Evaluation of Interventions to Address Moral Distress: A Multi-method Approach.

Moral distress is a well-documented phenomenon for health care providers (HCPs). Exploring HCPs' perceptions of participation in moral distress interventions using qualitative and quantitative methods enhances understanding of intervention effectiveness. The purpose of this study was to measure and describe the impact of a two-phased intervention on participants' moral distress. Using a cross-over design, the project aimed to determine if the intervention would decrease moral distress, enhance moral agency, and improve perceptions about the work environment. We used quantitative instruments and explored participants' perceptions of the intervention using semi-structured interviews. Participants were from inpatient settings, within three major hospitals of a large, urban healthcare system in the Midwest, United States. Participants included nurses (80.6%) and other clinical care providers. Using generalized linear mixed modeling we assessed the change in each of the outcome variables over time controlling for groups. Interviews were audiotaped and professionally transcribed. The written narratives were coded into themes. The change in scores on study instruments trended in the desired direction however did not meet statistical significance. Qualitative interviews revealed that intervention effectiveness was derived from a combination of learning benefits, psychological benefits, and building community that promoted moral agency. Findings demonstrate a clear link between moral distress and moral agency and suggest that Facilitated Ethics Conversations can enhance the work environment. Findings provide insight for developing evidenced-based approaches to address moral distress of hospital nurses.

Moral Distress in the ICU: Measuring, Tracking, and Responding to Staff Experiences.

Until the surges of COVID-19 patients overwhelmed our health care system, moral distress was largely unknown outside of health care. We conducted a study in a 36-bed intensive care unit (ICU) over an 8-week period to determine the severity and contributing factors to clinicians' moral distress and how their moral distress impacted intent to leave, and to assess utilization of resources to mitigate the problem. This article describes the level of moral distress experienced by ICU staff, the disparity between hospital-provided resources and the contributing factors of moral distress, and the potential financial cost of job turnover due to moral distress.

Interprofessional spiritual care education in pediatric hematology-oncology: A pilot study.

BACKGROUND: Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians' capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology. A model of interprofessional spiritual care entails that all team members attend to patients' spirituality by employing generalist spiritual care skills and collaborating with spiritual care specialists such as chaplains. METHODS: Interdisciplinary team members providing care for AYA with cancer and blood disorders were recruited to participate in interprofessional spiritual care education. Our intervention combined an evidence-based online curriculum and in-person discussion groups. Pretest-posttest study examined changes in participants' skills and practices to identify, address, and discuss spiritual concerns. Surveys were conducted at baseline and at 1, 3, and 6 months after the intervention. RESULTS: Participants (n = 21) included physicians, advanced practice providers, nurse coordinators, and psychosocial team members. We observed positive changes in participants' ability (36%, P < 0.01), frequency (56%, P = 0.01), confidence (32%, P < 0.01), and comfort (31%, P = 0.02) providing generalist spiritual care baseline versus one month, with significant gains maintained through six months (Omnibus P < 0.05). CONCLUSIONS: Utilizing ISPEC, interprofessional spiritual care education has a strong potential to develop pediatric hematology-oncology team members' capabilities to attend to the spiritual aspect of whole-person care and thus contribute to the well-being of AYA with cancer and blood disorders.

Factors Associated with Physician Moral Distress Caring for Hospitalized Elderly Patients Needing a Surrogate Decision-maker: a Prospective Study.

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.

The Chaplain Family Project: Development, Feasibility, and Acceptability of an Intervention to Improve Spiritual Care of Family Surrogates.

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.

Spiritual and Religious Coping of Medical Decision Makers for Hospitalized Older Adult Patients.

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.

Communication Quality Predicts Psychological Well-Being and Satisfaction in Family Surrogates of Hospitalized Older Adults: An Observational Study.

BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization. OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults. DESIGN: Observational study at three hospitals in a Midwest metropolitan area. PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study. MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems). KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate-severe anxiety); 29% reported depression, (14.0% moderate-severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001). CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.

How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults.

BACKGROUND: Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. OBJECTIVES: We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so. DESIGN AND PARTICIPANTS: We performed a secondary data analysis of a study conducted at three local hospitals that surveyed surrogate decision-makers for hospitalized patients 65 years of age and older. MAIN MEASURES: Surrogates rated the importance of 16 decision-making principles and selected the one that was most important. We divided the surrogates into two groups: those who prioritized patient preferences and those who prioritized patient well-being. We analyzed the two groups for differences in knowledge of patient preferences, presence of advance directives, and psychological outcomes. KEY RESULTS: A total of 362 surrogates rated an average of six principles as being extremely important in decision-making; 77.8% of surrogates selected a patient well-being principle as the most important, whereas only 21.1% selected a patient preferences principle. Advance directives were more common to the patient preferences group than the patient well-being group (61.3% vs. 44.9%; 95% CI: 1.01-3.18; p = 0.04), whereas having conversations with the patient about their health care preferences was not a significant predictor of surrogate group identity (81.3% vs. 67.4%; 95% CI: 0.39-1.14; p = 0.14). We found no differences between the two groups regarding surrogate anxiety, depression, or decisional conflict. CONCLUSIONS: While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

Validation of the Family Inpatient Communication Survey.

CONTEXT: Although many family members who make surrogate decisions report problems with communication, there is no validated instrument to accurately measure surrogate/clinician communication for older adults in the acute hospital setting. OBJECTIVES: The objective of this study was to validate a survey of surrogate-rated communication quality in the hospital that would be useful to clinicians, researchers, and health systems. METHODS: After expert review and cognitive interviewing (n = 10 surrogates), we enrolled 350 surrogates (250 development sample and 100 validation sample) of hospitalized adults aged 65 years and older from three hospitals in one metropolitan area. The communication survey and a measure of decision quality were administered within hospital days 3 and 10. Mental health and satisfaction measures were administered six to eight weeks later. RESULTS: Factor analysis showed support for both one-factor (Total Communication) and two-factor models (Information and Emotional Support). Item reduction led to a final 30-item scale. For the validation sample, internal reliability (Cronbach's alpha) was 0.96 (total), 0.94 (Information), and 0.90 (Emotional Support). Confirmatory factor analysis fit statistics were adequate (one-factor model, comparative fit index = 0.981, root mean square error of approximation = 0.62, weighted root mean square residual = 1.011; two-factor model comparative fit index = 0.984, root mean square error of approximation = 0.055, weighted root mean square residual = 0.930). Total score and subscales showed significant associations with the Decision Conflict Scale (Pearson correlation -0.43, P < 0.001 for total score). Emotional Support was associated with improved mental health outcomes at six to eight weeks, such as anxiety (-0.19 P < 0.001), and Information was associated with satisfaction with the hospital stay (0.49, P < 0.001). CONCLUSION: The survey shows high reliability and validity in measuring communication experiences for hospital surrogates. The scale has promise for measurement of communication quality and is predictive of important outcomes, such as surrogate satisfaction and well-being.

The Family Navigator: A Pilot Intervention to Support Intensive Care Unit Family Surrogates.

BACKGROUND: Communication problems between family surrogates and intensive care unit (ICU) clinicians have been documented, but few interventions are effective. Nurses have the potential to play an expanded role in ICU communication and decision making. OBJECTIVES: To conduct a pilot randomized controlled trial of the family navigator (FN), a distinct nursing role to address family members' unmet communication needs early in an ICU stay. METHODS: An interprofessional team developed the FN protocol. A randomized controlled pilot intervention trial of the FN was performed in a tertiary referral hospital's ICU to test the feasibility and acceptability of the intervention. The intervention addressed informational and emotional communication needs through daily contact by using structured clinical updates, emotional and informational support modules, family meeting support, and follow-up phone calls. RESULTS: Twenty-six surrogate/patient pairs (13 per study arm) were enrolled. Surrogates randomized to the intervention had contact with the FN on 90% or more of eligible patient days. All surrogates agreed that they would recom mend the FN to other families. Open-ended comments from both surrogates and clinicians were uniformly positive. CONCLUSIONS: Having a fully integrated nurse empowered to facilitate decision making is a feasible intervention in an ICU and is well-received by ICU families and staff. A larger randomized controlled trial is needed to demonstrate impact on important outcomes, such as surrogates' well-being and decision quality.

Religion and Spirituality in Surrogate Decision Making for Hospitalized Older Adults.

We conducted semi-structured interviews with 46 surrogate decision makers for hospitalized older adults to characterize the role of spirituality and religion in decision making. Three themes emerged: (1) religion as a guide to decision making, (2) control, and (3) faith, death and dying. For religious surrogates, religion played a central role in end of life decisions. There was variability regarding whether God or humans were perceived to be in control; however, beliefs about control led to varying perspectives on acceptance of comfort-focused treatment. We conclude that clinicians should attend to religious considerations due to their impact on decision making.

Wishard Volunteer Advocates Program: an intervention for at-risk, incapacitated, unbefriended adults.

Unbefriended, incapacitated individuals who lack surrogates to make medical decisions present a complex problem to the healthcare providers who treat them. Adults without surrogates are among the most vulnerable in the community and are often alone and estranged from family, neglected and abused, and at risk of receiving inappropriate medical treatment. This article describes the program model and outcomes for the first 2 years of the Wishard Volunteer Advocates Program (WVAP), a guardianship program using trained, supervised volunteers as surrogates for unbefriended, incapacitated individuals. Of the 50 individuals enrolled during the study period, 20 were female, and 39 were Caucasian and 11 African American. Their average age was 67. Nineteen were insured with Medicare as primary and Medicaid as supplementary insurance. Ninety-eight percent had four or more comorbid conditions at the time of the index hospitalization. Before program referral, many lived alone in unsafe conditions. Adult Protective Services was involved in almost half of the cases at the time of the index hospitalization. Approximately half of the participants required some type of property management. Healthcare usage data demonstrated that most were not receiving medical care before WVAP enrollment; the data indicated a decrease in emergency department visits and hospitalization after WVAP enrollment. The WVAP completed Medicaid applications for 12 participants, resulting in $297,481.62 in reimbursement for the index hospitalization and a payer source for subsequent hospitalization and long-term care. The volunteer advocate model provides an efficient and quality mechanism for providing unbefriended individuals with surrogates.

Scope and outcomes of surrogate decision making among hospitalized older adults.

IMPORTANCE: Hospitalized older adults often lack decisional capacity, but outside of the intensive care unit and end-of-life care settings, little is known about the frequency of decision making by family members or other surrogates or its implications for hospital care. OBJECTIVE: To describe the scope of surrogate decision making, the hospital course, and outcomes for older adults. DESIGN, SETTING, AND PARTICIPANTS: Prospective, observational study conducted in medicine and medical intensive care unit services of 2 hospitals in 1 Midwestern city in 1083 hospitalized older adults identified by their physicians as requiring major medical decisions. MAIN OUTCOMES AND MEASURES: Clinical characteristics, hospital outcomes, nature of major medical decisions, and surrogate involvement. RESULTS: According to physician reports, at 48 hours of hospitalization, 47.4% (95% CI, 44.4%-50.4%) of older adults required at least some surrogate involvement, including 23.0% (20.6%-25.6%) with all decisions made by a surrogate. Among patients who required a surrogate for at least 1 decision within 48 hours, 57.2% required decisions about life-sustaining care (mostly addressing code status), 48.6% about procedures and operations, and 46.9% about discharge planning. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators (2.5% of patients who made decisions and 13.2% of patients who required any surrogate decisions; P < .001), artificial nutrition (1.7% of patients and 14.4% of surrogates; P < .001), and length of stay (median, 6 days for patients and 7 days for surrogates; P < .001). They were more likely to be discharged to an extended-care facility (21.2% with patient decisions and 40.9% with surrogate decisions; P < .001) and had higher hospital mortality (0.0% patients and 5.9% surrogates; P < .001). Most surrogates were daughters (58.9%), sons (25.0%), or spouses (20.6%). Overall, only 7.4% had a living will and 25.0% had a health care representative document in the medical record. CONCLUSIONS AND RELEVANCE: Surrogate decision making occurs for nearly half of hospitalized older adults and includes both complete decision making by the surrogate and joint decision making by the patient and surrogate. Surrogates commonly face a broad range of decisions in the intensive care unit and the hospital ward setting. Hospital functions should be redesigned to account for the large and growing role of surrogates, supporting them as they make health care decisions.

Caregiver perspectives on cancer screening for persons with dementia: "why put them through it?".

OBJECTIVES: To describe the perspectives of family caregivers toward stopping cancer screening tests for their relatives with dementia and identify opportunities to reduce harmful or unnecessary screening. DESIGN: Focus group study. SETTING: Alzheimer's Association support groups for family members of individuals with dementia. PARTICIPANTS: Four focus groups including 32 caregivers (25 female; 24 white, 7 African American, one American/Indian; mean age 65.5, range 49-85). MEASUREMENTS: Focus group transcripts were transcribed and analyzed using methods of grounded theory. RESULTS: Caregivers considered decisions to stop cancer screening in terms of quality of life and burden on the patient and caregiver. Many described having to intervene in the patient's care to stop unnecessary or harmful screening, and others met resistance when they advocated for stopping. Physicians varied widely in their knowledge of dementia care and willingness to consider cessation of screening. CONCLUSION: Many family caregivers wish to stop cancer screening tests as dementia progresses and are relieved when physicians bring it up. Caregivers are open to discussions of screening cessation that focus on quality of life, burdens, and benefits. Interventions are needed to increase caregiver and clinician discussion of screening cessation and to increase clinician awareness of the need to reconsider cancer screening in individuals with dementia.

Older adults and forgoing cancer screening: "I think it would be strange".

IMPORTANCE: Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients' perceptions regarding cessation of cancer screening. Information on older adults' views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening. OBJECTIVE: To obtain a deeper understanding of older adults' perspectives on screening cessation and their experiences communicating with clinicians about this topic. DESIGN: Semistructured interview study. SETTING: Senior health center affiliated with an urban hospital. PARTICIPANTS: We interviewed 33 older adults presenting to a senior health center. Their median age was 76 years (range, 63-91 years). Of the 33 participants, 27 were women; 15 were African American, 16 were white, 1 was Asian, and 1 was American Indian. MAIN OUTCOME MEASURES: We transcribed audio recordings of interviews and analyzed them using methods of grounded theory to identify themes and illustrative quotes. RESULTS: Undergoing screening tests was perceived by participants as morally obligatory. Although many saw continued screening as a habit or custom not involving any decision, cessation of screening would require a major decision. Many asserted that they had never discussed screening cessation with their physicians or considered stopping on their own; some reported being upset when their physician recommended stopping. Although some would accept a physician's strong recommendation to stop, others thought that such a physician's recommendation would threaten trust or lead them to get another opinion. Participants were skeptical about the role of statistics and the recommendations of government panels in screening decisions but were more favorable toward stopping because of the balance of risks and benefits, complications, or test burdens. CONCLUSIONS AND RELEVANCE: For many older adults, stopping screening is a major decision, but continuing screening is not. A physician's recommendation to stop may threaten patient trust. Effective strategies to reduce nonbeneficial screening may include discussion of the balance of risks and benefits, complications, or burdens.