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Item Addressing Personal Barriers to Advance Care Planning: Qualitative Investigation of a Mindfulness-Based Intervention for Adults with Cancer and Their Family Caregivers(Cambridge, 2018) Cottingham, Ann H.; Beck-Coon, Kathleen; Bernat, Jannifer K.; Helft, Paul R.; Schmidt, Karen; Shields, Cleveland G.; Torke, Alexia M.; Johns, Shelley A.; Medicine, School of MedicineObjective 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. Result Four 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 results The 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.Item Assessment of Discordance Between Surrogate Care Goals and Medical Treatment Provided to Older Adults With Serious Illness(JAMA Network, 2020-05) Comer, Amber R.; Hickman, Susan E.; Slaven, James E.; Monahan, Patrick O.; Sachs, Greg A.; Wocial, Lucia D.; Burke, Emily S.; Torke, Alexia M.; Health Sciences, School of Health and Human SciencesImportance: 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.Item The Association of Surrogate Decision Makers’ Religious and Spiritual Beliefs with End of Life Decisions(Elsevier, 2020-02) Torke, Alexia M.; Fitchett, George; Maiko, Saneta; Burke, Emily S.; Slaven, James E.; Newton Watson, Beth; Ivy, Steven; Monahan, Patrick O.; Biostatistics, School of Public HealthContext: 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.Item The Avoidable Transfer Scale: A New Tool for Identifying Potentially Avoidable Hospital Transfers of Nursing Home Residents(Oxford University Press, 2022-05-11) Carnahan, Jennifer L.; Unroe, Kathleen T.; Evans, Russell; Klepfer, Sarah; Stump, Timothy E.; Monahan, Patrick O.; Torke, Alexia M.; Medicine, School of MedicineBackground 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.Item Care Consistency With Documented Care Preferences: Methodologic Considerations for Implementing the “Measuring What Matters” Quality Indicator(Elsevier, 2016-11) Unroe, Kathleen T.; Hickman, Susan E.; Torke, Alexia M.; Department of Medicine, School of MedicineA basic tenet of palliative care is discerning patient treatment preferences and then honoring these preferences, reflected by the inclusion of “Care Consistency With Documented Care Preferences” as one of 10 “Measuring What Matters quality” indicators. Measuring What Matters indicators are intended to serve as a foundation for quality measurement in health care settings. However, there are a number of logistic and practical issues to be considered in the application of this quality indicator to clinical practice. In this brief methodologic report, we describe how care consistency with documented care preferences has been measured in research on patients near the end of life. Furthermore, we outline methodologic challenges in using this indicator in both research and practice, such as documentation, specificity and relevance, preference stability, and measuring nonevents. Recommendations to strengthen the accuracy of measurement of this important quality marker in health care settings include consistent recording of preferences in the medical record, considerations for selection of treatment preferences for tracking, establishing a protocol for review of preferences, and adoption of a consistent measurement approach.Item CEASE: A guide for clinicians on how to stop resuscitation efforts(ATS, 2015-03) Torke, Alexia M.; Bledsoe, Patricia; Wocial, Lucia D.; Bosslet, Gabriel T.; Helft, Paul R.; Department of Medicine, IU School of MedicineResuscitation programs such as Advanced Cardiac Life Support, Cardiac Life Support, Pediatric Advanced Life Support, and the Neonatal Resuscitation Program offer inadequate guidance to physicians who must ultimately decide when to stop resuscitation efforts. These decisions involve clinical and ethical judgments and are complicated by communication challenges, group dynamics, and family considerations. This article presents a framework, summarized in a mnemonic (CEASE: Clinical Features, Effectiveness, Ask, Stop, Explain), for how to stop resuscitation efforts and communicate that decision to clinicians and ultimately the patient’s family. Rather than a decision rule, this mnemonic represents a framework based on best evidence for when physicians are considering stopping resuscitation efforts and provides guidance on how to communicate that decision.Item Chaplain care in pediatric oncology: Insight for interprofessional collaboration(Wiley, 2019-12) Lion, Alex H.; Skiles, Jodi L.; Newton Watson, Beth; Young, J. Daniel; Torke, Alexia M.; Pediatrics, School of MedicineBackground 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.Item Code status orders in hospitalized patients with COVID-19(Elsevier, 2023-08-23) Comer, Amber R.; Fettig, Lyle; Bartlett, Stephanie; Sinha, Shilpee; D’Cruz, Lynn; Odgers, Aubrey; Waite, Carly; Slaven, James E.; White, Ryan; Schmidt, Amanda; Petras, Laura; Torke, Alexia M.; Medicine, School of MedicineBackground: 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.Item Communicating with Clinicians: The Experiences of Surrogate Decision‐Makers for Hospitalized Older Adults(2012-08) Torke, Alexia M.; Petronio, Sandra; Purnell, Christianna E.; Sachs, Greg A.; Helft, Paul R.; Callahan, Christopher M.OBJECTIVES: To describe communication experiences of surrogates who had recently made a major medical decision for a hospitalized older adult. DESIGN: Semistructured interviews about a recent hospitalization. SETTING: Two hospitals affiliated with one large medical school: an urban public hospital and a university-affiliated tertiary referral hospital. PARTICIPANTS: Surrogates were eligible if they had recently made a major medical decision for a hospitalized individual aged 65 and older and were available for an interview within 1 month (2-5 months if the patient died). MEASUREMENTS: Interviews were audio-recorded, transcribed, and analyzed using methods of grounded theory. RESULTS: Thirty-five surrogates were interviewed (80% female, 44% white, 56% African American). Three primary themes emerged. First, it was found that the nature of surrogate-clinician relationships was best characterized as a relationship with a "team" of clinicians rather than individual clinicians because of frequent staff changes and multiple clinicians. Second, surrogates reported their communication needs, including frequent communication, information, and emotional support. Surrogates valued communication from any member of the clinical team, including nurses, social workers, and physicians. Third, surrogates described trust and mistrust, which were formed largely through surrogates' communication experiences. CONCLUSION: In the hospital, surrogates form relationships with a "team" of clinicians rather than with individuals, yet effective communication and expressions of emotional support frequently occur, which surrogates value highly. Future interventions should focus on meeting surrogates' needs for frequent communication and high levels of information and emotional support.Item Complex Transitions from Skilled Nursing Facility to Home: Patient and Caregiver Perspectives(Springer, 2021) Carnahan, Jennifer L.; Inger, Lev; Rawl, Susan M.; Iloabuchi, Tochukwu C.; Clark, Daniel O.; Callahan, Christopher M.; Torke, Alexia M.; Medicine, School of MedicineBackground: 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.