The American journal of hospice & palliative care最新文献

ObjectivesThe COVID-19 pandemic complicated hospice and palliative care (HPC) experiences of patients and family caregivers. We sought to understand HPC professionals' perceptions of patients' and family caregivers' HPC experiences during the COVID-19 pandemic in New York City and to make recommendations for improving HPC delivery during future public health crises.MethodsThis was a qualitative descriptive study among a purposive, multidisciplinary sample of HPC team members at two large New York City metro hospice care organizations and one outpatient palliative care practice. Following individual interviews, we analyzed demographic data using descriptive statistics and interview data using inductive thematic analysis.ResultsParticipants (n = 30) included nurses, physicians, social workers, chaplains, community health workers, and administrators and averaged 17 years in their profession and 10 years in HPC. Three themes characterized their perspectives on patient and family caregiver HPC experiences. Grappling with Tensions captured strains arising from a time of high patient/family needs and low HPC resources that related to care resources/delivery, patient-caregiver-HPC communication, and hospice policy/guidelines. Managing Dilemmas involved negotiating difficult choices around prioritizing patients for care by diagnosis/need, balancing necessary care and exposure risks, and prioritizing patient visitors (family/professionals). Experiencing Amplifications described intensification of existing HPC challenges including distressing deaths, misconceptions of hospice, family caregiver burden/distress, racial/ethnic disparities, and staff workload and turnover.ConclusionsTo strengthen HPC delivery during crises that disrupt in-person HPC, we recommend enhancing continuity of care, expanding telehealth within hybrid care models, providing structured training and support for family caregivers, improving equitable access to high-quality HPC, and addressing workforce issues.

BackgroundThe goal of palliative care (PC) is to reduce suffering and improve quality of life for patients with life-limiting illnesses and their families. Prior studies consistently demonstrate high symptom burden among PC patients; however, most evidence comes from cancer populations outside the US, leaving a gap in large-scale US data across disease groups.MethodsWe conducted a retrospective cohort study using quality metrics from a large, nonprofit hospice agency in the US Northeast. The study included 5871 patients who received palliative care services and had at least one Edmonton Symptom Assessment Scale (ESAS) assessment between July 2022 and December 2023. Five symptoms are described by severity on a 0-10 scale in a sample with malignant and non-malignant diagnoses.ResultsWe observed high prevalence of pain (34.3%), anxiety (32.3%), and dyspnea (28.0%) at first consultation. Many patients also reported moderate (4-6) or severe (7-10) intensity for pain (17.6% and 16.7%, respectively). Symptom burden also varied across disease groups: patients with solid tumors (63.3%) and liver disease (57.5%) exhibited particularly high rates of pain, while heart (46.9%) and lung disease (66.8%) exhibited high dyspnea. Among the 2852 patients with repeated consultations, there was substantial symptom improvement for pain (33.1% of patients), anxiety (22.1%), and dyspnea (19.3%).ConclusionPalliative care patients experience high symptom burden, varying by diagnosis. Planning access to tailored PC services to meet varying physical and emotional needs at a population level remains critical.

IntroductionAdvanced heart failure (HF) often requires comprehensive home-based management, including attention to palliative care needs. Early identification of these needs can improve symptom control, safety, and quality of life for patients and families.PurposeThe purpose is to examine end-of-life (EOL) and palliative care needs in the context of home-based HF management using systematic nursing observations and valid assessment questionnaires.MethodsThis descriptive, observational study assessed home palliative care needs among 18 patients with HF and their family caregivers enrolled in a rural Appalachian clinical trial. Data sources included questionnaires and nurses' observation notes. Home palliative care needs were assessed using: (1) the Integrated Palliative Care Outcome Scale (IPOS) to capture symptom burden; (2) EOL goals and preferences to identify care priorities; (3) a home safety checklist to evaluate environmental risks; and (4) nurse observation notes to document home visits and care challenges.ResultsPatients with HF exhibited high symptom burden and home safety gaps. IPOS scores indicated persistent physical and psychosocial symptoms, with partial patient, caregiver concordance on EOL priorities but notable deficits in advance care planning. Nurse observations revealed additional HF care challenges, including medication adherence and emotional distress. Combining standardized assessments with nurse observations provided a comprehensive view of home-based palliative care needs.ConclusionIntegrating patient and caregiver perspectives with nurse-led assessments enables proactive, home-based interventions that improve safety, symptom control, and shared decision-making. These strategies are essential for delivering patient-centered palliative care for individuals with advanced HF.

Symptoms of hyperactive delirium (HD) including restlessness, agitation, hallucinations, and delusions, can be very distressing to patients and their caregivers. HD has been shown to increase as death approaches in inpatient care settings, but less is known about HD in home hospice settings where care is often provided by informal caregivers. Objective: Characterize instances and severity of HD symptoms during home hospice patients' last week of life. Using a mixed-methods approach, care records chronicling 24/7 care decisions of 101 hospice patients were reviewed to gain a deeper understanding of HD and caregivers' experiences with HD symptom management and care provision. Using the Confusion Rating Scale (CRS) and Nursing Delirium Screening Scale (NDSS) as guides, patient records were reviewed to identify incidents of HD. HD incident severity was assessed both quantitatively via frequency of symptoms per day and total incidents in the last week of life and qualitatively through thematic analyses of caregiver descriptions of incidents. HD symptoms were referenced in 32.6% of patients (N = 29). Among those who received care for at least 7 days prior to their death (N = 19), a total of 133 HD incidents were recorded. HD symptoms increased steadily in the last week of life and caregiver narratives described challenges with symptom management. The frequency and severity of HD symptoms described illustrate significant challenges to caregivers, underscoring the need for additional caregiver support in the last week of life to improve quality care for home hospice patients experiencing HD.

PurposeHospice care is a patient- and family-centered approach to end-of-life care that prioritizes comfort, symptom management, and psychosocial support while foregoing curative treatment. Hospice care improves quality of life and care at the end of life. Despite its benefits, hospice remains underutilized by racially and ethnically diverse people, sexual and gender minorities, and socioeconomically marginalized populations.FindingsGuided by the Social Ecological Model, the objectives of this narrative review are to (a) discuss disparities in hospice care use, (b) explore multidimensional levels and factors contributing to such disparities, and (c) outline implications and imperatives for improving access to and use of hospice care. This review revealed that hospice care disparities are shaped by interacting factors across societal, structural, healthcare system, interpersonal, and individual levels. Historical context, policy design, geographic and socioeconomic constraints, clinician communication, and cultural beliefs collectively influence patterns of access, timing, and utilization of hospice care. System-level solutions include integrating hospice referrals into routine care workflows, improving hospice-related policies, strengthening partnerships with community organizations, and transitional care research. Clinicians are uniquely positioned to identify care preferences, advocate for timely referrals and support the hospice transition, and build trust with patients and families at the end of life.ConclusionsEfforts across clinical settings, policy, and research are critical to improving hospice care use, and ensuring that all seriously ill individuals benefit from goal-concordant, high-quality hospice care. Reducing hospice care disparities will require coordinated, multilevel interventions that address policy and healthcare system factors while strengthening hospice-related communication and care.

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.