- Alexia Torke
Alexia Torke
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Assessing Surrogate Decision Making For Older Adults
Hospitalized older adults are often unable to make their own medical decisions due to dementia, delirium or other conditions that impair cognitive function. In such cases, physicians must work with surrogates, usually close family members, to make choices for the patient. Although there is evidence of unwanted medical treatment for seriously ill patients and strain on surrogate decision makers, there has been little study of the frequency, characteristics or outcomes of surrogate decision making for older, hospitalized adults. An observational study conducted by Dr. Torke will characterize the frequency and outcomes of decisions made by surrogates with emphasis on the surrogate's own perspective on decision making. Results from the study will serve as the basis for an intervention to improve the quality and outcomes of surrogate decision making for older, hospitalized adults and their families.Browse
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Item Mindfulness Training Supports Quality of Life and Advance Care Planning in Adults With Metastatic Cancer and Their Caregivers: Results of a Pilot Study(Sage, 2020-02) Johns, Shelley A.; Beck-Coon, Kathleen; Stutz, Patrick V.; Talib, Tasneem L.; Chinh, Kelly; Cottingham, Ann H.; Schmidt, Karen; Shields, Cleveland; Stout, Madison E.; Stump, Timothy E.; Monahan, Patrick O.; Torke, Alexia M.; Helft, Paul R.; Medicine, School of MedicineBackground: 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.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 The Role of Informed Consent for Thrombolysis in Acute Ischemic Stroke(2018-12) Comer, Amber R.; Damush, Teresa M.; Torke, Alexia M.; Williams, Linda S.; Health Sciences, School of Health and Rehabilitation SciencesAlthough 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.Item Limitation of Life-Sustaining Care in the Critically Ill: A Systematic Review of the Literature(Wiley, 2019-05) McPherson, Katie; Carlos, W. Graham, III; Emmett, Thomas W.; Slaven, James E.; Torke, Alexia M.; Medicine, School of MedicineWhen 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.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 Advance Care Planning in A Preoperative Clinic: A Retrospective Chart Review(Springer, 2019-01-02) Sinha, Shilpee; Gruber, Rachel N.; Cottingham, Ann H.; Nation, Barb; Lane, Kathleen A.; Bo, Na; Torke, Alexia; Medicine, School of MedicinePatients seen in preoperative testing clinics are at an increased risk of surgical complications and most are incapacitated for during anesthesia. Advance directives (ADs) are important to guide care in the event of emergencies when patients are unable to speak for themselves. The goal of this study was to determine the frequency with which ADs are completed for patients seen in preoperative clinics prior to elective surgery and identify demographic and clinical characteristics associated with having ADs available in the electronic medical record (EMR).Item Spiritual and Religious Coping of Medical Decision Makers for Hospitalized Older Adult Patients(Liebert, 2019-04) Maiko, Saneta M.; Ivy, Steven; Watson, Beth Newton; Montz, Kianna; Torke, Alexia M.; Medicine, School of MedicineBackground: 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.Item Factors Associated With Posthospital Nursing Facility Discharge for Patients With Impaired Decision Making(Elsevier, 2018-10) Carnahan, Jennifer L.; Inger, Lev; Young, Robert S.; Slaven, James E.; Torke, Alexia M.; Medicine, School of MedicineItem Use of the Physician Orders for Scope of Treatment Program in Indiana Nursing Homes(Wiley, 2018-07) Hickman, Susan E.; Sudore, Rebecca L.; Sachs, Greg A.; Torke, Alexia M.; Myers, Anne L.; Tang, Qing; Bakoyannis, Giorgos; Hammes, Bernard J.; School of NursingOBJECTIVES: 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.Item Non-Traditional Surrogate Decision Makers for Hospitalized Older Adults(Lippincott, Williams & Wilkins, 2018-04) Comer, Amber R.; Slaven, James E.; Montz, Annie; Burke, Emily; Inger, Lev; Torke, Alexia; Robert H. Mckinney School of LawBackground Without advanced preparation of legal documents, state law determines who may serve as a surrogate decision maker for patients in hospitals. Objectives To examine the relationship characteristics associated with traditional versus non-traditional healthcare surrogates who are making medical decisions for patients in hospitals. Research Design Secondary analysis of a baseline cross-sectional survey of a larger prospective observational study. Subjects 364 patient/ surrogate dyads consisting of patients age 65 years and older admitted to the medical or medical ICU services who lacked decision making capacity based on a physician assessment and also had a surrogate available. Results This study of surrogate decision makers for hospitalized older adults found that the relationships of non-traditional surrogates such as, nieces, nephews, and friends serving in the surrogate role is nearly identical to those of traditional, first degree relatives serving as a surrogate. Over two-thirds (71.2%) of non-traditional surrogates saw the patient in person at least weekly compared to 80.8% of legal surrogates (p-value .9023). Almost all traditional and non-traditional surrogates discussed the patient’s medical preferences with the patient (96.9% of legal surrogates and 89.2% of non-traditional surrogates; p=0.0510). Conclusion This study shows that both traditional and non-traditional surrogates, who are a patient’s primary care giver have similar relationships with patients. The findings of this study suggest that requiring family members such as grandchildren to take the extra step of formal appointment through a legal channel may not be necessary to protect patients. Therefore, broader state laws expanding the list of surrogates authorized by state statute to include more non-traditional surrogates may be necessary.