The American journal of hospice & palliative care最新文献

BackgroundIn palliative care, drug delivery methods must be simple, rapid and acceptable especially in homecare settings to relatives as non-professional caregivers. This study compared intranasal (IN) and subcutaneous (SC) administration performed by medical laypersons under standardized conditions.Methods31 volunteers without medical training participated in a non-randomised crossover study. After receiving instructions, participants performed both SC and IN administration in a simulated environment using placebo medication. Primary endpoints were preparation and administration time. Secondary endpoints included perceived ease, comfort, safety and handling difficulties. Data were collected using structured questionnaires. Statistical analyses used paired t-tests and binomial testing.ResultsAll participants (27 female, median age range 50-60 years) completed both procedures. Mean administration time: 4:49 minutes (SD 1:20) for SC, 1:16 minutes (SD 0:20) for IN (p < .001, d = 2.97). >90% preferred IN and rated it as easier (30/31, 97%), more comfortable (30/31, 97%), faster (30/31, 97%) and safer (21/31, 68%). SC was consistently rated more complex (30/31, 97%) and cumbersome (30/31, 97%). Handling errors were more frequent with SC application. Nearly half of participants (15/31) had prior SC experience, while all had personal experience with nasal sprays, though not in administering them to another adult. Participants emphasized the importance of training for safe and accurate administration.ConclusionMedical laypersons strongly preferred IN over SC administration. IN was significantly faster, more acceptable and associated with fewer handling problems. These findings support IN administration as a practical and caregiver-friendly alternative in palliative care.Clinical Trial NumberNot applicable.Trial Identification173-02, protocol Version 02, 03.11.2022.

BackgroundDignity therapy (DT) is effective in addressing dignity-related existential distress in people with advanced cancer, but the traditional protocol assumes supportive family structures, uses heteronormative language, and requires synchronous clinician facilitation. These features may limit accessibility for LGBTQ+ individuals. This pilot study evaluated the feasibility and acceptability of a self-written, tele-delivered LGBTQ+-affirming DT adaptation.MethodsLGBTQ+ women with advanced cancer completed the adapted protocol and a post-protocol survey asking both quantitative and qualitative data. Feasibility outcomes included completion rates and time from opening the survey to submission. Acceptability was assessed using items from the DT Patient Feedback Questionnaire, and user experience was explored with open-ended questions.ResultsEight participants completed all study activities (100% completion). Mean time from opening to submitting the protocol was 34.3 h (SD = 57.3), with a median of 4.4 h. Most participants strongly agreed that the intervention was helpful (n = 6/8), satisfying (n = 7/8), and meaningful (n = 6/8), and all reported an increase in dignity; six were likely to recommend it to other LGBTQ+ individuals with cancer. Qualitative responses described the intervention as fostering reflection, emotional expression, decision-making, and a sense of being honored, while also eliciting complex emotions and highlighting preferences for affirming language (eg, "family of choice") and interpersonal connection.ConclusionThis pilot demonstrated that a self-written, tele-delivered LGBTQ+-affirming DT adaptation was feasible and acceptable for LGBTQ+ women with advanced cancer. Future research should refine language and relational elements and evaluate this approach in larger, more diverse LGBTQ+ samples.

ContextHospice is a core component of end-of-life care in the United States, designed to provide comprehensive support for patients and their families. While utilization has expanded, concerns remain about whether growth has translated into equitable access. Geographic, socioeconomic, and organizational factors, such as ownership and quality, may shape the availability and type of hospice care patients receive.ObjectivesTo examine geographic and sociodemographic disparities in access to hospice providers across Pennsylvania, a geographically and demographically diverse state.MethodsThis study used 2023 Centers for Medicare & Medicaid Services (CMS) Provider of Services data to identify hospices by ownership type and quality rating. Provider addresses were geocoded, and 60-minute drive-time catchments were generated. Census tract-level hospice access was assessed using the Getis-Ord Gi* statistic to identify cold spots, defined as clusters of tracts with significantly lower access relative to statewide patterns. Tract-level sociodemographic characteristics were drawn from the 2023 American Community Survey, and mean differences were evaluated using two-sample t-tests.ResultsIn total, 2.3 million Pennsylvanians, or 17% of the state population, reside in census tracts classified as cold spots. Cold spots were concentrated in rural and socioeconomically disadvantaged regions. Compared with other tracts, cold spot tracts were lower income, less educated, older, more reliant on public insurance, and less racially diverse. Patterns were consistent when restricting to high quality hospice and nonprofit hospices.ConclusionGeographic disparities in hospice access compound existing sociodemographic inequities. Addressing these inequities will require efforts to expand high-quality hospice availability in underserved communities.

ObjectiveWe designed a survey to determine the prevalence of sexual dysfunction among cancer patients and to understand the gaps in provider-patient communication.MethodsAn IRB-approved 36-item survey was distributed through the Jefferson Recruitment Enhancement Service team and social media. Questions assessed the impact of cancer treatment on sexual health, provider communication, how sexual health was assessed, and possible interventions. Chi-square test or Fisher's exact test were used to compare the group differences with a P-value threshold (α) of 0.05 for statistical significance.Results916 patients responded to the survey, with most being diagnosed with breast (n = 271, 29.6%) and prostate cancer (n = 358, 39.1%). 71.8% of patients experienced an impact on sexual function by cancer treatment. Most experienced issues with their sexual desire, body image, arousal, comfort during intercourse, and ability to achieve orgasm (α < 0.001). Only 35.5% reported being asked about their sexual health by an oncologist and only 22.2% were given a questionnaire to assess their sexual health (α < 0.001). 49.8% of breast patients and 15.4% of prostate patients were never told their sexual health could be affected by their cancer treatment (α < 0.001). 60.3% of prostate patients were formally asked about their sexual health by an oncologist compared to 21.4% of breast patients (α < 0.001). 74% of respondents stated it is essential for oncologists to speak to patients about sexual health.ConclusionCancer survivors believe it is important for providers to discuss sexual health. However, providers are more inclined to address sexual health concerns with male patients than with female counterparts.

Intracerebral hemorrhage (ICH) is a neurosurgical ailment regarded to possess a high degree of mortality and long-term complications in patients. Despite the abundance of literature on the use of PC for neurological disorders, there remains a gap in the literature examining the use of this care specifically for patients with ICH. Herein, we conducted a narrative review of 30 included studies within the literature to examine the utilization of PC in patients with ICH. Through greater awareness, acknowledgement, and formalized training in PC skills for neurosurgeons, the needs of patients and their families suffering from ICH can be better managed and orchestrated.

This narrative article navigates through a not-so-common scenario in India of bringing a pet dog to a tertiary care hospital to meet patient's wishes. It involves how honoring dignity at end of life care can bring happiness to patient and how it positively impacted his family. This experience reminded me how non-pharmacological measures to preserve dignity at the end of life are as important as taking pharmacological steps to provide symptom relief.

BackgroundPatients in intensive care units (ICU) frequently face severe distress and complex ethical dilemmas, underscoring the critical role of palliative care. Despite growing international attention on ICU-based palliative care, the attitude of palliative care specialists remains unclear. In Japan, although ICU physicians express willingness to collaborate, actual engagement with palliative care teams is limited. To support palliative care integration in the ICU, understanding specialists' perspectives on its provision to ICU patients is critical.ObjectivesWe examined the attitudes, confidence, motivation, and perceived barriers among Japanese palliative care specialists regarding their provision of care in the ICU.DesignWe conducted a nationwide cross-sectional survey.Setting/SubjectsConducted in Japan in June 2023, targeting 335 board-certified palliative care physicians.MeasurementsAttitudes, confidence, motivation, and perceived barriers were assessed using a self-administered questionnaire with five-point Likert scales. Descriptive statistics with 95% confidence intervals were generated.ResultsResponses from 218 physicians were received (65.0% valid response rate). Among these, although 65.5% agreed that palliative care is important even when curative goals are present, <30% reported confidence in prognostication, symptom management, or understanding ICU culture. Motivation to engage in ICU care was also limited. Primary barriers identified were lack of reimbursement (77.2%) and insufficient ICU-specific education (72.5%).ConclusionDespite acknowledging its importance, Japanese palliative care specialists demonstrate limited preparedness for ICU-based palliative care. Our findings highlight an urgent need for specialized education, improved interdisciplinary collaboration, and removal of financial disincentives, including the absence of reimbursement for ICU palliative care consultations under Japan's health insurance system.

ObjectiveReview the current teaching methods, curricula, and assessment tools for pediatric palliative care (PPC) within the pediatrics intensive care setting for pediatric critical care medicine (PCCM) trainees as it pertains to the following domains: (1) Symptom management, (2) Communication, (3) Spiritual/Psychosocial, (4) End of Life (EOL).Data SourcesPubMed, Cochrane CENTRAL, EMBASE, and PsycINFO were searched for articles reporting on PPC educational curricula or interventions for residents and fellows in pediatric intensive care settings. The search strategy used a combination of MeSH terms and keywords to search for items that addressed intensive care, pediatrics, palliative care, residents or fellows, and education.Study SelectionCurricula that includes PCCM trainees (fellows and residents) nationally and internationally.Data ExtractionCovidence.Data SynthesisOf 105 articles reviewed, 6 articles addressed PPC education in the PICU between 2015 and 2025. All 6 articles were United States-based and included simulation curricula focused on communication regarding EOL care. Evaluation tools varied across articles. There is a paucity of data around complex symptom management, communication on topics other than EOL, and spiritual and psychosocial education.ConclusionsSimulation focused on communication and EOL care is frequently used to teach PPC knowledge and skills to PCCM fellows and residents. Currently varied evaluation methods exist with limited PPC domains. This review highlights the need for future PPC curricula development for PCCM trainees.

BackgroundPalliative care in community settings can support seriously ill individuals to reduce symptoms and maintain quality of life. However, many individuals decline palliative care, even when they have health concerns. Differences in understanding how palliative care can help manage serious illness may contribute to declining.ObjectiveThis study explores the relationship between individuals' understanding of palliative care, their health concerns, and education levels (a proxy for health literacy).MethodsWe use survey responses from a validated instrument assessing palliative care knowledge and information from semi-structured interviews for 21 seriously ill individuals (n = 3) and family caregivers (n = 18) who were eligible for community-based palliative care services and declined. We explore the relationship between respondents' education, understanding of palliative care, and their concerns about their or their loved one's health.ResultsAmong participants, twelve had a bachelor's degree or more; nine had some college or less. Six participants with some college or less expressed concerned about stress from serious illness. Of these, half (n = 3) did not understand palliative care could help. Conversely, five participants with a bachelor's degree concerned about stress understood palliative care could help. Seven participants with some college or less expressed concerned about medication side effects; four did not understand palliative care could help. Conversely, three participants with a bachelor's degree concerned about medication knew that palliative care could help.ConclusionAssessing health concerns and explaining how palliative care can address those concerns may reduce barriers to accepting palliative care, particularly among individuals with lower levels of education.

IntroductionCaring for chronically or terminally ill individuals comes with unique challenges and circumstances that are specific to each situation and individual involved. Studies on caregiving have often concentrated on the negative physical and emotional impacts on caregivers, while more recent literature depicts a more complex and multidimensional experience. The purpose of the current study was to better elucidate the scope of challenges and benefits attributed to caring for a loved one with a serious, life-limiting illness.MethodsA total of 18 informal family caregivers were enrolled in this study, which used a semi-structured interview format. Interviews were conducted at the participants' place of residence, all within New York State (United States of America). All interviews were audio-recorded, transcribed, and analyzed using inductive thematic analysis with consensual qualitative research components. The qualitative analysis team was comprised of three core members and one outside auditor.ResultsFour main themes emerged: (1) Burdens on the Caregiver, (2) Navigating Caregiving, (3) The Positives, and (4) Evolution of Relationships. Additionally, the latent theme of Cognitive Dissonance was identified across interviews.DiscussionFindings suggest that family caregivers of individuals with terminal or life-limiting illness experience complex, and often contradictory feelings, which may differ from perceptions by those not providing similar care to a loved one. The data suggest that clinicians working with the caregiving population should explore the duality of caregiving beyond just the anticipated negative impacts.