BMC Palliative Care最新文献

Background: Most people diagnosed with dementia live and die in community settings. This study aimed to: (i) describe the palliative care needs of patients with dementia at commencement of community palliative care; (ii) compare palliative care needs between patients with dementia and those with lung cancer and cardiovascular disease (CVD).

Methods: This is a population-based descriptive study that involved 8,727, 7,539 and 25,279 patients who accessed community palliative care across Australia principally because of dementia, CVD and lung cancer. Patients' functional abilities, symptom burden and clinical condition were assessed at commencement of community alliative care using five validated instruments: Resource Utilisation Groups-Activities of Daily Living, Australia-modified Karnofsky Performance Status, Symptoms Assessment Scale, Palliative Care Problem Severity Score and Palliative Care Phase. We fitted ordinal logistic regression models to examine the differences in these assessments for dementia versus CVD and lung cancer, respectively.

Results: Overall, patients with dementia generally had low levels of distress from symptoms but poor functional problems. Compared to the other two diagnostic groups, palliative care for dementia was often initiated later and with shorter contacts. Also, patients with dementia presented with poorer functional performance (adjusted OR (aOR) = 4.02, Confidence Interval (CI): 3.68 - 4.38 for dementia vs CVD; aOR = 17.59, CI: 15.92 - 19.44 for dementia vs lung cancer) and dependency (aOR = 5.68, CI: 5.28 - 6.12 for dementia vs CVD; aOR = 24.97, CI: 22.77 - 27.39 for dementia vs lung cancer), but experienced lower levels of distress and problem severity for the majority of symptoms.

Conclusion: Community palliative care is often an ideal care option for many patients, particularly for those with dementia. We call for expansion of the palliative care workforce and options for home care support to optimize accessibility of community palliative care for dementia.

Background: Despite increasing interest in quality end-of-life care (EOLC), critically ill patients often receive suboptimal care. Critical care nurses play a crucial role in EOLC, but face numerous barriers that hinder their ability to provide compassionate and effective care.

Methods: An integrative literature review was conducted to investigate barriers impacting the quality of end-of-life care. This review process involved searching database like MEDLINE, Cochrane Central Register of Controlled Trials, CINAHL, EBSCO, and ScienceDirect up to November 2023. Search strategies focused on keywords related to barriers in end-of-life care and critical care nurses from October 30th to November 10th, 2023. The inclusion criteria specified full-text English articles published between 2010 and 2023 that addressed barriers perceived by critical care nurses. This integrative review employs an integrated thematic analysis approach, which combines elements of deductive and inductive analysis, to explore the identified barriers, with coding and theme development overseen by the primary and secondary authors.

Results: Out of 103 articles published, 11 articles were included in the review. There were eight cross-sectional descriptive studies and three qualitative studies, which demonstrated barriers affecting end-of-life care quality. Quality appraisal using the Mixed Method Appraisal Tool was completed by two authors confirmed the high credibility of the selected studies, indicating the presence of high-quality evidence across the reviewed articles. Thematic analysis led to the three main themes (1) barriers related to patients and their families, (2) barriers related to nurses and their demographic characteristics, and (3) barriers related to health care environment and institutions.

Conclusion: This review highlights barriers influencing the quality of end of life care perceived by critical care nurses and the gaps that need attention to improve the quality of care provided for patients in their final stages and their fsmilies within the context of critical care. This review also notes the need for additional research to investigate the uncover patterns and insights that have not been fully explored in the existing literature to enhance understanding of these barriers. This can help to inform future research, care provision, and policy-making. Specifically, this review examines how these barriers interact, their cumulative impact on care quality, and potential strategies to overcome.

Background: Central pain, characterized by neuropathic pain, can manifest due to injury to the superior spinothalamic tract. The brainstem includes sensory and motor pathways as well as nuclei of the cranial nerves, and therefore cancer metastasis in the region requires early intervention. Although stereotactic radiosurgery (SRS) is commonly employed for the treatment of brain metastasis, it poses risks of late complications like radiation necrosis (RN). RN exacerbates the progression of brain lesions within the irradiated area, and in the brainstem, it can damage multiple nerves, including the superior spinothalamic tract. Central neuropathic pain is often intractable and empirically managed with a combination of conventional drugs, such as serotonin-norepinephrine reuptake inhibitors (SNRIs) and anticonvulsants. However, their efficacy is often limited, leading to a decline in performance status (PS) and quality of life (QOL).

Case presentation: We present the case of a 53-year-old man diagnosed with stage IV lung cancer, referred to our palliative care team for managing severe central pain resulting from SRS-related RN in the pons. Despite administration of opioids, including oxycodone and hydromorphone, and adjuvant analgesics, the patient continued to require frequent use of immediate-release opioids. The addition of methadone alone proved successful in achieving optimal pain control.

Conclusions: Provided that RN in the brainstem can lead to intractable neuropathic pain, it is advisable to avoid SRS for brainstem metastasis when possible. Add-on methadone should be considered as a viable pain management medication for patients experiencing unresolved central pain.

Background: The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death.

Aim: To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden.

Methods: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients ≥ 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used.

Results: Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p  0.001).

Conclusion: The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to ascertain whether they are compatible with good palliative care and a dignified death.

Background: Cancer cachexia is characterized by the loss of body weight (BW) and anorexia. Anamorelin (ANAM) is a selective ghrelin receptor agonist with appetite-enhancing anabolic action. The ONO-7643-05 trial demonstrated that ANAM increased lean body mass and improved anorexia in a Japanese population. However, the clinical outcomes of patients on ANAM have not yet been reported.

Patients and methods: We investigated the clinical outcomes of patients with unresectable, advanced, or recurrent gastrointestinal cancer (colorectal, gastric, or pancreatic cancer) who were treated with ANAM between April 2017 and August 2022. Cachexia was defined as the presence of anorexia and a loss of ≥ 5% of BW within 6 months. To evaluate the response to ANAM, the patients who had discontinued ANAM within 3 weeks were excluded. Response to ANAM was defined as maintenance of or increase in BW and improved appetite from baseline at every 3-week evaluation. We also collected data on the reasons for the discontinuation of ANAM and the correlation between clinical factors and ANAM response. Safety analysis of ANAM was performed for all patients who received ANAM.

Results: Seventy-four patients were included in this study (49 males and 25 females), with a median age of 67.1 years (range, 36-83). The primary tumors were colorectal cancer in 27 (36.5%), gastric cancer in 20 (27.0%), and pancreatic cancer in 27 (36.5%). The Eastern Cooperative Oncology Group performance status was 0 in 10 (13.5%), 1 in 44 (59.5%), and ≥ 2 in 20 (27.0%). The number of previous chemotherapy regimens was 0 in 20 (27.0%), 1 in 22 (29.7%), and ≥ 2 in 32 (43.2%). ANAM was discontinued within 3 weeks in 28 patients for the following reasons: low-grade (grade 1 or 2) adverse events in 15 patients, ileus in three, grade 3 fatigue in one, progressive disease in one, censored follow-up in six, and unknown reasons in three. The proportion of ANAM responders was 63.6% (95% confidence interval, 47.8-77.6%). Among baseline characteristics, age ≥ 75 attenuated the ANAM response (p = 0.03). ANAM responders showed better disease control with chemotherapy than non-responders (75.0% vs. 37.5%, p = 0.02).

Conclusions: ANAM may improve the outcomes of patients with gastrointestinal cancer cachexia in clinical practice.

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care.

Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care.

Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration.

Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location.

Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance.

Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.

Background: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and future CPC need, but quantifying need is hampered by challenges in defining the population in need, and by limited available data. The objective of this paper is to summarise how population-level CPC need is defined, and quantified, in the literature.

Methods: Scoping review performed in line with Joanna Briggs Institute methodology for scoping reviews and PRISMA-ScR guidelines. Six online databases (CINAHL, Cochrane Library, EMBASE, Medline, PsycINFO, and Web of Science), and grey literature, were searched.

Inclusion criteria: literature published in English; 2008-2023 (Oct); including children aged 0-19 years; focused on defining and/or quantifying population-level need for palliative care.

Results: Three thousand five hundred seventy-eight titles and abstracts initially reviewed, of which, 176 full-text studies were assessed for eligibility. Overall, 51 met the inclusion criteria for this scoping review. No universal agreement identified on how CPC need was defined in population-level policy and planning discussions. In practice, four key definitions of CPC need were found to be commonly applied in quantifying population-level need: (1) ACT/RCPCH (Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health) groups; (2) The 'Directory' of Life-Limiting Conditions; (3) 'List of Life-Limiting Conditions'; and (4) 'Complex Chronic Conditions'. In most cases, variations in data availability drove the methods used to quantify population-level CPC need and only a small proportion of articles incorporated measures of complexity of CPC need.

Conclusion: Overall, greater consistency in how CPC need is defined for policy and planning at a population-level is important, but with sufficient flexibility to allow for regional variations in epidemiology, demographics, and service availability. Improvements in routine data collection of a wide range of care complexity factors could facilitate estimation of population-level CPC need and ensure greater alignment with how need for CPC is defined at the individual-level in the clinical setting.

Background: Older cancer patients are vulnerable to poorer health outcomes during cancer treatment. Although the Thai elderly had their own preferences towards future medical care and advance care planning (ACP) could help cancer patients make informed decisions, Thai physicians report a low ACP engagement rate. Thus, this study aimed to explore the perceptions of older cancer patients and their families towards ACP engagement.

Method: We used a qualitative approach to explore the perceptions of non-haematological cancer patients aged ≥ 60 years old and their primary caregivers. The study was conducted at the Oncology Radiotherapy Referral Center, Songklagarind Hospital in Southern Thailand. Semi-structured in-depth interviews were conducted with the patients and their caregivers. Thematic analysis was used to identify and analyze recurring patterns and themes of perceptions regarding ACP engagement within the interview transcripts.

Results: Among the 138 families approached, 32 interviews were conducted. Three themes were found: (1) Advantageous opportunity: the patients believed ACP would help them realize their life values, and ensure that their preference would be respected; (2) contemplation and barriers to ACP: ACP is unfamiliar and unnecessary, might have low utility, worry patients and family members, take away optimism, would not be a proper activity for the patient at the current health situation; and (3) Cues for ACP initiation: perceived conformity with one's religion, awareness of the current cancer state, having multiple comorbidity or experience suffering related with medical care, wishing not to burden family, having close family members, and trust in physicians.

Conclusion: ACP engagement could be hindered or promoted by perceptions of older patients and/ or their family members, as well as the communication skills of the care providers. Care professionals who aim to initiate ACP should minimize the potential barriers, make the ACP benefits salient, and watch for cues indicating a propitious time to start the ACP conversation.

Background: Palliative care evolution focuses on education and medication accessibility. As little as 12% of palliative care needs are met. Assessment of the domains of Palliative care and patients' and families' experience are essential in life-limiting conditions. The Lagos University Teaching Hospital (LUTH), have the National Cancer Centre without offering palliative care services.

Aim: The aim was to examine pattern of admissions and needs assessment for palliative services among patients admitted into LUTH wards.

Materials and method: Responses were entered into a data sheet inputted into Epi info version 7.2. Descriptive characteristics of the participants were presented as frequencies and percentages for age, sex, pattern of disease, domains of Palliative care, Advance care Plan, Preparation for home care, death and Education about the illness and category of medical conditions (palliative and non-palliative conditions). Together for Short Lives (TfSL) tool was used to categorize respondents' conditions into Palliative and Non-palliative conditions. Chi-square test was used to determine association between independent variables (pattern of diagnoses, stage of disease, advanced care plan, preparation for home care/ death and education on illness) and dependent variables (category of medical condition). Chi-square test was also used to explore the association between specialty of the managing doctor (independent variable) and Advance care plan (dependent variable). The level of statistical significance was P-value < 0.05.

Results: 80.6% of the respondents had palliative care conditions, 83.7% had family members as their caregiver while 13.2% of the participants had no caregiver and 65.9% had no advance care plan. There was no preparation for home care or death in 72.1%, 70.5% had education about their illness, and 68.2% were in the advanced stage of their disease. Participants attending the surgery non-trauma unit (51.6%) were more likely to have advance care plans. Adults were more likely to have palliative care conditions (79.8%) compared to children (20.2%), and was statistically significant.

Conclusion: Majority of the participants need palliative care services but are unavailable and unmet and the most predominant condition was cancer. Majority had no advance care plan or preparation for home care or death despite having advanced stage of the disease. This survey emphasized the need for symptom management, communication and provision of support.

Background: A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer?

Methods: Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes.

Results: The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients).

Conclusions: A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.