Journal of palliative medicine最新文献

Introduction: It is a common practice in Ontario to prescribe patients with advanced life-limiting illness a Symptom Response Kit (SRK), an emergency medication and medical supply kit, to manage distressing symptoms in the community toward the end of life (EOL). These are hugely beneficial to patients; however, the medications included have high risk profiles, and there is no uniform procedure in place for the return or disposal of SRKs. This narrative review aims to identify what happens to unused SRKs when no longer needed. Methodology: The literature search was conducted on Medline Ovid, Embase, and CINAHL databases in early 2022 and re-conducted from 2022 to September 15, 2023. Ontario Health at Home (OHAH) websites were also searched in early 2022 and again in January 2024. We included conference abstracts, systematic reviews, scoping reviews, and clinical trials published in the English language that discussed the use of SRK (or equivalent) in community palliative care. Results: Twenty-six studies were included, 12 (46.2%) of which originated from the United States and 3 (11.5%) from Canada. Few studies (34.6%) discussed safety. One study provided instructions given to patients and families regarding return or disposal of unused kits. There was no consistent terminology for SRKs in studies or throughout OHAH organization websites. Three OHAH organizations' websites had instructions available on procedures for disposal or return of unused kits. Conclusions: There is a paucity of research on the use of SRK, although the practice is common. There is no consensus on SRK terminology and no studies evaluating the return or safe disposal of SRKs in the community when no longer needed. Future work should establish safety regulations, disposal monitoring, supervision of use, and terminology standardization. OHAH organizations provincially are conducting innovative work in this area.

This report highlights the development of Grace House Akron, Inc. (GHA) a comfort care home focused on caring for terminally ill individuals who are unhoused, isolated, without caregivers, economically disadvantaged and face end of life alone. GHA is a free-standing home that provides safe housing, a nurturing environment, and round-the-clock personal care while local hospice agencies provide medical management. Successful strategies and lessons learned from creation of the GHA organization in 2016 to the opening in 2022 and operating of the home for 24 months, are discussed. These strategies include: (1) Build strong executive leadership in partnership with a broadly skilled and connected board; (2) Develop a comprehensive and flexible business plan; (3) Identify state licensure regulations and physical facility requirements; (4) Engage foundations, donors, and the local community early and often; (5) Utilize volunteers as an essential part of the team; and (6) Listen to and learn from each resident while identifying their unique needs. We also share four lessons learned from our journey. By sharing these strategies and lessons, we hope to inform others interested in filling gaps in hospice services to vulnerable individuals in their own communities.

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.

Background: Patients with metastatic pancreatic cancer (mPC) have a five-year survival of 2.7%. Studies have shown that patients with mPC receive aggressive care at the end of life (EOL), which has been associated with worse quality of life for patients and high use of health care resources when they are least likely to benefit patients. Multiple studies suggest that integration of palliative care (PC) teams often leads to less aggressive EOL care. Methods: A retrospective database of patients with mPC treated at a tertiary cancer center between 2010 and 2021 was analyzed for utilization of PC consultation and EOL care. Results: We identified 610 patients with mPC, of whom 39% were seen by PC, 56% were referred to hospice, and 91.8% are deceased. The average time from mPC diagnosis to PC consult was 232 days, the average time from PC consult to death was 121 days. Patients who had PC consultations were less likely to receive chemotherapy within 14 days of death (7.7% vs. 13.3%, p = 0.05), more likely to have a do not resuscitate (DNR) code status (83.3% vs. 44.5%, p < 0.0001), and more likely to be referred to hospice (83.9% vs. 35.9%, p < 0.0001). The average length of time on hospice was 24 days with no difference between those who saw PC and those who did not. Patients who were referred to hospice were also less likely to receive chemotherapy within 14 days of death (6.7% vs. 19.8%, p < 0.0001). Lastly, no significant difference was observed in mean overall survival from time of diagnosis in patient referred to PC and those who were not (349.4 vs. 349.6 days, p = 0.992). Conclusions: Patients with mPC who had a PC team involved in their care were significantly less likely to receive aggressive EOL care.

Objective: To systematically review studies presenting quantitative data on the experiences of patients and providers engaged in VSED. Background: Voluntarily stopping eating and drinking (VSED) to purposefully accelerate the end of life is uncommon but likely accounts for thousands of deaths per year. A single systematic review of literature was published in 2014. Methods: We systematically searched English-language articles and books in MEDLINE/PubMed and reference lists of retrieved articles and books. Studies that provided empirical results from surveys or qualitative studies were selected. We obtained from each study publication year, study type, country, population source, sample size, outcomes, and results, and graded each on quality. Results: Of the 17 empirical publications not included in the 2014 review, 3 were conducted in the US. Eight surveys were rated as moderately high/high quality and six as moderately low/low quality. Incidence estimates ranged from 0.4%-1.7% of all deaths. VSED was generally attempted among the elderly, often 80+ year-olds. About half of participants had dementia or other conditions that would make them ineligible for medical aid in dying. Incapacitating depression was rare. The mean time to death was 10 days with a range of one to two weeks. Most experiences were considered satisfactory by the patient. Caregivers often found preparation for and the emotional toll from VSED challenging. Theoretical support for VSED was ubiquitous among health care professionals in Europe, who expressed the importance of palliative support. However, professional experience was lacking. Conclusion: VSED, albeit uncommon, still accounts for many, typically satisfactory, deaths. Little research to guide best practice is available, particularly in the United States. Caregivers and health care providers generally indicate support however, extensive preparation and caregiver assistance make the practice challenging. Practitioners express a need for training.

Background: Little is known about the aggressiveness of cancer care at the end of life (ACCEoL) for children with cancer in countries where palliative care (PC) is scarce. Objective: The aim of this study was to determine the frequency and time trends of ACCEoL in the pediatric population in a Western European country. Setting/Subjects: We conducted a retrospective cohort study analyzing children between 0 and 17 years who died of cancer in public hospitals in Portugal, from January 2010 to December 2015. Measurements: Hospital admissions during the last month of life were identified and we analyzed the length of stay and procedures performed. The ACCEoL was measured with a composite indicator. Results: We identified 300 children, with a median age of 9 years. A total of 58.7% were male and 31.3% had central nervous system tumors. We found at least one indicator of ACCEoL in 87.8% of patients. "More than 14 days spent in the hospital" (51.0%) and "more than one hospitalization" (43.3%) were the most frequent individual indicators. Infants and children with hematological malignancies had a numerically higher percentage of ACCEoL. We found no statistically significant differences in the frequencies of the ACCEoL among the subgroups. The prevalence of ACCEoL remained stable over the period. Conclusions: In our cohort about 9 out of 10 children with cancer experienced at least one indicator of ACCEoL, a rate higher than in countries with well-developed PC services. There is a need to improve the care in the last months of life for children with cancer.

Background and Objectives: Misconceptions of and cultural differences in aging influence older adults' medical decision-making self-efficacy and engagement in advance care planning (ACP). This study aims to investigate the association between current medical decision-making participation self-efficacy and ACP engagement among older individuals receiving home-based medical care (HBMC) in Taiwan. Design: Baseline data analysis of a nationwide cohort study. Setting and Participants: Patients aged ≥50 years who had been consistently receiving HBMC for > two months between November 2019 and December 2022 were recruited. Study recruitment took place at six hospitals and 12 community home care institutions. Measurement and Analysis: A structured questionnaire was used to collect data on sociodemographic characteristics, decision-making participation self-efficacy, and ACP engagement. Descriptive, stratified, and multivariate logistic regression analyses were performed. Results: In total, 408 HBMC recipients were enrolled (average age: 80.4 years; 55% women). The respondents reported moderate decision-making participation self-efficacy but low ACP engagement. In light of the transtheoretical model of behavior change, participants with moderate or high self-efficacy had a significantly higher chance of reaching the "contemplation stage" for ACP decisions (odds ratio or OR 4.06-27.13). Participants were more likely to reach the "preparation and action stages" for ACP decisions only when they had high self-efficacy (OR 2.76-14.73). Conclusions: Although participants with better current medical decision-making self-efficacy were more likely to contemplate ACP, many did not take action beyond appointing a medical surrogate(s). Strategies to enhance decisional self-efficacy, thereby increasing timely ACP discussions among older adults in home settings in Chinese culture, are warranted. Trial registration number: ClinicalTrials.gov Identifier is NCT04250103 which has been registered on 31st January 2020.

Background: Altered cognitive function due to delirium changes the threshold or tolerance of symptoms. The impacts of delirium motor subtypes on symptoms remain unknown. Objectives: Determining whether delirium motor subtypes are associated with the severity of physical symptoms in a palliative care setting. Design: A secondary analysis of a multicenter prospective observational study. Setting/Subjects: We included consecutive patients with advanced cancer admitted to 23 inpatient hospices in Japan in 2017. Measurements: Occurrence of delirium, motor subtype, and severity of pain and dyspnea (Integrated Palliative Care Outcome Scale) were assessed at admission (T1) and on the day of Palliative Performance Scale declined to 20 (T2). Results: T1 and T2 data were obtained from 1896 and 1396 patients, respectively. Using patients without delirium as a reference, the odds ratio (OR) for moderate-to-overwhelming pain among those with hyperactive or mixed delirium was significantly higher at T1 and T2 (OR, 95% confidence interval [CI]: 1.49, 1.15-1.92, and 1.71, 1.26-2.32, respectively). A similar trend was observed for dyspnea at T1 and T2 (OR, 95% CI: 1.54, 1.16-2.06, and 1.88, 1.39-2.55, respectively). However, patients with hypoactive delirium did not have higher odds of developing severe symptoms. Patients without delirium at T1, who developed hyperactive or mixed delirium, had a higher severity of both pain and dyspnea than those who were delirium-free (OR, 95% CI; 1.60, 1.08-2.37, and 1.86, 1.27-2.72, respectively) at T2. Conclusion: Hyperactive delirium is associated with the intensity of pain and dyspnea in patients receiving palliative care.

Background: The relationship between nursing home (NH) stays before death and hospice use is understudied. Methods: A retrospective cohort study of Connecticut Medicaid decedents with common hospice diagnoses who died between 2017 and 2020. Medicaid/Medicare claims identified NH stays, hospice use, short length of stay (LOS) (≤7 days), demographics, and diagnoses. Logistic regression models examined associations between NH stays with hospice use and LOS. Results: Among 26,261 decedents, 54.2% had NH stays (17.8% short-term, 36.4% long-term). Individuals with NH stays (vs. none) had reduced odds of hospice use (short-term odds ratio [OR]: 0.77 [95% confidence interval or CI: 0.71-0.82] and long-term OR: 0.47 [0.45-0.50]) and had higher odds of short hospice LOS (short-term OR: 2.67 [2.41-2.96] and long-term OR: 2.95 [2.69-3.22]). Conclusions: Further research is needed into why individuals with NH stays, especially long-term stays, are less likely to use hospice and more likely to have short LOS and how this difference relates to end-of-life care quality.

Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. Methods and Materials: A structured interview was used alongside two versions of VMC to solicit AYA preferences and feedback regarding content and layout changes. Results: Overall, participants preferred Version 2; and largely agreed on the inclusion of new pages related to their personal information, children, and additional reflections. Most AYAs (95.5%) found the guide helpful for thinking about their care. Conclusions: Study findings support updates to VMC that specifically reflect AYAs end-of-life (EoL) preferences and emphasize the value of engaging AYAs in ACP conversations directly related to their specific concerns, priorities, and preferences. Use of VMC has potential for enhancing overall quality of care and quality of life for AYAs at EoL.