The American journal of hospice & palliative care最新文献

Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice.

Background: Compassion is a relational response to patients' suffering. Palliative care focuses not only on skills but also on compassion. Nevertheless, incorporated patient perspectives are largely missing from existing research. Aim: Our mixed-method exploratory study in a major Swiss cancer center sought to better understand compassionate presence, its benefits and challenges for patients and providers (ie, close relatives, close friends, and professionals-all referred to here as providers). It also investigated providers' motivation. Method: Twelve multidisciplinary, specially trained professionals interviewed 50 patients who had received compassionate presence. All patients had advanced cancer with risk of death. Providers were also interviewed. Data on the positive and burdensome effects of compassionate presence on patients and providers were gathered using a specific protocol. This also served to record patients' characteristics and providers' motivations to give compassion and whether providers felt sustained (eg, by nature). Results: The study suggests a high impact of compassionate presence with benefits on patients (50/50) and on providers (49/50). Enhanced connectedness was evident not only in the patient-provider relationship (38/50) but also, for instance, in an increased ability to love (8/50) or in an intensified solidarity (29/50). A considerable number of patients and providers experienced mental-spiritual change but also burdensome effects (eg, ambivalences). Providers showed a range of motivations. Conclusion: Compassion is not only necessary in existential crises and near death, but also happens and takes considerable effects precisely in such situations.

Background: In 2019, the São Paulo State Cancer Institute (ICESP) implemented a novel model integrating Oncology with Palliative Care specialists. We evaluated the impact of this model on healthcare resource utilization and costs. Methods: We analyzed data from all patients who passed away in February (1 month prior to implementation) and November (8 months after model implementation group) at ICESP, Brazil. Healthcare utilization data, including emergency department visits, hospital and intensive care unit admissions, chemotherapy, and radiotherapy use, were retrieved from Electronic Medical Records. Unit cost values were obtained from the administrative database. Results: A total of 198 patients who died in February and 196 in November were included in the analysis. Groups exhibited similarities in sex, age, ECOG, cancer type, previous outpatient palliative care consultations, and place of death (ward: 56.6% pre-intervention, 50% post-intervention). The mean cost per patient was US$13,226.29 pre-intervention and US$11,445.82 post-intervention (P = .007). Statistically significant differences were noted in days hospitalized in the surgical ward (227 vs 115), emergency department visits (233 vs 45), chemotherapy sessions (140 vs 26), and radiotherapy sessions (146 vs 10). Excluding outpatient treatments, the total costs for chemotherapy and radiotherapy in the last 30 days of life were US$16,924.45 pre-intervention and US$7851.65 post-intervention. Reductions were more pronounced in patients with ECOG 3-4 (P = .039). Conclusion: Our data suggests that the integration model was associated with a reduction in potentially inappropriate treatments during the last month of life, leading to decreased healthcare utilization and costs.

Background: Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%).

Methods: This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed.

Results: Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (P > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%.

Conclusion: Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.

This article makes a case for examining dying person's visions during wakefulness and their dreams during sleep as separate and unique phenomena. The reason being that the mode of experience, for example, being visited by a deceased loved one while awake and conscious vs having a deceased loved one appear in a dream while asleep, may have a different impact on the dying person. A better understanding of the content and impact of waking visions and sleeping dreams, respectively, may be beneficial to both dying persons and their families.

Objective: Given the importance of advance care planning (ACP) in the context of a pandemic, we aimed to assess current adherence to local policy recommending ACP in all hospitalised adult patients with suspected or proven COVID-19 at Liverpool Hospital, Sydney, Australia.

Design: A retrospective cohort study.

Setting: A tertiary referral and teaching hospital.

Participants: A select sample of adult patients admitted to Liverpool Hospital in 2019-2021 with suspected or proven COVID-19.

Main outcome measures: Proportion of patients with documented ACP and format of ACP.

Results: Amongst 209 patients with proven or suspected COVID-19 hospitalised between March 2019 through to September 2021, median frailty score was 3, the median Charlson Comorbidity Score was 4, median age of the patients was 71 years, and median length of hospital stay was 5 days (range 0-98 days). Almost all patients were tested for COVID-19 (n = 207, 99%) of which 15% (31) were positive. Fewer than a quarter of the patients had documented ACPs (50, 24%) and 17 patients had existing formal advance care directives. Patients who had ACP were older, more likely to be frail and more likely to have higher rates of comorbidity compared to those without ACP. ACP was more commonly discussed with family members (41/50) than patients (25/50) and others (5/50).

Conclusion: Adherence to the local ACP policy mandating such discussions was low. This reinforces the need for prioritising ACP discussions, especially for unwell patients such as those with COVID, likely involving further input to improve awareness and rates of formal documentation.

Background: There are missed opportunities to discuss goals and preferences for care with seriously ill patients in the acute care setting. It is unknown which factors most influence clinician decision-making about communication at the point of care.

Objective: This study utilized a cognitive-interviewing technique to better understand what leads clinicians to decide to have a goals of care (GOC) discussion in the acute care setting.

Methods: A convenience sample of 15 oncologists, intensivists and hospitalists were recruited from a single academic medical center in a large urban area. Participants completed a cognitive interview describing their thought process when deciding whether to engage in GOC discussions in clinical vignettes.

Results: 6 interconnected factors emerged as important in determining how likely the physician was to consider engaging in GOC at that time; (1) the participants' mental model of GOC, (2) timing of GOC related to stability, acuity and reversibility of the patient's condition, (3) clinical factors such as uncertainty, prognosis and recency of diagnosis, (4) patient factors including age and emotional state, (5) participants' role on the care team, and (6) clinician factors such as emotion and communication skill level.

Conclusion: Participants were hesitant to commit to the present moment as the right time for GOC discussions based on variations in clinical presentation. Clinical decision support systems that include more targeted information about risk of clinical deterioration and likelihood of reversal of the acute condition may prompt physicians to discuss GOC, but more support for managing discomfort with uncertainty is also needed.

Background: While frailty is a well-established predictor of overall mortality among patients with metastatic non-small cell lung cancer (mNSCLC), its association with patient-reported outcomes is not well-characterized. The goal of this study was to examine the association between an electronic frailty index (eFI) score and patient-reported outcome measures along with prognostic awareness among patients with mNSCLC receiving immunotherapy. Methods: In a cross-sectional study, patients with mNSCLC who were on immunotherapy completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30) and the National Cancer Institute Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). We utilized bivariate analyses to compare quality of life, symptoms, supportive services, and prognostic awareness among 3 groups defined by e-frailty status. Results: Sixty patients (mean age 62.5 years, 75% Caucasian, 60% women) participated. Most patients were pre-frail (68%), with 13% being frail and 18% non-frail. Pre-frail and frail patients had significantly lower physical function scores (mean 83.9 fit vs 74.8 pre-frail vs 60.0 frail, P = .04) and higher rates of self-reported pain (75% frail vs 41.5% pre-frail vs 18.2% fit; P = .04) compared to non-frail patients. We found no differences in palliative referral rates. Conclusion: Pre-frail and frail mNSCLC patients identified by the eFI have higher rates of pain and physical functional impairments than non-frail patients. These findings highlight the importance of emphasizing preventive interventions targeting social needs, functional limitations, and pain management, especially among pre-frail patients to reduce further decline.

Background: The (ECOG) performance status (PS) is commonly used to evaluate the functional ability of patients undergoing antitumor therapy. An ECOG PS of 2, indicating patients capable of self-care but restricted strenuous activity, can complicate treatment decisions owing to concerns regarding treatment-related toxicity. We investigated whether frailty assessment could help discriminate treatment tolerance and survival outcomes in patients with an ECOG PS of 2.

Methods: We prospectively included 45 consecutive patients, aged ≥65 years, with an ECOG PS of 2, and newly diagnosed solid cancer scheduled for chemotherapy. Frailty was assessed using an eight-indicator geriatric assessment. The primary outcome was overall survival (OS) based on frailty status; secondary outcomes included treatment tolerance and toxicity.

Results: The median patient age was 73 years (range 65-94), and 71% had stage IV disease. Predominant frailty-related deficits were functional decline (96%), malnutrition (78%), and polypharmacy (51%). The median OS was 12.6 months (95% confidence interval [CI]: 6.8-18.4). Patients with 4-6 deficits had significantly lower OS than those with 1-3 deficits (9.9 months vs. 20.0 months, adjusted hazard ratio 2.51, 95% CI: 1.16-5.44, P = .020). Frailty significantly correlated with reduced 12-week chemotherapy competence (52% vs. 85%, adjusted odds ratio [OR] .14, 95% CI: .03-.70, P = .016) and enhanced risk of unexpected hospitalization (60% vs. 20%, adjusted OR 6.80, 95% CI: 1.64-28.1, P = .008).

Conclusion: Our findings highlight the multifaceted nature of patients with an ECOG PS of 2 and emphasize the importance of frailty assessment for treatment outcomes.

Context: In kidney therapy (KT) decisions, goal-concordant decision-making is recognized to be important, yet alignment with patients' goals during dialysis initiation is not always achieved.

Objectives: To explore older patients' and caregivers' hopes, goals, and fears related to KT and communication of these elements with members of their health care team.

Methods: The study included patients aged ≥75 years with an estimated glomerular filtration rate ≤25 mL/min/1.73 m2 and their caregivers enrolled in a palliative care intervention for KT decision-making. Patients and caregivers were asked open-ended questions about their hopes, goals, and fears related to KT decisions. A survey assessed if patients shared their goals with members of their health care team. Qualitative data underwent content analysis, supplemented by demographic descriptive statistics.

Results: The mean age of patients (n = 26) was 82.7 (±5.7) years, and caregivers (n = 15) had a mean age of 66.4 (±13.7) years. Among the participants, 13 patients and 11 caregivers were women, and 20 patients and 12 caregivers were White. Four themes emerged: (1) Maintaining things as good as they are by avoiding dialysis-related burdens; (2) seeking longevity while avoiding dialysis; (3) avoiding pain, symptoms, and body disfigurement; and (4) deferring decision-making. Patients rarely had shared their goals with the key members of their health care team.

Conclusion: Patients and caregivers prioritize maintaining quality of life, deferring decision-making regarding dialysis, and avoiding dialysis-related burdens. These goals are often unshared with their family and health care teams. Given our aging population, urgent action is needed to educate clinicians to actively explore and engage with patient goals in KT decision-making.