BMC Palliative Care
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Views of patients with advanced disease and their relatives on participation in palliative care researchAbstract
Background
Method
Results
Conclusions
BMC Palliative Care - Tập 20 Số 1 - 2021
Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation.
This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question.
Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis.
First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (
Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.
Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol
BMC Palliative Care - Tập 14 - Trang 1-9 - 2015
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is ‘family centered’, with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30–50 % of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice. Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4. The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting. Australian New Zealand Clinical Trials Registry
ACTRN12615000200583
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Completion rate of physician orders for life-sustaining treatment for patients with metastatic or recurrent cancer: a preliminary, cross-sectional studyAbstract
Background
Methods
Results
Conclusions
BMC Palliative Care - Tập 18 Số 1 - 2019
“End of life” is a difficult topic of conversation in East Asian cultures, even among patients and doctors who share a good rapport. In 2016, the Hospice, Palliative Care, and Life-Sustaining Treatment Decision-Making Act, which took the form of “Physician Orders for Life-Sustaining Treatment,” was introduced in South Korea. This study was conducted to investigate the completion rate of Physician Orders for Life-Sustaining Treatment in patients with advanced cancer on the active recommendation of physicians, as well as patients’ general attitudes toward end-of-life care.
We conducted a preliminary, cross-sectional descriptive survey on patients with advanced cancer. A total of 101 patients with advanced solid cancer agreed to participate in the study. The primary endpoint was the rate of completion of Physician Orders for Life-Sustaining Treatment based on a doctor’s suggestion. Written interviews were conducted to understand the perceptions and factors influencing patients’ decisions.
Of the 101 patients, 72 (71.3%) agreed to prepare Physician Orders for Life-Sustaining Treatment. Patients who had an educational level of high school or higher were more likely to agree to complete Physician Orders for Life-Sustaining Treatment documentation as compared to the lower educational status group. More than half of the respondents who completed Physician Orders for Life-Sustaining Treatment documentation reported that they had more than a fair understanding of “life-sustaining care” or “Physician Orders for Life-Sustaining Treatment.” Participants’ reasons for Physician Orders for Life-Sustaining Treatment completion were diverse.
We found that highly educated patients, who understood the concept behind the policy well, tended to accept Physician Orders for Life-Sustaining Treatment without hesitation. Better education, information shared through the media, and conversations with health care providers might improve understanding of Physician Orders for Life-Sustaining Treatment in patients with cancer.
Xạ trị hỗ trợ tại ngực phân đoạn trong ung thư phổi không tế bào nhỏ - Vô nghĩa hay đáng giá? Dịch bởi AI
BMC Palliative Care - Tập 17 - Trang 1-7 - 2018
Xạ trị hỗ trợ tại ngực (PTR) có thể giảm triệu chứng phát sinh từ bệnh lý trong lồng ngực. Thời điểm và phân đoạn tối ưu của PTR vẫn chưa được xác định. Thời gian để có tác dụng là 2 tháng. Mục tiêu chính của nghiên cứu hồi cứu này là điều tra khả năng sống sót sau PTR, với giả thuyết rằng một số lượng đáng kể bệnh nhân nhận được PTR phân đoạn không có hiệu quả. Mục tiêu phụ là tìm các yếu tố tiên lượng để hướng dẫn quyết định điều trị. Những bệnh nhân mắc ung thư phổi không tế bào nhỏ (NSCLC) dự kiến nhận PTR trong khoảng thời gian 2010-2011 tại Bệnh viện Đại học Copenhagen đã được đưa vào nghiên cứu. Chúng tôi đã ghi nhận bệnh lý, phân loại khối u, hạch và di căn (TNM), giai đoạn, chỉ định, ngày bắt đầu, lịch trình cho PTR, đã hoàn thành hay chưa, tình trạng hiệu suất (PS) và thời gian tử vong. Các phân tích được thực hiện theo cách điều trị theo ý muốn bằng cách sử dụng hồi quy Cox, kiểm định chính xác Fisher và Kaplan Meier. Tổng cộng 159 bệnh nhân đã được đưa vào nghiên cứu. Thời gian sống sót trung bình (OS) là 4,2 tháng. Mười sáu bệnh nhân (10%) hoặc không bắt đầu hoặc không hoàn thành PTR. Trong số này, tám bệnh nhân (5%) đã tử vong trước hoặc trong lúc tiến hành PTR. Trong số 151 bệnh nhân nhận PTR, mười sáu bệnh nhân (11%) đã tử vong trong vòng 14 ngày, ba mươi ba bệnh nhân (22%) trong vòng 30 ngày và năm mươi bệnh nhân (33%) trong vòng 2 tháng. PS 0-1 và ung thư biểu mô tế bào vảy có liên quan đến sự sống sót tốt hơn. Nghiên cứu của chúng tôi cho thấy rằng một số lượng đáng kể bệnh nhân nhận PTR đã tử vong trước khi họ có thể đạt được tác dụng tối ưu của điều trị. PS và mô học là các yếu tố tiên lượng quan trọng có lợi cho PS 0-1 và ung thư biểu mô tế bào vảy. Dựa trên nghiên cứu của chúng tôi, chúng tôi gợi ý rằng những bệnh nhân có PS 0-1 nên được xem xét cho PTR phân đoạn trong khi những bệnh nhân có PS ≥ 2 nên được xem xét chỉ nhận liều cao một lần hoặc chăm sóc hỗ trợ paliative.
#xạ trị hỗ trợ; ung thư phổi không tế bào nhỏ; yếu tố tiên lượng; sức khỏe; chất lượng cuộc sống.
Family caregivers’ preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home – a grounded theory study
BMC Palliative Care - Tập 23 - Trang 1-11 - 2024
Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient’s illness trajectory. Therefore, the aim was to explore family caregivers’ preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. The findings are captured in the core category “hold out in duty and love”. The categories “having control and readiness for action” and “being involved in care” describe the family caregivers’ preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient’s care and decision making. The categories “being seen and confirmed” and “having a respite” describe family caregivers’ preferences for support according to their own needs to be able to persevere in the situation. Despite deterioration in the patient’s illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient’s illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers’ preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers’ needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.
Palliative care provider attitudes toward existential distress and treatment with psychedelic-assisted therapies
BMC Palliative Care - Tập 20 - Trang 1-14 - 2021
Existential distress is a significant source of suffering for patients facing life-threatening illness. Psychedelic-Assisted Therapies (PAT) are novel treatments that have shown promise in treating existential distress, but openness to providing PAT may be limited by stigma surrounding psychedelics and the paucity of education regarding their medical use. How PAT might be integrated into existing treatments for existential distress within palliative care remains underexplored. The present study aimed to elucidate the attitudes of palliative care clinicians regarding treatments for existential distress, including PAT. We recruited palliative care physicians, advanced practice nurses, and spiritual and psychological care providers from multiple US sites using purposive and snowball sampling methods. Attitudes toward PAT were unknown prior to study involvement. Semi-structured interviews targeted at current approaches to existential distress and attitudes toward PAT were analyzed for thematic content. Nineteen respondents (seven physicians, four advanced practice nurses, four chaplains, three social workers, and one psychologist) were interviewed. Identified themes were 1) Existential distress is a common experience that is frequently insufficiently treated within the current treatment framework; 2) Palliative care providers ultimately see existential distress as a psychosocial-spiritual problem that evades medicalized approaches; 3) Palliative care providers believe PAT hold promise for treating existential distress but that a stronger evidence base is needed; 4) Because PAT do not currently fit existing models of existential distress treatment, barriers remain. PAT is seen as a potentially powerful tool to treat refractory existential distress. Larger clinical trials and educational outreach are needed to clarify treatment targets and address safety concerns. Further work to adapt PAT to palliative care settings should emphasize collaboration with spiritual care as well as mental health providers and seek to address unresolved concerns about equitable access.
How to conserve dignity in palliative care: suggestions from older patients, significant others, and healthcare professionals in Swedish municipal care
BMC Palliative Care - Tập 18 - Trang 1-12 - 2019
An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden. This study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9) and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework. With the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity. As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.
Current status of intensive end-of-life care in children with hematologic malignancy: a population-based study
BMC Palliative Care - Tập 20 - Trang 1-7 - 2021
Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding the quality of end-of-life care (EOLC) for children with hematologic malignancies. To improve the quality of EOLC for children with hematologic malignancies, the aims of this study were (i) to compare intensive EOLC between children with hematologic malignancies and those with solid tumors; and (ii) to describe factors associated with intensive EOLC in children with hematologic malignancies. We retrospectively reviewed 0- to 18-year-old patients with cancer, who died in hospital between April 2012 and March 2016 in Japan using the Diagnosis Procedure Combination per-diem payment system. Indicators of intensive inpatient EOLC were defined as intensive care unit admission, cardiopulmonary resuscitation (CPR), intubation and/or mechanical ventilation, hemodialysis, or extra-corporeal membrane oxygenation in the last 30 days of life, or intravenous chemotherapy in the last 14 days. We determined factors associated with intensive EOLC using regression models. Data regarding use of blood transfusion were also obtained from the database. Among 1199 patients, 433 (36%) had hematological malignancies. Children with hematologic malignancies were significantly more likely than those with solid tumors to have intubation and/or mechanical ventilation (37.9% vs. 23.5%), intensive care unit admission (21.9% vs. 7.2%), CPR (14.5% vs. 7.7%), hemodialysis (13.2% vs. 3.1%) or extra-corporeal membrane oxygenation (2.5% vs. 0.4%) in their last 30 days, or intravenous chemotherapy (47.8% vs. 18.4%; all P < .01) within their last 14 days of life. Over 90% of children with hematological malignancies received a blood transfusion within the last 7 days of life. For hematological malignancies, age under 5 years was associated with CPR and ≥ 2 intensive EOLC indicators. Longer hospital stays had decreased odds of ≥ 2 intensive EOLC indicators. Children with hematologic malignancies are more likely to receive intensive EOLC compared to those with solid tumors. A younger age and shorter hospital stay might be associated with intensive EOLC in children with hematologic malignancies.
Exploration of the acceptability and usability of advance care planning tools in long term care homes
BMC Palliative Care - - 2020
Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC. A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims. Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%). ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication.
Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers
BMC Palliative Care - Tập 18 - Trang 1-10 - 2019
Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers. Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506). Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
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