Journal of palliative medicine最新文献

Introduction: Sexual and gender minority (SGM) individuals face increased risk of receiving suboptimal care, including palliative care. Despite research demonstrating strategies to improve care, little is known about the experiences of palliative care clinicians providing care to these communities. Objectives: The primary aim of this study is to characterize attitudes and practices of palliative care physicians around providing care to SGM individuals. Design: This exploratory, qualitative study used semi-structured interviewing. Interviews were transcribed and coded using reflexive thematic analysis. Setting and Participants: Twenty-four palliative care physicians practicing in the homecare, hospice, and hospital settings from geographically diverse sites across Canada were recruited from palliative care organizations using convenience and snowball sampling. Results: Four main themes represent perspectives on improving palliative care for SGM individuals: (1) increasing experience with and knowledge about SGM communities increases clinicians' confidence and competency; (2) standardizing inclusive sexual orientation and gender identity (SOGI) data collection and documentation can improve patient care; (3) addressing individual, systemic, and societal biases may improve palliative care provided to SGM individuals; and (4) knowing SOGI improves care quality. Conclusions: Clinicians must familiarize themselves with the importance of SOGI to the care provided as well as the palliative care needs of SGM communities. Institutions should provide tailored training around the unique needs of SGM patients and implement policies and tools that standardize sexual and gender orientation data collection and documentation.

Background: Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. Objectives: To explore worries/concerns in children with advanced cancer and their parents. Design: This was a part of a larger, mixed-methods study examining shared decision-making. Setting/Subjects: Children (of age 5-25) with advanced cancer (i.e., relapsed/refractory disease or physician estimated prognosis of <60%) and their parents in the Midwestern United States. Measurements: Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. Results: Parent and child worries/concerns included: (1) prognosis, (2) symptom burden and side effects of treatment, (3) emotional well-being, (4) impact on future, and (5) no concerns/uncertainty (child-only theme). Benefit-finding emerged as a minor theme. Many expressed concerns about treatment response, resulting in worries about death/dying. Others shared fear about managing current symptoms and the impact of long-term treatment side effects on the child's future. Parents reported worry about their child's emotional well-being, while children expressed worries about their families if they died. While all parents were able to identify worries/concerns, some children denied worries/concerns. Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. Conclusions: Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.

Background: Population-based methods to identify patients with serious illness are necessary to provide equitable and efficient access to palliative care services. Aim: Create a validated algorithm embedded in the electronic medical record (EMR) to identify hospitalized patients with serious illness. Design: An initial algorithm, developed from literature review and clinical experience, was twice adjusted based on gaps identified from chart review. Each iteration was validated by comparing the algorithm's results for a subset of patients (approximately 10% of the populations screened in and screened out on a given day) with the expert consensus of two independent palliative care physicians. Settings/Subjects: The final algorithm was run daily for nine months to screen all hospitalized adults at our academic medical center in the United States. Results: Compared with the gold standard of expert consensus, the final algorithm for identifying hospitalized patients with serious illness was found to have a sensitivity of 89%, specificity of 82%, positive predictive value of 80%, and negative predictive value of 90%. At our hospital, an average of 284 patients a day (54%) screened positive for at least one criterion, with an average of 38 patients newly screening positive daily. Conclusions: Data from the EMR can identify hospitalized patients with serious illness who may benefit from palliative care services, an important first step in moving to a system in which palliative care is provided proactively and systematically to all who could benefit.

Background and Objectives: Mixed success with primary palliative care delivery models may be related to inadequate communication between members of the care team. We sought to describe the previously unexamined role of oncologists in an oncology nurse-led primary palliative care intervention study. Design, Setting, and Subjects: We conducted a secondary analysis of data from Care Management by Oncology Nurses to Address Supportive Care Needs, a cluster-randomized controlled trial of a nurse-led primary palliative care intervention for adults with advanced cancer conducted at 17 community oncology clinics in Western Pennsylvania from 2016 to 2020. Nurses conducted three monthly study visits during which they developed care plans (CPs) with the patient and after which they updated the patient's oncologist. We characterized the level of oncologist involvement with the intervention. Results: Of the 336 patients randomized to receive primary palliative care, 266 completed at least one study visit and 233 (88%) had at least one visit where the oncologist was updated afterward. Across 674 total study visits, the oncologist was updated in 553 (82%) of the visits, signifying the oncologist awareness of the intervention. Of the times the nurse updated the oncologist, a CP was presented 29% of the time (163/553). Conclusion: In a large trial of oncology nurse-led primary palliative care, oncologists were often aware of but infrequently involved with the intervention. Future primary palliative care interventions should consider communication and engagement among team members.

Introduction: Aggressive end-of-life (EOL) care for cancer patients can lead to increased hospitalizations and worse quality of death, while goals of care (GOC) discussions including EOL care conversations are associated with fewer hospitalizations and increased hospice use. During hematology-oncology training, fellows should develop communication skills that include eliciting and documenting patients' GOC to provide quality care during EOL. We aimed to determine the frequency of documentation of GOC discussions in fellow's clinics as well as characteristics of EOL care. Methods: This study was conducted at an academic cancer center where year 1-3 fellows retrospectively reviewed patient medical records from July 2016 to June 2017 to identify patient deaths and collect information on hospitalizations, treatment, and place of death to analyze relationships with GOC discussions. Results: Out of 103 patient deaths, 48 (47%) had documented GOC discussions, 69 (67%) patients were enrolled on hospice, and 20 (19%) had an advance directive. GOC discussions were associated with higher hospice enrollment and advance directive documentation and lower hospitalizations. Conclusions: All fellows had at least one patient who died in their patient panels, but less than half of patients had documented GOC discussions. Fellowship programs should consider incorporating quality improvement measures and communication skills training to ensure fellows have competence in GOC communication and EOL care delivery.

Patient sexuality and intimacy comprise important dimensions of quality of life (QOL), making them essential topics for palliative care (PC) clinicians to address. Created with interprofessional input from PC, urology, gynecology, sexual health, oncology, psychiatry, psychology, nursing, and social work, this article offers 10 high-yield, evidence-based tips to better equip PC clinicians to address sexuality and intimacy for patients with serious illness. These tips highlight skills such as opening discussions, assessing concerns through a biopsychosocial model, and thinking through appropriate interventions to improve QOL.

Purpose: This study was undertaken to determine the nature of the relationship between psychological resilience and spiritual well-being (SWB) among family caregivers (FCs) of patients with terminal cancer. Methods: This multicenter cross-sectional study included 173 FCs from nine inpatient hospice care units. SWB was assessed using the Functional Assessment of Chronic Illness Therapy-Spiritual well-being questionnaire, and various psychosocial variables, including psychological resilience, were also measured. Factors associated with SWB were identified by multivariate regression analysis adjusted for potential covariates. Results: Various factors were found to be associated with the SWB of FCs as determined by total FACIT-Sp-12 scores and the scores of its three domains. FC resilience was significantly associated with SWB as determined by total FACIT-Sp-12 scores and scores of the meaning and peace domains. Conclusion: Assessing FC psychological resilience would help palliative care providers improve their SWB.

Background: Patients with severe coronavirus disease 2019 (COVID-19) often rapidly deteriorate with severe dyspnea and should receive early specialist palliative care (SPC) as intensive symptom management may be required at the end of life. Currently, there is a paucity of data identifying triggers for early SPC involvement. Objective: To identify risk factors among nonventilated patients with severe COVID-19 who required high opioid and/or benzodiazepines (BZD) use for the control of dyspnea. Methods: This is a retrospective cohort study of nonventilated patients with COVID-19 admitted to the National Centre for Infectious Diseases in Singapore and seen by SPC between January 2021 and July 2022. We collected baseline demographics, comorbidities, 4C mortality score (International Severe Acute Respiratory Infection Consortium-Comprehensive Clinical Characterization Collaboration [ISARIC-4C]), and COVID-19 vaccination status. Clinical and laboratory results, dyspnea by numerical rating scale, and palliative-related treatments were recorded at the first SPC review, when symptoms peaked, and the last SPC review. Patients with morphine equivalent daily dose (MEDD) of ≥45mg and/or BZD use for dyspnea control were grouped as high users, while patients with MEDD <45mg and no BZD use were low users. Results: Among 234 patients, 119 (50.9%) were high users. Multivariate analysis showed that subjects with higher dyspnea (odds ratio [OR] 1.74, 95% confidence interval [CI] 1.45-2.08) and lower ISARIC-4C scores (OR 0.77, 95% CI 0.67-0.88) at first SPC review were predictive of high users. High users also required higher supplemental oxygen and had higher inpatient mortality rates. Conclusions: High dyspnea score is predictive of high opioid and/or BZD use for symptom control in nonventilated patients with severe COVID-19. Such patients with high mortality rates should be seen early by SPC.

Background: Summary statistics often hide individual patients' suffering, thereby impeding quality improvement efforts. Objectives: We aimed to show the experience of a population with health care toward the end of life while preserving the experience of the individual. Design: We developed a data display method called per-patient illness trajectory analysis. We tested it using a demonstration cohort of 192 patients with cancer referred to a regional Swedish specialized home-based palliative care practice. Chart review provided detailed information about illness trajectory events with a focus on unplanned hospitalization. Results: We created per-patient timelines spanning from cancer diagnosis until death and using a logarithmic scale: Compared with a conventional, linear timescale, this scale expands the time resolution toward the end of life. The method fosters the assessment of unmet palliative care need and care quality for individuals, small high-need groups, and populations. Conclusion: In populations of up to 200 people, per-patient illness trajectory analysis is feasible and promising. Using random sampling, it could be extended to larger populations.