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Caregivers of children with medical complexity face daily tasks comparable to pediatric critical care nursing with multiple stressors. This may result in emotional and spiritual distress. Caregivers may also rely on their religion and spirituality to cope. Chaplains have the potential to support caregivers in this setting, beginning with spiritual assessment. This study's purpose was to verify the feasibility and acceptability of the Spiritual Care Assessment and Intervention framework adapted for home-based chaplaincy with caregivers of children receiving home mechanical ventilation (SCAI-Peds). A quasi-experimental, proof-of-concept trial with N = 6 caregivers and two board certified chaplains was carried out. SCAI-Peds was acceptable and feasible to caregivers, delivered with high fidelity, and was also acceptable to the chaplains. Home-based intervention delivery may provide more room for reflection and reframing than acute care settings. The results warrant advancing SCAI-Peds beyond the pilot stage.

Having a family member hospitalized in the intensive care unit (ICU) can be a stressful experience for family members, encompassing both psychological and spiritual distress. With over 5 million ICU admissions annually in the United States, it is imperative to enhance the experiences and coping mechanisms of ICU family members. In particularly challenging situations, some family members even face psychological effects known as post-intensive care syndrome-family, which includes anxiety, depression, and posttraumatic stress. The distress may be worsened when patients and families experience poor communication or medical care, which has been shown to be more common among minoritized populations including Black and Hispanic patients and families. Family members' emotional and spiritual distress also has an effect on the medical decisions they make for the patient. While research has delved into the impact of spiritual care for ICU family members, further investigation is still needed to determine the most effective approaches for delivering such care. This narrative review will describe a conceptual model aimed at guiding future research in this endeavor. The model proposes that chaplains provide emotional, spiritual, and information support to ICU family members. This affects both their ICU experience, decision making, and outcomes for the patient and family. This process is also affected by characteristics of the family such as race, ethnicity, and economic status. This model helps identify gaps in research, including the need for randomized trials of spiritual care that identify mechanisms underlying outcomes and demonstrate impact of spiritual care, and consider race, ethnicity, and other characteristics.

The growing number of people living with dementia (PLWD) requires a coordinated clinical response to deliver pragmatic, evidence-based interventions in frontline care settings. However, infrastructure to support such a response is lacking. Moreover, there are too few researchers conducting rigorous embedded pragmatic clinical trials (ePCTs) to make the vision of high quality, widely accessible dementia care a reality. National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease and Related Dementias Clinical Trials (IMPACT) Collaboratory seeks to improve the pipeline of early career researchers qualified to lead ePCTs by funding career development awards. Even with support from the Collaboratory, awardees face practical and methodological challenges to success, recently exacerbated by the COVID-19 pandemic. We first describe the training opportunities and support network for the IMPACT CDA recipients. This report then describes the unique career development challenges faced by early-career researchers involved in ePCTs for dementia care. Topics addressed include challenges in establishing a laboratory, academic promotion, mentoring and professional development, and work-life balance. Concrete suggestions to address these challenges are offered for early-career investigators, their mentors, and their supporting institutions. While some of these challenges are faced by researchers in other fields, this report seeks to provide a roadmap for expanding the work of the IMPACT Collaboratory and initiating future efforts to recruit, train, and retain talented early-career researchers involved in ePCTs for dementia care., (© 2023 The American Geriatrics Society.)

Context: Communication quality in the hospital impacts outcomes like satisfaction, depression, and anxiety for families, and assessment tools must be efficient and reliable., Objectives: We developed the Quick FICS-5 and -10, shorter versions of the 30-item Family Inpatient Communication Survey (FICS)., Methods: The Quick FICS were developed from the original FICS study of hospitalized patients 65+ and their surrogates. The development sample came from the original FICS-30 scale. The validation sample came from a randomized controlled trial of surrogates for adult ICU patients. Participants were family members of patients on medical ICU or inpatient medicine services at three hospitals in a Midwest metropolitan area. We evaluated validity and reliability using factor analysis, internal consistency, and associations with surrogate psychological and decision-making outcomes., Results: In the development sample of 364 patient/surrogate dyads, most surrogates were adult children (66.8%), female (70.9%), and white (68.9%). We identified 5-item and 10-item surveys. Exploratory factor analysis supported an overall communication score for the FICS-5 and FICS-10, as well as information and emotional support subscales for the FICS-10. There was high internal reliability (Cronbach's alpha was 0.83 for the FICS-5 and 0.90 for the FICS-10; information and emotional support subscales were 0.89 and 0.75 respectively). There was good predictive validity when comparing FICS scores to outcomes six to eight weeks after discharge, including anxiety (P = -0.13; P = 0.0234), and satisfaction with the hospital stay (P = 0.48; P < 0.0001). Similarly, the validation sample (n = 188) revealed Cronbach's alpha ranging from 0.81 to 0.93 and significant correlations (P < 0.05) with concurrent distress, anxiety, depression, and decision regret., Conclusions: The Quick FICS offers efficient, valid, and reliable evaluation of communication quality in the hospital that can be useful for research and quality improvement., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The COVID-19 pandemic created complex challenges regarding the timing and appropriateness of do-not-attempt cardiopulmonary resuscitation (DNACPR) and/or Do Not Intubate (DNI) code status orders. This paper sought to determine differences in utilization of DNACPR and/or DNI orders during different time periods of the COVID-19 pandemic, including prevalence, predictors, timing, and outcomes associated with having a documented DNACPR and/or DNI order in hospitalized patients with COVID-19., Methods: A cohort study of hospitalized patients with COVID-19 at two hospitals located in the Midwest. DNACPR code status orders including, DNI orders, demographics, labs, COVID-19 treatments, clinical interventions during hospitalization, and outcome measures including mortality, discharge disposition, and hospice utilization were collected. Patients were divided into two time periods (early and late) by timing of hospitalization during the first wave of the pandemic (March-October 2020)., Results: Among 1375 hospitalized patients with COVID-19, 19% ( n  = 258) of all patients had a documented DNACPR and/or DNI order. In multivariable analysis, age (older) p  =< 0.01, OR 1.12 and hospitalization early in the pandemic p  = 0.01, OR 2.08, were associated with having a DNACPR order. Median day from DNACPR order to death varied between cohorts p  => 0.01 (early cohort 5 days versus late cohort 2 days). In-hospital mortality did not differ between cohorts among patients with DNACPR orders, p  = 0.80., Conclusions: There was a higher prevalence of DNACPR and/or DNI orders and these orders were written earlier in the hospital course for patients hospitalized early in the pandemic versus later despite similarities in clinical characteristics and medical interventions. Changes in clinical care between cohorts may be due to fear of resource shortages and changes in knowledge about COVID-19., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

Background: Dementia affects 6.5 million persons in the U.S., a number which is expected to double by 2060. More than half of persons with dementia die at home, creating an enormous burden for both patients and caregivers. However, there is a paucity of research on community-based palliative care interventions for advanced dementia., Objectives: The Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE) study is a randomized trial to test the effectiveness of a collaborative predominantly telehealth home-based intervention for persons with advanced dementia residing in the community and their primary, informal caregivers. The primary aim is to determine if this palliative care focused supportive intervention is superior to usual care in reducing neuropsychiatric symptoms of dementia. Secondarily, intervention effects on other patient symptoms (e.g., pain), caregiver distress and depression, and emergency department (ED)/hospitalization events are examined., Methods: The study population consists of participant pairs comprising a person with dementia and their primary, informal caregiver. The person with dementia must be ≥65 years old, with a clinical diagnosis of moderate to severe dementia. A total of 201 demographically and socioeconomically diverse participant pairs have been randomized to the IN-PEACE care coordination intervention (n = 99) or usual care (n = 102). Outcome assessments are conducted at baseline, and quarterly for up to 2 years (3, 6, 9, 12, 15, 18, 21, and 24 months)., Discussion: IN-PEACE results will inform care for the large number of individuals with advanced dementia residing in the community and enable informal caregivers to provide effective home-based care., Trial Registration: clinicaltrials.gov Identifier: NCT03773757., Competing Interests: Declaration of Competing Interest None of the authors have any conflicts of interest to disclose., (Copyright © 2023. Published by Elsevier Inc.)

Background: POLST orders are actionable in an emergency, so it is important that the decisions be of high quality and concordant with current preferences. The goal of this study is to determine the relationship between concordance and decision quality outcomes, including decision satisfaction and decisional conflict, among nursing facility residents and surrogates who recall POLST., Methods: We completed structured interviews in 29 nursing facilities with 275 participants who had previously signed a POLST form. This included residents who were still making their own medical decisions (n = 123) and surrogate decision-makers for residents without decisional capacity (n = 152). POLST recall was defined as remembering talking about and/or completing the POLST form previously signed by the participant. Concordance was determined by comparing preferences elicited during a standardized interview with the POLST form on file. Decisional conflict, decision satisfaction, and conversation quality were assessed with standardized tools., Results: Half of participants (50%) remembered talking about or completing the POLST form, but recall was not associated with the length of time since POLST completion or concordance with existing preferences. In multivariable analyses, there was no association between POLST recall, concordance, and decision quality outcomes, though satisfaction was associated with conversation quality., Conclusions: Half of the residents and surrogates in this study recalled the POLST they previously signed. Neither the age of the form nor the ability to recall the POLST conversation should be considered indicators of whether existing POLST orders match current preferences. Findings confirm a relationship between POLST conversation quality and satisfaction, underscoring the importance of POLST completion as a communication process., (© 2023 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Background: The goal of this paper is to develop a more thorough understanding of the experiences of LGBT older adults living with dementia and their caregivers., Methods: A phenomenological approach using in-depth interviews with current or former caregivers of LGBT persons living with Alzheimer's disease (AD) was conducted., Results: Participants ranged in age from 44-77 years old; 74% were lesbian, 16% gay, 5% straight, and 5% unknown. Five themes were identified from the analysis: Caregiver tension and isolation; financial stress & security; lack of social support & connection; engineering grief support, and entrapment of past and present stigma and discrimination., Conclusions: Discrimination related to LGBT status was an important theme over the participants' lives and occurred for several during dementia care. While other themes were similar to prior AD studies, LGBT status affected these other aspects of the caregiving experience. Findings can inform future programs that better meet needs of LGBT people and those who care for them., (© 2023. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Context: Critical illness of a family member is associated with high emotional and spiritual distress and difficult medical decisions., Objectives: To determine if a semistructured spiritual care intervention improves the well-being of family surrogate decision makers in intensive care (ICU) settings., Methods: This study is a randomized, allocation-concealed, parallel group, usual care-controlled, single-blind trial of patient/surrogate dyads in five ICUs in one Midwest, academic medical center. Patients were 18 and older admitted to the ICU and unable to make medical decisions. The intervention involved proactive contact from the chaplain, scheduled, semi-structured visits, weekly follow-up, and bereavement calls. The control group received usual care. The primary endpoint was the surrogate's anxiety (Generalized Anxiety Disorders-7 scale), six to eight weeks after discharge., Results: Of 192 patient/surrogate dyads enrolled, 128 completed outcome assessments. At follow-up, anxiety in the intervention group was lower than control (median score 1 (interquartile range 0,6) vs. 4 (1,9), P = 0.0057). The proportion of patients with a minimal clinically important difference (MCID) in anxiety of 2+ was 65.2% in the intervention group vs. 49.2% in control. The odds of an MCID remained higher in adjusted analysis (Odds Ratio 3.11, 95% confidence interval 1.18, 8.21; P = 0.0218) The adjusted odds of an MCID were higher for spiritual well-being (OR 3.79, CI 1.41,10.17; P = 0.0081). Satisfaction with spiritual care was also higher (adjusted mean 3.5 ± 0.4 vs. 2.9 ± 0.1); P < .0001)., Conclusions: Proactive, semistructured spiritual care delivered by chaplains improves well-being for ICU surrogates. Results provide evidence for inclusion of chaplains in palliative and intensive care teams., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Many advanced cancer patients struggle with anxiety, depressive symptoms, and anger toward God and illness-related stressors. Patients may perceive their illness as an injustice (i.e., appraise their illness as unfair, severe, and irreparable or blame others for their illness), which may be a risk factor for poor psychological and spiritual outcomes. This study examined relations between cancer-related perceived injustice and psycho-spiritual outcomes as well as potential mediators of these relationships., Methods: Advanced lung (n = 102) and prostate (n = 99) cancer patients completed a one-time survey. Using path analyses, we examined a parallel mediation model including the direct effects of perceived injustice on psycho-spiritual outcomes (i.e., anxiety, depressive symptoms, anger about cancer, anger towards God) and the indirect effects of perceived injustice on psycho-spiritual outcomes through two parallel mediators: meaning making and acceptance of cancer. We then explored whether these relations differed by cancer type., Results: Path analyses indicated that perceived injustice was directly and indirectly-through acceptance of cancer but not meaning making-associated with psycho-spiritual outcomes. Results did not differ between lung and prostate cancer patients., Conclusions: Advanced cancer patients with greater perceived injustice are at higher risk for poor psycho-spiritual outcomes. Acceptance of cancer, but not meaning making, explained relationships between cancer-related perceived injustice and psycho-spiritual outcomes. Findings support testing acceptance-based interventions to address perceived injustice in advanced cancer patients., (© 2022 John Wiley & Sons Ltd.)

Purpose: Previous studies have shown that black patients are more likely to prefer life-sustaining treatments such as cardiopulmonary resuscitation at end-of-life (EOL) compared to non-Hispanic white patients. Given prior racial disparities in health care, distrust has been proposed to explain these preferences. As many hospitalized older adults require surrogates to make medical decisions, we explored surrogates' code status preferences and the role of trust in these decisions., Methods: We conducted secondary analyses of an observational study of patient/surrogate dyads admitted to three hospitals in a Midwest metropolitan area. Distrust was assessed using the Revised Health Care System Distrust Scale. A single item asked the surrogate which code status they thought was best for the patient, full code or do not resuscitate., Results: We enrolled 350 patient/surrogate dyads (101 black; 249 white). In bivariate analysis, higher proportion of black surrogates preferred full code (62.4% vs. 38.3%, p =0.0001). After adjusting for trust and sociodemographic and psychological covariates, race was still significantly associated with preference for full code (adjusted odds ratio=2.13; 95% confidence interval: 1.16-3.92; p =0.0153). Surrogate race was not associated with distrust in bivariate or multivariable analysis, adjusting for sociodemographic and psychological covariates ( p =0.3049)., Conclusion: Although black race was associated with preferences for full code status, we observed no association between race and distrust. Differences in code status preference may be due to other factors related to race and culture. To ensure that patients are receiving EOL care that is consistent with their values, more work is needed to understand the cultural complexities behind EOL care preferences., Competing Interests: No competing financial interests exist., (© Sang Yoon Na et al., 2022; Published by Mary Ann Liebert, Inc.)

Background: Families of critically ill patients and their healthcare team must make life and death decisions together. Ideally, intensive care unit team members collaborate in the support of patients and families as goals of care are clarified and care plans are created. Few interventions exist to improve collaboration around this process. Team-based communication skills training about goals-of-care conversations represents one promising intervention. Objective: The purpose of this study was to examine the impact of a communication skills training workshop on coordination and collaboration among ICU team members. Design: Participants from a single institution completed surveys immediately before and six months after completion of the workshop. All participants, including nurses, physicians, social workers, and chaplains, completed a goals-of-care Relational Coordination survey. Nurses and physicians completed a Jefferson Scale of Attitudes Toward Physician-Nurse Collaboration (JSAPNC) survey. Results: Thirty-six participants were enrolled in three workshops. Seventeen and fifteen participants completed the relational coordination survey and JSAPNC respectively at both time points. The mean intergroup relational coordination index increased from 2.94 pre-intervention to 3.19 6-month post ( P = .002, d= .89). Nurse relational coordination index ratings of all other groups increased from 2.84 pre-intervention to 3.08 6-month post ( p = .004, d= 1.23). Mean total scores on the JSAPNC survey did not change significantly from pre-intervention (53.8) to 6-month post (54.2, P = .45). Conclusion: Team-based communication skills training may improve ICU team relational coordination surrounding goals of care.

Background: Behavioral, psychological, and physical symptoms are prevalent in advanced dementia, as well as major contributors to poor quality of life, health care costs, caregiver burden, and nursing home placement. Objectives: To determine the frequency and severity of symptoms in persons with advanced dementia living in the community, as well as the association between symptoms and satisfaction with care, and the identification of factors associated with symptom burden. Design: Baseline data from a clinical trial testing the effectiveness of collaborative care home-based management for patients with advanced dementia. Setting/Subjects: Two hundred and one patient-caregiver dyads from an urban area in the United States, who were still residing in the community. Measurements: Caregivers completed the Symptom Management in End-of-Life Dementia (SM-EOLD) and Satisfaction with Care in End-of-Life Dementia (SWC-EOLD) scales. Results: Patients' mean age was 83.1; 67.7% were women, and most were either White (50.2%) or African American (43.8%). Most (88.1%) had severe dementia (Functional Assessment Staging Tool [FAST] stage 6 or 7). SM-EOLD mean score was 29.3 (on 0-45 scale) and SWC-EOLD score was 32.6 (on 10-40 scale). Pain, agitation, anxiety, and resistiveness to care were present at least weekly in ≥40% of patients. Multivariable linear regression modeling showed that higher neuropsychiatric symptom severity (assessed by the Neuropsychiatric Inventory), increased caregiver strain, and higher medical comorbidity were all independently associated with increased symptom burden. Satisfaction with care was high and had only a modest correlation ( r  = 0.20) with symptom burden. Conclusions: Community-dwelling patients with advanced dementia and their caregivers may benefit from home-based palliative care interventions to identify and manage burdensome symptoms.

Background: Although religion and spirituality are important to adults with cancer and their family caregivers, few studies have tested spiritual care interventions in the outpatient setting., Aim: To determine the feasibility, acceptability, and preliminary effects of chaplain-delivered, semi-structured spiritual care to adult outpatients with advanced cancer and their caregivers., Design: In this pre/post pilot intervention study, board-certified chaplains utilized the Spiritual Care Assessment and Intervention (SCAI) framework during 4 individual sessions. Surveys at baseline and at 1, 6, and 12 weeks post-intervention assessed spiritual well-being, quality of life, depression, anxiety, and religious coping., Setting/participants: We enrolled U.S. adult outpatients with or without an eligible family caregiver. Eligible patients were at least 18 years old and at least 2 weeks post-diagnosis of incurable and advanced-stage lung or gastrointestinal (GI) cancer., Results: Of 82 eligible patients, 24 enrolled (29.3%); of 22 eligible caregivers, 18 enrolled (81.8%). Four planned chaplain visits were completed by 87.5% of patients and 77.8% of caregivers. All enrolled participants completed baseline surveys, and more than 75% completed follow-up surveys at 2 of 3 time points. More than 80% of patients and caregivers reported they would recommend the sessions to a friend or family member. Patients' spiritual well-being improved significantly at all timepoints compared to baseline: 1-week post (p < .006), 6-weeks post (p < .001), and 12-weeks post (p < .004)., Conclusions: Spiritual care through SCAI is feasible, acceptable, and shows promise in improving spiritual well-being and other important outcomes in advanced-stage cancer patients and family caregivers. Further investigation is warranted.

Background and Objectives: Prior approaches to identifying potentially avoidable hospital transfers (PAHs) of nursing home residents have involved detailed root cause analyses that are difficult to implement and sustain due to time and resource constraints. They relied on the presence of certain conditions but did not identify the specific issues that contributed to avoidability. We developed and tested an instrument that can be implemented using review of the electronic medical record., Research Design and Methods: The OPTIMISTIC project was a Centers for Medicare and Medicaid Services demonstration to reduce avoidable hospital transfers of nursing home residents. The OPTIMISTIC team conducted a series of root cause analyses of transfer events, leading to development of a 27-item instrument to identify common characteristics of PAHs (Stage 1). To refine the instrument, project nurses used the electronic medical record (EMR) to score the avoidability of transfers to the hospital for 154 nursing home residents from 7 nursing homes from May 2019 through January 2020, including their overall impression of whether the transfer was avoidable (Stage 2). Each transfer was rated independently by 2 nurses and assessed for interrater reliability with a kappa statistic., Results: Kappa scores ranged from -0.045 to 0.556. After removing items based on our criteria, 12 final items constituted the Avoidable Transfer Scale. To assess validity, we compared the 12-item scale to nurses' overall judgment of avoidability of the transfer. The 12-item scale scores were significantly higher for submissions rated as avoidable than those rated unavoidable by the nurses (mean 5.3 vs 2.6, p  < .001)., Discussion and Implications: The 12-item Avoidable Transfer Scale provides an efficient approach to identify and characterize PAHs using available data from the EMR. Increased ability to quantitatively assess the avoidability of resident transfers can aid nursing homes in quality improvement initiatives to treat more acute changes in a resident's condition in place., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background and Objectives: The distinct illness trajectory after acute ischemic stroke demands a better understanding of the utilization of palliative care consultations (PCC) for this patient cohort. This study sought to determine the prevalence, predictors, and outcomes associated with PCC for patients hospitalized with severe ischemic stroke., Methods: This multicenter cohort study was conducted at four hospitals (2 comprehensive and 2 primary stroke centers) between January, 2016 and December, 2019. We included all patients with a discharge diagnosis of ischemic stroke and an initial National Institutes of Health Stroke Scale (NIHSS) of 10 or greater. We compared patient sociodemographic, clinical and care characteristics as well as hospital outcomes between patients who did and did not receive PCC., Results: The study included 1297 patients hospitalized with severe ischemic stroke. PCC occurred for 20% of all patients and this proportion varied across institutions from 11.9% to 43%. Less than half (43%) of patients who died in the hospital. In multivaraible analysis, PCC was less likely in female patients (OR .76, 95% CI .59, .99, P=0.04) but more likely in patients with higher NIHSS (OR1.95, 95% CI 1,13, 3.37, P=0.02). Patients with PCC had higher rates of moving to a plan focused on comfort measures (CMO) (P<0.01) and removal of artificial nutrition as part of a move to CMO (P<0.01). In a sub analysis of patients who died in the hospital and received PCC, patients who died on or before hospital day 3 were less likely to receive PCC than patients who died on or after hospital day 4 (24% v. 51%) (P=<0.01)., Conclusions: Most patients with severe stroke do not receive PCC, even among those who experience in-hospital death. The results of this study indicate there are missed opportunities for PCC to help reduce suffering after severe stroke., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Assessment of spiritual suffering and provision of spiritual care are a central component of palliative care (PC). Unfortunately, many PC clinicians, like most medical providers, have received limited or superficial training in spirituality and spiritual distress. This article, written by a group of spiritual care providers, and other PC and hospice clinicians, offers a more in-depth look at religion and spirituality to help to enhance readers' current skills while offering a practical roadmap for screening for spiritual distress and an overview of partnering with colleagues to ensure patients receive values-aligned spiritual care provision.

Purpose: To understand clinicians' perspectives on dialysis care of undocumented immigrants. Methods: A 21-item Internet-based survey using Survey Monkey ® was sent to 765 physicians and nurses at a safety-net hospital located in Indianapolis, IN. Moral distress thermometer score was used to assess moral distress (MD). Participants were asked to rate their MD regarding five ethically challenging clinical situations: (1) frail patients with multiple comorbidities and poor quality of life, (2) patients with dementia, (3) a noncompliant patient with frequent emergency room (ER) visits, (4) violent patients with potential harm to others, and (5) undocumented immigrants receiving emergent dialysis only. Key Results: There were 299 of 775 participants (38.5% response rate) who completed the survey; 49.5% were physicians. Nearly half (48%) reported severe MD and 33% reported none to mild. In adjusted ordered logistic regression, females had significantly higher odds of MD (odds ratio [OR]=2.12, CI 1.03-4.33), and nurses had lower MD than fellows/residents (OR=0.14, CI 0.03-0.63). Over 70% of respondents attributed their distress to suffering of patients due to inadequate dialysis and tension between what is considered ethical and the law allows or forbids; 78% believed the patients' quality of life to be worse than those who receive routine hemodialysis. Among nephrologists, caring for these patients led to MD levels like that of dealing with a violent dialysis patient. Conclusions: Emergent-only dialysis causes significant MD in clinicians. Legal and fiscal policies need to be balanced with the ethical and moral commitments of providers for ensuring standard of care to all., Competing Interests: No competing financial interests exist., (© Areeba Jawed et al., 2021; Published by Mary Ann Liebert, Inc.)

Background: The reasons for discordance between advance care planning (ACP) documentation and current preferences are not well understood. The POLST form offers a unique opportunity to learn about the reasons for discordance and concordance that has relevance for POLST as well as ACP generally., Design: Qualitative descriptive including constant comparative analysis within and across cases., Setting: Twenty-six nursing facilities in Indiana., Participants: Residents (n = 36) and surrogate decision-makers of residents without decisional capacity (n = 37)., Measurements: A semi-structured interview guide was used to explore the reasons for discordance or concordance between current preferences and existing POLST forms., Findings: Reasons for discordance include: (1) problematic nursing facility practices related to POLST completion; (2) missing key information about POLST treatment decisions; (3) deferring to others; and (4) changes over time. Some participants were unable to explain the discordance due to a lack of insight or inability to remember details of the original POLST conversation. Explanations for concordance include: (1) no change in the resident's medical condition and/or the resident is unlikely to improve; (2) use of the substituted judgment standard for surrogate decision-making; and (3) fixed opinion about what is "right" with little to no insight., Conclusion: Participant explanations for discordance between existing POLST orders and current preferences highlight the importance of adequate structures and processes to support high quality ACP in nursing facilities. Residents with stable or poor health may be more appropriate candidates for POLST than residents with a less clear prognosis, though preferences should be revisited periodically as well as when there is a change in condition to help ensure existing documentation is concordant with current treatment preferences., (© 2021 The American Geriatrics Society.)

Background: POLST is widely used to document the treatment preferences of nursing facility residents as orders, but it is unknown how well previously completed POLST orders reflect current preferences (concordance) and what factors are associated with concordance., Objectives: To describe POLST preference concordance and identify factors associated with concordance., Design: Chart reviews to document existing POLST orders and interviews to elicit current treatment preferences., Setting: POLST-using nursing facilities (n = 29) in Indiana., Participants: Nursing facility residents (n = 123) and surrogates of residents without decisional capacity (n = 152)., Measurements: Concordance was determined by comparing existing POLST orders for resuscitation, medical interventions, and artificial nutrition with current treatment preferences. Comfort-focused POLSTs contained orders for do not resuscitate, comfort measures, and no artificial nutrition., Results: Overall, 55.7% (123/221) of residents and 44.7% (152/340) of surrogates participated (total n = 275). POLST concordance was 44%, but concordance was higher for comfort-focused POLSTs (68%) than for non-comfort-focused POLSTs (27%) (p < 0.001). In the unadjusted analysis, increasing resident age (OR 1.04, 95% CI 1.01-1.07, p < 0.01), better cognitive functioning (OR 1.07, 95% CI 1.02-1.13, p < 0.01), surrogate as the decision-maker (OR 2.87, OR 1.73-4.75, p < 0.001), and comfort-focused POLSTs (OR 6.01, 95% CI 3.29-11.00, p < 0.01) were associated with concordance. In the adjusted multivariable model, only having an existing comfort-focused POLST was associated with higher odds of POLST concordance (OR 5.28, 95% CI 2.59-10.73, p < 0.01)., Conclusions: Less than half of all POLST forms were concordant with current preferences, but POLST was over five times as likely to be concordant when orders reflected preferences for comfort-focused care. Findings suggest a clear need to improve the quality of POLST use in nursing facilities and focus its use among residents with stable, comfort-focused preferences., (© 2021 The American Geriatrics Society.)

Background: Patients who undergo the complex series of transitions from the hospital to a skilled nursing facility (SNF) back to home represent a unique patient population with multiple comorbidities and impaired functional abilities. The needs and outcomes of patients who are discharged from the hospital to SNF before returning home are understudied in care transitions scholarship., Objective: To study the patient and caregiver challenges and perspectives on transitions from the hospital to the SNF and back to home., Design: Between 48 h and 1 week after discharge from the SNF, semi-structured interviews were performed with a convenience sample of patients and caregivers in their homes. Within 1 to 2 weeks after the baseline interview, follow-up interviews were performed over the phone., Participants: A total of 39 interviewees comprised older adults undergoing the series of transitions from hospital to skilled nursing facility to home and their informal caregivers., Main Measures: A constructionist, grounded-theory approach was used to code the interviews, identify major themes and subthemes, and develop a theoretical model explaining the outcomes of the SNF to home transition., Key Results: The mean age of the patients was 76.6 years and 64.8 years for the caregivers. Four major themes were identified: comforts of home, information needs, post-SNF care, and independence. Patients noted an extended time away from home and were motivated to return to and remain in the home. Information needs were variably met and affected post-SNF care, including medication management, appointments, and therapy gains and setbacks. Interviewees identified independent function at home as the most important outcome of the transition home., Conclusions: Post-SNF in home support is needed rapidly after discharge from the SNF to prevent adverse outcomes. In-home support needs to be highly individualized based on a patient's and caregiver's unique situation and needs.

Background: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices., Objective: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms., Design: Chart review and interviews., Setting: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use)., Participants: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms., Main Measurements: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83)., Key Results: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance., Conclusions: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.

The primary objective was to review pediatric ethics consultations (PECs) at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, with the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach.

Goals of care conversations are important but complex for clinicians caring for older adults. Although clinicians tend to focus on specific medical interventions, these conversations are more successful if they begin with gaining a shared understanding of the medical conditions and possible outcomes, followed by discussion of values and goals. Although training in the medical setting is incomplete, there are many published and online resources that can help clinicians gain these valuable skills., Competing Interests: Disclosure Dr. Torke was supported by a Patient Midcareer Investigator Award in Patient Oriented Research (K24AG053794) from the National Institute on Aging., (Copyright © 2020 Elsevier Inc. All rights reserved.)

The National Institute on Aging IMbedded Pragmatic Alzheimer's Disease and Alzheimer's Disease-Related Dementias Clinical Trials (IMPACT) Collaboratory serves as a national resource for the conduct of embedded pragmatic clinical trials to improve the care of people living with dementia (PLWD) in partnership with the healthcare systems that serve them. Inherent in this objective is the need to train and support a cadre of investigators prepared to conduct this work now and in the future. The Training Core of the IMPACT Collaboratory supports the training of investigators to become experts in this field through three objectives: (1) curricula development and dissemination; (2) network generation and navigation; and (3) a career development award program. The innovative approach of the Training Core will require developing content and providing training experiences that recognize the unique challenges of research at the intersection of health systems, pragmatic trials, and PLWD and their caregivers. Ultimately, we seek to build the nation's capacity to conduct research that bridges the gaps between efficacy studies to effectiveness research to implementation science. Although foundational resources in the methods of each of these areas are already available, few actually focus on pragmatic trials embedded within healthcare systems that focus on PLWD. To bring new interventions for PLWD from efficacy to widespread implementation, researchers must build diffusability, adaptability, heterogeneity, and scalability into the design of the intervention. In achieving these objectives, the Training Core will utilize the network of investigators, institutions, and stakeholders represented in the IMPACT Collaboratory. J Am Geriatr Soc 68:S21-S27, 2020., (© 2020 The American Geriatrics Society.)

Importance: An important aspect of high-quality care is ensuring that treatments are in alignment with patient or surrogate decision-maker goals. Treatment discordant with patient goals has been shown to increase medical costs and prolong end-of-life difficulties., Objectives: To evaluate discordance between surrogate decision-maker goals of care and medical orders and treatments provided to hospitalized, incapacitated older patients., Design, Setting, and Participants: This prospective cohort study included 363 patient-surrogate dyads. Patients were 65 years or older and faced at least 1 major medical decision in the medical and medical intensive care unit services in 3 tertiary care hospitals in an urban Midwestern area. Data were collected from April 27, 2012, through July 10, 2015, and analyzed from October 5, 2018, to December 5, 2019., Main Outcomes and Measures: Each surrogate's preferred goal of care was determined via interview during initial hospitalization and 6 to 8 weeks after discharge. Surrogates were asked to select the goal of care for the patient from 3 options: comfort-focused care, life-sustaining treatment, or an intermediate option. To assess discordance, the preferred goal of care as determined by the surrogate was compared with data from medical record review outlining the medical treatment received during the target hospitalization., Results: A total of 363 dyads consisting of patients (223 women [61.4%]; mean [SD] age, 81.8 [8.3] years) and their surrogates (257 women [70.8%]; mean [SD] age, 58.3 [11.2] years) were included in the analysis. One hundred sixty-nine patients (46.6%) received at least 1 medical treatment discordant from their surrogate's identified goals of care. The most common type of discordance involved full-code orders for patients with a goal of comfort (n = 41) or an intermediate option (n = 93). More frequent in-person contact between surrogate and patient (adjusted odds ratio [AOR], 0.43; 95% CI, 0.23-0.82), patient residence in an institution (AOR, 0.44; 95% CI, 0.23-0.82), and surrogate-rated quality of communication (AOR, 0.98; 95% CI, 0.96-0.99) were associated with lower discordance. Surrogate marital status (AOR for single vs married, 1.92; 95% CI, 1.01-3.66), number of family members involved in decisions (AOR for ≥2 vs 0-1, 1.84; 95% CI, 1.05-3.21), and religious affiliation (AOR for none vs any, 4.87; 95% CI, 1.12-21.09) were associated with higher discordance., Conclusions and Relevance: This study found that discordance between surrogate goals of care and medical treatments for hospitalized, incapacitated patients was common. Communication quality is a modifiable factor associated with discordance that may be an avenue for future interventions.

Background: When working with surrogate decision-makers, physicians often encounter ethical challenges that may cause moral distress which can have negative consequences for physicians., Objective: To determine frequency of and factors associated with physicians' moral distress caring for patients requiring a surrogate., Design: Prospective survey., Participants: Physicians (n = 154) caring for patients aged 65 years and older and their surrogate decision-makers (n = 362 patient/surrogate dyads). Patients were admitted to medicine or medical intensive care services, lacked decisional capacity and had an identified surrogate., Main Measures: Moral distress thermometer., Key Results: Physicians experienced moral distress in the care of 152 of 362 patients (42.0%). In analyses adjusted for physician, patient, and surrogate characteristics, physician/surrogate discordance in preferences for the plan of care was not significantly associated with moral distress. Physicians were more likely to experience moral distress when caring for older patients (1.06, 1.02-1.10), and facing a decision about life-sustaining treatment (3.58, 1.54-8.32). Physicians were less likely to experience moral distress when caring for patients residing in a nursing home (0.40, 0.23-0.69), patients who previously discussed care preferences (0.56, 0.35-0.90), and higher surrogate ratings of emotional support from clinicians (0.94, 0.89-0.99). Physicians' internal discordance when they prefer a more comfort-focused plan than the patient is receiving was associated with significantly higher moral distress (2.22, 1.33-3.70) after adjusting for patient, surrogate, and physician characteristics., Conclusions: Physician moral distress occurs more frequently when the physician is male, the patient is older or requires decisions about life-sustaining treatments. These findings may help target interventions to support physicians. Prior discussions about patient wishes is associated with lower distress and may be a target for patient-centered interventions.

Background: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP., Aim: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs., Design: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3)., Participants: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States., Results: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3., Conclusions: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).

Context: Although religion and spirituality are important to surrogate decision makers, little is known about the role of religion in decision making regarding life-sustaining treatments., Objectives: To determine the relationships between dimensions of religion and spirituality and medical treatment decisions made by surrogates., Methods: This prospective observational study enrolled patient/surrogate dyads from three hospitals in one metropolitan area. Eligible patients were 65 years or older and admitted to the medicine or medical intensive care services. Baseline surveys between hospital days 2 and 10 assessed seven dimensions of religion and spirituality. Chart reviews of the electronic medical record and regional health information exchange six months after enrollment identified the use of life-sustaining treatments and hospice for patients who died., Results: There were 291 patient/surrogate dyads. When adjusting for other religious dimensions, demographic, and illness factors, only surrogates' belief in miracles was significantly associated with a lower surrogate preference for do-not-resuscitate status (adjusted odds ratio [aOR] 0.39; 95% CI 0.19, 0.78). Among patients who died, higher surrogate intrinsic religiosity was associated with lower patient receipt of life-sustaining treatments within the last 30 days (aOR 0.66; 95% CI 0.45, 0.97). Belief in miracles (aOR 0.30; 95% CI 0.10, 0.96) and higher intrinsic religiosity (aOR 0.70; 95% CI 0.53, 0.93) were associated with lower hospice utilization., Conclusion: Few religious variables are associated with end-of-life preferences or treatment. Belief in miracles and intrinsic religiosity may affect treatment and should be identified and explored with surrogates by trained chaplains or other clinicians with appropriate training., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: End-stage renal disease (ESRD) patients have significant symptom burden. Reduced provider awareness of symptoms contributes to underutilization of symptom management resources., Method: We hypothesized that improved nephrologist awareness of symptoms leads to symptom improvement. In this prospective, multicenter interventional study, 53 (age >65) ESRD inpatients underwent symptom assessment using the modified Edmonton Symptom Assessment System (ESAS) at admission and 1-week post-discharge. Physicians caring for the enrollees were asked if they felt their patients would die within the year, and then sequentially randomized to receive the results of the baseline survey (group 1) or to not receive the results (group 2)., Results: Fifty-two patients completed the study; 1 died. Baseline characteristics were compared. For 70% of the total cohort, physicians reported that they would not be surprised if their patient died within a year. There was no difference in baseline scores of the patients between the 2 physician groups. Severity ratings were compared between in-hospital and post discharge scores and between physicians who received the results versus those that did not. Total ESAS scores improved more in group 1 (12.9) than in group 2 (9.2; p = 0.04). Among individual symptoms, there was greater improvement in pain control (p = 0.02), and nominal improvement in itching (p = 0.03) in group 1 as compared to group 2. There were 3 palliative care consults., Conclusions: Our findings reinforce the high symptom burden prevalent in older ESRD patients. The improvement in total scores, and individual symptoms of pain and itching in group 1 indicates better symptom control when physician awareness is increased. Residual symptoms post hospitalization and low utilization of palliative care resources are suggestive of a missed opportunity by nephrologists to address the high symptom burden at the inpatient encounter, which is selective for sick patients and/or indication of inadequacy of dialysis to control these symptoms., (© 2019 S. Karger AG, Basel.)

Background: Although attending to spiritual and religious needs is part of high quality care of pediatric cancer patients, oncology clinicians may not understand the role of the chaplain, resulting in underutilization of resources and failure to fully integrate the chaplain into the clinical team. We provide a description of what the chaplain does in the care of pediatric oncology patients., Methods: We conducted a qualitative content analysis of chaplain chart notes over a one-year period on the pediatric oncology service at a freestanding children's hospital. Using criteria designed to capture multiple potential factors in chaplain referral, we selected 30 patients for thematic analysis., Results: In 2016, 166 pediatric patients were diagnosed with cancer and received ongoing care at our institution. From the 30 patients selected, 230 chaplain encounters were documented in the medical chart. Three major themes emerged. (1) The chaplains provided a rich description of spiritual and psychosocial aspects of the patient and family's experience; (2) chaplains provided diverse interventions, both religious and secular in nature; and (3) chaplains provided care within a longitudinal relationship. All three themes depend on the empathic listening by a chaplain., Conclusions: The chaplains' observations about patient and family beliefs, experiences, and emotional/spiritual states have the potential to inform the interdisciplinary care of the patient. Chaplain documentation provides insight into how spiritual care interventions and close relationships may promote patient and family well-being. In future work, we will explore how to give voice to their insights in caring for pediatric oncology patients., (© 2019 Wiley Periodicals, Inc.)

In the Intensive Care Unit (ICU), family members experience psychological and spiritual distress as they cope with fear, grief, and medical decisions for patients. The study team developed and pilot tested a semistructured chaplain intervention that included proactive contact and spiritual assessment, interventions, and documentation. An interdisciplinary team developed the intervention, the Spiritual Care Assessment and Intervention (SCAI) Framework. Three chaplains delivered the intervention to surrogates in two ICUs. There were 25 of 73 eligible patient/surrogate dyads enrolled. Surrogates had a mean age of 57.6, were 84% female and 32% African American. The majority (84%) were Protestant. All received at least one chaplain visit and 19 received three visits. All agreed they felt supported by the chaplains, and qualitative comments showed spiritual and emotional support were valued. A semistructured spiritual care intervention for ICU surrogates is feasible and acceptable. Future work is needed to demonstrate the intervention improves outcomes for surrogates and patients.

Although tissue plasminogen activator (tPA) is the only medication approved by the United States Food and Drug Administration (FDA) for acute ischemic stroke, there is no consensus about the need for informed consent for its use. As a result, hospitals throughout the U.S. have varying requirements regarding obtaining informed consent from patients for the use of tPA, ranging from no requirement for informed consent to a requirement for verbal or written informed consent. We conducted a study to (1) determine current beliefs about obtaining patients' informed consent for tPA among a large group of stroke clinicians and (2) identify the ethical, clinical, and organizational factors that influence tPA consent practices. Semi-structured interviews were conducted by trained and experienced investigators and research staff to identify key barriers to implementing acute stroke services. Part of the interview explored current beliefs and practices around informed consent for tPA. This was a multicenter study that included 38 Veterans Health Administration (VHA) hospital locations. Participants were 68 stroke team clinicians, serving primarily on the neurology (35 percent) or emergency medicine (41 percent) service. We conducted thematic analysis based on principles of grounded theory to identify codes about consent for tPA. We used interpretive convergence to ensure consistency among the individual investigators' codes and to ensure that all of the investigators agreed on coding and themes. We found that 38 percent of the stroke clinicians did not believe any form of consent was necessary for tPA, 47 percent thought that some form of consent was necessary, and 15 percent were unsure. Clinicians who believed tPA required informed consent were divided on whether consent should be written (40 percent) or verbal (60 percent). We identified three factors describing clinicians' attitudes about consent: (1) legal and policy factors, (2) ethical factors, and (3) medical factors. The lack of consensus regarding consent for tPA creates the potential for delays in treatment, uneasiness among clinicians, and legal liability. The identified factors provide a potential framework to guide discussions about developing a standard of care for acquiring the informed consent of patients for the administration of tPA., (Copyright 2019 The Journal of Clinical Ethics. All rights reserved.)

Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars , which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Context: It is especially important that patients are well informed when making high-stakes, preference-sensitive decisions like those on the Physician Orders for Life-Sustaining Treatment (POLST) form. However, there is currently no way to easily evaluate whether patients understand key concepts when making these important decisions., Objectives: To develop a POLST knowledge survey., Methods: Expert (n = 62) ratings of key POLST facts were used to select items for a POLST knowledge survey. The survey was administered to nursing facility residents (n = 97) and surrogate decision-makers (n = 112). A subset (n = 135) were re-administered the survey after a standardized advance care planning discussion to assess the scale's responsiveness to change., Results: The 19-item survey demonstrated adequate reliability (α = 0.72.). Residents' scores (x = 11.4, standard deviation 3.3) were significantly lower than surrogate scores (x = 14.7, standard deviation 2.5) (P < 0.001). Scores for both groups increased significantly after administration of a standardized advance care planning discussion (P < 0.001). Although being a surrogate, age, race, education, cognitive functioning, and health literacy were significantly associated with higher POLST Knowledge Survey scores in univariate analyses, only being a surrogate (P < 0.001) and being white (P = 0.028) remained significantly associated with higher scores in multivariate analyses., Conclusion: The 19-item POLST Knowledge Survey demonstrated adequate reliability and responsiveness to change. Findings suggest the survey could be used to identify knowledge deficits and provide targeted education to ensure adequate understanding of key clinical decisions when completing POLST., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients' and families' emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement., Method: The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.ResultFour salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

When life-sustaining treatments (LST) are no longer effective or consistent with patient preferences, limitations may be set so that LSTs are withdrawn or withheld from the patient. Many studies have examined the frequency of limitations of LST in intensive care unit (ICU) settings in the past 30 years. This systematic review describes variation and patient characteristics associated with limitations of LST in critically ill patients in all types of ICUs in the United States. A comprehensive search of the literature was performed by a medical librarian between December 2014 and April 2017. A total of 1,882 unique titles and abstracts were reviewed, 113 were selected for article review, and 36 studies were fully reviewed. Patient factors associated with an increased likelihood of limiting LST included white race, older age, female sex, poor preadmission functional status, multiple comorbidities, and worse illness severity score. Based on several large, multicenter studies, there was a trend toward a higher frequency of limitation of LST over time. However, there is large variability between ICUs in the proportion of patients with limitations and on the proportion of deaths preceded by a limitation. Increases in the frequency of limitations of LST over time suggests changing attitudes about aggressive end-of-life-care. Limitations are more common for patients with worse premorbid health and greater ICU illness severity. While some differences in the frequency of limitations of LST may be explained by personal factors such as race, there is unexplained wide variability between units.

Background: Critically ill adult patients who face medical decisions often delegate others to make important decisions. Those who are authorized to make such decisions are typically family members, friends, or legally authorized representatives, often referred to as surrogates. Making medical decisions on behalf of others produces emotional distress. Spirituality and/or religion provide significant assistance to cope with this distress. We designed this study to assess the role of surrogates' spirituality and religion (S/R) coping resources during and after making medical decisions on behalf of critically ill patients. The study's aim was to understand the role that S/R resources play in coping with the lived experiences and challenges of being a surrogate., Methods: Semistructured interviews were conducted with 46 surrogates by trained interviewers. These were audio-recorded and transcribed by research staff. Three investigators conducted a thematic analysis of the transcribed interviews. The codes from inter-rater findings were analyzed, and comparisons were made to ensure consistency., Results: The majority (67%) of surrogates endorsed belief in God and a personal practice of religion. Five themes emerged in this study. Personal prayer was demonstrated as the most important coping resource among surrogates who were religious. Trusting in God to be in charge or to provide guidance was also commonly expressed. Supportive relationships from family, friends, and coworkers emerged as a coping resource for all surrogates. Religious and nonreligious surrogates endorsed coping strategies such as painting, coloring, silent reflection, music, recreation, and reading. Some surrogates also shared personal experiences that were transformative as they cared for their ill patients., Conclusion: We conclude that surrogates use several S/R and other resources to cope with stress when making decisions for critically ill adult patients. The coping resources identified in this study may guide professional chaplains and other care providers to design a patient-based and outcome-oriented intervention to reduce surrogate stress, improve communication, increase patient and surrogate satisfaction, and increase surrogate integration in patient care. We recommend ensuring that surrogates have S/R resources actively engaged in making medical decisions. Chaplains should be involved before, during, and after medical decision making to assess and address surrogate stress. An interventional research-design project to assess the effect of spiritual care on surrogate coping before, during, and after medical decision making is also recommended.

Context: Adults who have advanced cancer experience distress, and many use religion and spirituality to cope. Research on the spiritual experiences of patients with advanced cancer will help guide the provision of high-quality spiritual care., Objectives: To qualitatively describe advanced cancer patients' spiritual experiences of illness., Methods: We conducted semistructured qualitative interviews at a single cancer center with 21 patients with stage IV solid malignancies who had a prognosis of less than 12 months, as estimated by each patient's medical oncologist. Five investigators conducted a thematic analysis of the transcribed interviews., Results: We found 31 patients who were eligible for enrollment, and 21 (67.7%) participated in interviews to thematic saturation. Using a thematic-analysis approach, five major themes emerged. Relationships with family and friends was the most important theme among all 21 patients irrespective of their religious or spiritual identity. Relationship with God and faith community was frequently identified by those who considered themselves spiritually religious. Cancer often led to reflection about the meaning of life and the nature of existential suffering. Patients addressed the extent to which identity was changed or maintained through the cancer experience, and some expressed acceptance as a way of coping with illness., Conclusions: Spiritual care for dying cancer patients should always include the exploration of relationships with family and friends, as well as God and faith community for some patients. Relationships with family, friends, and God can be a source of strength for many. Making meaning, addressing identity concerns, supporting acceptance as a resource for coping with illness, and acknowledging existential suffering will often arise for these patients., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background:: The Physician Orders for Life-Sustaining Treatment (POLST) form is an advance care planning tool designed for seriously ill patients. The discussions needed for high-quality POLST decision-making are time intensive and often do not occur in the outpatient setting., Objective:: We conducted a single-arm feasibility study of POLST facilitation by nonphysicians using Respecting Choices Last Steps, a standardized, structured approach to facilitation of POLST conversations., Setting/participants:: Community-dwelling adults aged 65 and older enrolled in a complex care management program in a Midwestern urban hospital., Measurements:: We assessed the feasibility and acceptability by determining the proportion of eligible patients who enrolled and completed the study, by adherence to the Respecting Choices protocol, and by responses to qualitative and quantitative survey items about the intervention., Results:: We enrolled 18 (58.1%) of 31 eligible patients, with a mean age of 77.8 years (standard deviation: 6.95); 12 were African American. The POLST facilitation was delivered to all 18; 10 (55.6%) completed POLST forms. Direct observation of intervention delivery using a checklist found 85% of the required elements were performed by facilitators. We completed 6- to 8-week follow-up interviews in 16 of 18 patients (88.9%). We found 87.5% of decision makers agreed or strongly agreed that "Talking about the (POLST) form helped me think about what I really want.", Conclusions:: The POLST facilitation can be successfully delivered to frail older adults in a complex care management setting, with high fidelity to protocol. Further research is needed to demonstrate the effects of this approach on decision quality and other patient-reported outcomes.

Background: Alzheimer's disease and related dementias (ADRD) impact a woman's life expectancy and her ability to participate in medical decision-making about breast cancer screening, necessitating the involvement of family caregivers. Making decisions about mammography screening for women with ADRD is stressful. There are no data that suggest that breast cancer screening helps women with ADRD live longer or better. Decision aids may improve the quality of decision-making about mammography for ADRD patients and may inform family caregivers about the risks, benefits, and need for decision-making around mammography screening., Methods/design: The Decisions about Cancer Screening in Alzheimer's Disease (DECAD) trial, a randomized controlled clinical trial, will enroll 426 dyads of older women with ADRD (≥75 years) and a family caregiver from clinics and primary-care practices in Indiana to test a novel, evidence-based decision aid. This decision aid includes information about the impact of ADRD on life expectancy, the benefit of mammograms, and the impact on the quality of life for older women with ADRD. Dyads will be randomized to receive the decision aid or active control information about home safety. This trial will examine the effect on the caregiver's decisional conflict (primary outcome) and the caregiver's decision-making self-efficacy (secondary outcome). A second follow-up at 15 months will include a brief, semi-structured interview with the caregiver regarding the patient's experience with mammograms and decision-making about mammograms. At the same time, a review of the patient's electronic medical record (EMR) will look at discussions about mammography with their primary-care physician and mammogram orders, receipt, results, and burden (e.g., additional diagnostic procedures due to false-positive results, identification of an abnormality on the screening exam but further work-up declined, and identification of a clinically unimportant cancer). A third follow-up at 24 months will extract EMR data on mammogram orders, occurrences, results, and the burden of mammograms., Discussion: We hypothesize that caregivers who receive the decision aid will have lower levels of decisional conflict and higher levels of decision-making self-efficacy compared to the control group. We also hypothesize that the DECAD decision aid will reduce mammography use among older women with ADRD., Trial Registration: Clinical Trials Register, NCT03282097 . Registered on 13 September 2017.

Objectives: To assess the use of the Indiana Physician Orders for Scope of Treatment (POST) form to record nursing home (NH) resident treatment preferences and associated practices., Design: Survey., Setting: Indiana NHs., Participants: Staff responsible for advance care planning in 535 NHs., Measurements: Survey about use of the Indiana POST, related policies, and educational activities., Methods: NHs were contacted by telephone or email. Nonresponders were sent a brief postcard survey., Results: Ninety-one percent (n=486) of Indiana NHs participated, and 79% had experience with POST. Of the 65% of NHs that complete POST with residents, 46% reported that half or more residents had a POST form. POST was most often completed at the time of admission (68%). Only 52% of participants were aware of an existing facility policy regarding use of POST; 80% reported general staff education on POST. In the 172 NHs not using POST, reasons for not using it included unfamiliarity with the tool (23%) and lack of facility policies (21%)., Conclusion: Almost 3 years after a grassroots campaign to introduce the voluntary Indiana POST program, a majority of NHs were using POST to support resident care. Areas for improvement include creating policies on POST for all NHs, training staff on POST conversations, and considering processes that may enhance the POST conversation, such as finding an optimal time to engage in conversations about treatment preferences other than a potentially rushed admission process., (© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.)

Purpose: Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites., Methods: We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1., Results: NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process., Conclusions: Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.