Palliative & Supportive Care最新文献

Objectives: Although prior research has identified common attributes of a Good Death across cultures, few studies have simultaneously incorporated the views of patients, family caregivers, and physicians - particularly in Latin America, where structural barriers to palliative care persist. This study examines how these stakeholders in Mexico perceive and designate what constitutes a Good Death, aiming to identify its core components and cultural particularities.

Methods: Qualitative interviews were conducted with 14 advanced-stage oncologic and nononcologic patients receiving home-based palliative care, 12 family caregivers, and 21 physicians. Data were analyzed using principles of generic purposive sampling and thematic analysis.

Results: The most frequent designation for a Good Death was "Dignified and Peaceful Death," perceived as a multidimensional and multitemporal process. Five core domains emerged: physical, psychological, interpersonal, spiritual, and structural. These dimensions manifested across distinct phases - before death (as preparation), during death, and after death.

Significance of results: A Dignified and Peaceful Death begins when individuals become aware of their mortality and encompasses cultural, emotional, and structural elements that transcend physical death. This perspective suggests that end-of-life care should respond not only to biomedical needs but also to broader existential and relational dimensions that shape patient and family experiences in resource-limited settings.

Objectives: Despite the high frequency and severity of fatigue among patients with advanced cancer receiving immunotherapy, there are limited treatment options available. The aim of the study was to explore the effects of the methylphenidate (MP) with standardized physical activity (PA) on cancer related fatigue (CRF).

Methods: In this pilot study, patients with advanced cancer with clinically significant CRF (<34 on Functional Assessment of Cancer Illness Therapy - fatigue scale, FACIT-F), on anti-PD1 immunotherapy were eligible. Patients were randomized to standardized PA with either patient-controlled MP 5 mg (MP + PA arm) or matching Placebo (Pl + PA arm) twice daily for 14 days. The primary outcome was the change in the FACIT-F score. Secondary outcomes included changes in fatigue dimensions (Multidimensional Fatigue Symptom Inventory-Short Form (MSFI-SF), Functional Assessment of Cancer Therapy - General (FACT-G), Patient-Reported Outcome Measurement Information System-Fatigue (PROMIS-F), and hospital anxiety and Depression Scale (HADS).

Results: Of the 40 randomized patients, 34 were evaluable. The FACIT-F scores significantly improved in both the arms with mean (SD) change, effect size (ES) of 11(14), 0.87(P < .001); and 9(12), 0.74(P = .04) in MP + PA, and Pl + PA arms respectively. We also found significant improvements in PROMIS-F, ES - 1.05(P = .003), MFSI-SF(global), ES - 1.32(P < .001), and HADS-depression, ES - 0.92(P = .004) in the MP + PA arm; There were no significant differences in adverse events between groups.

Significance of results: Our preliminary study found MP + PA was associated with significant improvement in CRF scores. The fatigue dimensions and depression scores significantly improved in the MP + PA arm. Further comparative studies using MP + PA for CRF are justified.

Objectives: Patients with advanced cancer, their caregivers, and healthcare professionals can differ in their preferences for patient treatment and care. The objectives of this study were to (1) identify what healthcare professionals in specialist palliative care feel aids or challenges patients with advanced cancer and their caregivers to manage their discordance, and (2) decipher what is helpful or challenging for healthcare professionals themselves to manage discordance between patients with advanced cancer and their caregivers.

Methods: A qualitative study was conducted comprising online focus groups with 19 healthcare professionals from different professions in specialist palliative care. Participants were purposively and snowball sampled, and recruited from specialist palliative care settings, including hospital, hospice, and community-based care. The data were member checked and analyzed using thematic analysis.

Results: Trust and consistent communication between the patient, caregiver, and healthcare professional, were considered by participants as helpful for patients and caregivers to manage discordance. Emotional and psychological burden for both the patient and caregiver together with preexisting conflict between the patient and caregiver, were perceived as barriers for patients and caregivers to manage their discordance. Knowledge and expertise gained from practice combined with professional resilience and peer support enabled participants to help patients and caregivers navigate discordance. Relational conflict between the patient and caregiver combined with participants' own uncertainty about ethical and legal connotations of helping the patient and caregiver resolve their differences, were barriers to helping the patient and caregiver manage their discordance.

Significance of results: Interventions focused on assisting patients with advanced cancer in palliative care and their caregivers manage their differences in decision-making could serve to alleviate emotional burden for both the patient and caregiver. Healthcare professionals in specialist palliative care value the perspective of both patients with advanced cancer and their caregivers when helping them manage their discordance in decision-making.

Objectives: Most people at the end of life wish to die at home. Lay carers are crucial to supporting a home death and key to a good death is management of symptoms; this may prevent unwanted hospital admissions. If a dying person is too weak to swallow, regular medicines are administered continuously via subcutaneous (SC) cannula. When symptoms "break through," additional (or as-needed) doses can be given, usually by a visiting healthcare professional. Delayed symptom control can occur due to time taken for healthcare professionals to arrive at the home.Lay carers can be trained to administer as-needed SC medicines; the practice is safe and legal in the UK, although not widely used. The "CARer-Administration of as-needed SC medication for breakthrough symptoms in people dying at home" (CARiAD) feasibility trial of lay carer administration in the UK was the first to conduct in-depth interviews with carers trained in the practice.The objective of this paper is to give voice to carers and show how experiences reflect benefits and challenges of lay administration at the end of life.

Methods: Qualitative interviews with carers trained in the practice. Interviews were analyzed using Interpretive Phenomenological Analysis.

Results: Caring for a loved one at home during the last days of life is complex. Accounts reveal a desire to fulfill a loved one's wishes by keeping them at home and having the death they wanted. Carers were afraid of uncontrolled symptoms, especially pain, empowered by the ability to help and grateful to avoid long delays. Potential for carer burden and fears of hastening death require careful reassurance from health care professionals.

Significance of results: We learned that carers endorsed and embraced the opportunity to do more to keep their loved ones comfortable and at home. This is significant in making the case for wider access to the practice in the UK.

Objectives: To explore the spirituality issues among cancer patients undergoing cancer treatment at Ocean Road Cancer Institute (ORCI), Dar es Salaam, Tanzania.

Methods: This was a qualitative study involving purposively selected cancer patients receiving treatment at ORCI, Dar es Salaam, Tanzania. Data were collected through one-to-one audiotaped interviews using a pilot-tested semi-structured interview guide. Data saturation was reached at the 24th interview. Thematic data analysis was used.

Results: Twenty-four cancer patients attending ORCI, consisting of 12 males and 12 females, aged 18-65, participated in the study. The majority of participants, 71% (n = 17), had low education, 71% (n = 17) were of low socioeconomic status, and 83% (n = 20) were either Christians or Muslims. Six broad themes emerged: aspects of life contributing to meaning and purpose of life, beliefs surrounding cancer, effects of cancer on spirituality, spirituality in relation to seeking health care, spirituality and coping with cancer, and spirituality needs of cancer patients.

Significance of results: Cancer patients at ORCI face significant spirituality issues and hold misconceptions about the causes and treatment of cancer. Palliative care practitioners must routinely identify and address spiritual issues of cancer patients in order to improve the quality of life of cancer patients.

The setting in which patients face the end of life (EOL) is shaped by complex, individualized needs beyond physical care. Mr. X, a man in his mid-50s with glioblastoma, endured treatment complications and progressive decline. Supportive care was engaged to manage symptoms and support his wife, Mrs. X, who was simultaneously the family's financial provider and caregiver for both her husband and their autistic adult son. As his condition worsened, she resisted hospice and code status changes, citing emotional, logistical, and financial barriers, while fiercely advocating for his wish to die in the hospital. Counseling and empathic validation helped her share her burdens and reframe her advocacy as rooted in love and grief. She ultimately consented to comfort-focused care, and Mr. X died peacefully in the hospital after a 31-day stay. This case underscores the need to integrate psychosocial factors into individualized EOL planning and to strengthen person-centered care.

Objective: Unpaid cancer caregivers (UCCs) are the primary caretakers of individuals with cancer, often shouldering caregiver responsibilities without prior preparation, which leads to a sense of isolation, particularly in remote and rural areas where healthcare access is challenging. Thus, this systematic review aimed to explore the perceived and/or received peer support needs of UCCs residing in rural and remote areas with a specific focus on informational, practical, and emotional needs.

Method: Seven databases (CINAHL, ScienceDirect, PUBMED/MEDLINE, PROQUEST, Web of Science, Scopus, and Informit) were searched from 2004 to 2024. Peer-reviewed qualitative, quantitative, and mixed-method studies published in English were considered for this review. Data were extracted using the Joanna Briggs Institute System for Unified Management, Assessment, and Review of Information and presented using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. Quality and bias were assessed with the Mixed Methods Appraisal Tool.

Results: In total, 8 primary studies were included: 4 qualitative, 2 mixed methods, 1 cross-sectional, and 1 prospective survey. Four themes were identified: (1) Emotional, practical, and informational unmet needs; (2) Lack of peer support on the physical and emotional well-being of UCCs in remote and rural areas; (3) Lack of supportive services in remote and rural areas; and (4) Access to flexible peer support.

Significance of results: This review revealed the unique unmet needs of UCCs in remote and rural areas, where a lack of reliable and accessible resources adversely leads to impaired UCCs' overall well-being. Addressing these unmet needs is essential to enhance the support system for UCCs living in such regions. By identifying the gaps, the review underscores the need for developing a peer support model tailored to the specific needs of UCCs in rural and remote communities.

Objective: This study aims to systematically identify patient-reported end-of-life (EOL) care needs of patients with incurable illnesses, and advocate for a person-centered approach to care in Bangladesh.

Method: This cross-sectional study was conducted in four tertiary care hospitals across Bangladesh and included 301 adult patients who had at least one of the following serious and complex incurable conditions: stage III or IV cancer, congestive heart failure (NYHA Class IV), end-stage liver disease, chronic renal failure requiring hemodialysis, stroke, oxygen-dependent pulmonary disease, or any type of dementia. Specific domains of EOL care needs were identified in relation to patients' functional status using multinomial logistic regression. Differences in EOL care needs across socio-demographic and symptom profiles were analyzed using independent t-tests and one-way ANOVA.

Results: All patients had a Needs Near the End-of-Life Care Screening (NEST-13) score ≥30, indicating a high level of EOL care need. High levels of unmet needs were reported in domains such as doctor-patient communication (89.4%), goals of care (78.1%), spiritual needs (77.4%), and caregiving (66.4%). Patients with longer disease duration (>12 months) and higher symptom burden had significantly higher NEST scores (p < 0.001). Functional status strongly influenced care needs. Multinomial regression confirmed physical care needs (OR = 10.59), caregiving (OR = 3.40), and spiritual needs (OR = 2.81) were most strongly associated with terminal status (PPS ≤ 20%).

Significance of the result: This study reveals an overwhelming burden of unmet EOL care needs among patients with incurable diseases in Bangladesh. The findings emphasize the urgent necessity for holistic, culturally sensitive, and person-centered care, alongside the integration of palliative care into mainstream healthcare services.