The American journal of hospice & palliative care最新文献

BackgroundBreathlessness is a distressing and prevalent symptom in fibrotic interstitial lung disease. Dyspnea management requires systematic assessment including patients' lived experiences; however, most dyspnea tools are point-in-time numerical severity scales. The Edmonton Dyspnea Inventory was developed to assess severity at rest, during activities of daily living and self-reported activities. It enables documentation of crisis dyspnea episodes and triggers clinicians to guide action plans and dyspnea management. This study is part of a larger project to validate the tool. The purpose was to describe patient perceptions of assessment of breathlessness of patient use of the tool.MethodsPatients with fibrotic interstitial lung disease were invited to share their perceptions and experiences of breathlessness and the tool. Focus groups were led on Zoom©, with patient-participants in their homes. Data were analysed with inductive content analysis for development of themes.ResultsThirteen patients participated in 2 focus groups. There were 4 major themes, each with minor themes: physicians need to explicitly ask about breathlessness; the tool conveys breathlessness and disease progression; the tool increases self-awareness of breathlessness and complexity; and the tool helps prevent crises and manage breathlessness. Patient-participants perceived the tool provided the needed language and means to focus and relay their breathlessness to others.ConclusionPatient-participants reported the tool was easy to understand and integrate in daily living. They recommended its use for general and specialized practitioners. Developed to assess breathlessness, the tool may provide a framework to promote patient self-awareness, describe individual progression, and tailor breathlessness self-management.

Obstetricians face significant emotional and professional challenges caring for pregnant women experiencing fetal life-limiting diagnoses or fetal demise. Many physicians are uncomfortable offering the emotional support parents need during an unexpected end-of-life neonatal situation. Physicians who deliver life-changing bad news to families experience significant emotional and physical stress. We conducted an obstetrician needs assessment documenting interest in an educational curriculum that could enhance physician comfort and competency in communication skills; particularly for fetal abnormalities, challenging deliveries with poor outcomes, providing condolences to bereaved families and supporting colleagues after adverse outcomes. Patient-centered care requires prioritizing the needs and autonomy of each patient. Ensuring patients receive comprehensive informed consent regarding fetal diagnosis/prognosis and all available treatment options including continuing the pregnancy, termination, compassionate induction based on gestational age and personal wishes in cases of life-limiting fetal diagnoses , and delivery options including labor induction vs dilation and evacuation (D&E) is essential. We identified significant barriers. Some providers were reluctant to present termination as an option for life-limiting fetal diagnosis before 24 weeks of gestation. Many residents and faculty lacked sufficient training in the D&E procedure. The COVID-19 pandemic had disrupted essential hospital support resources. Our obstetrics residency program implemented a joint quality improvement initiative and educational research study. We collaborated with a community perinatal hospice/bereavement support organization to develop an obstetrician educational curriculum. We emphasized teamwork and consistency in delivering parent-centered bereavement care and support. To our knowledge, no similar program specific to an obstetrical residency program has been previously published.

BackgroundOutpatient palliative care provides supportive care to community-dwelling patients with serious illness who are not eligible or ready for hospice. Little is known about the services these clinics offer and the populations they serve. We conducted a cross-sectional study of outpatient palliative care clinics in Michigan to describe their services and identify gaps in care.MethodsWe identified 19 palliative care programs in Michigan whom we surveyed by mail. Programs were asked to report all outpatient palliative care clinics, their locations, operating practices, volumes, staffing, and service areas. The survey was anchored on the year 2021. We used descriptive statistics to summarize subjects' responses and a Geographic Information System (GIS) to map clinic locations.ResultsPalliative care programs in Michigan reported a total of 33 outpatient clinics in predominantly urban and suburban regions. Clinics operated an average of 3 half-days per week with an average of 119 new patient visits per year (range 6-477). Most clinics (93%) were able to conduct visits via telehealth. Nineteen (59%) accepted non-cancer diagnoses and thirteen (41%) accepted children. Only 2 (5%) saw patients with chronic pain without serious illness. Twenty-six (81%) had physicians, fourteen (60%) had advanced practice providers, and eleven (55%) had social workers on staff.ConclusionThere is limited access to outpatient palliative care in Michigan, especially in rural communities. Many clinics do not accept non-cancer or pediatric patients. Additionally, many clinics lack the full interdisciplinary team that is required to provide robust palliative care.

IntroductionEmpathetic end-of-life (EOL) communication is important for high quality pediatric patient and family outcomes. Trainees may have limited exposure and training in caring for patients at EOL which may impact communication-related stress. This study had 2 aims: (1) describe pediatric resident physician EOL exposure and training (2) measure objective and subjective stress during simulated critical communication encounters and the impact of prior communication training/exposures on stress responses.MethodsWe performed a prospective, pilot observational cohort study measuring physician exposure to caring for patients/families at EOL and simulated communication stress. Simulated stress was measured subjectively using the state-trait anxiety inventory (STAI) and objectively using heart rate variability (HRV) during a communication training intervention.Results85.7% (18/21) of residents reported seldom/never caring for patients at EOL and universally felt ill-prepared to provide care. Subjective and objective stress increased when directly communicating with the simulated parent/patient actor compared to baseline in all HRV domains. Residents with limited exposure to patients/families at EOL had a smaller stress response than those who cared for a substantial number.ConclusionsPediatric residents report limited opportunities to communicate with patients/families at EOL, which may impact stress responses when communicating life-altering news to families. Simulated communication encounters can be designed to evoke subjective and objective stress which can be measured using novel technology and may help address limited EOL opportunities.

BackgroundAdvance care planning (ACP) is especially important in the context of cognitive impairment. Little is known about long-term effects of ACP on care partners.AimTo determine the sustained effect of facilitated ACP conversations on care partner-reported quality of communication (QoC) about end-of-life (EoL) care and readiness to engage in ACP at 24-months.DesignA total of 273 participants were randomized 1:1 to a multicomponent ACP intervention (SHARE) or usual care. ACP was delivered between baseline and 6 months and dyads were followed through 24 months (N = 114). Outcomes included care partner responses to the 7-item QoC instrument and 6-item readiness to engage in ACP instrument. Group differences at 24 months were compared using ANCOVA, adjusting for baseline scores and cognitive impairment.Setting/participantsCognitively impaired older adults age 80+ and family care partners were recruited from 8 primary care clinics.ResultsCare partners were mostly women (91.2%), average 65.5 years old, and adult children (66.7%) of the patient. 114 (42.8%) care partners completed 24-month assessments; One fifth of patients died within 24 months (n = 61; 22.3%). Caregiver QoC scores at 24 months were similar for intervention and control groups (3.34 vs 3.18; P = 0.92). Similarly, readiness to engage in ACP was comparable for intervention and control groups (26.63 vs 25.64; P = 0.67).ConclusionsACP conversations did not significantly affect QoC or readiness to engage in ACP at 24 months follow-up in this randomized trial. ACP may require an iterative approach for ongoing benefit in this population.

BackgroundVirtual reality (VR) can improve patient well-being in palliative care. However, little is known about VR's impacts on hospice patients & caregivers, personalized VR experiences, and shared VR experiences.ObjectiveThis pilot study uses Tandem VR^TM-shared, synchronized and personalized VR experiences-to test impacts on well-being and fear of death and dying.DesignPre-post pilot study with a one-time VR experience using personalized 360° videos.Setting/Participants11 patient-caregiver dyads were recruited in a home-based Hospice care setting in a rural area of the U.S. South.MeasurementPatients and caregivers completed the McGill Quality of Life Questionnaire-Expanded (MQOL-E) and Revised Collett-Lester Fear of Death (CL-FODS) before and after the VR intervention. Due to the small sample size and exploratory pilot nature of the study, formal statistical testing was not conducted. Interpretation focused on the direction and magnitude of change, with an emphasis on clinically meaningful shifts in MQOL-E and CL-FODS subscales.ResultsPatients and caregivers reported improvements in the MQOL-E Single Item Scale (+1.35 for patients; +1.27 for caregivers on a 10-point scale). Caregivers showed improvements in the CL-FODS Fear of Other's Death subscale (-0.49 on a 5-point scale), but patients showed exacerbated scores for the CL-FODS Fear of Own Dying (+0.50 on a 5-point scale).ConclusionTandem VR^TM showed potential to support quality of life in patient-caregiver dyads and fear of other's dying for caregivers. Further research is needed on supporting patients nearing the end of life to process missed opportunities available in VR.

BackgroundPalliative care consultation (PCC) improves quality of life for patients with cancer, yet access and delivery vary across hospital settings.ObjectiveThe objective of the study is to examine sociodemographic, clinical, and palliative consult characteristics among oncology inpatients receiving PCCs across community hospitals and academic medical centers.MethodsWe conducted a retrospective cohort study of 961 oncology inpatients who received PCC at five hospitals within a single academic health system (2022-2024). Data were extracted from electronic health records and PCC service metrics. Logistic regression compared predictors of PCC delivery between community hospitals and academic medical centers.ResultsAmong 961 patients, substantial differences by hospital type emerged. Patients receiving PCC at academic centers were more likely to be younger, male, Black or African American, and to have private insurance (P < .05). Other malignancies were more commonly managed with PCC in academic settings (P < .05). Academic medical centers more frequently addressed symptom management and patient or family support, whereas community hospitals more often focused on goals of care discussions.ConclusionThese findings demonstrate significant differences in PCC delivery associated with hospital type, despite shared service line structures. Understanding how site-level factors influence PCC delivery may guide targeted strategies to ensure timely and comprehensive palliative care for oncology inpatients across different care environments.

ObjectiveMost family caregivers have never heard of palliative care, making it challenging for clinicians to introduce the subspecialty. The purpose of this study was to explore family caregivers' palliative care knowledge, exposure, and preferred messaging for an introduction to palliative care.MethodsSemi-structured phone interviews with family caregivers of patients eligible to receive palliative care were conducted.ResultsKnowledge of palliative care was significantly associated with having heard about and being offered palliative care. Caregiver exposure to palliative care was associated with age and race, with older, White caregivers significantly more likely to have heard about palliative care compared to Hispanic caregivers. Caregivers positively endorsed all message strategies designed for introducing palliative care.ConclusionsAll five introductory messaging strategies in this study were positively received by participants, providing initial direction for clinicians on how to tailor introductory messaging about palliative care.

BackgroundIndividuals with intellectual and developmental disabilities experience substantial disparities across the cancer care continuum, including delayed diagnosis, limited access to supportive resources, and heightened psychosocial distress. These challenges are intensified in high-acuity settings where care models are not adapted to their developmental and cognitive needs.MethodsWe describe an interdisciplinary, patient-centered approach to the care of a 34-year-old patient with developmental delay and metastatic adenocarcinoma. Key strategies emphasized education, preparation, and communication tailored to her cognitive abilities. Collaboration with her family informed effective strategies to reduce distress and improve compliance.ResultsTailored interventions - including simplified communication, visual supports, and continuity of providers - improved the patient's coping, reduced distress, and enabled completion of comprehensive oncologic evaluation and treatment.ConclusionsThis case demonstrates that structured, interdisciplinary, patient-centered approaches to care can mitigate disparities and support equitable, compassionate care for individuals with intellectual and developmental disabilities facing serious illness.