BMC Palliative Care最新文献

Background: Acute myeloid leukemia (AML) remains an aggressive malignancy, despite advancements in diagnosis and treatment. Early integration of palliative care has been shown to alleviate symptom burden and enhance quality of life among patients and their caregivers. However, palliative care remains underutilized, especially in hematologic malignancies. This study aims to determine the rate of inpatient palliative care utilization among hospitalized patients with AML and to identify predictors of inpatient palliative care utilization.

Methods: This retrospective study utilized data extracted from the National Inpatient Sample database from 2016 to 2020. Adult patients diagnosed with acute myeloid leukemia (AML) and recipients of palliative care services were identified through the International Classification of Diseases, 10th Revision (ICD-10) coding system. Sociodemographic, hospital-related, and clinical characteristics were summarized using frequencies and percentages. Binary logistic regression analysis was performed to determine independent predictors of inpatient palliative care utilization.

Results: There were 121,892 hospital admissions of patients with a primary diagnosis of AML. Of these, 460 patients (0.3%) received inpatient palliative care services. Among those receiving palliative care, most were aged ≥ 65 years (59.8%), male (53.3%), White (83.1%), and privately insured (40.2%). In multivariable analysis, older age (OR 1.57; 95% CI 1.23-2.01; p < 0.001), private insurance (OR 1.43; 95% CI 1.33-1.53; p < 0.001), receipt of chemotherapy or stem cell therapy (OR 4.13; 95% CI 3.28-5.20; p < 0.001), and inpatient mortality (OR 8.80; 95% CI 6.86-11.28; p < 0.001) were independently associated with increased palliative care utilization. While non-White race (OR 0.70; 95% CI 0.61-0.81; p < 0.001), treatment in certain hospital regions (OR 0.75; 95% CI 0.67-0.83; p < 0.001), and shorter length of stay (OR 0.60; 95% CI 0.47-0.76; p < 0.001) were associated with lower utilization.

Conclusion: Inpatient palliative care remains markedly underutilized among patients with acute myeloid leukemia. Sociodemographic, economic, hospital, and clinical factors significantly influence its utilization. Addressing these disparities through targeted interventions and institutional policies may enhance palliative care integration, potentially improving symptom management, quality of life, and overall care outcomes for patients with AML.

Background: High-quality person-centred communication for those living with serious illness benefits patients, families, and health care professionals (HCPs). However, research suggests that HCPs often find it challenging to engage in these discussions. The purpose of this study is to assess the effectiveness of the 'All providers Better Communication Skills' (ABCs), an online blended learning program delivered over three months. The ABCs program seeks to complement existing programs by adopting an interprofessional and person-centred educational philosophy, teaching core communication skills that can be utilized by any clinician across many conversations and healthcare settings, and investigating outcomes focused on clinician's skill acquisition and behavior change.

Methods: We will conduct a Canada-wide prospective stepped-wedge randomized controlled trial with interprofessional HCPs. All participants will receive the intervention, however, there will be a delay in the intervention for those randomly assigned to the control group. Our study will measure change in pre and post intervention scores for all participants. The primary outcome consists of external expert rater assessments of participants' video-recorded Standardized Patient (SP) encounters using the validated Assessment of Clinical Encounters - Communication Tool. Secondary outcomes include: participant self-assessments on self-efficacy using the validated Self-Efficacy-12 measure, as well as competence using the Patient and Family-Centered Communication subscale from the validated End-of-Life Professional Caregiver Survey; and SP ratings using the validated Questionnaire on the Quality of Physician-Patient Interaction and Feeling Heard and Understood measures. Learning experience and perceived usability of the program will also be assessed through the validated Blended Learning Usability Evaluation - Questionnaire and semi-structured interviews following program completion.

Discussion: This study is a national trial evaluating the effectiveness of a communication program for interprofessional HCPs. This research will generate evidence on ways of improving conversations about serious illness. With improved communication skills, clinicians can better support patients and families in their illness understanding, deliver care that better aligns with their patients' goals and values, improve care-related outcomes and experiences, and optimize healthcare resources - all of which can support health system strengthening.

Trial registration: https://clinicaltrials.gov/study/NCT06606470 .

Background: Quality of death (QoD) in palliative care is a critical yet understudied area of healthcare in China, shaped by complex cultural, familial, and clinical factors. As an emerging medical specialty, palliative care in China increasingly emphasises holistic and person-centred approaches. The understanding of what constitutes a good death in clinical settings however, remains largely Western-centric and is often implicitly defined within unique Chinese sociocultural contexts.

Methods: In-depth, semi-structured interviews were collected from 27 multidisciplinary end-of-life care practitioners across China, including doctors, nurses and social workers. Inductive thematic analysis was conducted to explore the key components of good QoD and the factors influencing it within Chinese hospice and palliative care settings. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) to ensure rigour and transparency.

Results: Three themes emerged: (1) providing care with dignity through relationships, balancing respect for patients with cultural expectations and medical realities; (2) enhancing communication within family dynamics, involving indirect communication styles, managing family conflicts, and balancing transparency with cultural norms; and (3) negotiating intergenerational dilemmas, where generational differences in attitudes toward death and dying create tensions in care decisions. These findings reveal the challenges that practitioners may face in respecting patient autonomy while addressing family-centred values and medicalised norms.

Conclusion: The study highlights the importance of improving communication about death and dying, promoting public education on end-of-life care, and tailoring palliative services to integrate Western clinical approaches with traditional Chinese family-centric values to enhance QoD.

Aim: This study aimed to investigate the factors associated with the completion of advance directives among cancer patients.

Background: Despite legislation to support end-of-life decision-making, the completion rate of advance directives (AD) in South Korea remains low. In many cases, family members make end-of-life decisions on behalf of patients. To promote patient autonomy and reduce family burden, early initiation of AD discussions is essential.

Methods: Survey data on demographics and factors related to AD completion were collected through a written survey administered by the researchers from 148 cancer patients at a tertiary hospital between November 2, 2023, and March 10, 2024. Data analysis included frequency, percentage, mean, standard deviation, χ²-test, independent t-test, Pearson's correlation coefficient, and multivariate logistic regression.

Results: Compared to patients aged 70 and older, those under 60 were 0.18 times as likely, and those aged 60 to 69 were 0.27 times as likely, to complete an AD. Patients with a middle school education or less were 12.46 times more likely to complete an AD than those with higher education levels. Having prior experience discussing the withdrawal of life-sustaining treatment during the death of a loved one increased the likelihood of completing an AD by 18.64 times. Additionally, each 1-point increase in psychological and formal Readiness for Death was associated with a 6.78-fold increase in the likelihood of completing an AD. Age, education level, prior experience, and particularly Readiness for Death were found to be associated with AD completion among cancer patients.

Conclusions: AD completion among cancer patients was associated with age, education level, prior discussion of LST withdrawal, and Readiness for Death. These findings highlight factors that may inform future interventions to support patient autonomy via increased uptake of ADs.

Background: In contemporary approaches to incurable illness, death and dying, health care systems constitute the dominant context. However, an expanding body of literature recognizes these experiences as principally social events, thereby placing greater emphasis on the social wellbeing of individuals confronted with incurable illness. This shift has prompted greater interest in the potential role of the wider community and social professionals in palliative care. Therefore, this study focuses on the social wellbeing of patients with incurable illness in the palliative phase, as well as that of their primary family caregivers.

Methods: In-depth interviews were conducted with 14 participants (patients and primary family caregivers). Qualitative content analysis was used to identify themes and meaning.

Results: This study demonstrates that meaningful relationships, acknowledgement of one's situation and the ability to determine one's own level of involvement in society are essential for the social wellbeing of patients and family caregivers confronted with incurable illness. Relationships with lay persons and participation in society play a crucial role in this context, while relationships with and support from health care providers are also relevant. This is embedded within the broader societal context, reflecting how society as a whole approaches and empowers patients and families facing incurable illness. For most participants, asking for help and being cared for was neither self-evident nor straightforward, which may challenge ideas that advocate for greater community involvement in end-of-life care.

Conclusion: Lay persons constitute an essential component in fostering the social wellbeing of individuals living with incurable illness and their families. Furthermore, the quality of communication and relationships with healthcare providers, employers, and institutions, along with the prevailing societal attitudes towards incurable illness, caregiving, death, and dying, is of considerable significance and should be given careful attention.

Background: End-of-life care is an essential component of cancer care. Good end-of-life care improves quality of life for the dying individuals and their loved ones. This study aimed to compile a list of quality indicators (QIs) endorsed by experts, for assessing the quality of end-of-life care for cancer patients in Malaysia.

Methods: Eligible QIs were first identified through a scoping review, which formed the basis for a five-round online modified Delphi survey that was undertaken to reach expert panel agreement. Firstly, the relevance of each QI was rated by a panel comprising healthcare professionals (HCPs) in oncology and palliative care, caregivers, and patient advocates using a 9-point Likert scale. Secondly, the feasibility of extracting these indicators from medical charts was evaluated using the same rating scale; this was assessed only by HCPs due to their familiarity with the documentation practices. QIs with a median score ≥ 7 and with ≥ 75% of rating ≥ 7 were considered endorsed.

Results: Of the 47 experts invited, 39 participated (response rate 83.0%): 31 HCPs, five caregivers and three patient advocates. From an initial list of 64 indicators, 31 were endorsed across 10 domains, including measures related to: symptom management such as pain, dyspnoea, and other physical symptoms (e.g., assessment of delirium and agitation) (n = 11/64); psychological and social aspects of care (e.g., depression assessment) (n = 2/64), treatment modalities (e.g., antiemetics for chemotherapy) (n = 1/64); hospital and community palliative care services (e.g., home care visits) (n = 5/64); advanced care planning (e.g., resuscitation preference) (n = 2/64); continuity and coordination of care (e.g., multidisciplinary team consultation) (n = 5/64); place of death and care (e.g., preferred place of death) (n = 4/64); and medications for respiratory secretion (n = 1/64). Some unendorsed indicators included those from the domains of hospitalisation (e.g., intensive care unit admission) (n = 3/64) and spiritual care (e.g., spiritual needs assessment) (n = 2/64).

Conclusions: A comprehensive set of 31 indicators was identified. These QIs can be used for evaluating the quality of end-of-life care received by cancer patients and serve as a foundation for future quality improvement initiatives. Further studies are needed to validate these QIs in real-world clinical practice and assess the feasibility and reliability of extracting these indicators from medical charts.

Background: Children with palliative care conditions and their families have complex care needs. In Norwegian municipalities, designated coordinators facilitate cooperation between health and social care services to ensure a holistic approach to meeting these needs. However, information is limited concerning how coordinators perform their duties and the factors influencing their work performance.

Aim: To explore coordinators' experiences and perceptions of factors influencing their work performance in relation to children's palliative care (CPC) in municipalities.

Methods: Semi-structured interviews were conducted with 11 coordinators for children in palliative care and analysed using a reflexive thematic analysis approach.

Results: Both internal and external factors influenced the coordinator's work performance, and they experienced a range of barriers in their efforts to achieve holistic care. Four themes were generated: 'random knowledge on children's palliative care', 'the abstract concept of coordination', 'striving to unite the fragmented whole' and 'aiming for tailored coordination'. A lack of training and experience in CPC is widespread among the coordinators. Additionally, the municipal systems seem inadequately developed to address the needs of children in palliative care and their families.

Conclusion: Strengthening coordination in municipalities for children in palliative care and their families requires that coordinators receive systematic training in CPC and further development of their support systems.

Background: Compassion is often described in literature as an indication of quality of care, and it is imperative in the healthcare context, more specifically in the practice of palliative care. This scoping review aimed to identify assessment tools for compassion available in the context of palliative care and describe the psychometric characteristics of the identified assessment tools.

Methodology: A Systematic Review of Literature, a Scoping review. A search was performed in PubMed, CINAHL, MedicLatina, Scopus, Web of Science, and PsycARTICLES computerized databases on March 9, 2022. The participants included were adults, the concept considered was "compassion assessment instruments," and all studies conducted in the context of palliative care were considered. The protocol was obtained from The Joanna Briggs Institute.

Results: A total of 1371 publications were identified. Of these, only five fulfilled the inclusion criteria. The information was collated in tabular form. Of the five publications selected, only one comprised the original development of the scale, where the other four included studies on palliative care, where the scales were used. It was possible to obtain the original publications in which the scales were developed. Therefore, five instruments for assessing compassion in palliative care were identified: "Patient Assessment of Physician Compassion"; "Sinclair Compassion Questionnaire"; "Compassion from Others Scale"; "Santa Clara Brief Compassion Scale"; "Compassion Scale".

Conclusion: Only one compassion assessment scale has been developed for palliative care. In addition, of the other four instruments, only one was developed in the healthcare context. This research also indicates that the assessment of compassion in palliative care is recent. The only instrument developed in the context of palliative care was created in 2021, and the first article to describe the assessment of compassion in palliative care was developed in 2018. It also concluded that the assessment of compassion in the field is important, whether from the perspective of the patient or from the perspective of the professional. The instruments have good or excellent internal consistency.

Background: Residential aged care is increasingly becoming the final place of care for many older adults in high-income countries. For many families, grief begins well before the death of their loved one, emerging as early as the time of entry into residential care. This grief often continues as they witness ongoing decline and deterioration and extends into bereavement following the resident's death. While caregiver grief is well recognised, there is limited understanding of how these experiences unfold across this full journey and the specific challenges families face at each stage. This study explored the grief, loss and bereavement needs of family caregivers of people who are about to enter, living in, or have died in a residential aged care facility.

Methods: This qualitative study used semi-structured interviews and focus groups with family caregivers and residential aged care staff. Data were managed using NVivo and analysed using reflexive thematic analysis approach.

Findings: Thirty eight participants (n = 28 staff members; and n = 10 family caregivers) from nine residential aged care services participated in the study. Five themes developed from the data: (i) grief manifests early and is associated with the loss of caregiver role; (ii) grief and emotional strain arise in transition, creating support needs; (iii) timely communication and tailored care shapes grief experience at end-of-life; (iv) inclusive after-death rituals support meaningful closure; and (v) relational support and community sustain families in grief. Participants highlighted the complexity of grief and loss experienced by family caregivers throughout their loved one's journey in residential aged care, from admission to death.

Conclusions: Establishing culturally sensitive, timely, and open conversations about death and dying while fostering strong and supportive relationships between staff, caregivers, and residents is crucial in helping family caregivers navigate their grief, loss, and bereavement.