Journal of palliative medicine最新文献

Objectives: The aim of this study was to investigate from the perspective of palliative care (PC) patients with cancer, the frequency of sexual dysfunction (SD) and their views regarding the communication with their physicians. Design, Setting, and Participants: Adult PC patients with cancer seen at a Supportive Care Clinic in the United States were invited to participate in a survey about SD. Results: A total of 100 patients completed the survey. Only 29% would like to discuss SD with a clinician, even though 81% experienced it in the previous year, and 55% were dissatisfied with their sexual function. Only 20% reported that their clinician ever asked them about SD. Most (79%) considered appropriate to be inquired about SD, but only 32% thought it should always be asked. Conclusions: Our findings do not support the notion that PC specialists should always initiate a discussion about SD with their PC patients with cancer.

Introduction: There is limited understanding of critical care (CC) and specialist palliative care (SPC) professionals' perceptions regarding the role and utility of SPC for patients on extracorporeal membrane oxygenation (ECMO). Methods: An 18-item survey was distributed via convenience sampling and snowballing strategies to CC and SPC attendings working with veno-venous ECMO patients. Results: A total of 75 surveys were completed. Many CC professionals indicated that SPC consultation was not routinely helpful (5% vs. 71%, p < 0.05). Responses varied on the appropriateness of discussing SPC with patients/families prognosis (81% SPC vs. 47% CC, p < 0.05), end-of-life preferences (100% vs. 62%, p < 0.05), goals of care (95% vs. 58%, p < 0.05), and code status (76% vs. 43%, p < 0.05). Conclusion: Most respondents indicated that psychosocial support and multidisciplinary team collaborations were within the SPC scope. CC professionals were less likely to indicate that discussion of the care trajectory with patients/families was within SPC scope.

Background and Objectives: Spiritual care is an essential component of care for the terminally ill, because of its potential to positively impact patient perception of quality of life and dignity. However, it continues to be the least cultivated or even most overlooked aspect of palliative care and end of life. We performed a methodological review using bibliometric analysis to provide a holistic view of the scientific output published on this topic in the literature at the same time outlining present perspectives and research trends. Methods: In accordance with the BIBLIO checklist for reporting the bibliometric reviews of the biomedical literature, pertinent articles were retrieved from the Web of Science (WOS) database. The search string included "spiritual care," "end of life," and their synonyms. The VOSviewer (version 1.6.17) software was used to conduct comprehensive analyses. Semantic and research networks, bibliographic coupling, and journal analysis were examined. Results: A total of 924 articles were identified in WOS, and 842 were retrieved. An increasing trend in the number of publications is observed from 1981 to date, with a peak in the 2019-2021 timeframe. Most articles focused on palliative care, spirituality, spiritual care, religion, end of life, and cancer. The Journal of Pain and Symptom Management contributed the highest number of published documents, while the Journal of Palliative Medicine was the top-cited journal. The highest number of publications originated from collaborations of authors from the United Kingdom, the United States, and Australia. Conclusion: The remarkable increase in the number of publications on spiritual care observed in the years of the COVID-19 pandemic likely reflected global concerns, reasserting the importance of prioritizing spiritual care for whole-person palliation. Spiritual care is integrated with palliative care, in line with the latter's holistic nature and the recognition of spirituality as a fundamental aspect of end-of-life care. Nurses and chaplains exhibited more involvement in palliative-spiritual care than physicians reflecting the belief that chaplains are perceived as specialized providers, and nurses, owing to their direct exposure to spiritual suffering and ethos, are deemed suitable for providing spiritual care.

Background: New treatment options for patients with locally advanced pancreatic cancer (LAPC) have proven to be safe but, in addition, may have an effect on the patient's quality of life. Objectives: To evaluate the effect of stereotactic body radiotherapy (SBRT) combined with intradermal heat-killed mycobacterium obuense (IMM-101) vaccination on health-related quality of life (HRQoL), pain, and sleep, in patients with LAPC. Design: Prospective cohort study. Setting/Participants: In total, 42 Dutch patients with LAPC were included after completion of at least four cycles of (m) leucovorin calcium (folinic acid), fluorouracil, irinotecan hydrochloride, and oxaliplatin (FOLFIRINOX). Measurements: Quality of life was assessed with the EORTC QLQ-C30. Patients completed the Richard Campbell Sleep Questionnaire (RCSQ) for five consecutive nights and wore simultaneously a GENEActiv tri-axial accelerometer, which registered sleep duration and sleep efficiency. The Numeric Rating Scale was used to assess pain intensity during treatment. Data were collected at the baseline visit [i.e., at inclusion in the study after (m)FOLFIRINOX treatment] and at week 8 (i.e., 6 weeks after start date of SBRT and after four IMM-101 vaccinations). Results: Univariable linear mixed model analysis revealed significant improvement for EORTC QLQ-C30 items "cognitive functioning" and "emotional functioning." Outcomes on RCSQ subscales and "RCSQ total score" did not significantly change. In the multivariable model, with "Global HRQoL scale" and "RCSQ total score" as outcomes, we did not find a significant change during treatment. Conclusion: In this prospective cohort study, we found that SBRT combined with IMM-101, in patients with LAPC, is well tolerated and does not negatively affect HRQoL, sleep quality, and pain.

Objective: We present a case of a patient with an intrathecal pump who experienced an unrecognized partial pocket fill, leading to an atypical opioid withdrawal characterized by akathisia. Case Report: A 57-year-old female with multiple myeloma presented to an emergency department with new-onset akathisia requiring admission. Eight weeks prior, her intrathecal pump was refilled with morphine, bupivacaine, and ziconotide. After a thorough evaluation, her pump reservoir was found to be empty despite an expected residual volume of 10 mL. Furthermore, she reported sedation following her last pump refill, all consistent with an unrecognized partial pocket fill followed by an unusual opioid withdrawal presentation. Conclusions: This case represents an example of both an unrecognized partial pocket fill and an atypical presentation of opioid withdrawal manifesting as akathisia. Furthermore, this patient's case may be considered a medical error given the serious morbidity that can be associated with inadvertent pocket fills.

Background: Despite the increasing focus on goal-concordant care in the emergency department (ED), there is limited data about patients who receive a new hospice referral and the care paths of patients on hospice who present there. Objective: Describe the characteristics and clinical course of ED patients who receive a new hospice referral and those already receiving hospice care. Methods: Retrospective chart review of all adult patients presenting to the ED from January 2021 to July 2023. Results: Six patients received a new hospice referral. Of these, four had a primary diagnosis of cancer, three received a palliative care consult, and three were discharged to an inpatient hospice facility (hospice house). No patients had repeat health care encounters at our hospital. 42% (31/74) of patients enrolled in hospice required admission. Conclusion: New hospice referrals in the ED are possible but rare. Further research should investigate possible missed opportunities to provide goal-concordant care.

Background: Dementia clinical trials often fail to include diverse and historically minoritized groups. Objective: We sought to adapt the Alzheimer's Disease and Related Dementias-Palliative Care (ADRD-PC) clinical trial to improve enrollment and address the cultural needs of people with late-stage ADRD who identify as Hispanic or Latino and their family caregivers. Design: Bilingual, bicultural research team members adapted study materials and processes using the Cultural Adaptation Process Model. Investigators and research staff held three meetings with eight Hispanic/Latino advisors-seven dementia caregivers and one health care professional. The first two meetings informed linguistic and cultural adaptation of study materials and processes. After piloting the adapted materials with Hispanic/Latino patient-caregiver dyads in the ADRD-PC study, the third meeting focused on refining protocols for recruitment. Results: Key reflections from advisor meetings guided cultural adaptation: lived experiences on dementia caregiving; patient, caregiver, and clinician interactions in the health care system; and limited knowledge and misconceptions of palliative care. Adaptations to the ADRD-PC study materials included specific consideration of preferred language, word choices (i.e., "palliative care" and "caregiver"), and recruitment considerations related to potential barriers to palliative care or research in general. Conclusions: Cultural adaptation of the ADRD-PC dementia palliative care clinical trial protocol depended on participatory methods and collaboration between Hispanic/Latino caregiver advisors and researchers, including bilingual, bicultural team members. Comparable methods may inform future culturally inclusive approaches to clinical research and thus improve representation of minoritized groups in dementia care research.

Background: Medical aid in dying is legal in 10 states plus Washington DC, covering 22% of the U.S. population. Much has been written about the ethics of aid in dying, but little about evidence-based care, especially the medications used. We investigated the efficacy of four commonly used aid-in-dying medication protocols-using the time to sleep and time to death as proxies for efficacy. Methods: We performed an independent, secondary analysis on deidentified data from four organizations, comparing four different medication protocols. Descriptive statistics for time to sleep and time to death for the different medication protocols were calculated. Medication protocols included one sedative and three sedative/cardiotoxin combinations. Results: We analyzed data from 3332 death reports covering 2009 to 2023, comparing a single sedative medication protocol with three different sedative/cardiotoxin combinations. The sedative alone yielded the most rapid median time to death of 0.4 hours, but with days-long outliers. Two of the sedative/cardiotoxin combinations yielded median times to death of 0.8 hours. But from 2018 to 2023, as the medication combinations shifted, the mean time to death declined while the median remained relatively steady-confirming that these combinations reduced the incidence of longer deaths (especially extreme outliers). Conclusion: This first-time analysis of aid-in-dying medication protocols showed that while a sedative alone had the best median time to death, the most recent sedative/cardiotoxin protocol had an acceptable median time to death of 0.8 hours, but with fewer prolonged-death outliers.