Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research.

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.

Value Placed on Comfort vs Life Prolongation Among Patients Treated With Maintenance Dialysis.

Importance: Patients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values. Objective: To evaluate the association of patients' health care values with engagement in advance care planning and end-of-life care. Design, Setting, and Participants: Survey study of patients who received maintenance dialysis between 2015 and 2018 at dialysis centers in the greater metropolitan areas of Seattle, Washington, and Nashville, Tennessee, with longitudinal follow-up of decedents. Logistic regression models were used to estimate probabilities. Data analysis was conducted between May and October 2022. Exposures: A survey question about the value that the participant would place on longevity-focused vs comfort-focused care if they were to become seriously ill. Main Outcomes and Measures: Self-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims. Results: Of 933 patients (mean [SD] age, 62.6 [14.0] years; 525 male patients [56.3%]; 254 [27.2%] identified as Black) who responded to the question about values and could be linked to registry data (65.2% response rate [933 of 1431 eligible patients]), 452 (48.4%) indicated that they would value comfort-focused care, 179 (19.2%) that they would value longevity-focused care, and 302 (32.4%) that they were unsure about the intensity of care they would value. Many had not completed an advance directive (estimated probability, 47.5% [95% CI, 42.9%-52.1%] of those who would value comfort-focused care vs 28.1% [95% CI, 24.0%-32.3%] of those who would value longevity-focused care or were unsure; P < .001), had not discussed hospice (estimated probability, 28.6% [95% CI, 24.6%-32.9%] comfort focused vs 18.2% [95% CI, 14.7%-21.7%] longevity focused or unsure; P < .001), or had not discussed stopping dialysis (estimated probability, 33.3% [95% CI, 29.0%-37.7%] comfort focused vs 21.9% [95% CI, 18.2%-25.8%] longevity focused or unsure; P < .001). Most respondents wanted to receive cardiopulmonary resuscitation (estimated probability, 78.0% [95% CI, 74.2%-81.7%] comfort focused vs 93.9% [95% CI, 91.4%-96.1%] longevity focused or unsure; P < .001) and mechanical ventilation (estimated probability, 52.0% [95% CI, 47.4%-56.6%] comfort focused vs 77.9% [95% CI, 74.0%-81.7%] longevity focused or unsure; P < .001). Among decedents, the percentages of participants who received an intensive procedure during the final month of life (estimated probability, 23.5% [95% CI, 16.5%-31.0%] comfort focused vs 26.1% [95% CI, 18.0%-34.5%] longevity focused or unsure; P = .64), discontinued dialysis (estimated probability, 38.3% [95% CI, 32.0%-44.8%] comfort focused vs 30.2% [95% CI, 23.0%-37.8%] longevity focused or unsure; P = .09), and enrolled in hospice (estimated probability, 32.2% [95% CI, 25.7%-38.7%] comfort focused vs 23.3% [95% CI, 16.4%-30.5%] longevity focused or unsure; P = .07) were not statistically different. Conclusions and Relevance: This survey study found that there appeared to be a disconnect between patients' expressed values, which were largely comfort focused, and their engagement in advance care planning and end-of-life care, which reflected a focus on longevity. These findings suggest important opportunities to improve the quality of care for patients receiving dialysis.

Decision-making about dialysis: Beyond just dialysis or death.

Nearly half of the persons receiving dialysis in the United States are aged 65 years or older. Kidney failure occurs most frequently in older adults, and typically triggers a discussion regarding dialysis treatment. In this Special Article, we describe the journey of Mr. Howard Russell, an older adult who experienced kidney failure and underwent dialysis. Using the experience of Mr. Russell, we illustrate the complexity of dialysis decision-making, including how disease trajectory and health policy can potentially impede older adults from achieving "what matters." Our intent is to provide guidance regarding these barriers and support to clinicians who are sharing similar journeys with older adults making decisions about dialysis. Based on Mr. Russell's journey, we suggest that when discussing dialysis with an older adult, four points be considered: (1) recognize if dialysis is needed long-term; (2) understand what matters for the older adult; (3) sync the treatment plan when what matters changes; and (4) set up with resources for kidney failure, which is limited but evolving.

Kinless Older Adults With Dementia: Qualitative Analysis of Data From the Adult Changes in Thought Study.

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 study. Among 848 participants diagnosed with dementia between 1994 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 4 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 nonfamily caregivers and participants' own roles as caregivers. Our findings suggest that clinicians 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.

Complexity and Challenges of the Clinical Diagnosis and Management of Long COVID.

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 documentation of a positive result on a polymerase chain reaction (PCR) test for SARS-CoV-2 between February 27, 2020, and December 31, 2021, and an ICD-10 diagnostic code for long COVID between October 1, 2021, when the code was implemented, and March 1, 2022. Data were analyzed from February 5 to May 31, 2022. Main Outcomes and Measures: A text word search and qualitative analysis of patients' VA-wide EHRs was performed to identify dominant themes pertaining to the clinical diagnosis and management of long COVID. Results: In this qualitative analysis of documentation in the VA-wide EHR, the mean (SD) age of the 200 sampled patients at the time of their first positive PCR test result for SARS-CoV-2 in VA records was 60 (14.5) years. The sample included 173 (86.5%) men; 45 individuals (22.5%) were identified as Black and 136 individuals (68.0%) were identified as White. In qualitative analysis of documentation pertaining to long COVID in patients' EHRs 2 dominant themes were identified: (1) clinical uncertainty, in that it was often unclear whether particular symptoms could be attributed to long COVID, given the medical complexity and functional limitations of many patients and absence of specific markers for this condition, which could lead to ongoing monitoring, diagnostic testing, and specialist referral; and (2) care fragmentation, describing how post-COVID-19 care processes were often siloed from and poorly coordinated with other aspects of care and could be burdensome to patients. Conclusions and Relevance: This qualitative study of documentation in the VA EHR highlights the complexity of diagnosing long COVID in clinical settings and the challenges of caring for patients who have or are suspected of having this condition.

A Randomized Trial of a Nurse-Led Palliative Care Intervention for Patients with Newly Diagnosed Lung Cancer.

Background: Specialist palliative care improves quality of life (QOL), symptom burden, and may prolong survival among patients with advanced lung cancer. Previous trials focused on advanced disease, and less is known about patients across a broad range of stages. Objective: We sought to assess the effect of a nurse-led telephone-based primary palliative care intervention that focused on patients across a broad range of stages. Design, Setting, and Participants: We conducted a multisite randomized controlled trial in the United States involving patients diagnosed within two months with any stage or histology of lung cancer to compare the effects of a telephone-based palliative care intervention delivered by registered nurses trained in primary palliative care versus usual care. Main Outcomes and Measures: The primary outcome was the Functional Assessment of Cancer Therapy-Lung Scale Total Outcome Index (FACT-L TOI), which measures QOL and symptoms. We estimated having 80% power to detect a 5-point change from baseline to three months. Secondary outcome was a change in satisfaction of care, measured by the FAMCARE-P13. Results: A total of 151 patients were enrolled over 30 months. Patients were, on average, male (98%), age 70 years, White (85%), and 36% diagnosed with stage I-II, and 64% had stage III-IV. In comparison to usual care, patients in the nurse-led intervention did not report improvement in QOL from baseline to three months follow-up or demonstrate differences in treatment effect by site or cancer stage: FACT-L TOI 1.03 (95% confidence interval [CI]: -3.98 to 6.04). Satisfaction with care did not significantly improve: 0.66 (95% CI: -2.01 to 3.33). Conclusions: Among patients with newly diagnosed lung cancer, a nurse-led, primary palliative care intervention did not significantly improve QOL, symptom burden, or satisfaction of care. In contrast to several clinical trials demonstrating the effectiveness of delivering specialty palliative care with disease-modifying treatments on QOL among patients with advanced lung cancer, this intervention did not significantly improve QOL among patients with any stage lung cancer. Future research should identify which specific components of primary palliative care improve outcomes for patients newly diagnosed with lung cancer.

As the Pandemic Recedes, Will Moral Distress Continue to Surge?

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.

Family Members' Understanding of the End-of-Life Wishes of People Undergoing Maintenance Dialysis.

BACKGROUND AND OBJECTIVES: People receiving maintenance dialysis must often rely on family members and other close persons to make critical treatment decisions toward the end of life. Contemporary data on family members' understanding of the end-of-life wishes of members of this population are lacking. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Among 172 family members of people undergoing maintenance dialysis, we ascertained their level of involvement in the patient's care and prior discussions about care preferences. We also compared patient and family member responses to questions about end-of-life care using percentage agreement and the κ-statistic. RESULTS: The mean (SD) age of the 172 enrolled family members was 55 (±17) years, 136 (79%) were women, and 43 (25%) were Black individuals. Sixty-seven (39%) family members were spouses or partners of enrolled patients. A total of 137 (80%) family members had spoken with the patient about whom they would want to make medical decisions, 108 (63%) had spoken with the patient about their treatment preferences, 47 (27%) had spoken with the patient about stopping dialysis, and 56 (33%) had spoken with the patient about hospice. Agreement between patient and family member responses was highest for the question about whether the patient would want cardiopulmonary resuscitation (percentage agreement 83%, κ=0.31), and was substantially lower for questions about a range of other aspects of end-of-life care, including preference for mechanical ventilation (62%, 0.21), values around life prolongation versus comfort (45%, 0.13), preferred place of death (58%, 0.07), preferred decisional role (54%, 0.15), and prognostic expectations (38%, 0.15). CONCLUSIONS: Most surveyed family members reported they had spoken with the patient about their end-of-life preferences but not about stopping dialysis or hospice. Although family members had a fair understanding of patients' cardiopulmonary resuscitation preferences, most lacked a detailed understanding of their perspectives on other aspects of end-of-life care.

Association Between Self-reported Importance of Religious or Spiritual Beliefs and End-of-Life Care Preferences Among People Receiving Dialysis.

Importance: Although people receiving maintenance dialysis have limited life expectancy and a high burden of comorbidity, relatively few studies have examined spirituality and religious beliefs among members of this population. Objective: To examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. Design, Setting, and Participants: A cross-sectional survey study was conducted among adults who were undergoing maintenance dialysis at 31 facilities in Seattle, Washington, and Nashville, Tennessee, between April 22, 2015, and October 2, 2018. The survey included a series of questions assessing patients' knowledge, preferences, values, and expectations related to end-of-life care. Data were analyzed from February 12, 2020, to April 21, 2021. Exposures: The importance of religious or spiritual beliefs was ascertained by asking participants to respond to this statement: "My religious or spiritual beliefs are what really lie behind my whole approach to life." Response options were definitely true, tends to be true, tends not to be true, or definitely not true. Main Outcomes and Measurements: Outcome measures were based on self-reported engagement in advance care planning, resuscitation preferences, values regarding life prolongation, preferred place of death, decision-making preference, thoughts or discussion about hospice or stopping dialysis, prognostic expectations, and palliative care needs. Results: A total of 937 participants were included in the cohort, of whom the mean (SD) age was 62.8 (13.8) years and 524 (55.9%) were men. Overall, 435 (46.4%) participants rated the statement about religious or spiritual beliefs as definitely true, 230 (24.6%) rated it as tends to be true, 137 (14.6%) rated it as tends not to be true, and 135 (14.4%) rated it as definitely not true. Participants for whom these beliefs were more important were more likely to prefer cardiopulmonary resuscitation (estimated probability for definitely true: 69.8% [95% CI, 66.5%-73.2%]; tends to be true: 60.8% [95% CI, 53.4%-68.3%]; tends not to be true: 61.6% [95% CI, 53.6%-69.6%]; and definitely not true: 60.6% [95% CI, 52.5%-68.6%]; P for trend = .003) and mechanical ventilation (estimated probability for definitely true: 42.6% [95% CI, 38.1%-47.0%]; tends to be true: 33.5% [95% CI, 25.9%-41.2%]; tends not to be true: 35.1% [95% CI, 27.2%-42.9%]; and definitely not true: 27.9% [95% CI, 19.6%-36.1%]; P for trend = .002) and to prefer a shared role in decision-making (estimated probability for definitely true: 41.6% [95% CI, 37.7%-45.5%]; tends to be true: 35.4% [95% CI, 29.0%-41.8%]; tends not to be true: 36.0% [95% CI, 26.7%-45.2%]; and definitely not true: 23.8% [95% CI, 17.3%-30.3%]; P for trend = .001) and were less likely to have thought or spoken about stopping dialysis. These participants were no less likely to have engaged in advance care planning, to value relief of pain and discomfort, to prefer to die at home, to have ever thought or spoken about hospice, and to have unmet palliative care needs and had similar prognostic expectations. Conclusions and Relevance: The finding that religious or spiritual beliefs were important to most study participants suggests the value of an integrative approach that addresses these beliefs in caring for people who receive dialysis.

Professional roles and relationships during the COVID-19 pandemic: a qualitative study among US clinicians.

OBJECTIVE: The COVID-19 pandemic has transformed healthcare delivery in the USA, but there has been little empirical work describing the impact of these changes on clinicians. We conducted a study to address the following question: how has the pandemic impacted US clinicians' professional roles and relationships? DESIGN: Inductive thematic analysis of semi-structured interviews. SETTING: Clinical settings across the USA in April and May of 2020. PARTICIPANTS: Clinicians with leadership and/or clinical roles during the COVID-19 pandemic. MEASURES: Emergent themes related to professional roles and relationships. RESULTS: Sixty-one clinicians participated in semi-structured interviews. Study participants were practising in 15 states across the USA, and the majority were White physicians from large academic centres. Three overlapping and inter-related themes emerged from qualitative analysis of interview transcripts: (1) disruption: boundaries between work and home life became blurred and professional identity and usual clinical roles were upended; (2) constructive adaptation: some clinicians were able to find new meaning in their work and described a spirit of collaboration, shared goals, open communication and mutual respect among colleagues; and (3) discord and estrangement: other clinicians felt alienated from their clinical roles and experienced demoralising work environments marked by division, value conflicts and mistrust. CONCLUSIONS: Clinicians encountered marked disruption of their professional roles, identities and relationships during the pandemic to which they and their colleagues responded in a range of different ways. Some described a spirit of collaboration and camaraderie, while others felt alienated by their new roles and experienced work environments marked by division, value conflicts and mistrust. Our findings highlight the importance of effective teamwork and efforts to support clinician well-being during the COVID-19 pandemic.

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.

Cardiopulmonary Resuscitation Preferences of People Receiving Dialysis.

Importance: Whether the cardiopulmonary resuscitation (CPR) preferences of patients receiving dialysis align with their values and other aspects of end-of-life care is not known. Objective: To describe the CPR preferences of patients receiving dialysis and how these preferences are associated with their responses to questions about other aspects of end-of-life care. Design, Setting, and Participants: Cross-sectional survey study of a consecutive sample of patients receiving dialysis at 31 nonprofit dialysis facilities in 2 US metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 22, 2015, and October 2, 2018. Analyses for this article were conducted between December 2018 and April 2020. Exposures: Participants were asked to respond to the question "If you had to decide right now, would you want CPR if your heart were to stop beating?" Those who indicated they would probably or definitely want CPR were categorized as preferring CPR. Main Outcomes and Measures: This study examined the association between preference for CPR and other treatment preferences, engagement in advance care planning, values, desired place of death, expectations about prognosis, symptoms, and palliative care needs. Results: Of the 1434 individuals invited to complete the survey, 1009 agreed to participate, and 876 were included in the analytic cohort (61.1%). The final cohort had a mean (SD) age of 62.6 (14.0) years; 492 (56.2%) were men, and 528 (60.3%) were White individuals. Among 738 of 876 participants (84.2%) who indicated that they would definitely or probably want CPR (CPR group), 555 (75.2%) wanted mechanical ventilation vs 13 of 138 (9.4%) of those who did not want CPR (do not resuscitate [DNR] group) (P < .001). A total of 249 of 738 participants (33.7%) in the CPR group vs 84 of 138 (60.9%) in the DNR group had documented treatment preferences (P < .001). In terms of values about future care, 171 participants (23.2%) in the CPR group vs 5 of 138 (3.6%) in the DNR group valued life prolongation (P < .001); 320 in the CPR group (43.4%) vs 109 of 138 in the DNR group (79.0%) valued comfort (P < .001); and 247 participants (33.5%) in the CPR group vs 24 of 138 (17.4%) in the DNR group were unsure about their wishes for future care (P < .001). In the CPR group, 207 (28.0%) had thought about stopping dialysis vs 62 of 138 (44.9%) in the DNR group (P < .001), and 181 (24.5%) vs 58 of 138 (42.0%) had discussed stopping dialysis (P = .001). No statistically significant associations were observed between CPR preference and documentation of a surrogate decision maker, thoughts or discussion of hospice, preferred place of death, expectations about prognosis, reported symptoms, or palliative care needs. Conclusions and Relevance: The CPR preferences of patients receiving dialysis were associated with some, but not all, other aspects of end-of-life care. How participants responded to questions about these other aspects of end-of-life care were not always aligned with their CPR preference. More work is needed to integrate discussions about code status with bigger picture conversations about patients' values, goals, and preferences for end-of-life care.

Ethical Concerns in the Care of Patients with Advanced Kidney Disease: a National Retrospective Study, 2000-2011.

BACKGROUND: Understanding ethical concerns that arise in the care of patients with advanced kidney disease may help identify opportunities to support medical decision-making. OBJECTIVE: To describe the clinical contexts and types of ethical concerns that arise in the care of patients with advanced kidney disease. DESIGN: Retrospective cohort study. PARTICIPANTS: A total of 28,568 Veterans with advanced kidney disease between 2000 and 2009 followed through death or 2011. EXPOSURE: Clinical scenarios that prompted clinicians to consider an ethics consultation as documented in the medical record. MAIN MEASURES: Dialysis initiation, dialysis discontinuation, receipt of an intensive procedure during the final month of life, and hospice enrollment. KEY RESULTS: 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. CONCLUSIONS: 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.

Ethics Education During Palliative Medicine Fellowship.

BACKGROUND: Palliative care clinicians frequently encounter situations in which there are ethical dilemmas about the right thing to do. Palliative medicine fellowships are required to include education about ethics. Our fellowship increased fellows' ethics education through monthly didactics, lectures in a professional development series, and a month-long ethics rotation. METHODS: We sought input from graduates of our palliative medicine fellowship about the content and amount of the ethics education they received. Fellowship graduates were invited via e-mail to complete an online survey about the ethics education they received during fellowship. They were asked questions about their work environment, frequency with which they encounter ethical dilemmas, their perspectives on the ethics content, the amount of ethics education they received during fellowship, and their input on ways to improve the ethics education within the fellowship. RESULTS: Twenty-eight (82%) of 34 fellowship graduates completed the survey; 93% noted that they encounter ethical dilemmas in their work, with half encountering these on a daily or weekly basis, and 86% noted that colleagues ask them questions about ethics because of their palliative medicine training. None responded that they had received too much ethics education. Fellowship graduates identified ethics content that has been useful since completing fellowship and suggested ways to improve ethics education for future fellows. CONCLUSION: Graduates of a palliative medicine fellowship encounter ethical dilemmas often and frequently are asked questions about ethics. Palliative medicine fellowships may want to examine their ethics curriculum to ensure that graduating fellows are learning about relevant ethics topics and are comfortable discussing ethical dilemmas with others.

Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis: United States Renal Data System Study of Treatment Preferences (USTATE).

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. Design, Setting, and Participants: Cross-sectional survey study of 996 eligible patients treated with regular dialysis at 31 nonprofit dialysis facilities in 2 metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 2015 and October 2018. After a pilot phase, 1434 eligible patients were invited to participate (response rate, 69.5%). To provide a context for interpreting survey participants' prognostic estimates, United States Renal Data System standard analysis files were used to construct a comparison cohort of 307 602 patients undergoing in-center hemodialysis on January 1, 2006, and followed for death through July 31, 2017. Final analyses for this study were conducted between November 2018 and March 2019. Exposures: Responses to the question "How long would you guess people your age with similar health conditions usually live?" (<5 years, 5-10 years, >10 years, or not sure). Main Outcomes and Measures: Self-reported (1) documentation of a surrogate decision-maker, (2) documentation of treatment preferences, (3) values around life prolongation, (4) preferences for receipt of cardiopulmonary resuscitation and mechanical ventilation, and (5) desired place of death. Results: Of the 996 survey respondents, the mean (SD) age was 62.7 (13.9) years, and 438 (44.0%) were women. Overall, 112 (11.2%) survey respondents selected a prognosis of fewer than 5 years, 150 (15.1%) respondents selected 5 to 10 years, 330 (33.1%) respondents selected more than 10 years, and 404 (40.6%) were not sure. By comparison, 185 427 (60.3%) prevalent US in-center patients undergoing hemodialysis died within 5 years, 58 437 (19.0%) died within 5 to 10 years, and 63 738 (20.7%) lived more than 10 years. In analyses adjusted for participant characteristics, survey respondents with a prognostic expectation of more than 10 years (vs <5 years) were less likely to report documentation of a surrogate decision-maker (adjusted odds ratio [aOR], 0.6; 95% CI, 0.4-0.9) and treatment preferences (aOR, 0.4; 95% CI, 0.2-0.6) and to value comfort over life extension (aOR, 0.1; 95% CI, 0.04-0.3), and were more likely to want cardiopulmonary resuscitation (aOR, 5.3; 95% CI, 3.2-8.7) and mechanical ventilation (aOR, 2.2; 95% CI, 1.2-3.7). The respondents who reported that they were not sure about prognosis had similar associations. Conclusions and Relevance: Uncertain and overly optimistic prognostic expectations may limit the benefit of advance care planning and contribute to high-intensity end-of-life care in patients undergoing dialysis.

Symptom Burden and Palliative Care Needs Among High-Risk Veterans With Multimorbidity.

CONTEXT: Palliative care research has focused on patients with disease-specific conditions. However, older patients with multimorbidity may have unmet palliative care needs. OBJECTIVES: We assessed symptom burden and quality of life among veterans with multimorbidity and sought to determine if their bothersome symptoms were addressed and treated in the primary care setting. We sought to identify specific diagnoses that may account for greater symptom burden. We hypothesized that patients with a higher number of diagnoses would experience greater symptom burden and poorer quality of life. METHODS: We identified veterans at high risk of hospitalization or death using a validated prognostic model. We administered cross-sectional surveys via telephone, The Memorial Symptom Assessment Scale-Short Form and Veterans RAND 12, to randomly selected patients in primary care in the VA Health Care System from May to December 2015. We assessed if their most bothersome symptom was addressed and treated during their most recent visit. Regression models identified specific diagnoses accounting for greater symptom burden and patient predictors of high symptom burden and poor quality of life. RESULTS: Patients (n = 503) reported (10.6 ± 5.5) active symptoms and poor physical quality of life. Patients reported pain and dyspnea as their most bothersome symptoms (n = 145 [29%] and n = 57 [11%], respectively). Most patients acknowledged their clinicians assessed (n = 348 [74%]) and treated (n = 330 [70%]) their most bothersome symptom. Physical symptoms (78%, P < 0.0001) were more likely to be addressed than psychological symptoms (55%, P < 0.001). Patients diagnosed with obesity or depression experienced greater physical symptom burden. Younger patients reported greater symptom severity than older patients (P < 0.01). Younger patients and those with greater multimorbidities reported lower self-perceived quality of health than older patients and those with fewer multimorbidities (P = 0.01 and P < 0.01, respectively). CONCLUSION: Outpatients with multimorbidity have high symptom burden, unaddressed symptoms, poor quality of life, and unmet palliative care needs. Our findings support standardization of comprehensive symptom assessment and management in primary care for veterans with multimorbidities, which may ameliorate symptoms and improve quality of life.

Weekly Rounding With the MICU Team: Description of a Clinical Ethics Project.

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.

Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease.

BACKGROUND AND OBJECTIVES: The 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, & MEASUREMENTS: As 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. RESULTS: We 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. CONCLUSIONS: Interactions 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.

Bridging the Cultural Divide Between Oncology and Palliative Care Subspecialties: Clinicians' Perceptions on Team Integration.

PURPOSE: Palliative care improves symptom burden, distress, patient and family satisfaction, and survival for patients with cancer. Oncology professional societies endorse the integration of palliative care into routine care for patients with advanced cancers. Despite this, cultural differences between medical subspecialties and the limited number of clinicians trained in palliative care lower the adoption of integrated care models. We assessed oncologists' and palliative care clinicians' perceptions about integrating oncology and palliative care using a nurse delivering palliative care to patients newly diagnosed with lung cancer. METHODS: We conducted semistructured telephone interviews with 7 oncology clinicians and 12 palliative care clinicians purposively sampled across 6 geographically diverse Department of Veterans Affairs medical centers (VAs). Oncologists were asked about their perspectives and experiences with consulting palliative care services. Palliative care clinicians were asked about their experiences with receiving consultations from subspecialties. Both were asked about utilizing a registered nurse to deliver telephone-based palliative care to patients newly diagnosed with lung cancer. Interviews were analyzed using traditional content analysis approaches. RESULTS: We identified 2 main themes: (1) tensions, differences, and mistrust between services occur in the least integrated teams and (2) open communication, sharing common goals, and promoting oncology "buy in" build trust and foster collaboration between teams. Clinicians described qualities important to possess to promote successful adoption of a nurse-led model of palliative care. CONCLUSIONS: Integration between oncology and palliative care among the 6 VA medical centers varies considerably. Nurses delivering palliative care embedded in oncology teams may facilitate the integration of these subspecialties.