While donation after circulatory death (DCD) has expanded options for organ donation, many who wish to donate are still unable to do so. We conducted face-to-face interviews with family members (N = 15) who had direct experience with unsuccessful DCD and 5 focus groups with professionals involved in the donation process. We used qualitative content analysis to characterize the harms of nondonation as perceived by participants. Participants reported a broad spectrum of harms affecting organ recipients, donors, and donor families. Harms included waste of precious life-giving organs and hospital resources, inability to honor the donor's memory and character, and impaired ability for families to make sense of tragedy and cope with loss. Donor families empathized with the initial hope and ultimate despair of potential recipients who must continue their wait on the transplant list. Focus group members reinforced these findings and highlighted the struggle of families to navigate the uncertainty regarding the timing of death during the donation process. While families reported significant harm, many appreciated the donation attempt. These findings highlight the importance of organ donation to donor families and the difficult experiences associated with current processes that could inform development of alternative donation strategies.
Poor preoperative communication can have serious consequences, including unwanted treatment and postoperative conflict.OBJECTIVE To compare the effectiveness of a question prompt list (QPL) intervention vs usual care on patient engagement and well-being among older patients considering major surgery. DESIGN, SETTING, AND PARTICIPANTSThis randomized clinical trial used a stepped-wedge design to randomly assign patients to a QPL intervention (n = 223) or usual care (n = 223) based on the timing of their visit with 1 of 40 surgeons at 5 US study sites. Patients were 60 years or older with at least 1 comorbidity and an oncologic or vascular (cardiac, neurosurgical, or peripheral vascular) problem that could be treated with major surgery. Family members were also enrolled (n = 263). The study dates were June 2016 to November 2018. Data analysis was by intent-to-treat.INTERVENTIONS A brochure of 11 questions to ask a surgeon developed by patient and family stakeholders plus an endorsement letter from the surgeon were sent to patients before their outpatient visit. MAIN OUTCOMES AND MEASURESPrimary patient engagement outcomes included the number and type of questions asked during the surgical visit and patient-reported Perceived Efficacy in Patient-Physician Interactions scale assessed after the surgical visit. Primary well-being outcomes included (1) the difference between patient's Measure Yourself Concerns and Well-being (MYCaW) scores reported after surgery and scores reported after the surgical visit and (2) treatment-associated regret at 6 to 8 weeks after surgery. RESULTSOf 1319 patients eligible for participation, 223 were randomized to the QPL intervention and 223 to usual care. Among 446 patients, the mean (SD) age was 71.8 (7.1) years, and 249 (55.8%) were male. On intent-to-treat analysis, there was no significant difference between the QPL intervention and usual care for all patient-reported primary outcomes. The difference in MYCaW scores for family members was greater in usual care (effect estimate, 1.51; 95% CI, 0.28-2.74; P = .008). When the QPL intervention group was restricted to patients with clear evidence they reviewed the QPL, a nonsignificant increase in the effect size was observed for questions about options (odds ratio, 1.88; 95% CI, 0.81-4.35; P = .16), expectations (odds ratio, 1.59; 95% CI, 0.67-3.80; P = .29), and risks (odds ratio, 2.41; 95% CI, 1.04-5.59; P = .04) (nominal α = .01). CONCLUSIONS AND RELEVANCEThe results of this study were null related to primary patient engagement and well-being outcomes. Changing patient-physician communication may be difficult without addressing clinician communication directly.
Making the transition from hospital to home can be challenging for many older adults. This article presents practice perspectives on these transitions, based on a social work intervention for older adults discharged from an acute care setting to home. An analysis of interviews with clinical social workers who managed 356 cases (n = 3) and a review of their clinical notes (n = 581) were used to identify salient themes relevant to care transitions. Concepts developed and discussed identify the role of surprises after discharge, an expanded view of the client system, and relationship building as instrumental in carrying out effective care transitions.
IMPORTANCEFor patients facing major surgery, surgeons believe preoperative advance care planning (ACP) is valuable and routinely performed. How often preoperative ACP occurs is unknown.OBJECTIVE To quantify the frequency of preoperative ACP discussion and documentation for older adults undergoing major surgery. DESIGN, SETTING, AND PARTICIPANTSThis secondary analysis of data from a multisite randomized clinical trial testing the effects of a question prompt list intervention on preoperative communication for older adults considering major surgery was performed at 5 US academic medical centers. Participants included surgeons who routinely perform high-risk surgery and patients 60 years or older with at least 1 comorbidity and an oncological or vascular (cardiac, peripheral, or neurovascular) problem. Data were collected from June 1, 2016, to November 30, 2018.INTERVENTIONS Patients received a question prompt list brochure with 11 questions that they might ask their surgeon.MAIN OUTCOMES AND MEASURES For patients who had major surgery, any statement related to ACP from the surgeon, patient, or family member during the audiorecorded preoperative consultation was counted. The presence of a written advance directive (AD) in the medical record at the time of the initial consultation or added preoperatively was recorded. Open-ended interviews with patients who experienced postoperative complications and family members were conducted. RESULTS Among preoperative consultations with 213 patients (122 men [57%]; mean [SD] age, 72 [7] years), only 13 conversations had any discussion of ACP. In this cohort of older patients with at least 1 comorbid condition, 141 (66%) did not have an AD on file before major surgery; there was no significant association between the presence of an AD and patient age (60-69 years, 26 [31%]; 70-79 years, 31 [33%]; Ն80 years, 15 [42%]; P = .55), number of comorbidities (1, 35 [32%]; 2, 18 [33%]; Ն3, 19 [40%]; P = .62), or type of procedure (oncological, 53 [32%]; vascular, 19 [42%]; P = .22). There was no difference in preoperative communication about ACP or documentation of an AD for patients who were mailed a question prompt list brochure (intervention, 38 [35%]; usual care, 34 [33%]; P = .77). Patients with complications were enthusiastic about ACP but did not think it was important to discuss their preferences for life-sustaining treatments with their surgeon preoperatively. CONCLUSIONS AND RELEVANCEAlthough surgeons believe that preoperative discussion of patient preferences for postoperative life-sustaining treatments is important, these preferences are infrequently explored, addressed, or documented preoperatively.
Objective:To assess the prevalence of moral distress among surgeons and test the association between factors promoting non-beneficial surgery and surgeons’ moral distress.Summary Background Data:Moral distress experienced by clinicians can lead to low-quality care and burnout. Older adults increasingly receive invasive treatments at the end of life that may contribute to surgeons’ moral distress, particularly when external factors, such as pressure from colleagues, institutional norms, or social demands, push them to offer surgery they consider non-beneficial.Methods:We mailed surveys to 5200 surgeons randomly selected from the American College of Surgeons membership, which included questions adapted from the revised Moral Distress Scale. We then analyzed the association between factors influencing the decision to offer surgery to seriously ill older adults and surgeons’ moral distress.Results:The weighted adjusted response rate was 53% (n = 2161). Respondents whose decision to offer surgery was influenced by their belief that pursuing surgery gives the patient or family time to cope with the patient's condition were more likely to have high moral distress (34% vs 22%, P < 0.001), and this persisted on multivariate analysis (odds ratio 1.44, 95% confidence interval 1.02–2.03). Time required to discuss nonoperative treatments or the consulting intensivists’ endorsement of operative intervention, were not associated with high surgeon moral distress.Conclusions:Surgeons experience moral distress when they feel pressured to perform surgery they believe provides no clear patient benefit. Strategies that empower surgeons to recommend nonsurgical treatments when they believe this is in the patient's best interest may reduce nonbeneficial surgery and surgeon moral distress.
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