Thematic Analysis of the Health Records of a National Sample of US Veterans With Advanced Kidney Disease Evaluated for Transplant.

Importance: To be considered for a kidney transplant, patients with advanced kidney disease must participate in a formal evaluation and selection process. Little is known about how this process proceeds in real-world clinical settings. Objective: To characterize the transplant evaluation process among a representative national sample of US veterans with advanced kidney disease who were referred to a kidney transplant center. Design, Setting, and Participants: This qualitative study was a thematic analysis of clinician notes in the electronic health records of US veterans referred for kidney transplant evaluation. In a random sample of 4000 patients with advanced kidney disease between January 1, 2004, and December 31, 2014, cared for in the US Department of Veterans Affairs (VA) health care system, there were 211 patients who were referred to a transplant center during the follow-up period. This group was included in the qualitative analysis and was followed up until their date of death or the end of the follow-up period on October 8, 2019. Main Outcomes and Measures: Dominant themes pertaining to the kidney transplant evaluation and selection process identified through thematic analysis. Results: Among 211 study patients, the mean (SD) age was 57.9 (9.5) years, and 202 patients (95.7%) were male. The following 4 dominant themes regarding the transplant evaluation process emerged: (1) far-reaching and inflexible medical evaluation, in which patients were expected to complete an extensive evaluation that could have substantial physical and emotional consequences, made little accommodation for their personal values and needs, and impacted other aspects of their care; (2) psychosocial valuation, in which the psychosocial component of the transplant assessment could be subjective and intrusive and could place substantial demands on patients' family members; (3) surveillance over compliance, in which the patients' ability and willingness to follow medical recommendations was an important criterion for transplant candidacy and their adherence to a wide range of recommendations and treatments was closely monitored; and (4) disempowerment and lack of transparency, in which patients and their local clinicians were often unsure about what to expect during the evaluation process or about the rationale for selection decisions. For the evaluation process to proceed, local clinicians had to follow transplant center requirements even when they believed the requirements did not align with best practices or the patients' needs. Conclusions and Relevance: In this qualitative study of US veterans with advanced kidney disease evaluated for transplant, clinician documentation in the medical record indicated that, to be considered for a kidney transplant, patients were required to participate in a rigid, demanding, and opaque evaluation and selection process over which they and their local clinicians had little control. These findings highlight the need for a more evidence-based, individualized, and collaborative approach to kidney transplant evaluation.

Thematic Analysis of Hospice Mentions in the Health Records of Veterans with Advanced Kidney Disease.

BACKGROUND: Patients with advanced kidney disease are less likely than many patients with other types of serious illness to enroll in hospice. Little is known about real-world clinical decision-making related to hospice for members of this population. METHODS: We used a text search tool to conduct a thematic analysis of documentation pertaining to hospice in the electronic medical record system of the Department of Veterans Affairs, for a national sample of 1000 patients with advanced kidney disease between 2004 and 2014 who were followed until October 8, 2019. RESULTS: Three dominant themes emerged from our qualitative analysis of the electronic medical records of 340 cohort members with notes containing hospice mentions: (1) hospice and usual care as antithetical care models: clinicians appeared to perceive a sharp demarcation between services that could be provided under hospice versus usual care and were often uncertain about hospice eligibility criteria. This could shape decision-making about hospice and dialysis and made it hard to individualize care; (2) hospice as a last resort: patients often were referred to hospice late in the course of illness and did not so much choose hospice as accept these services after all treatment options had been exhausted; and (3) care complexity: patients' complex care needs at the time of hospice referral could complicate transitions to hospice, stretch the limits of home hospice, and promote continued reliance on the acute care system. CONCLUSIONS: Our findings underscore the need to improve transitions to hospice for patients with advanced kidney disease as they approach the end of life.

Association of Family Ratings of Quality of End-of-Life Care With Stopping Dialysis Treatment and Receipt of Hospice Services.

Importance: Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care. Objectives: To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death. Design, Setting, and Participants: This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019. Exposure: Cessation of dialysis treatment before death. Main Outcomes and Measures: Bereaved Family Survey ratings. Results: Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001). Conclusions and Relevance: This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care. RESULTS: Overall, 52% of cohort members spent ≥2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns. CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.

Achieving a person-centered approach to dialysis discontinuation: An historical perspective.

In this essay, we describe the evolution of attitudes toward dialysis discontinuation in historical context, beginning with the birth of outpatient dialysis in the 1960s and continuing through the present. From the start, attitudes toward dialysis discontinuation have reflected the clinical context in which dialysis is initiated. In the 1960s and 1970s, dialysis was only available to select patients and concerns about distributive justice weighed heavily. Because there was strong enthusiasm for new technology and dialysis was regarded as a precious resource not to be wasted, stopping treatment had negative moral connotations and was generally viewed as something to be discouraged. More recently, dialysis has become the default treatment for advanced kidney disease in the United States, leading to concerns about overtreatment and whether patients' values, goals, and preferences are sufficiently integrated into treatment decisions. Despite the developments in palliative nephrology over the past 20 years, dialysis discontinuation remains a conundrum for patients, families, and professionals. While contemporary clinical practice guidelines support a person-centered approach toward stopping dialysis treatments, this often occurs in a crisis when all treatment options have been exhausted. Relatively little is known about the impact of dialysis discontinuation on the experiences of patients and families and there is a paucity of high-quality person-centered evidence to guide practice in this area. Clinicians need better insights into decision-making, symptom burden, and other palliative outcomes that patients might expect when they discontinue dialysis treatments to better support decision-making in this area.

Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care.

BACKGROUND: Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family. OBJECTIVE: To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments. METHODS: Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis. RESULTS: We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child's best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent. CONCLUSIONS: Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.

When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?

BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. METHODS: Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. RESULTS: We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. CONCLUSIONS: Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.

Elements of Family-Centered Care in the Pediatric Intensive Care Unit: An Integrative Review.

This paper reports result from a systematic search and thematic analysis of qualitative literature to identify key issues related to family-centered care, behaviors, and communication skills that support the parental role and improve patient and family outcomes in the PICU. Five themes were identified: 1) sharing information; 2) hearing parental voices; 3) making decisions for or with parents; 4) negotiating roles; and 5) individualizing communication. These themes highlight several gaps between how parents want to be involved and perceive clinicians engage them in the care of their child. Parental preferences for involvement differ in the domains of information sharing, decision making, and power-sharing across a spectrum of parental roles from parents as care provider to care recipient. The PICU setting may place clinicians in a double bind trying to both engage families and protect them from distress. Asking families of critically ill children about their preferences for participation across these domains may improve clinician-family relationships.

Intercultural competency development of health professions students during study abroad in India.

OBJECTIVE: Short-term international health-related study abroad seminars for health-professions students are increasingly popular because of a focus in higher education on global awareness and intercultural competency. This study describes a study abroad strategy to teach students intercultural communication skills and knowledge, and evaluated the effectiveness of a 3-week health-related study abroad program and intercultural competency curriculum in increasing skills and knowledge of health-profession students. METHODS: This was a mixed methods study, with a pretest-posttest, within-subjects design, and content analysis of student reflection journals. The curriculum was designed to increase students' sensitivity to different cultural worldviews and support attitudes such as curiosity and openness that lead to relational abilities such as flexibility and adaptability. Students completed the Intercultural Sensitivity Scale (ISS) and Intercultural Effectiveness Scale (IES) both 3 months prior to and immediately following the trip. Means and standard deviations were calculated and a paired t-test was performed. RESULTS: Qualitative analysis of students' reflections presented evidence of developing awareness of their own cultural worldview, openness to Indian culture, and the use of skills to develop intercultural competence. There was a non-statistically significant improvement in ISS and IES scores. CONCLUSIONS: Students' reflections demonstrated personal growth through the acquisition of knowledge and skills needed for further intercultural competence development. Students indicated that the curriculum helped them make meaning out of their experiences. Short-term health-related study abroad seminars may help students develop self-awareness and cultural openness by providing theoretically based curriculum before departure and while in the host country, including structured reflections and cultural mentoring, engagement with locals, and a balance of challenge with support.