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Understanding ethical concerns that arise in the care of patients with advanced kidney disease may help identify opportunities to support medical decision-making. To describe the clinical contexts and types of ethical concerns that arise in the care of patients with advanced kidney disease. Retrospective cohort study. A total of 28,568 Veterans with advanced kidney disease between 2000 and 2009 followed through death or 2011. Clinical scenarios that prompted clinicians to consider an ethics consultation as documented in the medical record. Dialysis initiation, dialysis discontinuation, receipt of an intensive procedure during the final month of life, and hospice enrollment. Patients had a mean age of 67.1 years, and the majority were male (98.5%) and white (59.0%). Clinicians considered an ethics consultation for 794 patients (2.5%) over a median follow-up period of 2.7 years. Ethical concerns involved code status (37.8%), dialysis (54.5%), other invasive treatments (40.6%), and noninvasive treatments (61.1%) and were related to conflicts between patients, their surrogates, and/or clinicians about treatment preferences (79.3%), who had authority to make healthcare decisions (65.9%), and meeting the care needs of patients versus obligations to others (10.6%). Among the 20,583 patients who died during follow-up, those for whom clinicians had considered an ethics consultation were less likely to have been treated with dialysis (47.6% versus 62.0%, adjusted odds ratio [aOR] 0.63, 95% CI 0.53–0.74), more likely to have discontinued dialysis (32.5% versus 20.9%, aOR 2.07, CI 1.61–2.66), and less likely to have received an intensive procedure in the last month of life (8.9% versus 18.9%, aOR 0.41, CI 0.32–0.54) compared with patients without documentation of clinicians having considered consultation. Clinicians considered an ethics consultation for patients with advanced kidney disease in situations of conflicting preferences regarding dialysis and other intensive treatments, especially when these treatments were not pursued.

United States hospice organizations aim to provide quality, patient-centered end-of-life care to patients in the last 6 months of life, yet some of these organizations observe that some hospice-eligible patients who are referred to hospice do not initially enroll. Primary objective: To identify reasons that eligible patients do not enroll in hospice (phase 1). Secondary objective: To identify strategies used by hospice providers to address these reasons (phase 2). Semi-structured interviews analyzed using content analysis. In phase 1, we interviewed 30 patients and/or family members of patients who had a hospice admissions visit, but who did not enroll. In phase 2, we interviewed 19 hospice staff and national experts. In phase 1, we asked participants to describe the patient's illness, the hospice referral, and why they had not enrolled. We performed a content analysis to characterize their reasons for not enrolling in hospice. In phase 2, we enrolled hospice admissions staff and hospice experts. We asked them to describe how they would respond to each reason (from phase 1) during an admissions visit with a potential new hospice patient. We identified key phrases, and summarized their recommendations. Reasons that patients hadn’t enrolled fell into three broad categories: patient/family perceptions (e.g., “not ready”), hospice specific issues (e.g., variable definitions of hospice-eligible patients), and systems issues (e.g., concerns about continuity of care). Hospice staff/experts had encountered each reason, and offered strategies at the individual and organizational level for responding. In hopes of increasing hospice enrollment among hospice-eligible patients, non-hospice and hospice clinicians may want to adopt some of the strategies used by hospice staff/experts for talking about hospice with patients/families and may want to familiarize themselves with the differences between hospice organizations in their area. Hospices may want to reconsider their admission policies and procedures in light of patients’ and families’ perceptions and concerns.

A majority of end-of-life medical decisions are made by surrogate decision-makers who have varying degrees of preparation and comfort with their role. Having a seriously ill family member is stressful for surrogates. Moreover, most clinicians have had little training in working effectively with surrogates.To better understand the challenges of decision-making from the surrogate's perspective.Semistructured telephone interview study of the experience of surrogate decision-making.Fifty designated surrogates with previous decision-making experience.We asked surrogates to describe and reflect on their experience of making medical decisions for others. After coding transcripts, we conducted a content analysis to identify and categorize factors that made decision-making more or less difficult for surrogates.Surrogates identified four types of factors: (1) surrogate characteristics and life circumstances (such as coping strategies and competing responsibilities), (2) surrogates' social networks (such as intrafamily discord about the "right" decision), (3) surrogate-patient relationships and communication (such as difficulties with honoring known preferences), and (4) surrogate-clinician communication and relationship (such as interacting with a single physician whom the surrogate recognizes as the clinical spokesperson vs. many clinicians).These data provide insights into the challenges that surrogates encounter when making decisions for loved ones and indicate areas where clinicians could intervene to facilitate the process of surrogate decision-making. Clinicians may want to include surrogates in advance care planning prior to decision-making, identify and address surrogate stressors during decision-making, and designate one person to communicate information about the patient's condition, prognosis, and treatment options.