Clinicians navigating moral accountability when discussing parental behaviors in the care of the child in the hospital.

OBJECTIVE: The purpose of this study was to explore how moral accountability is navigated when clinicians talk about parental behaviors to support the health of the hospitalized child. METHODS: We conducted a secondary data analysis of 74 conversations during daily rounds video recorded as part of a randomized controlled trial of an intervention to advance family-centered rounds in one children's hospital. Conversations involving children under the age 18 who were cared for by a pediatric hospitalist service, pulmonary service, or hematology/oncology service were recorded. We used conversation analysis to analyze sequences in which physicians engaged in talk that had implications for parent behavior. RESULTS: Two phenomena were apparent in how physicians and parents navigated moral accountability. First, physicians avoided or delayed parental agency in their references to parent behaviors. Second, parents demonstrated and clinicians reassured parental competence of parents caring for their children. CONCLUSION: Physicians appeared to be oriented toward the potential moral implications of asking about parental behavior. PRACTICE IMPLICATIONS: Avoiding attributions of agency and moral accountability as well as providing reassurance for the parents' competence may be useful for clinicians to maintain a good relationship with the parents of children in their care in the hospital setting.

Decisional Conflict During Major Medical Treatment Decision-making: a Survey Study.

BACKGROUND: Both patients and surrogate decision-makers experience decisional conflict when making a major medical treatment decision with life or death implications. The relationship between health literacy and decisional conflict while making a major medical treatment decision is not understood. OBJECTIVE: To identify the prevalence of individuals making major medical treatment decisions for themselves or someone else and to explore the relationships between decisional conflict and circumstances of the decision as well as the decision-maker. DESIGN: Two-phase survey study: in phase 1, we screened for who made a major treatment decision; in phase 2, we asked eligible respondents about their experience making the decision. PARTICIPANTS: Address-based random sample of 4000 Wisconsin residents; 1072 completed phase 1 and 464 completed phase 2. MAIN MEASURES: We asked respondents about types of decisions made, the most difficult decision made, and characteristics of the decision-maker and the decision. We included the Decisional Conflict Scale and four domains of the Health Literacy Questionnaire. Open-ended questions also allowed respondents to describe their experiences. KEY RESULTS: About 43% of respondents reported making a major medical treatment decision. Decisions about major surgery and life support were regarded as the most difficult decisions. Respondents who made the decision for a spouse/partner (ß = 6.65, p = 0.012), parent (ß = 9.27, p < 0.001), or someone else (ß = 10.7, p < 0.001) had higher decisional conflict. Respondents who reported higher ability to actively engage with healthcare providers (ß = - 5.24, p = 0.002) and to understand health information well enough to know what to do (ß = - 6.12, p = 0.001) had lower decisional conflict. CONCLUSIONS: The need to make major treatment decisions is likely to increase and making decisions on someone else's behalf appeared to be especially difficult. Improving communication to encourage patient and family engagement in the decision-making conversation, particularly for individuals with limited health literacy, may be helpful.

Treatment decision making involving patients with dementia in acute care: A scoping review.

OBJECTIVE: To summarize the evidence regarding the factors and processes of treatment decision making involving a person with dementia (PWD) in the acute care setting. METHODS: We conducted a scoping review, searching 4 databases (PubMed, CINAHL, Web of Science, & PsychINfo) for articles that contained primary data from a quantitative or qualitative study involving treatment decision making in the acute care setting for PWD and were published in English. We categorized the factors and processes of decision making identified in each article using inductive content analysis. We also consulted with healthcare practitioners to receive stakeholder input on our findings. RESULTS: Our search initially revealed 12,478 articles, of which 28 were included in the review. We identified 5 categories of factors that influence the decision-making process: knowing the patient, culture and systems, role clarity, appropriateness of palliative care in dementia, and caregiver need for support. CONCLUSION: Our findings highlight the complexities of the decision-making process and the importance of attending to the needs of the caregiver, healthcare practitioners, and the patient. PRACTICE IMPLICATIONS: It is important to address beliefs of involving palliative care for a PWD and the role of each healthcare discipline.

Conflict in the intensive care unit: Nursing advocacy and surgical agency.

BACKGROUND: Nurses and surgeons may experience intra-team conflict during decision making about the use of postoperative life-sustaining treatment in the intensive care unit due to their perceptions of professional roles and responsibilities. Nurses have a sense of advocacy-a responsibility to support the patient's best interest; surgeons have a sense of agency-a responsibility to keep the patient alive. OBJECTIVES: The objectives were to (1) describe the discourse surrounding the responsibilities of nurses and surgeons, as "advocates" and "agents," and (2) apply these findings to determine how differences in role responsibilities could foster conflict during decision making about postoperative life-sustaining treatment in the intensive care unit. RESEARCH DESIGN: Articles, books, and professional documents were explored to obtain descriptions of nurses' and surgeons' responsibilities to their patients. Using discourse analysis, responsibilities were grouped into themes and then compared for potential for conflict. Ethical considerations: No data were collected from human participants and ethical review was not required. The texts were analyzed by a surgeon and a nurse to minimize profession-centric biases. FINDINGS: Four themes in nursing discourse were identified: responsibility to support patient autonomy regarding treatment decisions, responsibility to protect the patient from the physician, responsibility to act as an intermediary between the physician and the patient, and the responsibility to support the well-being of the patient. Three themes in surgery discourse were identified personal responsibility for the patient's outcome, commitment to patient survival, and the responsibility to prevent harm to the patient from surgery. DISCUSSION: These responsibilities may contribute to conflict because each profession is working toward different goals and each believes they know what is best for the patient. It is not clear from the existing literature that either profession understands each other's responsibilities. CONCLUSION: Interventions that improve understanding of each profession's responsibilities may be helpful to reduce intra-team conflict in the intensive care unit.

Patient-reported Limitations to Surgical Buy-in: A Qualitative Study of Patients Facing High-risk Surgery.

OBJECTIVE: To characterize how patients buy-in to treatments beyond the operating room and what limits they would place on additional life-supporting treatments. BACKGROUND: During a high-risk operation, surgeons generally assume that patients buy-in to life-supporting interventions that might be necessary postoperatively. How patients understand this agreement and their willingness to participate in additional treatment is unknown. METHODS: We purposively sampled surgeons in Toronto, Ontario, Boston, Massachusetts, and Madison, Wisconsin, who are good communicators and routinely perform high-risk operations. We audio-recorded their conversations with patients considering high-risk surgery. For patients who were then scheduled for surgery, we performed open-ended preoperative and postoperative interviews. We used directed qualitative content analysis to analyze the interviews and surgeon visits, specifically evaluating the content about the use of postoperative life support. RESULTS: We recorded 43 patients' conversations with surgeons, 34 preoperative, and 27 postoperative interviews. Patients expressed trust in their surgeon to make decisions about additional treatments if a serious complication occurred, yet expressed a preference for significant treatment limitations that were not discussed with their surgeon preoperatively. Patients valued the existence or creation of an advance directive preoperatively, but they did not discuss this directive with their surgeon. Instead they assumed it would be effective if needed and that family members knew their wishes. CONCLUSIONS: Patients implicitly trust their surgeons to treat postoperative complications as they arise. Although patients may buy-in to some additional postoperative interventions, they hold a broad range of preferences for treatment limitations that were not discussed with the surgeon preoperatively.

"And I think that we can fix it": mental models used in high-risk surgical decision making.

OBJECTIVE: To examine how surgeons use the "fix-it" model to communicate with patients before high-risk operations. BACKGROUND: The "fix-it" model characterizes disease as an isolated abnormality that can be restored to normal form and function through medical intervention. This mental model is familiar to patients and physicians, but it is ineffective for chronic conditions and treatments that cannot achieve normalcy. Overuse may lead to permissive decision making favoring intervention. Efforts to improve surgical decision making will need to consider how mental models function in clinical practice, including "fix-it." METHODS: We observed surgeons who routinely perform high-risk surgery during preoperative discussions with patients. We used qualitative content analysis to explore the use of "fix-it" in 48 audio-recorded conversations. RESULTS: Surgeons used the "fix-it" model for 2 separate purposes during preoperative conversations: (1) as an explanatory tool to facilitate patient understanding of disease and surgery, and (2) as a deliberation framework to assist in decision making. Although surgeons commonly used "fix-it" as an explanatory model, surgeons explicitly discussed limitations of the "fix-it" model as an independent rationale for operating as they deliberated about the value of surgery. CONCLUSIONS: Although the use of "fix-it" is familiar for explaining medical information to patients, surgeons recognize that the model can be problematic for determining the value of an operation. Whether patients can transition between understanding how their disease is fixed with surgery to a subsequent deliberation about whether they should have surgery is unclear and may have broader implications for surgical decision making.

It's big surgery: preoperative expressions of risk, responsibility, and commitment to treatment after high-risk operations.

OBJECTIVE: To identify the processes, surgeons use to establish patient buy-in to postoperative treatments. BACKGROUND: Surgeons generally believe they confirm the patient's commitment to an operation and all ensuing postoperative care, before surgery. How surgeons get buy-in and whether patients participate in this agreement is unknown. METHODS: We used purposive sampling to identify 3 surgeons from different subspecialties who routinely perform high-risk operations at each of 3 distinct medical centers (Toronto, Ontario; Boston, Massachusetts; Madison, Wisconsin). We recorded preoperative conversations with 3 to 7 patients facing high-risk surgery with each surgeon (n = 48) and used content analysis to analyze each preoperative conversation inductively. RESULTS: Surgeons conveyed the gravity of high-risk operations to patients by emphasizing the operation is "big surgery" and that a decision to proceed invoked a serious commitment for both the surgeon and the patient. Surgeons were frank about the potential for serious complications and the need for intensive care. They rarely discussed the use of prolonged life-supporting treatment, and patients' questions were primarily confined to logistic or technical concerns. Surgeons regularly proceeded through the conversation in a manner that suggested they believed buy-in was achieved, but this agreement was rarely forged explicitly. CONCLUSIONS: Surgeons who perform high-risk operations communicate the risks of surgery and express their commitment to the patient's survival. However, they rarely discuss prolonged life-supporting treatments explicitly and patients do not discuss their preferences. It is not possible to determine patients' desires for prolonged postoperative life support on the basis of these preoperative conversations alone.

Respecting Choices® and advance directives in a diverse community.

BACKGROUND: Respecting Choices® is a program designed and verified to improve advance care planning, yet it has not been tested in racially/ethnically diverse communities. Research has shown racial/ethnic minorities are less likely to have advance directives (ADs). OBJECTIVE: To determine whether Respecting Choices® would improve AD prevalence and utilization in a racially and ethnically diverse community. METHODS: The study design was that of a retrospective chart review. Subjects were all decedents from 2005 to 2010 (n=732) in a 300-bed Midwestern metropolitan hospital. Prevalence was assessed by the presence of an AD in the chart. Utilization was measured by the consistency of wishes expressed in an AD and treatment received ("No CPR," "No Feeding Tube," "No Antibiotics," "No Ventilator," "Comfort Care," and "Terminal Extubation"). Average treatment effect using regression analysis and matching on covariates was used for analysis of Respecting Choices® on AD prevalence. Proportional difference tests were used to compare consistency of wishes by race/ethnicity before and after Respecting Choices®. RESULTS: The prevalence of ADs increased significantly for racial and ethnic minorities after the implementation of Respecting Choices®: from 25.8% to 38.4% (p=0.011). The increase in AD prevalence for whites following Respecting Choices® was only marginal (46.7% to 47.3%; p=0.648), and the overall prevalence of ADs did not significantly change (35.9% to 42.9%; p=0.069). Consistency was high (74% to 96%) for all orders, and there were no significant differences following implementation of Respecting Choices® or between whites and racial and ethnic minorities. CONCLUSIONS: The prevalence of ADs increased after Respecting Choices® was initiated in a racially and ethnically diverse community.