Journal of palliative medicine最新文献

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.

Background: Loneliness and social isolation coexist, making it difficult to study each separately. The COVID-19 lockdown provided an unprecedented and ethically viable opportunity to study loneliness in seriously ill nursing home residents under uniformly imposed social isolation conditions. Objective: To understand the phenomenon of loneliness of the seriously ill nursing home patients under a uniform social isolation condition imposed by the COVID-19 pandemic lockdown. Design: Cross-sectional, semi-structured interviews were tape-recorded, transcribed verbatim, and analyzed qualitatively using an inductive thematic analysis. The University of California, Los Angeles (UCLA) Three-Item Loneliness Scale was used to measure loneliness and any relationships between self-reported loneliness and isolation were elucidated. Setting/Participants: Thirty seriously ill nursing home residents living in complete social isolation imposed by the COVID-19 pandemic lockdown. Results: Thematic analysis identified four key themes: (1) Diverse perceptions about the impact of the COVID-19 lockdown, (2) regret over the missed opportunities for spending time with friends and family, (3) using electronic communication to maintain connections with loved ones, and (4) the impact of nursing home staff. In total, 50% of the participants reported feeling socially isolated, 60% patients reported loneliness, and 70% reported being adversely impacted by the lockdown. Patients who felt socially isolated also reported experiencing loneliness (Kendall's Tau = 0.61, 95% confidence interval [CI] = 0.30, 0.89, p < 0.01, large effect size). Persons from communities of color had higher median loneliness scores compared to Non-Hispanic Whites. Participants in the last year of life also reported higher levels of loneliness. Conclusion: A study of loneliness under uniform social isolation conditions in seriously ill nursing home patients showed a high prevalence of loneliness and a strong correlation between self-reported loneliness and social isolation, especially in persons from minority communities and those in the last year of life. In-person support provided by nursing home staff and virtual support from family was helpful to patients.

Background: Tele-assisted home-based palliative care (THPC) usually fulfills the desire of terminal patients to pass away at home. The overall costs of such a service deserve evaluation. Objectives: This study aims to determine health care utilization and costs for cancer patients at the end of life, stratified by THPC service. Design: Patients who received THPC were matched 1:1 based on age, gender, year of death, and propensity score with those who did not receive THPC. Setting/Subjects: A total of 773 cancer patients passed away in a regional hospital in Taiwan during the period of 2012-2020, of which 293 received THPC. Measurements: We measured the rates and costs of outpatient clinic visits, emergency department (ED) visits, hospitalizations, and intensive care unit (ICU) admissions during the last week, the last two weeks and the last month before death. In addition, we estimated the driving times and expenses required for transportation from each cancer patient's home to the hospital using Google Maps. National Health Insurance (NHI) reimbursements and out-of-pocket expenses were also calculated. Results: In comparison with patients without THPC, those who received THPC had a 50% lower likelihood of visiting the ED or being hospitalized, a more than 90% reduced chance of ICU admission, but were four times more likely to obtain their medicines from outpatient clinics. THPC patients had similar out-of-pocket expenditures, approximately half of the NHI costs, and lower rates and costs for ambulance transportation to the ED. Conclusions: THPC reduced health care costs for terminal cancer patients in the last week, the last two weeks, and the last month before death, while also increasing the likelihood of patients being able to rest and pass away at home.

Background: Impaired health states can limit a person's mobility, often progressively for people with life-limiting illnesses. Quantifying mobility changes is crucial for individual clinical care and service planning. Objective: To explore any correlation between EQ-5D-5L's mobility dimension ratings and Life-Space Assessment (LSA) from a population sample. Methods: An online population survey of Australian adults, nationally-representative by key demographics. An analysis of variance examined each level of the EQ-5D-5L mobility dimension rating against its LSA scores; Kendall's Tau assessed correlation. Results: Participants (n = 6366) were 53% women, mean age 46.1 years (SD 18.6), and mean LSA score 78.0 (SD = 27.5; possible range 0-120). At each EQ-5D-5L mobility dimension level there was a significant difference between LSA scores (p < 0.001), and a moderate negative correlation (Kendall's tau b = -0.342) between the two measures. Conclusion: Given the relationship defined, EQ-5D-5L mobility dimension ratings may prompt clinicians to consider further evaluation with the more detailed Life-Space Assessment. .

Introduction: Endosonography-guided biliary drainage (EUS-BD) serves as a rescue treatment modality for patients with malignant biliary obstruction when endoscopic retrograde cholangiopancreatography (ERCP) fails. Objectives: This study explores the effects of EUS-BD on liver function and quality of life (QoL). Patients and Methods: Patients with malignant biliary obstruction and failed ERCP were enrolled to undergo EUS-BD. QoL, including pruritus severity, was evaluated using EQ-5D-5L and PSS-10 questionnaires before and after EUS-BD. Serum bilirubin and liver function tests were measured on the procedure day, two days, and at least 14 days post-procedure. Results: During a 20-month study period, 1755 ERCPs were performed, with 595 for malignant cases. Of these, 49 underwent EUS-BD following failed ERCP, and 37 (54% women, age range 34-87 years) completed the 14-day follow-up. Pancreatic cancer was the most common (49%) condition, and the median hospital stay was 4 days. Serum bilirubin, alanine aminotransferase, aspartate aminotransferase, alkaline phosphatase, and gamma-glutamyl transferase significantly decreased 2 and 14 days after EUS-BD (all p < 0.001). Pruritus significantly improved, with an average reduction of 5.19 points on the PSS-10 scale two weeks post-procedure (p < 0.001). EUS-BD led to improvements in anxiety and depression according to the EQ-5D-5L (p = 0.013). Conversely, deteriorations were observed in the Mobility, Self-Care, and Usual Activities domains over time (all p < 0.05). Successful EUS-BD enabled the resumption of chemotherapy in 11 (30%) patients. The median post-procedure survival was 112 (range 27-1030) days. Conclusions: EUS-BD improves liver parameters and some aspects of life quality in patients with malignant biliary obstruction, thereby increasing their eligibility for optimal palliative care.

Background: Some commentators and several professional medical associations have expressed concern that legalizing medical aid in dying ("MAID") will undermine patient trust in the medical profession, particularly among historically disadvantaged patient populations. While this concern remains influential, it has been subject to limited empirical scrutiny. Objectives: This study aims to empirically assess whether MAID legalization undermines patient trust, with considerations of potential trust/demographic correlations in marginalized and minority patient populations. Design: We developed an RCT survey study that assessed patients' trust in the medical professional using the Abbreviated Wake Forest Scale ("AWFS"). Two versions of the survey were used, each distributed at random to half of participants. One survey version included notification that MAID had been legalized in the jurisdiction where patients were receiving care and the other version omitted this information. Setting/Population: We surveyed capacitated, English-speaking adult patients who were receiving care at a not-for-profit, 912-bed academic and research hospital in Washington, D.C. Of those invited to participate, 494 patients (63.2%) completed all AWFS questions, and 70.1% identified as Black or African American and 32.9% as having a physical or mental disability. Conclusions: Most of the participants not notified that MAID was legal in DC were not aware of this fact (92.5%). Patients who were notified that MAID was legal in DC were significantly more likely to report approval of MAID legalization (p = 0.0410), but showed no significant difference in AWFS score for trust in their physicians. The study did not substantiate concerns that legalizing medical aid in dying undermines patient trust in the medical profession.

Addressing the psychiatric aspects of serious illness in palliative care (PC) is crucial to both care delivery and outcomes. Psychiatric comorbidities are common among patients with PC needs and can significantly impact their total burden of symptomatic distress, overall quality of life, functional independence, and healthcare utilization. Yet, these aspects of care are often deferred to mental health consultant teams in the context of busy PC services and often limited human resources. To provide comprehensive and person-centered care, PC clinicians must understand the interplay between medical conditions and psychiatric presentations within a biopsychosocial framework to respond empathically, efficiently, and effectively. This article is the first of a two-part series developed in collaboration with a group of psychiatric-palliative care specialists. This article explores ten common physical manifestations of psychiatric illness and treatment among patients facing serious illnesses. The second article will provide pragmatic tips PC clinicians should know about the psychiatric manifestations of nonpsychiatric serious illness and treatment. Combined, these two articles support a holistic approach that PC clinicians can use to prioritize and integrate both mental and emotional well-being throughout the continuum of serious illness.