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Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in turn facilitates the anticipation of an adolescent's grief response, and allows for parents to be appropriately guided. However, more can be done to evaluate the needs of adolescent siblings and improve their support. This can be through establishing a validated needs-based questionnaire, empowering families and the multidisciplinary team to engage siblings, and diverting resources toward culturally sensitive support groups for siblings with critical illness. A framework to involve key players in the adolescent's circle is presented.

Introduction: Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and end-of-life (PEOL) care for their care recipient. Limited research has evaluated the social and environmental factors that may compound FCG burden and contribute to adverse emotional health outcomes among rural-dwelling PEOL FCGs. Objective: To characterize the social determinants of health (SDOH) that affect the provision of PEOL care among rural-dwelling FCGs, along with symptoms of anxiety and depression. Methods: A scoping review was conducted using Arksey and O'Malley's Framework. Searches were conducted in PubMed, CINAHL, PsycINFO, and Cochrane, and 511 articles published between 2010 and 2023 were screened. Keywords included "rural," "PEOL care," and "FCG." Inclusion criteria included FCGs, ages ≥18 years; findings reported on SDOH, anxiety, and/or depressive symptoms; within a rural context; and U.S. based. Findings: In this review, 18 studies met eligibility and were included. Apart from six studies that specifically investigated Black and Latinx FCGs, most FCGs were middle-aged White female spouses. SDOH impacting PEOL care provision included: limited access to PEOL services due to remote distance and travel needs for services; low health literacy in medical terminology and patient symptom management; limited English-language proficiency; perceived clinician racial and ethnic discrimination; financial vulnerabilities affecting health care coverage; and underdeveloped infrastructure. These barriers negatively impacted decision making, communication with clinicians, and patient symptom management. FCGs reported emotional distress related to patients' symptom management and limited opportunities for respite. There was a limited investigation of emotional well-being and minimal interventions aimed toward improving rural-dwelling FCG emotional health. The presence of community support promoted hospice use and facilitated the provision of care. Conclusions: FCGs are vulnerable to adverse emotional health when providing home-based PEOL care. Research is needed to develop supportive interventions (e.g., digital health) for rural-dwelling FCGs.

Background: Palliative extubation (PE) is the cessation of mechanical ventilation (MV) during terminal illness. Although PE is widely practiced in many countries, it remains illegal in others. Attitudes toward PE of patients at the highest risk for MV were scarcely explored before. Objective: To assess the attitudes of patients with advanced chronic illnesses (ACI) toward PE and other end-of-life decisions in a country where PE is illegal. Design: A prospective observational study using questionnaire-based interviews. Setting/Subjects: Patients with ACI hospitalized between 2021 and 2022 in a large tertiary center. Attitudes toward PE and mechanical ventilation were evaluated. Predictors for favoring/opposing PE were analyzed using multivariate logistical regression models. Results: A total of 152 (40% female, 75 ± 11 years) patients were included. The most common ACIs were advanced heart failure (32%), metastatic malignancy (32%), and chronic obstructive pulmonary disease (22%). Around 132 patients (87%) supported the legalization of PE, and their main reason was to avoid pain and suffering (87%). Legalization of PE would change the decision to avoid mechanical intubation in 34% of the cases. Most patients thought that the decision to perform PE should be made by the patient's physician and primary caregiver collaboratively (64%). Religious observance was an independent predictor for opposing PE (adjusted odds ratio 0.18; 95% confidence interval 0.06-0.59; p < 0.01), whereas the type of ACI was not. Conclusion: Most admitted patients with ACIs support the legalization of PE. Such policy change could have major impact on patients' end-of-life preferences. At-risk patients should be the focus of future studies in this area.

Background: Patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life. Objective: Identify current and best practice in initiating and conducting conversations about future and palliative care, by integrating data from multiple sources. Design: Multiphasic study where the findings of a systematic literature review and qualitative interviews were combined and synthesized using a triangulation protocol. Setting/Participants: Thirty-three patients with COPD and 14 clinicians from multiple backgrounds were recruited in the United Kingdom. Results: Clinicians' and patients' poor understanding about palliative care and COPD, difficulties in timing and initiating discussions, and service rationing were the main factors for late discussions. Divergent perspectives between patients and clinicians about palliative care discussions often prevented their start. Instead, early and gradual patient-centered discussions on treatment choices, symptom, and treatment burden were recommended by patients, clinicians, and the literature. Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques. Conclusion: Current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.

Background: Those working in the field of palliative care have recognized that many terms are being used synonymously and that clear definitions (or any definitions) for many of these terms are lacking. The synonymous use of the terms palliative and end of life (EOL) can especially lead to conflicts in clinical practice, such as a tardy referral to palliative care. Such conflicts may then result in poorer treatment of patients, for instance, pain management. In research, the lack of clear definitions or even of any established definition for central concepts, such as EOL, weakens study validity and research outcomes. Objective: The aim of this study was to establish a concise definition for the EOL phase. Design: A modified Delphi study design was chosen. A structured questionnaire based on a previously conducted concept analysis about the EOL was used. Setting: A panel of international and interdisciplinary experts was established. Between 34 (1st round) and 21 (4th round) individuals participated in the anonymous online expert panel. Results: After four panel rounds, we were able to provide a definition which covers physical and psychosocial aspects that should be considered at the beginning of the EOL phase and possible predictions about the remaining time. The definition also covers aspects of EOL care, such as considerations related to the individual's dignity, spirituality, and maintenance of relationships. Conclusion: EOL is a term which is defined by considering multiple aspects that affect the process of identifying the EOL phase, the EOL phase itself and the resulting care options.

Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palliative care, especially when looking at psychosocial palliative care services such as those provided by child life specialists, social workers, and pediatric psychologists. Objectives: In an effort to consolidate and synthesize the literature on this topic for psychosocial professionals working with children and families confronting a life-threatening diagnosis, a review was conducted. Design: This work was a systematic review of several academic databases that were searched from January 2000 to December 2020 for studies exploring disparities in pediatric end-of-life services and written in English. Setting/Subjects: This review was conducted in the United States. The search yielded 109 articles, of which 16 were included for review. Measurements: Three psychosocial researchers independently reviewed, critically appraised, and synthesized the results. Results: Emerging themes from the literature ( n  = 16) include service enrollment, decision making, and communication. Results highlight a lack of research discussing psychosocial variables and the provision of psychosocial services. Despite this gap, authors were able to extract recommendations relevant to psychosocial providers from the medical-heavy literature. Conclusions: Recommendations call for more research specific to possible disparities in psychosocial care as this is vital to support families of all backgrounds who are confronting the difficulties of pediatric loss.

Background: In 2017, Veterans Health Administration (VHA) implemented the Life-Sustaining Treatment Decisions Initiative (LSTDI) to promote goals-of-care conversations (GoCC) between seriously ill patients and their practitioners, to document patient preferences in the electronic health record, and to provide care consistent with patients' goals. Objectives: We evaluated the associations between this initiative and quality of care in the last month of life (i.e., emergency department/intensive care unit [ED/ICU] visits and hospice consultations). Design: We conducted patient-level propensity score analyses to evaluate the associations between LSTDI and care utilization in the last 30 days of life. The primary exposure was a three-level factor: no GoCC (reference group), GoCC with Full Code, and GoCC with do not resuscitate (DNR). The outcomes were ED/ICU visits and hospice consultations within 30 days of death. Setting/Subjects: A total of 44,320 patients receiving care in Veterans (VA), who were older than 18, and who died and had a completed encounter within 24 months of death in a VA primary care, mental health, or medical specialty between January 2017 and December 2019. Results: Patients with a documented GoCC and DNR code status had decreased risk of ED visits (odds ratio [OR] = 0.6, 89% credible intervals [CI] = [0.57-0.64]) and ICU visits (OR = 0.49, 89% CI = [0.45-0.53]), and increased rates of hospice visits ( β  = 2.18, 89% CI = [2.11-2.26]) compared with patients with no GoCC. Conclusion: The LSTDI had a positive impact by eliciting and documenting patient preferences for care at the end of life and quality of care in the last month of life. We observed associations between care preferences and ED/ICU visits and hospice consultations within 30 days of death. Further research should address the associations between LSTDI and use of palliative care, and outcomes associated with limits to specific life-sustaining treatments such as mechanical ventilation, artificial nutrition, and hydration.

Objective: Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. Design: Randomized wait-list control. Setting/Subjects: Assisted living and nursing home residents in the United States, and their family members and caregivers. Measurements: Five EOL treatment preferences (cardiopulmonary resuscitation or CPR, breathing machine, tube feeding, life support, and pain treatment) and four near EOL psychosocial preferences (having family at the bedside, engaging in faith practices such as prayer, having a pet at bedside, and engaging in activities such as being read to or listening to music) extracted from residents' videos and captured through family and staff surveys. Results: Thirty-six resident videos were shared with family ( N  = 50) and staff ( N  = 38) during care plan meetings. Concordance between residents' stated EOL treatment preferences and family and staff knowledge improved, with results showing a treatment effect at time of sharing the video (family: Beta = 0.21, p  < 0.001; staff: Beta = 0.35, p  < 0.001). Conclusion: Our findings indicate that sharing Me & My Wishes videos improved family and staff concordance of EOL psychosocial and treatment preferences for assisted living and nursing home residents living with dementia. Personalized videos conveying resident preferences can help informal and formal caregivers understand the resident as a person and foster concordant care. Clinical Trial Registration Number NCT03861429.

Background: Patients (≥60 years) with acute myeloid leukemia (AML) often receive intense health care utilization at the end of life (EOL). However, factors associated with their health care use at the EOL are unknown. Methods: We conducted a secondary analysis of 168 deceased patients with AML within the United States. We assessed quality of life (QOL) (Functional-Assessment-Cancer-Therapy-Leukemia), and psychological distress (Hospital-Anxiety-and-Depression Scale [HADS]; Patient-Health-Questionnaire-9 [PHQ-9]) at diagnosis. We used multivariable logistic regression models to examine the association between patient-reported factors and the following outcomes: (1) hospitalizations in the last 7 days of life, (2) receipt of chemotherapy in the last 30 days of life, and (3) hospice utilization. Results: About 66.7% (110/165) were hospitalized in the last 7 days of life, 51.8% (71/137) received chemotherapy in the last 30 days of life, and 40.7% (70/168) utilized hospice. In multivariable models, higher education (odds ratio [OR] = 1.54, p  = 0.006) and elevated baseline depression symptoms (PHQ-9: OR = 1.09, p  = 0.028) were associated with higher odds of hospitalization in the last seven days of life, while higher baseline QOL (OR = 0.98, p  = 0.009) was associated with lower odds of hospitalization at the EOL. Higher baseline depression symptoms were associated with receipt of chemotherapy at the EOL (HADS-Depression: OR = 1.10, p  = 0.042). Higher education was associated with lower hospice utilization (OR = 0.356, p  = 0.024). Conclusions: Patients with AML who are more educated, with higher baseline depression symptoms and lower QOL, were more likely to experience high health care utilization at the EOL. These populations may benefit from interventions to optimize the quality of their EOL care.

Background/Objective: Evidence linking process-based, high-quality end-of-life (EOL) care indicators to family satisfaction with EOL care in intensive care units (ICUs) remains limited. This study aimed to fill this gap. Design/Setting/Subjects/Measures/Statistical Analysis: For this exploratory, prospective, longitudinal observational study, 278 family members were consecutively recruited from medical ICUs at two medical centers in Taiwan. Family satisfaction with ICU care was surveyed in the first month after patient death using the Family Satisfaction in the ICU questionnaire (FS-ICU). Associations between FS-ICU scores and process-based quality indicators collected over the patient's ICU stay were examined using generalized estimating equations. Results: Documentation of process-based indicators of high-quality EOL care was generally associated with higher scores for both the FS-ICU Care and FS-ICU Decision-Making domains. Higher family satisfaction with ICU care was significantly associated with physician-family prognostic communication ( β [95% confidence interval (CI)]: 3.558 [2.963 to 4.154]), a do-not-resuscitate (DNR) order in place at death (23.095 [17.410 to 28.779]), and death without cardiopulmonary resuscitation (CPR) (13.325 [11.685 to 14.965]). Family members' satisfaction with decision making was positively associated with documentation of social worker involvement (4.767 [0.663 to 8.872]), a DNR order issued (10.499 [0.223 to 20.776]), and withdrawal of life-sustaining treatments (LSTs) before death (2.252 [1.834 to 2.670]). Conclusions : EOL care processes are associated with family satisfaction with EOL care in ICUs. Bereaved family members' satisfaction with EOL care in ICUs may be improved by promoting physician-family prognostic communication and psychosocial support, facilitating a DNR order and death without CPR, and withdrawing LSTs for patients dying in ICUs.

Over 140,000 people in the United States have died as a result of infection with COVID-19. These patients have varying death experiences based on their location of death, the availability and utilization of various medical technologies, the amount of strain on the local health care system, the involvement of specialist palliative care (PC) teams, and access to essential medications to alleviate symptoms at the end of life. The objective of this report is to describe the death experiences of four patients cared for in an urban academic medical center who received very different degrees of medical interventions and to examine the interventions of our interdisciplinary PC team. We conclude that PC teams must adapt to this new landscape by creating best practices for ensuring adequate symptom control, modifying approaches for withdrawal of life-sustaining medical technologies, and gaining facility with communication through teleconferencing platforms to meet the challenge of alleviating suffering for people dying from COVID-19.

Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life. Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted. Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories-turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states. Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.

Background: End-of-life (EOL) care is an important aspect of practice in the intensive care unit (ICU), where approximately one of every five patients may die. Objective: The objective of this study was to describe clinicians' experiences with the 3 Wishes Project (3WP) and understand the influence of the project on care in the ICU. Design: The 3WP is a palliative care intervention in which clinicians elicit and implement final wishes for patients dying in the ICU; it had been implemented for seven months at the time of this study. This mixed-methods study includes quantitative data from clinician surveys and qualitative data from clinician focus groups. Setting: A 24-bed medical ICU in a tertiary academic center. Subjects: Perspectives of 97 clinicians working in the ICU during the study period were obtained by self-administered surveys. Five focus groups with 25 nurses and 5 physicians were held, digitally recorded, transcribed, and analyzed. Measurements and Results: During the 7-month period, 67 decedents and their families participated in the 3WP. The overarching concept identified through analysis of the survey and focus group data is that the 3WP improves EOL care in the ICU, which was supported by three main themes: (1) The 3WP facilitates meaningful EOL care; (2) The 3WP has a positive impact on nurses and physicians; and (3) clinicians observe a positive influence of the 3WP on families. Conclusions: This patient-centered and family-partnered intervention facilitates meaningful EOL care, favorably impacting the ICU team and positively influencing family members.

Background: Futile or potentially inappropriate care (futile/PIC) for dying inpatients leads to negative outcomes for patients and clinicians. In the setting of rising end-of-life health care costs and increasing physician burnout, it is important to understand the causes of futile/PIC, how it impacts on care and relates to burnout. Objectives: Examine causes of futile/PIC, determine whether clinicians report compensatory or avoidant behaviors as a result of such care and assess whether these behaviors are associated with burnout. Design: Online, cross-sectional questionnaire. Setting/Subjects: Clinicians at two academic hospitals in New York City. Methods: Respondents were asked the frequency with which they observed or provided futile/PIC and whether they demonstrated compensatory or avoidant behaviors as a result. A validated screen was used to assess burnout. Measurements: Descriptive statistics, odds ratios, linear regressions. Results: Surveys were completed by 349 subjects. A majority of clinicians (91.3%) felt they had provided or "possibly" provided futile/PIC in the past six months. The most frequent reason cited for PIC (61.0%) was the insistence of the patient's family. Both witnessing and providing PIC were statistically significantly ( p  < 0.05) associated with compensatory and avoidant behaviors, but more strongly associated with avoidant behaviors. Provision of PIC increased the likelihood of avoiding the patient's loved ones by a factor of 2.40 (1.82-3.19), avoiding the patient by a factor of 1.83 (1.32-2.55), and avoiding colleagues by a factor of 2.56 (1.57-4.20) (all p  < 0.001). Avoiding the patient's loved ones ( β  = 0.55, SE = 0.12, p  < 0.001), avoiding the patient ( β  = 0.38, SE = 0.17; p  = 0.03), and avoiding colleagues ( β  = 0.78, SE = 0.28; p  = 0.01) were significantly associated with burnout. Conclusions: Futile/PIC, provided or observed, is associated with avoidance of patients, families, and colleagues and those behaviors are associated with burnout.

Background: Little is known about clinical symptom burden, dementia, and social isolation in the last year of life among older adults. Objective: To describe and contrast the type and severity of symptom burden for older decedents with and without dementia, and whether specific symptoms and presence of dementia are associated with limitations in social participation in the last year of life. Design: Cross-sectional logistic regression analysis of a population-based study. Setting/Subjects: A total of 1270 community-dwelling adults of age ≥65 years in the United States participated in the 2011 National Health and Aging Trends Study and died by 2015. Measurements: Dementia status, 13 clinical symptoms, and limitations in 6 social activities were drawn from the interview preceding death. Severity of sensory, physical, and psychiatric symptom burden was examined in tertiles. Results: Decedents with dementia (37.3%) had higher prevalence of all symptoms ( p' s < 0.05), except insomnia and breathing problems. Dementia was associated with greater likelihood of high versus low burden of sensory (odds ratio [OR] 4.52 [95% confidence interval {CI} 3.08-6.63]), physical (OR 3.49 [95% CI 2.48-4.91]), and psychiatric (OR 2.80 [95% CI 1.98-3.95]) symptoms. Dementia and physical symptoms (problems with speaking, leg strength/movement, and balance) were independently associated with limitations in at least three social activities ( p' s < 0.05 for adjusted ORs). Conclusion: Symptom burden is higher in patients with dementia. Dementia and physical symptoms are associated with social activity limitations. Older patients with dementia or physical symptoms may benefit from earlier emphasis on palliative care and quality of life.

Background: Legal concerns have been implicated in the occurrence of variability in decisions of limitations of medical treatment (LOMT) before death. Objective: We aimed to assess differences in perceptions between physicians and prosecutors toward LOMT. Measurements: We sent a survey to intensivists, oncologists, and prosecutors from Brazil, from February 2018 to May 2018. Respondents rated the degree of agreement with withholding or withdrawal of therapies in four different vignettes portraying a patient with terminal lung cancer. We measured the difference in agreement between respondents. Results: There were 748 respondents, with 522 (69.8%) intensivists, 106 (14.2%) oncologists, and 120 (16%) prosecutors. Most respondents agreed with withhold of chemotherapy (95.2%), withhold of mechanical ventilation (MV) (90.2%), and withdrawal of MV (78.4%), but most (75%) disagreed with withdrawal of MV without surrogate's consent. Prosecutors were less likely than intensivists and oncologists to agree with withhold of chemotherapy (95.7% vs. 99.2% vs. 100%, respectively, p  < 0.001) and withhold of MV (82.4% vs. 98.3% vs. 97.9%, respectively, p  < 0.001), whereas intensivists were more likely to agree with withdrawal of MV than oncologists (87.1% vs. 76.1%, p  = 0.002). Moreover, prosecutors were more likely to agree with withholding of active cancer treatment than with withholding of MV [difference (95% confidence interval, CI) = 13.2% (5.2 to 21.6), p  = 0.001], whereas physicians were more likely to agree with withholding than with withdrawal of MV [difference (95% CI) = 10.9% (7.8 to 14), p  < 0.001]. Conclusions: This study found differences and agreements in perceptions toward LOMT between prosecutors, intensivists, and oncologists, which may inform the discourse aimed at improving end-of-life decisions.

Background: Research shows that religion and spirituality are important when persons cope with serious and life-threatening illness. Patients who receive good spiritual care report greater quality of life and better coping, and such support is strongly associated with greater well-being, hope, optimism, and reduction of despair at end of life. Despite these benefits, evidence shows that many patients and caregivers (P/C) refuse spiritual care when a hospice team offers it, possibly resulting in unnecessary suffering. Objective: To better understand what contributes to spiritual support acceptance in hospice care. Design: Quasi-experimental quantitative study. Setting/Subjects: 200 patients admitted to hospice. Measurements: Participants were divided equally into intervention and control arms. Control participants received standard information about the availability of chaplain support and an offer for referral to chaplain services. Intervention participants received educational intervention that explained hospice chaplain services and the evidence-based benefits of spiritual support. The association of chaplain acceptance was measured with treatment group, patient age, disease, church affiliation and support, sex, bereavement risk, and place of residence. Results: Among intervention participants, 64 (64%) accepted spiritual support versus 52 (52%) of control participants. The intervention arm's acceptance rate was higher than the control arm after adjustment for other variables. The variables associated with acceptance were age, primary diagnosis, and place of residence. Conclusions: This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.

Background: Musculoskeletal sarcomas (MSSs) are rare cancers and often aggressive tumors that originate from mesenchymal tissue. Patients with advanced MSS often report difficulties with symptom burden, which can reduce their health-related quality-of-life. Objective: The aim of this study was to describe the patterns of the physical symptoms of MSS patients in the palliative setting and to detail the palliative treatment used in the last two weeks of life. Design: Retrospective study using the electronic patient records from a single institution. Setting/Subjects: A retrospective study was carried out in a sample of 46 consecutive MSS patients with locally advanced/metastatic disease, who were hospitalized and died in our department. The median age of these patients was 56 years at death. Measurements: Symptom burden and medical intervention during the last two weeks of life were collected. Results: The most frequent physical symptoms were pain and dyspnea in 93% and 78% of patients, respectively, while only 17% of patients suffered from nausea. A total of 98% of patients required opioids, and most patients were treated with morphine through either subcutaneous or intravenous continuous injection. Nonsteroidal anti-inflammatory drugs and acetaminophen were administered to 79% of patients. Corticosteroids were administered for the relief of dyspnea to 83% of patients. Of the patients, 46% received palliative chemotherapy within the last two weeks of life, and the oral treatment was continued until a median of 5.6 days before death. In addition, 39% of patients received a sedative treatment during the last two weeks of life for uncontrolled refractory symptoms. Conclusions: The symptom burden experienced by advanced MSS patients is profound at the end of life for all palliative approaches. Therefore, palliative medicine is an important and even crucial component of the continuum of care, allowing for aggressive symptom management with a variety of medical interventions, including palliative sedation.

Background: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. Objective: To explore pediatric intensivists' attitudes and practices surrounding end-of-life care in Vietnam. Methods: This is a mixed-methods study conducted at a tertiary pediatric and neonatal intensive care unit in Hanoi. Physicians and nurses completed a quantitative survey about their views on end-of-life care. A subset of these providers participated in semistructured interviews on related topics. Analysis of surveys and interviews were conducted. Results were triangulated. Results: Sixty-eight providers (33 physicians and 35 nurses) completed the quantitative survey, and 18 participated in interviews. Qualitative data revealed three overarching themes with numerous subthemes and supporting quotations. The first theme was factors influencing providers' decision-making process to escalate or withdraw treatment. Quantitative data showed that 40% of providers valued the family's ability to pay to continue life-sustaining treatment. Second, communication dynamics in decision making were highlighted; 72% of providers would be willing to override a family's wishes to withdraw life-sustaining treatment. Third, provider perceptions of death varied, with 68% regarding their patients' deaths as a personal failure. Conclusions: We elicited and documented how pediatric intensivists in Vietnam currently think about and provide end-of-life care. These findings indicate a need to strengthen palliative care training, increase family involvement in decision making, implement standardized and official do-not-resuscitate documentation, and expand pediatric hospice services at the individual, hospital, and national levels in Vietnam.

Background: Goal-concordant care (GCC)-care aligned with a patient's known goals and values-is a measure of the quality of end-of-life (EOL) care that can be assessed by surveying family members after a patient's death. It is unknown whether patient characteristics affect this measure. Objective: The objective of the article was to examine family report of GCC and its associations with patient characteristics. Methods: Using the Health and Retirement Study, which is a nationally representative, longitudinal cohort of adults over age 50, we sampled decedents whose family completed the 2014 postdeath interview. Families reported frequency of GCC at the EOL. A multivariable regression model assessed the associations between family report of GCC and decedent characteristics. Results: Of 1175 respondents, 76% reported that the decedent "usually" or "always" received GCC. Proxy report of GCC was independently associated with age (adjusted odds ratio [AOR] 1.02, 95% confidence interval [CI] 1.01-1.03), having three or more chronic medical conditions (AOR 1.34, CI 1.02-1.77), the presence of written or verbal advance care planning (ACP) (AOR 1.38, CI 1.02-1.88), and an interaction term of race and ability to participate in EOL decision making (AOR 3.83, CI 1.02-14.40). African American race was not independently associated with GCC (AOR 0.73, CI 0.5-1.06). Conclusion: Family's report of GCC is associated with ACP, age, and multimorbidity. Being African American and perceived as able to participate in EOL decision making was significantly associated with report of GCC. Bringing the patient's voice into EOL care discussions through upstream ACP with likely surrogates may be particularly important to improving GCC for African Americans.

Background: As the U.S. population ages, dramatic shifts are occurring in the proportion of older adults who are divorced and widowed. Health status and behaviors are known to differ across marital status groups, yet research on end-of-life (EOL) care planning has only compared married and unmarried persons, overlooking differences between divorced and widowed individuals, by gender. Objective: This study aimed to examine marital status differences in EOL care planning by comparing the likelihood of discussions about EOL care, designation of medical durable power of attorney (MDPOA) for health care decisions, and completion of a living will for married, divorced, and widowed older adults, by gender. Methods: Analyses used data from the U.S. Health and Retirement Study for 2243 adults (50 years of age and older), who died during the course of the study. Post-death, proxy respondents reported on the decedents' EOL care discussions, living will completion, and establishment of an MDPOA. Multivariate regressions were estimated to test differences in care planning across marital status groups, for men and women. Results: Divorced men were less likely than married men to have had care discussions and to have engaged in any of the three planning behaviors. Widowers were more likely to have established an MDPOA. Both divorced and widowed women were more likely to have performed any of these EOL planning activities than married women. Conclusions: Divorced men and married women are at risk for lacking EOL care planning. Practitioners are encouraged to discuss the importance of such planning as they encounter these at-risk groups.

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.

Background: Although blood cancers are accompanied by a high level of prognostic uncertainty, little is known about when and how hematologic oncologists discuss prognosis. Objectives: Characterize reported practices and predictors of prognostic discussions for a cohort of hematologic oncologists. Design: Cross-sectional mailed survey in 2015. Setting/Subjects: U.S.-based hematologic oncologists providing clinical care for adult patients with blood cancers. Measurements: We conducted univariable and multivariable analyses assessing the association of clinician characteristics with reported frequency of initiation of prognostic discussions, type of terminology used, and whether prognosis is readdressed. Results: We received 349 surveys (response rate = 57.3%). The majority of respondents (60.3%) reported conducting prognostic discussions with "most" (>95%) of their patients. More than half (56.8%) preferred general/qualitative rather than specific/numeric terms when discussing prognosis. Although 91.3% reported that they typically first initiate prognostic discussions at diagnosis, 17.7% reported routinely never readdressing prognosis or waiting until death is imminent to revisit the topic. Hematologic oncologists with ≤15 years since medical school graduation (odds ratio [OR] 0.51; confidence interval (95% CI) 0.30-0.88) and those who considered prognostic uncertainty a barrier to quality end-of-life care (OR 0.57; 95% CI 0.35-0.90) had significantly lower odds of discussing prognosis with "most" patients. Conclusions: Although the majority of hematologic oncologists reported discussing prognosis with their patients, most prefer general/qualitative terms. Moreover, even though prognosis evolves during the disease course, nearly one in five reported never readdressing prognosis or only doing so near death. These findings suggest the need for structured interventions to improve prognostic communication for patients with blood cancers.

Women physicians are becoming more numerous, with the majority of active hospice and palliative medicine physicians under the age of 50 being women. While this trend has appropriately led to discussions of supporting, recruiting, and retaining women physicians, there is little literature about the effect of women physicians on patients. In particular, little has been written about the effect of a physician's pregnancy. Drawing on psychotherapeutic literature, the authors present seven cases illustrating how pregnancy of the palliative care physician affects patients and families. By recognizing the responses of patients and families and understanding the underlying meaning of the pregnancy, which drives those responses, palliative care physicians can utilize the pregnancy to select therapeutic interventions for the patient and family.

Background: Although the fragmentation of end-of-life care has been well documented, previous research has not examined racial and ethnic differences in transitions in care and hospice use at the end of life. Design and Subjects: Retrospective cohort study among 649,477 Medicare beneficiaries who died between July 2011 and December 2011. Measurements: Sankey diagrams and heatmaps to visualize the health care transitions across race/ethnic groups. Among hospice enrollees, we examined racial/ethnic differences in hospice use patterns, including length of hospice enrollment and disenrollment rate. Results: The mean number of care transitions within the last six months of life was 2.9 transitions (standard deviation [SD] = 2.7) for whites, 3.4 transitions (SD = 3.2) for African Americans, 2.8 transitions (SD = 3.0) for Hispanics, and 2.4 transitions (SD = 2.7) for Asian Americans. After adjusting for age and sex, having at least four transitions was significantly more common for African Americans (39.2%; 95% confidence interval [CI]: 38.8-39.6%) compared with whites (32.5%, 95% CI: 32.3-32.6%), and less common among Hispanics (31.2%, 95% CI: 30.4-32.0%), and Asian Americans (26.5%, 95% CI: 25.5-27.5%). Having no care transition was significantly more common for Asian Americans (33.0%, 95% CI: 32.0-34.1%) and Hispanics (28.8%, 95% CI: 28.0-29.6%), compared with African Americans (19.2%, 95% CI: 18.9-19.5%) and whites (18.9%, 95% CI: 18.8-19.0%). Among hospice users, whites, African Americans, and Hispanics had similar length of hospice enrollment, which was significantly longer than that of Asian Americans. Nonwhite patients were significantly more likely than white patients to experience hospice disenrollment. Conclusions: Racial/ethnic differences in patterns of end-of-life care are marked. Future studies to understand why such patterns exist are warranted.

Lesbian, gay bisexual, transgender, and queer or questioning (LGBTQ) older adults have unique health care needs, especially in the palliative care and hospice setting. In this article, we present a male patient with metastatic ovarian cancer, admitted with worsening dyspnea, now at the end of life. Only his wife was aware of his identified gender, and nondisclosure was very important to him. As he continued to decline, the team navigated LGBTQ-sensitive care within the health care setting, insurance inequalities, and support and communication to his family. This case study summarizes clinical recommendations for the LGBTQ individual in the hospice and palliative care setting, suggesting how our patient's care may have been improved. With the changes in social acceptance and attitudes, the LGBTQ community has become more visible and their numbers appear to be growing. It is important, therefore, that hospice and palliative care providers be educated on their needs to provide competent and inclusive health care.

Background: Palliative care is often underutilized or initiated late in the course of life-threatening illness. Randomized clinical Early Palliative Care (EPC) trials provide an opportunity for changing oncologists' perceptions of palliative care and their attitudes to referring patients to palliative care services. Aim: To describe French oncologists' perceptions of EPC and their effects on referral practices before a clinical EPC trial was launched. Design: A qualitative study involving semistructured face-to-face interviews. The data were analyzed using the Grounded Theory coding method. Setting/Participants: Thirteen oncologists and 19 palliative care specialists (PCSs) working at 10 hospitals all over France were interviewed. Most of them were involved in clinical EPC trials. Results: The findings suggest that referral to PCSs shortly after the diagnosis of advanced cancer increases the terminological barriers, induces avoidance patterns, and makes early disclosure of poor prognosis harder for oncologists. This situation is attributable to the widespread idea that palliative care means terminal care. In addition, the fact that the EPC concept is poorly understood increases the confusion between EPC and supportive care. Conclusion: Defining the EPC concept more clearly and explaining to health professionals and patients what EPC consists of and what role it is intended to play, and the potential benefits of palliative care services could help to overcome the wording barriers rooted in the traditional picture of palliative care. In addition, training French oncologists how to disclose "bad news" could help them cope with the emotional issues involved in referring patients to specialized palliative care.

Background: Information about end-of-life goals and preferences of older adults with multiple chronic conditions (MCCs) is scarce, but necessary for prioritizing resources to care for this population. Objective: The aim of this study was to determine which end-of-life quality domains are associated with excellent overall end-of-life care quality for older adults with MCCs. Design: This study involved retrospective cross-sectional cohort analysis of secondary data derived from the National Health and Aging Trends Study (NHATS), Last Month of Life Interview. Measurements: Weighted bivariable analyses determined unadjusted relationships between overall care quality and end-of-life care quality. Weighted unadjusted and adjusted multiple logistic regression tested the association of ratings of overall care quality with the perception of quality. Results: The final analytic sample included 477 NHATS participants (weighted: 1,123,887 participants). For older adults with MCC, the rating of overall care quality was positively associated with coordination (adjusted odds ratio [aOR] 4.49; 95% confidence interval [CI]: 1.85-10.86), shared decision making (aOR 1.97; 95% CI: 1.12-3.47), respect (aOR 6.36; 95% CI: 3.23-12.52), and spiritual and emotional support (aOR 2.02; 95% CI: 1.23-3.30). We found no significant association between the rating of overall care quality and symptom management (aOR 1.49; 95% CI: 0.81-2.71). Conclusion: Given that nonsymptomatic domains ( coordination , shared decision making , respect , and spiritual and emotional support ) were most associated with high-quality end-of-life care for older adults with MCC as rated by their proxies, increased attention is needed to strengthen these aspects of care. Symptom management was unrelated to the overall quality rating, and further research is needed to illuminate the meaning of this finding.

Context: Racial disparities in rates of hospice use, a marker of quality of end-of-life (EOL) care, have been a long-standing problem. Although distrust has been cited as a main reason for the preference of intensive EOL care among African Americans, the role of trust has not been closely analyzed in predicting EOL care in the context of advance care planning (ACP) outcomes., Objectives: The goal of this review was to empirically examine the role of trust in ACP outcomes., Methods: For this systematic review, we utilized methods adapted from the GRADE process developed by the Cochrane Collaboration. The research question guiding this review was "What is the quantitative influence of trust in the health care system or health care providers on the ACP process for African Americans?" We searched Medline, Embase, and Web of Science for articles published between 1975 and 2016., Results: We identified nine quantitative studies that measured and evaluated trust as a predictor or correlate of ACP preferences. Of the studies, eight were observational and one was a pre-post-test study. Three studies were designated as low quality, and six studies were of moderate quality., Conclusion: Distrust has been cited as a central reason for African Americans' tendency to choose life-sustaining treatments over comfort-focused care; however, our findings do not support this hypothesis. The majority of studies found no significant differences in trust between African Americans and their White counterparts. Further, we found that trust was not associated with ACP outcomes in the majority of studies.

For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources. Specific cultural considerations at end of life for these children included optimizing the presence of the shared community or tribe, the centrality of healing rituals, and varied attitudes toward withdrawal of life-sustaining medical treatment. By addressing each of these components, we were able to coordinate palliative transport to enhance cross-cultural care and meaning at end of life for children with life-limiting illness.

Background: Surgical patients most commonly receive palliative care services within 24-48 hours of death, and reasons for this delay are poorly understood. Research with nonsurgeons suggests that physician characteristics and beliefs about death and dying may contribute to late referral., Objective: To describe surgeon perspectives related to death and dying, and their relationship with delayed referrals to palliative care., Design: Using a previously validated survey instrument supplemented by open-ended questions, deductive content analysis was used to describe surgeon preferences for end-of-life care., Settings: Participants were all current nonretired members of the American Society of Colon and Rectal Surgeons., Main Outcome Measures: Surgeon descriptions of a "good death" and how personal experiences influence care provided., Results: Among 131 survey respondents (response rate 16.5%), 117 (89.3%) completed all or part of the qualitative portion of the survey. Respondents consistently reported their personal preferences for end-of-life care, and four central themes emerged: (1) pain and symptom management, (2) clear decision making, (3) avoidance of medical care, and (4) completion. Surgeons also reflected on both good and bad experiences with patients and family members dying, and how these experiences impact practice., Limitations: The small sample size inherent to Internet surveys may limit generalizability and contribute to selection bias., Conclusion: This study reveals surgeon preferences for end-of-life care, which may inform initiatives aimed at surgeons who may underuse or delay palliative care services. Future studies are needed to better understand how surgeon preferences may directly impact treatment recommendations for their patients.

Context: Prognosis communication is one hypothesized mechanism by which effective palliative care (PC) promotes preference-concordant treatment near end of life (EOL), but little is known about this relationship., Methods: This is a multisite cohort study of 231 hospitalized patients with advanced cancer who consulted with PC. We audio-recorded the initial consultation with the PC team and coded conversations for all statements regarding expectations for how long the patient will live. We refer to these statements as length-of-life talk. We followed patients for up to six months to determine EOL treatment utilization, including hospice enrollment. Patients completed a brief interviewer-facilitated questionnaire at study enrollment., Results: Forty-four percent (101/231) of observed conversations contained at least one statement about expectations for length of life, and 60% of patients (139/231) enrolled in hospice during the six months following these conversations. The association between length-of-life talk and hospice enrollment was strong among those (155/231) who endorsed treatment preferences favoring comfort over longevity in the last weeks to months of life (odds ratio [OR] adj  = 2.98; 95% confidence interval [CI] = 1.34-6.65) and weak/absent among others (69/231; OR adj  = 0.70; 95% CI = 0.16-3.04)., Conclusions: Talking about expectations for remaining length of life during PC consultations is associated with six-month hospice enrollment among people with advanced cancer who endorse preferences for EOL treatment that favor comfort over longevity.

Background: Palliative surgical procedures are frequently performed to reduce symptoms in patients with advanced cancer, but quality is difficult to measure., Objective: To determine whether natural language processing (NLP) of the electronic health record (EHR) can be used to (1) identify a population of cancer patients receiving palliative gastrostomy and (2) assess documentation of end-of-life process measures in the EHR., Design/setting: Retrospective cohort study of 302 adult cancer patients who received a gastrostomy tube at a single tertiary medical center., Measurements: Sensitivity and specificity of NLP compared to gold standard of manual chart abstraction in identifying a palliative indication for gastrostomy tube placement and documentation of goals of care discussions, code status determination, palliative care referral, and hospice assessment., Results: Among 302 cancer patients who underwent gastrostomy, 68 (22.5%) were classified by NLP as having a palliative indication for the procedure compared to 71 patients (23.5%) classified by human coders. Human chart abstraction took >2600 times longer than NLP (28 hours vs. 38 seconds). NLP identified the correct patients with 95.8% sensitivity and 97.4% specificity. NLP also identified end-of-life process measures with high sensitivity (85.7%-92.9%,) and specificity (96.7%-98.9%). In the two months leading up to palliative gastrostomy placement, 20.5% of patients had goals of care discussions documented. During the index hospitalization, 67.7% had goals of care discussions documented., Conclusions: NLP offers opportunities to identify patients receiving palliative surgical procedures and can rapidly assess established end-of-life process measures with an accuracy approaching that of human coders.

Background: Advance care planning (ACP) is recommended for people with cystic fibrosis (CF), yet guidance for optimal implementation is lacking., Objective: To assess ACP-related thoughts, comfort level, and preferences among people with CF to guide evidence-based routine implementation of ACP in the CF clinic., Design: A cross-sectional survey assessed ACP-related experiences and preferences., Subjects: Thirty-eight adolescents and adults with CF from an urban CF center., Results: Few subjects reported talking to their CF team about ACP care preferences (5%) or completing advance directives detailing desired medical treatments (11%). However, most participants worried about living with advanced disease (84%) and felt comfortable discussing ACP preferences with CF providers (92%). Subjects largely preferred that ACP conversations occur when they are generally healthy, in the outpatient setting, and with any familiar CF team member. Disease severity was not associated with frequency of worry about living with advanced disease, comfort level with ACP discussions, or ACP setting preferences., Conclusions: People with CF worry about advanced disease and feel comfortable discussing ACP, but need more guidance to understand and document ACP choices. CF patient experiences and preferences support implementation of an early, active approach to ACP for people with CF.

Background: Patient-caregiver concordance on end-of-life (EOL) care preferences is poor, but changes in this concordance have not been longitudinally explored as patient death approaches, potentially distorting the extent of concordance. Cross-sectional studies cannot disentangle whether the extent of concordance is facilitated or hindered by dyads' specific preferences, prognostic awareness, physical and psychological well-being, and quality of life, or whether these variables were enhanced or worsened by patient-caregiver concordance on EOL care preferences., Objective: To examine the evolution of and factors facilitating or hindering patient-caregiver concordance on life-sustaining treatment (LST) preferences over cancer patients' last six months., Design: Longitudinal study design., Methods/subjects: Patient-caregiver concordance on LST preference states (patterns) was examined among 215 cancer patient-caregiver dyads in patients' last six months by hidden Markov modeling. Concordance on LST preference states was determined by percent agreement and kappa coefficients. Predictors of concordance on LST preference states were tested by hierarchical generalized linear modeling with logistic regression, with concordance and time-varying, modifiable independent variables arranged in a distinct time sequence., Results: Patient-caregiver concordance on LST preference states was poor and improved only slightly over cancer patients' last six months. Concordance on LST preference states was significantly more likely in patients with greater physical symptom distress. Caregivers were more likely to concur with their relative's LST preference states if caregivers uniformly rejected all LSTs or accepted nutritional support while rejecting other aggressive LSTs for their relative., Discussion/conclusion: Patient symptom distress and caregiver rejection of aggressive LSTs predicted greater patient-caregiver concordance on LST preference states in patients' last six months. To encourage patients and caregivers to discuss LST preferences, clinicians should facilitate caregivers' understanding of patients' LST preferences and LST efficacy at EOL and adjustment to their beloved's inevitable death when his/her physical symptoms still wax and wane, thus providing personalized and value-concordant EOL care for dying cancer patients.

Background: Dying is ubiquitous, yet the optimal management of hydration in the terminal phase is undetermined. Palliative care (PC) doctors' practices may act as a de facto measure of the benefits and burdens of artificial hydration (AH) use., Objective: To identify PC doctors' AH prescribing practices for imminently dying patients and possible influencing factors., Methods: An online survey of doctors belonging to the Australian and New Zealand Society of Palliative Medicine., Results: One hundred and thirty-six surveys were completed (30% response rate). AH use for patients in the prognosticated last week of life was low: 77% of respondents prescribed AH to 0-10% of patients and 3% of respondents prescribed to more than 20%. The most common reason for prescribing AH was palliation of family/patient concern rather than a physical symptom. The majority thought there was no effect of AH on survival, or on symptoms of fatigue (90%), reduced level of consciousness (88%), agitation (75%), nausea (69%), vomiting (68%), myoclonus (66%), thirst (65%), delirium (62%), cough (57%), or bowel obstruction (50%). AH was thought to worsen subcutaneous edema (94%), upper respiratory tract secretions (85%), ascites (73%), physical discomfort (72%), dyspnea (62%), and urinary symptoms (57%)., Conclusion: PC doctors from Australia and New Zealand reported lower use of AH for dying patients compared to international counterparts. The study showed high concordance in respondents' opinions: most thought AH was unlikely to provide clinical benefit and might cause harm. Further studies are needed to determine best practice of AH use at the end of life.

Background: Many patients who are in the last phase of life use multiple medications that are continued until shortly before they ultimately die. Little is known about physicians' opinions and experiences regarding medication discontinuation at the end of patients' lives., Objective: To explore physicians' opinions and experiences regarding medication discontinuation during the last phase of life, and to identify factors influencing the continuation of potentially inappropriate medications., Design: Questionnaire study, including a vignette and several statements., Setting/subjects: A random sample of general practitioners and clinical specialists working in three regions in the Netherlands that represent more than half of the Dutch population., Results: Questionnaires were returned by 321 physicians (response rate: 37%). The majority of them (73%) agreed with the statement that patients who are in the last phase of life use too many medications. When presented with a vignette of a patient with end-stage COPD with different limited life expectancies, preventive medications would be stopped right early before death. Medications to relieve symptoms would not be stopped or stopped right before death. For medications to treat (chronic) illnesses, there was a huge interphysician variability. All statements about possible reasons why medications are continued in the last phase of life, for example, patients feeling abandoned and lack of time, were agreed upon by a small minority of respondents., Conclusions: Although physicians agree that patients use too many medications at the end of life, they quite regularly seem to give patients medications for chronic diseases, for which the benefit at the end of life may be debatable. More scientific evidence on whether or not these types of medication might be discontinued in the last phase of life is needed.

Aim: To study to what extent tumor-specific treatment (chemo- or radiotherapy) was given during the last 30 days in life and to examine how many of the patients were referred to a specialized palliative care unit (PCU), at a low-resource governmental hospital in India., Patients and Methods: Medical records of adult cancer patients deceased between April 1 and May 31 in 2016, and pediatric cancer patients deceased between April 1 and September 30 in 2016 were collected. Data regarding gender, age at admission, cancer diagnosis, tumor-specific treatment received, referral to the PCU, and date of death, were sampled., Results: A total of 96 patients (52 adults and 44 pediatric patients) were included in the study. In the last 30 days of life, tumor-specific treatment was given to 39 adult patients and 38 pediatric patients. During the last week in life, 26 adult and 25 pediatric patients, respectively, received tumor-specific treatment. Twenty-six adult and 25 pediatric patients, respectively, were referred to the PCU. End-of-life (EoL) tumor therapy was given to a lesser extent among referred patients., Conclusions: Eighty percent of the patients were given tumor-specific treatment near EoL. Half of the patients had been referred for specialized palliative care (SPC).

Background: Many palliative care patients are admitted to hospital shortly before death even though the acute hospital setting is not considered ideal for end-of-life care (EOLC)., Objectives: This study aimed to evaluate General Practitioners' (GPs') perspective on the frequency of and reasons for hospital referrals of these patients., Methods: Cross-sectional survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. GP characteristics, frequency and type of end-of-life transfers, reasons for referrals, confidence in EOLC, and regional palliative care provision were assessed. Multivariate regression analysis was performed to identify the variables associated with frequency of hospital referrals at the end of life., Results: The questionnaire was completed by 579 (31%) GPs. Frequent hospital referrals shortly before death were reported by 38%. GPs were less likely to report frequent hospitalizations when they felt confident in palliative care competencies, especially in anticipation of crisis. GPs were more likely to report frequent hospitalizations as being due to relatives' wishes, difficulties in symptom control, inadequate or absent care network, and the expense of palliative care at home., Conclusions: The results suggest that adequate support of and a care network for palliative patients and their caregivers are crucial for continuous home-based EOLC. Timely recognition of the advanced palliative phase as well as the involvement of well-trained GPs who feel confident in palliative care, together with adequate financial support for outpatient palliative care, might diminish the frequency of transitions shortly before death.

Aim: The primary objective of this study was to describe demographics and end-of-life treatments of children with cancer at a government tertiary cancer center in India., Methods: A retrospective review was undertaken of medical charts of all children younger than 18 years, who died as inpatients while undergoing treatment at the pediatric oncology department between April and September 2016. Data were collected on demographics, diagnosis, treatments, survival, palliative care involvement, and symptoms at end of life., Results: There were 44 pediatric oncology patients who died in the hospital during the study period. The most frequent diagnoses were hematological malignancies (n = 29). Tumor-specific treatment was given to 38/44 (86%) patients in the last 30 days of life, and 13 patients in the last day of life or 1 day before. Of all deaths, 23/44 (52%) occurred within 30 days of admission to the pediatric ward and 34/44 (77%) within 90 days. Of the 44 patients, 25 (57%) were referred to palliative care. The median number of days between referral and death was 14 (0-78) days. Frequent symptoms documented were bleeding (11/44), dyspnea (10/44), pain (7/44), seizures (7/44), and delirium (5/44), with each patient having one or more of these symptoms. Only patients with a palliative care referral received opioid analgesics or benzodiazepines at the end of life., Conclusions: This study highlights the demographics of suffering, death, and end-of-life care in children with cancer at a government tertiary cancer center in India.

Background: Additional evidence is needed regarding the impact of inpatient palliative care (IPC) on the quality of end-of-life care and downstream utilization., Aim: Examine the effects of IPC on quality of end-of-life care and acute and postacute care use in a large integrated system., Design: Retrospective cohort design., Setting/participants: Adult decedents from January 1, 2012, to December 31, 2014, who had at least one hospitalization at 11 Kaiser Permanente Southern California medical centers in the 12 months before death and not hospitalized for a trauma-related condition or receiving home-based PC or hospice were included in the cohort., Materials and Methods: Inverse probability of treatment weighting of propensity scores was used to compare outcomes between patients exposed to IPC (n = 3742) and controls (n = 12,755) who never received IPC before death., Results: Patients who received IPC were more likely to enroll in home-based PC or hospice (69% vs. 43%) and were less likely to die in a hospital (15% vs. 29%) or intensive care (2% vs. 9%) compared with controls (all, p < 0.001). IPC exposure was associated with higher risk for rehospitalization (HR: 1.18, 95% CI 1.11-1.25) and more frequent emergency department visits (RR: 1.16, 95% CI 1.07-1.26) with no increase in postacute care use compared with controls. Stratified analyses showed that IPC effects on acute care utilization were dependent on code status., Conclusion: IPC exposure was associated with higher enrollment in home-based PC/hospice and more deaths at home. The increased acute care utilization by the IPC group may reflect persistent confounding by indication.

Background: Since its beginning in 1993, Hospice Africa Uganda (HAU) has become a leader in palliative care in Africa. Despite this, there remains a sparsity of research elucidating the priorities of patients in their care at the end of life. This study aimed to identify those priorities in three groups: patients with life-limiting illness, their caregivers, and their healthcare providers at HAU, and thus to identify differences in what these groups find important in the last month of life., Methods: A Likert scale survey of 31 statements regarding end-of-life care was administered to 46 patients, 51 caregivers, and 25 healthcare providers at HAU in Kampala, Uganda and satellite locations., Analysis: Variations in the responses of the groups were analyzed using the Kruskal-Wallis test of variance., Results: Twelve of 31 items were significantly different, and frequency data were examined. Differences were found in categories of symptom management, future planning, and in preferred place of death. Of anxiety, pain, and shortness of breath (SOB), only control of SOB was widely agreed on as important by patients, although providers unanimously wanted to control symptoms. Many subjects in all groups found that funeral arrangements should be deferred. Most patients and caregivers felt as if dying in the hospital was preferable, whereas providers felt that home care was preferable., Conclusion: This study tells us that patients, caregivers, and healthcare providers often have different ideas concerning what is important in end-of-life care, differences that are unique to this population.

Background: Nursing home (NH) residents account for over 2.2 million emergency department visits yearly; the majority are cared for and transported by prehospital providers (emergency medical technicians and paramedics)., Objective: The purpose of this study was to investigate prehospital providers' perceptions of emergency calls at life's end. This article focuses on perceptions of end-of-life calls in long-term care (LTC)., Design: This pilot study employed a descriptive cross-sectional design. Concepts from the symbolic interaction theory guided the exploration of perceptions and interpretations of emergency calls in LTC facilities., Setting/subjects: A purposeful sample of prehospital providers was developed from one agency in a small northeastern U.S. city., Measurements: Semistructured interviews were conducted with 43 prehospital providers to explore their perceptions of factors that trigger emergency end-of-life calls in LTC facilities. Qualitative data analysis involved iterative coding in an inductive process that included open, systematic, focused, and axial coding., Results: Interview themes illustrated the contributing factors as follows: care crises; dying-related turmoil; staffing ratios; and organizational protocols. Distress was crosscutting and present in all four themes., Conclusions: The findings illuminate how prehospital providers become mediators between NHs and emergency departments by managing tension, conflict, and challenges in patient care between these systems and suggest the importance of further exploration of interactions between LTC staff, prehospital providers, and emergency departments. Enhanced communication between LTC facilities and prehospital providers is important to address potentially inappropriate calls and transport requests and to identify means for collaboration in the care of sick frail residents.

Background: It is important for cancer patients to receive end-of-life care at the desired place., Objective: To identify issues in selection of place for end-of-life care of cancer patients to realize their optimal survivorship., Design and Setting: Between September 2015 and January 2016, a questionnaire consisting of 33 items, including end-of-life care place preferences, was administered to cancer patients who attended three university hospitals in Japan., Results: A total of 971 questionnaires were collected (response rate, 88.4%). Fifty-eight percent of patients preferred to stay at home to receive end-of-life care. In contrast, more than 80% of patients did not know the details of healthcare services. The factors significantly associated with patients' choice for place of end-of-life care at home were "male gender" (odds ratio [OR] = 1.43, p = 0.030), "living in a one-person household" (OR = 0.21, p < 0.001), "feeling close to friends" (OR = 0.94, p = 0.049), "thinking that the family is burdened" (OR = 0.55, p < 0.001), "thinking that pain is controllable at home" (OR = 1.39, p < 0.001), and "thinking that society should establish a system of home palliative care" (OR = 1.93, p < 0.001)., Conclusions: This study identified six factors influencing the selection of a place for end-of-life care. Most patients have a desire for a social system that allows end-of-life care at home where they can live with their family, but have anxiety about treatment to deal with symptom change, with concern about burden on their family. These issues should be addressed in the future.

Background: A videotaped declaration by patients of their advance care planning preferences could be an opportunity to supplement advance directive forms and be a source of information for family, caregivers, and clinicians, yet research is needed to examine the content and acceptability of making declarations among patients., Objective: To evaluate the content and acceptability of 'video declarations': the process of patients videotaping themselves describing their advance care planning preferences., Design: We showed a brief video describing three approaches to end-of-life care and then invited participants to use an iPad to videotape themselves making a declaration about their wishes., Setting/subjects: Hospitalized patients from a large urban U.S. safety net hospital., Measurements: We interviewed participants about the acceptability of the declaration process. Declarations were transcribed and coded by a team, with multiple stakeholder input., Results: There were 16 participants; mean age was 60 (SD = 14) years. One participant declined. Out of 15 declarations, most were able to express their wishes for CPR (n = 12) and intubation (n = 13). Participants frequently discussed their family structure (n = 11), religious/spiritual well-being (n = 8), legacy/dignity issues (n = 6), and physical symptoms (n = 6). Nine declarations had directives judged to be unclear. The majority (66%) thought that this process was quite a bit or extremely helpful., Conclusions: Findings show that asking hospitalized patients to make videos describing their advance care planning preferences was feasible and acceptable. While the majority described their wishes around CPR and intubation, a fair amount of uncertainty remained. Further research is needed to support patients in describing their wishes clearly and test the effectiveness of video declarations to promote care concordant with preferences.

Background: Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care., Objective: To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs., Design: This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions., Settings: Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons., Main Outcome Measures: Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified., Results: Among 131 Internet survey respondents (response rate 16.5%), 76.1% reported no formal education in palliative care, and specifically noted inadequate training in techniques to forgo life-sustaining measures (37.9%) and communication (42.7%). Over half (61.8%) of surgeons cited unrealistic expectations among patients and families as a barrier to care, which also limited discussion of palliation. At the system level, absence of documentation, appropriate processes, and culture hindered the initiation of palliative care. Thematic analysis of open-ended questions confirmed and extended these findings through the following major barriers to palliative and end-of-life care: (1) surgeon knowledge and training; (2) communication challenges; (3) difficulty with prognostication; (4) patient and family factors encompassing unrealistic expectations and discordant preferences; and (5) systemic issues including culture and lack of documentation and appropriate resources., Limitations: Generalizability is limited by the small sample size inherent to Internet surveys, which may contribute to selection bias., Conclusions: Surgeons valued palliative and end-of-life care but reported multilevel barriers to its provision. These data will inform strategies to reduce these perceived barriers.