptor agonist, which is U.S. Federal Drug Administration approved for attention deficit hyperactivity disorder in children, Tourette's syndrome, adjunctive therapy for cancer-related pain, and hypertension. Clonidine activation at alpha2 adrenoceptors causes downstream activation of inhibitory G-proteins (Gi/Go), which inhibits cyclic Adenosine monophosphate (AMP) production and hyperpolarizes neuron membranes, thus reducing allodynia. Intravenous clonidine has been used in terminally ill patients with poorly controlled symptoms, in particular pain and agitation.

A historical look back at the 'beginnings' of palliative social work in the United States provides a lens through which to view current areas of focus and future trends in hospice and palliative care with the objective of emphasizing the need for equitable practice approaches. The background and formative efforts to establish palliative social work in the United States as a specialty field of practice were scaffolded by the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and two Social Work Leadership Summits on End-of-Life and Palliative Care, which help to explain how we got here. In the development of the social work role in providing palliative and end-of-life care for individuals who are seriously ill and their families, several important functions unfolded naturally as part of our practice repertoire as professionals. Practitioners, researchers, advocates, policy developers, and more have advanced the field and strengthened palliative social work, especially as the profession addresses inequities and promotes quality of life. Social workers' administrative reports, academic literature, professional standards and educational programs, assessment tools, and evidence-informed practice interventions contribute to illuminating the roles that social workers have on interdisciplinary palliative care teams, while emphasizing the importance of leadership development. Social workers in palliative and end-of-life care are on a firm ground from which to move forward into the ever-evolving future of providing essential quality care at such a critical time in life.

Background: Due to modern therapies, survival in metastatic renal cell carcinoma (mRCC) has been significantly prolonged. Nevertheless, patients suffering from advanced disease often present with severe symptoms. Early integration of palliative care into anti-cancer treatment has been shown to improve quality of life and may even prolong survival. Therefore, it is recommended to offer palliative care to patients with complex symptoms at the beginning of an advanced disease stage. To our knowledge, so far, no study has been conducted to examine the role of palliative care in patients with mRCC.

Objectives: This study aimed to assess the symptom burden and quality of life before and after an inpatient palliative care treatment.

Design: The study design is a retrospective observational study.

Methods: We included patients with mRCC, who were admitted to our palliative care unit between 2011 and 2017 due to severe symptoms. The symptom burden was assessed at admission, throughout treatment, and at discharge. The evaluation consisted of the palliative care base assessment and daily documentation of relevant symptoms.

Results: We evaluated 110 hospitalizations of 58 RCC patients. On average, patients were admitted to the palliative care unit 7 years after initial diagnosis (range 1-305 months). The median age was 70.5 years, 69% of the patients were male, 3% female. The main causes for admission were pain (52%) and dyspnea (26%), and the most frequent patient-reported symptoms were fatigue/exhaustion (87%), weakness (83%), and need for assistance with activities of daily living (83%). Multidisciplinary palliative care treatment led to a significant reduction in the median minimal documentation system (MIDOS) symptom score (15.6-9.9, p < 0.001), the median numeric pain rating scale (3-0, p < 0.001), and a significant reduction in mean ratings of the distress thermometer (5.5-3.1, p = 0.016).

Conclusion: Our analysis shows that the integration of palliative care treatment is effective throughout the disease in mRCC and could measurably reduce the symptom burden in our patient population. Palliative care should not be equated with end-of-life care but should rather be integrated throughout advanced disease, particularly as soon as a cure is impossible.

Background: Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'.

Objectives: This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services.

Design: A co-designed evaluation approach utilizing mixed-method design is used.

Methods: Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated.

Results: This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community.

Conclusion: All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings.

Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options.

Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning.

Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care.

Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health.

Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

Advance care planning (ACP) supports individuals in aligning their medical care with personal values and preferences in the face of serious illness. The variety of ACP tools available reflects diverse strategies intended to facilitate these critical conversations, yet evaluations of their effectiveness often show mixed results. Following the Arskey and O'Malley framework, this scoping review aims to synthesize the range of ACP tools targeted at patients and families, highlighting their characteristics and delivery methods to better understand their impact and development over time. Studies included focused on patient-facing ACP tools across all settings and mediums. Exclusions were applied to studies solely targeting healthcare providers or those only aiming at completion of advance directives without broader ACP discussions. Searches were conducted across PubMed, Embase, CINAHL, The Cochrane Library, and Web of Science. Data were extracted using a predesigned spreadsheet, capturing study population, setting, intervention modality, and intervention theme. Tools were categorized by delivery method and further analyzed through a year-wise distribution to track trends and developments. We identified 99 unique patient-facing tools, with those focusing on counseling (31) and video technologies (21) being the most prevalent while others incorporated online platforms, print materials, games, or some combination of different delivery methods. Over half the tools were designed for specific patient groups, especially for various diseases and racial or ethnic communities. Recent years showed a surge in tool variety and innovation, including integrated patient portals and psychological techniques. The review demonstrates a broad array of innovative ACP tools that facilitate personalized and effective ACP. Our findings contribute to an enhanced understanding of their utilization and potential impacts, offering valuable insights for future tool development and policy making in ACP.

Background: In palliative care, the Utrecht Symptom Diary - 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients' autonomy, it is essential to know what patients need to use it.

Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care.

Design: A generic qualitative design with primary and secondary analyses of semistructured interviews.

Methods: Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis.

Results: Twenty-five patients were included (14 men, ages 44-87). Patients' needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach.

Conclusion: For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them.

Background: The growing burden of life-threatening illnesses and advancements in care interventions call for the intentional integration of palliative care services into existing care systems. The absence of active, functioning palliative care services in most hospitals in Ghana is a major concern. This study explored the factors influencing the integration of palliative care services in one of such institutions.

Objectives: The aim of the study was to explore the institutional drivers of palliative care integration in a military health facility.

Design: Exploratory qualitative study.

Methods: We employed a qualitative exploratory study design situated within a constructivist paradigm. A purposive sampling method was used to select and interview 11 healthcare professionals. A semistructured interview was used to conduct face-to-face, in-depth interviews with participants between April and May 2022. A thematic data analysis was done based on the Braun and Clarke analysis process with the aid of QSR NVivo-12.

Results: The six themes that describe the institutional driving factors for integrating palliative care services were cognitive restructuring, supportive logistics and infrastructure, staffing, healthcare professional skills, institutional policies and priorities, and utilization of focal persons. It was observed that a paradigm shift in the mindset of healthcare professionals and administrators was a major driver that would determine the integration of palliative care services. A cognitive restructuring will facilitate a more aggressive integration of palliative care services because logistics, staffing, and medication access will be prioritized.

Conclusion: Institutions have the responsibility of aligning with the WHO policy on palliative care service access and must invest in training, staffing, prioritizing palliative care needs and policies, procurement of essential drugs, and the provision of logistics and supportive infrastructure to scale up the implementation of palliative care services.