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.


Recent Submissions

Now showing 1 - 10 of 43
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    Identifying Goals of Care
    (Elsevier, 2020-09) Comer, Amber; Fettig, Lyle; Torke, Alexia M.; Medicine, School of Medicine
    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.
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    High Moral Distress in Clinicians Involved in the Care of Undocumented Immigrants Needing Dialysis in the United States
    (Mary Ann Liebert, Inc., 2021-07-15) Jawed, Areeba; Moe, Sharon M.; Anderson, Melissa; Slaven, James E.; Wocial, Lucia De.; Saeed, Fahad; Torke, Alexia M.; Medicine, School of Medicine
    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.
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    Medical decision making about long-term artificial nutrition after severe stroke: a case report
    (PubMed, 2021-07) Comer, Amber R.; Williams, Linda S.; Bartlett, Stephanie L.; D'Cruz, Lynn E.; Torke, Alexia M.; Health Sciences, School of Health and Human Sciences
    Choosing to use a percutaneous endoscopic gastrostomy (PEG tube) for long term artificial nutrition in the setting of inadequate oral intake after stroke is complex because the decision must be made in a relatively short amount of time and prognosis is often uncertain. This case study utilized interviews with attending and resident neurologists, and surrogate medical decision makers in order to examine how neurologists and surrogate medical decision makers approached the decision to either receive a PEG tube or pursue comfort measures after severe stroke in two patients. Although these two patients presented with similar clinical characteristics and faced similar medical decisions, different decisions regarding PEG tube placement were made. Major challenges included physicians who did not agree on prognosis and surrogates who did not agree on whether to place a PEG tube. These cases demonstrate the importance of the role of the surrogate medical decision maker and the necessity of physicians and surrogate medical decision makers approaching the complex decision of PEG tube placement after stroke together. Additionally, these cases highlight the differing views on what defines a good quality of life and show the vital importance of high-quality goals of care conversations about prognosis and quality of life when deciding whether to place a PEG tube after severe stroke.
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    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 Health
    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.
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    Training the Workforce to Conduct Embedded Pragmatic Clinical Trials to Improve Care for People Living with Dementia and Their Caregivers
    (Wiley, 2020-06-26) Callahan, Christopher M.; Torke, Alexia M.; Alder, Catherine A.; Broughton, Jessica A.; Mitchell, Susan L.; Medicine, School of Medicine
    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.
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    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 Medicine
    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.
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    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 Medicine
    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.
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    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 Sciences
    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.
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    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 Medicine
    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.
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    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 Sciences
    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.