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Background and objectivesThe highly specialized and technologically focused approach to care inherent to many health systems can adversely affect patients' emotional experiences of illness, while also obscuring these effects from the clinician's view. We describe what we learned from patients with advanced kidney disease about the emotional impact of illness and care.Design, setting, participants, & measurementsAs part of an ongoing study on advance care planning, we conducted semistructured interviews at the VA Puget Sound Healthcare System in Seattle, Washington, with 27 patients with advanced kidney disease between April of 2014 and May of 2016. Of these, ten (37%) were receiving center hemodialysis, five (19%) were receiving peritoneal dialysis, and 12 (44%) had an eGFR≤20 ml/min per 1.73 m2 and had not started dialysis. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory methods.ResultsWe here describe three emergent themes related to patients' emotional experiences of care and illness: (1) emotional impact of interactions with individual providers: when providers seemed to lack insight into the patient's experience of illness and treatment, this could engender a sense of mistrust, abandonment, isolation, and/or alienation; (2) emotional impact of encounters with the health care system: just as they could be affected emotionally by interactions with individual providers, patients could also be affected by how care was organized, which could similarly lead to feelings of mistrust, abandonment, isolation, and/or alienation; and (3) emotional impact of meaning-making: patients struggled to make sense of their illness experience, worked to apportion blame, and were often quick to blame themselves and to assume that their illness could have been prevented.ConclusionsInteractions with individual providers and with the wider health system coupled with patients' own struggles to make meaning of their illness can take a large emotional toll. A deeper appreciation of patients' emotional experiences may offer important opportunities to improve care.

Background and objectivesFamily members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease.Design, setting, participants, & measurementsAs part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes.ResultsThe following three themes emerged from interviews with patients' family members and friends: (1) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; (2) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient.ConclusionsInterviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.

Background and objectivesThere is growing interest in efforts to enhance advance care planning for patients with kidney disease. Our goal was to elicit the perspectives on advance care planning of multidisciplinary providers who care for patients with advanced kidney disease.Design, setting, participants, & measurementsBetween April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who care for patients with advanced kidney disease. Participants were asked about their perspectives and experiences related to advance care planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory.ResultsThe comments of providers interviewed for this study spoke to significant system-level barriers to supporting the process of advance care planning for patients with advanced kidney disease. We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care, such as dialysis decision making; (3) unclear locus of responsibility and authority for advance care planning; and (4) lack of active collaboration and communication around advance care planning among different providers caring for the same patients.ConclusionsThe comments of providers who care for patients with advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around advance care planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around advance care planning among the different providers who care for patients with advanced kidney disease.

Palliative care practitioners have encountered morally distressing situations during the COVID-19 pandemic, and have supported their colleagues experiencing moral distress. Familiarity with the concept of moral distress and with COVID-specific causes of moral distress may help palliative care practitioners recognize moral distress in themselves and in their colleagues. This essay provides a brief review of the concept of moral distress, a list of potential COVID-19 specific causes of moral distress, and a list of organizational, team, and individual interventions to promote resilience. [ABSTRACT FROM AUTHOR]

Context: Patients in medical intensive care units (MICUs) are medically complex. This complexity can lead to uncertainty about patient goals and prognosis. Ethical dilemmas arise when there is uncertainty about the clinically and ethically appropriate actions for managing seriously ill patients. Ethics and palliative care involvement may promote improved quality of care and reduced staff moral distress. Project Description: In this clinical project, a physician with ethics, palliative care, and geriatrics expertise attended morning rounds with the MICU team weekly. Data on the logistics and impact from the first 2 years of the project were collected. Project Logistics and Preliminary Impact: Rounds lasted approximately 1.75 hours per week. The rounder was present for discussion of approximately 200 patients per year and made comments on nearly half of the patients. The comments were categorized as 25% ethics, 40% palliative care, 10% geriatrics, and 25% a combination or other topic. Attending physicians rated the project as helpful. The number of ethics and palliative care consults from the MICU increased in the first 2 years. Downstream impact has included a dietician reviewing Physician Orders for Life Sustaining Treatment forms with teams throughout the hospital and routine review of advance directives of newly admitted patients. Discussion: Weekly MICU rounding provides an opportunity to briefly teach staff and trainees about relevant ethics, palliative care, and geriatrics issues. It also provides a forum for discussion of ethically challenging cases. Considerations when starting a similar program are discussed. [ABSTRACT FROM AUTHOR]