Papers by Janelle S . Taylor
This American Life, 2024
This is a story adapted from my 2008 article "On Recognition, Caring, and Dementia," for the NPR ... more This is a story adapted from my 2008 article "On Recognition, Caring, and Dementia," for the NPR radio show and podcast This American Life. It aired on February 2, 2024, as part of Episode #823, "The Question Trap."
JAMA Open Network, 2023
IMPORTANCE The second year of the COVID-19 pandemic saw periods of dire health care resource limi... more IMPORTANCE The second year of the COVID-19 pandemic saw periods of dire health care resource limitations in the US, sometimes prompting official declarations of crisis, but little is known about how these conditions were experienced by frontline clinicians. OBJECTIVE To describe the experiences of US clinicians practicing under conditions of extreme resource limitation during the second year of the pandemic. DESIGN, SETTING, AND PARTICIPANTS This qualitative inductive thematic analysis was based on interviews with physicians and nurses providing direct patient care at US health care institutions during the COVID-19 pandemic. Interviews were conducted between December 28, 2020, and December 9, 2021. EXPOSURE Crisis conditions as reflected by official state declarations and/or media reports. MAIN OUTCOMES AND MEASURES Clinicians' experiences as obtained through interviews. RESULTS Interviews with 23 clinicians (21 physicians and 2 nurses) who were practicing in California, Idaho, Minnesota, or Texas were included. Of the 23 total participants, 21 responded to a background survey to assess participant demographics; among these individuals, the mean (SD) age was 49 (7.3) years, 12 (57.1%) were men, and 18 (85.7%) self-identified as White. Three themes emerged in qualitative analysis. The first theme describes isolation. Clinicians had a limited view on what was happening outside their immediate practice setting and perceived a disconnect between official messaging about crisis conditions and their own experience. In the absence of overarching systemlevel support, responsibility for making challenging decisions about how to adapt practices and allocate resources often fell to frontline clinicians. The second theme describes in-the-moment decision-making. Formal crisis declarations did little to guide how resources were allocated in clinical practice. Clinicians adapted practice by drawing on their clinical judgment but described feeling ill equipped to handle some of the operationally and ethically complex situations that fell to them. The third theme describes waning motivation. As the pandemic persisted, the strong sense of mission, duty, and purpose that had fueled extraordinary efforts earlier in the pandemic was eroded by unsatisfying clinical roles, misalignment between clinicians' own values and institutional goals, more distant relationships with patients, and moral distress. CONCLUSIONS AND RELEVANCE The findings of this qualitative study suggest that institutional plans to protect frontline clinicians from the responsibility for allocating scarce resources may be unworkable, especially in a state of chronic crisis. Efforts are needed to directly integrate frontline clinicians into institutional emergency responses and support them in ways that reflect the complex and dynamic realities of health care resource limitation.
Journal of Aging Studies, 2023
Ethnographic research with cognitively impaired older adults can be challenging, in part because ... more Ethnographic research with cognitively impaired older adults can be challenging, in part because cognitive impairment raises questions about the ability to provide informed consent. Relying on proxy consent is a commonly used strategy, but often excludes people with dementia who lack close kin (de Medeiros, Girling, & Berlinger, 2022). In this paper, we describe how we have analyzed existing research data from a well-established and ongoing prospective cohort study, the Adult Changes in Thought Study, along with unstructured text from the medical records of participants who had no living spouse or adult children when they developed dementia, as a way of studying the circumstances, life trajectories, caregiving resources, and care needs of this vulnerable and difficult-to-research group. In this article, we detail this methodology, exploring what can and cannot be gleaned from it, what the ethical implications may be, and how and whether this type of research can be considered ethnographic. In conclusion, we argue that collaborative interdisciplinary research using existing, longitudinal research data and text from medical records deserves to be considered as a potentially useful addition to the ethnographic toolkit. We anticipate that this is a methodology that could be applied more broadly, and paired with more traditional ethnographic methods, might be one way to make research with this population more inclusive.
The Conversation, 2023
Would-be physicians are often told that a winning medical school application requires stories abo... more Would-be physicians are often told that a winning medical school application requires stories about observing clinical care. Applicants' quests to get clinical experiences-through, for example, physician shadowing, global health experiences or medical scribe work-can have harmful unintended consequences. Such activities can perpetuate inequality when they disguise privilege as merit, reinforce damaging narratives or even hurt patients in poorer countries, and contribute to exploiting a vulnerable labour force. Volunteering for global health experience is a common way of gaining clinical observation experiences for medical school applicants. This, and other opportunities to get close to the practice of medicine, also have unintended consequences. (Shutterstock)
Advances in Health Sciences Education, 2023
Medical-school applicants learn from many sources that they must stand out to fit in. Many constr... more Medical-school applicants learn from many sources that they must stand out to fit in. Many construct self-presentations intended to appeal to medical-school admissions committees from the raw materials of work and volunteer experiences, in order to demonstrate that they will succeed in a demanding profession to which access is tightly controlled. Borrowing from the field of architecture the lens of construction ecology, which considers buildings in relation to the global effects of the resources required for their construction, we reframe medical-school admissions as a social phenomenon that has far-reaching harmful unintended consequences, not just for medicine but for the broader world. Illustrating with discussion of three common pathways to experiences that applicants widely believe will help them gain admission, we describe how the construction ecology of medical school admissions can recast privilege as merit, reinforce colonizing narratives, and lead to exploitation of people who are already disadvantaged.
Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 2023
Objectives
To examine the circumstances and needs of older adults who were “kinless,” defined as ... more Objectives
To examine the circumstances and needs of older adults who were “kinless,” defined as having no living spouse or children, when they developed dementia.
Methods
We conducted a secondary analysis of information from the Adult Changes in Thought (ACT) Study. Among 848 participants diagnosed with dementia between 1992 and 2016, we identified 64 who had no living spouse or child at dementia onset. We then conducted a qualitative analysis of administrative documents pertaining to these participants: handwritten comments recorded after each study visit, and medical history documents containing clinical chart notes from participants’ medical records.
Results
In this community dwelling cohort of older adults diagnosed with dementia, 8.4% were kinless at dementia onset. Participants in this sample had an average age of 87 years old, half lived alone, and one-third lived with unrelated persons. Through inductive content analysis we identified four themes that describe their circumstances and needs: 1) life trajectories, 2) caregiving resources, 3) care needs and gaps, and 4) turning points in caregiving arrangements.
Discussion
Our qualitative analysis reveals that the life trajectories that led members of the analytic cohort to be kinless at dementia onset were quite varied. This research highlights the importance of non-family caregivers, and participants’ own roles as caregivers. Our findings suggest that providers and health systems may need to work with other parties to directly provide dementia caregiving support rather than rely on family, and address factors such as neighborhood affordability that particularly affect older adults who have limited family support.
JAMA Network Open, 2022
IMPORTANCE There is increasing recognition of the long-term health effects of SARS-CoV-2 infectio... more IMPORTANCE There is increasing recognition of the long-term health effects of SARS-CoV-2 infection (sometimes called long COVID). However, little is yet known about the clinical diagnosis and management of long COVID within health systems. OBJECTIVE To describe dominant themes pertaining to the clinical diagnosis and management of long COVID in the electronic health records (EHRs) of patients with a diagnostic code for this condition (International Statistical Classification of Diseases and Related Health Problems, Tenth Revision [ICD-10] code U09.9). DESIGN, SETTING, AND PARTICIPANTS This qualitative analysis used data from EHRs of a national random sample of 200 patients receiving care in the Department of Veterans Affairs (VA) with Author affiliations and article information are listed at the end of this article.
American Ethnologist website, 2022
JAMA Internal Medicine, 2022
Affairs (VA) has been paying for US veterans to receive increasing amounts of care in the private... more Affairs (VA) has been paying for US veterans to receive increasing amounts of care in the private sector (non-VA care or VA community care). However, little is known about the implications of these legislative changes for the VA system. OBJECTIVE To describe the implications for the VA system of recent increases in VA-financed non-VA care. DESIGN, SETTING, AND PARTICIPANTS This qualitative study was a thematic analysis of documentation in the electronic health records (EHRs) of a random sample of US veterans with advanced kidney disease between June 6, 2019, and February 5, 2021. EXPOSURES Mentions of community care in participant EHRs. MAIN OUTCOMES AND MEASURES Dominant themes pertaining to VA-financed non-VA care. RESULTS Among 1000 study participants, the mean (SD) age was 73.8 (11.4) years, and 957 participants (95.7%) were male. Three interrelated themes pertaining to VA-financed non-VA care emerged from qualitative analysis of documentation in cohort member EHRs: (1) VA as mothership, which describes extensive care coordination by VA staff members and clinicians to facilitate care outside the VA and the tendency of veterans and their non-VA clinicians to rely on the VA to fill gaps in this care; (2) hidden work of veterans, which describes the efforts of veterans and their family members to navigate the referral process, and to serve as intermediaries between VA and non-VA clinicians; and (3) strain on the VA system, which describes a challenging referral process and the ways in which cross-system care has stretched the traditional roles of VA staff and clinicians and interfered with VA care processes. CONCLUSIONS AND RELEVANCE The findings of this qualitative study describing VA-financed non-VA care for veterans with advanced kidney disease spotlight the substantial challenges of cross-system use and the strain placed on the VA system, VA staff and clinicians, and veterans and their families in recent years. These difficult-to-measure consequences of cross-system care should be considered when budgeting, evaluating, and planning the provision of VA-financed non-VA care in the private sector.
Somatosphere, 2021
Conversation with Anna Harris, about ethnographic writing and knitting
JAMA Internal Medicine, 2020
IMPORTANCE To be considered for a kidney transplant, patients with advanced kidney disease must p... more 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.
Chapter in edited volume. In _The Evening of Life: The Challenges of Aging and Dying Well_, ed. J... more Chapter in edited volume. In _The Evening of Life: The Challenges of Aging and Dying Well_, ed. J Davis and P Scherz, University of Notre Dame Press, 2020
American Ethnological Society, 2020
A short work of speculative fiction, an attempt to imagine a hopeful vision of aging and eldercar... more A short work of speculative fiction, an attempt to imagine a hopeful vision of aging and eldercare in a post-Covid future, contributed to the series "Post-Covid Fantasies," ed. by Catherine Besteman, Heath Cabot, and Barak Kalir
Journal of the American Society of Nephrology, 2020
Background Patients with advanced kidney disease are less likely than many patients with other ty... more 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.
BMC Nephrology, 2020
Background: A potential pitfall of policies intended to promote referral for kidney transplant is... more Background: A potential pitfall of policies intended to promote referral for kidney transplant is that greater numbers of patients may be evaluated for transplant without experiencing the intended benefit of receiving a kidney. Little is known about the potential implications of this experience for patients.
Methods: We performed a thematic analysis of clinician documentation in the electronic medical records of all adults at a single medical center with advanced kidney disease who were referred to the local transplant coordinator for evaluation between 2008 and 2018 but did not receive a kidney.
Results: 148 of 209 patients referred to the local kidney transplant coordinator at our center (71%) had not received a kidney by the end of follow-up. Three dominant themes emerged from qualitative analysis of
documentation in the medical records of these patients: 1) Forward momentum: patients found themselves engaged in an iterative process of testing and treatment that tended to move forward unless an absolute
contraindication to transplant was identified or patients disengaged; 2) Potential for transplant shapes other medical decisions: engagement in the transplant evaluation process could impact many other aspects of patients’
care; and 3) Personal responsibility and psychological burden for patients and families: clinician documentation suggested that patients felt personally responsible for the course of their evaluation and that the process could take an emotional toll on them and their family members.
Conclusions: Engagement in the kidney transplant evaluation process can be a significant undertaking for patients and families and may impact many other aspects of their care. Policies to promote referral for kidney transplant should be coupled with efforts to strengthen shared decision-making to ensure that the decision to undergo transplant evaluation is framed as an explicit choice with benefits, risks, and alternatives and patients have an opportunity to shape their involvement in this process.
Keywords: Kidney transplant evaluation, Person-centered medicine, Shared decision-making, End-stage kidney disease, Transplant, Qualitative analysis
American Journal of Kidney Disease, 2020
Rationale & Objective: It is relatively unusual for US patients with advanced chronic kidney dise... more Rationale & Objective: It is relatively unusual for US patients with advanced chronic kidney disease (CKD) to forgo initiation of maintenance dialysis. Our objective was to describe practice approaches of US nephrologists who have provided conservative care for members of this population.
Study Design: Qualitative study using semistructured interviews.
Setting & Participants: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis.
Analytical Approach: Grounded theory methods to identify dominant themes reflecting nephrologists’ experiences with and approaches to conservative care for patients with advanced CKD.
Results: Nephrologists who participated in this study were primarily from academic practices (n = 14) and urban areas (n = 15). Two prominent themes emerged from qualitative analysis reflecting nephrologists’ experiences with and approaches to conservative care: (1) personcentered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical
decision making, and being flexible to the changing needs, values, and preferences of patients; and (2) improvising a care infrastructure, which described the challenges of managing patients conservatively within health
systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different health care roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default, and championing the principles of conservative care among their colleagues.
Limitations: The themes identified likely are not generalizable to most US nephrologists.
Conclusions: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.
JAMA Internal Medicine, 2019
IMPORTANCE Prognostic understanding can shape patients' treatment goals and preferences. Patients... more IMPORTANCE Prognostic understanding can shape patients' treatment goals and preferences. Patients undergoing dialysis in the United States have limited life expectancy and may receive end-of-life care directed at life extension. Little is known about their prognostic expectations. OBJECTIVE To understand the prognostic expectations of patients undergoing dialysis and how these relate to care planning, goals, and preferences.
Somatosphere.net, 2019
Photocollage and accompanying essay, contributed to the “Thinking with Dementia” series
Cultural Anthropology blog, 2014
Contribution to the "Field Sights: Care" series, on the Cultural Anthropology journal blog
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Papers by Janelle S . Taylor
To examine the circumstances and needs of older adults who were “kinless,” defined as having no living spouse or children, when they developed dementia.
Methods
We conducted a secondary analysis of information from the Adult Changes in Thought (ACT) Study. Among 848 participants diagnosed with dementia between 1992 and 2016, we identified 64 who had no living spouse or child at dementia onset. We then conducted a qualitative analysis of administrative documents pertaining to these participants: handwritten comments recorded after each study visit, and medical history documents containing clinical chart notes from participants’ medical records.
Results
In this community dwelling cohort of older adults diagnosed with dementia, 8.4% were kinless at dementia onset. Participants in this sample had an average age of 87 years old, half lived alone, and one-third lived with unrelated persons. Through inductive content analysis we identified four themes that describe their circumstances and needs: 1) life trajectories, 2) caregiving resources, 3) care needs and gaps, and 4) turning points in caregiving arrangements.
Discussion
Our qualitative analysis reveals that the life trajectories that led members of the analytic cohort to be kinless at dementia onset were quite varied. This research highlights the importance of non-family caregivers, and participants’ own roles as caregivers. Our findings suggest that providers and health systems may need to work with other parties to directly provide dementia caregiving support rather than rely on family, and address factors such as neighborhood affordability that particularly affect older adults who have limited family support.
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.
Methods: We performed a thematic analysis of clinician documentation in the electronic medical records of all adults at a single medical center with advanced kidney disease who were referred to the local transplant coordinator for evaluation between 2008 and 2018 but did not receive a kidney.
Results: 148 of 209 patients referred to the local kidney transplant coordinator at our center (71%) had not received a kidney by the end of follow-up. Three dominant themes emerged from qualitative analysis of
documentation in the medical records of these patients: 1) Forward momentum: patients found themselves engaged in an iterative process of testing and treatment that tended to move forward unless an absolute
contraindication to transplant was identified or patients disengaged; 2) Potential for transplant shapes other medical decisions: engagement in the transplant evaluation process could impact many other aspects of patients’
care; and 3) Personal responsibility and psychological burden for patients and families: clinician documentation suggested that patients felt personally responsible for the course of their evaluation and that the process could take an emotional toll on them and their family members.
Conclusions: Engagement in the kidney transplant evaluation process can be a significant undertaking for patients and families and may impact many other aspects of their care. Policies to promote referral for kidney transplant should be coupled with efforts to strengthen shared decision-making to ensure that the decision to undergo transplant evaluation is framed as an explicit choice with benefits, risks, and alternatives and patients have an opportunity to shape their involvement in this process.
Keywords: Kidney transplant evaluation, Person-centered medicine, Shared decision-making, End-stage kidney disease, Transplant, Qualitative analysis
Study Design: Qualitative study using semistructured interviews.
Setting & Participants: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis.
Analytical Approach: Grounded theory methods to identify dominant themes reflecting nephrologists’ experiences with and approaches to conservative care for patients with advanced CKD.
Results: Nephrologists who participated in this study were primarily from academic practices (n = 14) and urban areas (n = 15). Two prominent themes emerged from qualitative analysis reflecting nephrologists’ experiences with and approaches to conservative care: (1) personcentered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical
decision making, and being flexible to the changing needs, values, and preferences of patients; and (2) improvising a care infrastructure, which described the challenges of managing patients conservatively within health
systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different health care roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default, and championing the principles of conservative care among their colleagues.
Limitations: The themes identified likely are not generalizable to most US nephrologists.
Conclusions: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.
To examine the circumstances and needs of older adults who were “kinless,” defined as having no living spouse or children, when they developed dementia.
Methods
We conducted a secondary analysis of information from the Adult Changes in Thought (ACT) Study. Among 848 participants diagnosed with dementia between 1992 and 2016, we identified 64 who had no living spouse or child at dementia onset. We then conducted a qualitative analysis of administrative documents pertaining to these participants: handwritten comments recorded after each study visit, and medical history documents containing clinical chart notes from participants’ medical records.
Results
In this community dwelling cohort of older adults diagnosed with dementia, 8.4% were kinless at dementia onset. Participants in this sample had an average age of 87 years old, half lived alone, and one-third lived with unrelated persons. Through inductive content analysis we identified four themes that describe their circumstances and needs: 1) life trajectories, 2) caregiving resources, 3) care needs and gaps, and 4) turning points in caregiving arrangements.
Discussion
Our qualitative analysis reveals that the life trajectories that led members of the analytic cohort to be kinless at dementia onset were quite varied. This research highlights the importance of non-family caregivers, and participants’ own roles as caregivers. Our findings suggest that providers and health systems may need to work with other parties to directly provide dementia caregiving support rather than rely on family, and address factors such as neighborhood affordability that particularly affect older adults who have limited family support.
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.
Methods: We performed a thematic analysis of clinician documentation in the electronic medical records of all adults at a single medical center with advanced kidney disease who were referred to the local transplant coordinator for evaluation between 2008 and 2018 but did not receive a kidney.
Results: 148 of 209 patients referred to the local kidney transplant coordinator at our center (71%) had not received a kidney by the end of follow-up. Three dominant themes emerged from qualitative analysis of
documentation in the medical records of these patients: 1) Forward momentum: patients found themselves engaged in an iterative process of testing and treatment that tended to move forward unless an absolute
contraindication to transplant was identified or patients disengaged; 2) Potential for transplant shapes other medical decisions: engagement in the transplant evaluation process could impact many other aspects of patients’
care; and 3) Personal responsibility and psychological burden for patients and families: clinician documentation suggested that patients felt personally responsible for the course of their evaluation and that the process could take an emotional toll on them and their family members.
Conclusions: Engagement in the kidney transplant evaluation process can be a significant undertaking for patients and families and may impact many other aspects of their care. Policies to promote referral for kidney transplant should be coupled with efforts to strengthen shared decision-making to ensure that the decision to undergo transplant evaluation is framed as an explicit choice with benefits, risks, and alternatives and patients have an opportunity to shape their involvement in this process.
Keywords: Kidney transplant evaluation, Person-centered medicine, Shared decision-making, End-stage kidney disease, Transplant, Qualitative analysis
Study Design: Qualitative study using semistructured interviews.
Setting & Participants: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis.
Analytical Approach: Grounded theory methods to identify dominant themes reflecting nephrologists’ experiences with and approaches to conservative care for patients with advanced CKD.
Results: Nephrologists who participated in this study were primarily from academic practices (n = 14) and urban areas (n = 15). Two prominent themes emerged from qualitative analysis reflecting nephrologists’ experiences with and approaches to conservative care: (1) personcentered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical
decision making, and being flexible to the changing needs, values, and preferences of patients; and (2) improvising a care infrastructure, which described the challenges of managing patients conservatively within health
systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different health care roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default, and championing the principles of conservative care among their colleagues.
Limitations: The themes identified likely are not generalizable to most US nephrologists.
Conclusions: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.