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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.

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.

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.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).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.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.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.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.

ImportancePatients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values.ObjectiveTo evaluate the association of patients’ health care values with engagement in advance care planning and end-of-life care.Design, Setting, and ParticipantsSurvey 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.ExposuresA 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 MeasuresSelf-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims.ResultsOf 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 P P P P 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 RelevanceThis 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.

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.

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

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.

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.

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.

This survey study explores the advance care planning choices among adults receiving maintenance dialysis who hold religious or spiritual beliefs., Key Points Question Is there an association between the self-reported importance of religious or spiritual beliefs and serious illness preferences among people who receive dialysis? Findings In this cross-sectional survey study of 937 patients receiving dialysis, most participants indicated that their religious or spiritual beliefs were behind their whole approach to life. Those for whom these beliefs were more important were more likely to favor resuscitation and a shared (vs patient-centered) decision-making role and less likely to have ever thought or spoken about stopping dialysis. Meaning These findings highlight the importance of religious or spiritual beliefs and the potential value of an integrative approach that includes spiritual care for people who receive 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.

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?" ( 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

Palliative care research has focused on patients with disease-specific conditions. However, older patients with multimorbidity may have unmet palliative care needs.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.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.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%, P0.0001) were more likely to be addressed than psychological symptoms (55%, P0.001). Patients diagnosed with obesity or depression experienced greater physical symptom burden. Younger patients reported greater symptom severity than older patients (P0.01). 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 P0.01, respectively).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.

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

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.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.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.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.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.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.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.

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.

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

Comments on the original article by Rolland, Emanuel, and Torke (see record 2017-05300-001) regarding a family systems approach to medical decision-making by proxy. The authors expanded the focus of clinicians beyond the patient to a more comprehensive understanding of the patient's family. They assert that a better understanding of family dynamics may help clinicians to engage with families more effectively when decision-making is needed for seriously ill loved ones, and may lessen the emotional challenges families and clinicians face when decisions are needed. However, the current authors point out surrogate decision-making can be an onerous responsibility. Rolland, Emanuel, and Torke identify the growing body of research on the high prevalence of posttraumatic stress disorder, anxiety, and depression among those who have been in the position of making medical decisions for loved ones. (PsycINFO Database Record

Maintaining professional boundaries enables clinicians to keep their patients' best interests in mind. Palliative care clinicians may be at risk for professional boundary crossings because of the intimate nature of caring for people with life-threatening illnesses. In some instances, boundary crossings can be beneficial to the patient, but must be considered thoughtfully and with trusted others. We describe the case of a primary care physician and clinic nurse who were asked by a long-time clinic patient, who was now terminally ill, to join him for a steak dinner. We discuss the approach that the physician and nurse took in deciding about whether the boundary crossing was ethically permissible. We also offer sample questions for palliative care clinicians to consider when thinking about their actions.

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

Classic trajectories of illness at end of life (EOL) suggest different care needs for patients with cancer versus chronic obstructive pulmonary disease (COPD) and may lead to different experiences of transitions over the course of a life-limiting illness. Patients may experience transitions in different ways than clinicians. No prior studies have examined this issue from patients', families', and clinicians' perspectives.We sought to explore transitions, defined as experiences that patients and family members viewed as milestones in the evolution of their illnesses and therapies, and compare these perceptions with the perspectives of the patient's physician and nurse to provide insights about communication concerning EOL care.We conducted a qualitative study using grounded theory to examine participants' perspectives on the experiences of key transitions in the context of living with advanced COPD or cancer. In-depth interviews with patients, family members, nurses, and physicians were conducted by experienced interviewers.Six themes were identified regarding participants' experiences with transitions. Themes that defined transitions among both patients with COPD and those with cancer included: new or different treatments and no more treatments available. Themes unique to patients with COPD were activity limitations due to functional decline and initiation of oxygen therapy. One theme unique to clinicians was acute exacerbation of illness or hospitalization.This study identified differences in the meaning of transitions for patients versus clinicians and for patients with COPD versus those with cancer. These findings may offer clinicians the opportunity to provide a more patient-centered approach to communication about end-of-life care by acknowledging and addressing transitions in palliative care from the perspective of the patient and family.

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

OBJECTIVES: To characterize how surrogates plan to make medical decisions for others. DESIGN: Descriptive study using semistructured qualitative interviews. SETTING: Surrogates were interviewed by telephone from their homes. PARTICIPANTS: Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans. MEASUREMENTS: Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making. RESULTS: Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones' advance care directives), (3) shared experience (believing an “inner sense” would guide decisions because of shared lived experience with loved ones), (4) surrogates' own values and preferences about life, and (5) surrogates' network (enlisting the help of others). CONCLUSION: Although ethicists and clinicians expect surrogates to use substituted judgment or patients' best interests when making decisions, these data indicate that many surrogates rely on other factors such as their own best interests or mutual interests of themselves and the patient or intend to base substituted judgments on documents with which they have little familiarity.

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Qf the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.

Over the last 10–15 years, there has been a pervasive trend toward initiation of chronic dialysis at higher levels of estimated GFR (eGFR) across a range of different patient groups and practice settings ([1][1]–[5][2]). This finding seems to suggest that on average patients are now initiating

Objectives: To characterize the experience of quality of life while dying from the perspective of terminally ill men. Design: Descriptive study involving semistructured interviews. Setting: Patients attending clinics at two university-affiliated medical centers were interviewed in a private conference room or in their homes. Participants: Twenty-six men identified by their physicians as having terminal heart disease or cancer. Eligible participants acknowledged that they had serious illness. Measurements: The interview contained open-ended questions such as: “What are the most important things in your life right now?” The interview also contained closed-ended questions about symptom intensity, presence of depressed mood, and other items related to overall quality of life. The open-ended questions were tape-recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. Results: Participants believed that death was near. Participants saw engaging in hobbies and other enjoyable activities as an alternative to moving into the final stage of illness, in which they saw themselves as actively dying. They admitted to occasionally ignoring prescribed diets; these actions improved their overall quality of life but worsened symptoms. New symptoms brought concerns about progression to active dying. They anticipated what their dying would be like and how it would affect others. Participants believed that their actions in the present could improve the quality of their dying and lessen the burden of their deaths on others. Many participants therefore were preparing for death by engaging in such tasks as putting their finances in order and planning their funerals, to relieve anticipated burden on loved ones. Conclusion: To help terminally ill patients plan for the end of life, clinicians are encouraged to become familiar with their patients' experiences of living with terminal illness, to identify each patient's unique priorities, and to incorporate that information into care plans aimed at maximizing quality of life at the end of life.

Recent studies have shown that lead, even at relatively low levels of exposure, has the potential to harm not only the young and the occupationally-exposed, but also older people. Because they have been alive for a longer period of time, older adults have had more potential exposures to lead. They may have been exposed to lead while working in unregulated occupations, or they may have encountered more lead in the environment on a daily basis. Several large epidemiological studies have found that older people have higher blood and bone lead levels than younger adults. Additionally, sporadic clusters of acute lead exposure among older adults as a result of activities such as ceramic glaze hobby work and consumption of moonshine whiskey continue to be reported. After lead enters the body, it circulates in the blood reaching the soft tissues and bone. Researchers have learned that lead can hibernate within bone for decades. Although lead within bone is of uncertain toxicity to bone tissue, conditions of bone resorption, such as osteoporosis, can cause bone lead to reenter the bloodstream where it can then re-expose the soft tissue, and, potentially, exert delayed deleterious effects. Evidence is emerging that blood and bone lead levels, reflecting relatively modest exposures, are associated with hypertension, renal insufficiency, and cognitive impairment. Medical treatments that now exist to slow the rate of bone resorption may maintain lead within bones. On-going studies evaluating the relationship between body lead stores and both cognitive and renal impairment, as well as the potential modifying effect of bone resorption, will help determine whether bone resorption should be retarded specifically to preserve organ function. Physicians should be aware of potential past and present lead exposures among their older patients. Ongoing lead exposure should be prevented. In the future, treatment of osteoporosis may be undertaken not only to improve bone health but also to prevent mobilization of bone lead stores and subsequent toxicity.

to your core values. Although moral distress has been studied most in nursing, it has been documented in numerous healthcare professions and in healthcare managers. Palliative care and hospice providers may personally experience moral distress, and also may interact with colleagues who are experiencing it. “Untreated” moral distress can lead to burnout, to individuals leaving their positions, and even to individuals leaving their professions. This can be psychologically costly for individuals and financially costly for institutions. Members of the palliative care team may be able to recognize moral distress in themselves and their colleagues, and then may help institute interventions to prevent its adverse outcomes.

The prevalence of chronic kidney disease (CKD), defined as kidney damage present for at least three months, is highest in older ages. The elderly population is the fastest growing segment of the population developing end-stage renal disease (ESRD). In the 75 years and older age group, the adjusted incidence rate and the adjusted prevalence rate of ESRD have grown by 12.2% and 44%, respectively, from 2000 to 2012. More older patients are starting dialysis, but we also know that elderly patients with advanced CKD and ESRD are more likely to have greater disability, morbidity, and worse survival compared with older patients with less advanced kidney disease. We discuss the decision to initiate renal replacement therapy (RRT) in frail elderly patients with advanced CKD and ESRD. We also highlight the importance of discussing prognosis, dialysis modalities and their alternatives, functional status, and symptoms in the unique context of each patient’s values, goals, and care preferences. Ideally, managing advanced CKD should be viewed more as an evolving conversation than a discrete decision about dialysis initiation.

Importance There is often considerable uncertainty about the optimal time to initiate maintenance dialysis in individual patients and little medical evidence to guide this decision. Objective To gain a better understanding of the factors influencing the timing of initiation of dialysis in clinical practice. Design, Setting, and Participants A qualitative analysis was conducted using the electronic medical records from the Department of Veterans Affairs (VA) of a national random sample of 1691 patients for whom the decision to initiate maintenance dialysis occurred in the VA between January 1, 2000, and December 31, 2009. Data analysis took place from June 1 to November 30, 2014. Main Outcomes and Measures Central themes related to the timing of initiation of dialysis as documented in patients’ electronic medical records. Results Of the 1691 patients, 1264 (74.7%) initiated dialysis as inpatients and 1228 (72.6%) initiated dialysis with a hemodialysis catheter. Cohort members met with a nephrologist during an outpatient clinic visit a median of 3 times (interquartile range, 0-6) in the year prior to initiation of dialysis. The mean (SD) estimated glomerular filtration rate at the time of initiation for cohort members was 10.4 (5.7) mL/min/1.73 m 2 . The timing of initiation of dialysis reflected the complex interplay of at least 3 interrelated and dynamic processes. The first was physician practices, which ranged from practices intended to prepare patients for dialysis to those intended to forestall the need for dialysis by managing the signs and symptoms of uremia with medical interventions. The second process was sources of momentum. Initiation of dialysis was often precipitated by clinical events involving acute illness or medical procedures. In these settings, the imperative to treat often seemed to override patient choice. The third process was patient-physician dynamics. Interactions between patients and physicians were sometimes adversarial, and physician recommendations to initiate dialysis sometimes seemed to conflict with patient priorities. Conclusions and Relevance The initiation of maintenance dialysis reflects the care practices of individual physicians, sources of momentum for initiation of dialysis, interactions between patients and physicians, and the complex interplay of these dynamic processes over time. Our findings suggest opportunities to improve communication between patients and physicians and to better align these processes with patients’ values, goals, and preferences.

Objectives: To evaluate exclusion of persons with cognitive impairment from research in geriatrics by determining its frequency, method, and rationale and treatment in the resulting publications. Design: All original research articles published in 2008 and 2009 in the Journal of the American Geriatrics Society (n = 434) were reviewed using a structured data collection tool. Setting: The Journal of the American Geriatrics Society. Participants: There were no participants in this study. Measurements: Data captured included recruitment method, explicit criterion for exclusion of persons with cognitive impairment, justification of exclusion criterion, reason given for exclusion, percentage of individuals excluded, and mention of exclusion as a possible limitation. Results: Of 434 articles examined, 16% used recruitment methods likely to reduce participation by persons with cognitive impairment. At least 29% of studies (n = 127) employed explicit exclusion criteria. Half used the Folstein Mini-Mental State Examination (MMSE), with variable cut points (10, 12, 17, 18, 23, 26), and 19% excluded individuals for �having dementia� without specifying how this was determined. Few (6%) provided any justification for exclusion criteria used, only 43% gave any reason for exclusion, and only 14% discussed exclusion as a possible limitation. Conclusion: Persons with cognitive impairment are frequently excluded from research, often without rationale or mention of exclusion as a limitation or any discussion of its potential effect on the evidence base in geriatrics. When necessary, exclusion should be done thoughtfully and with awareness that this may reduce the clinical utility of study findings.

Clinicians may feel conflicted when a patient's legal decision maker is making decisions that seem inconsistent with a patient's living will. We provide evidence-based information to help clinicians consider whether a surrogate's inconsistent decisions are ethically appropriate. Surrogates are not flawless translators of their loved one's preferences; they are influenced by their own hopes and the current clinical context. Patients may be aware of this, are often concerned about burdening their loved ones, and often grant their surrogates leeway in interpreting their wishes. When appropriate, clinicians should respect surrogates' interpretations of patient values and take steps to decrease surrogate stress during the decision-making process. Finally, if clinicians are cognizant of their own values and preferences, they may recognize how these may affect their responses to certain clinical cases.

To characterize how surrogates plan to make medical decisions for others.Descriptive study using semistructured qualitative interviews.Surrogates were interviewed by telephone from their homes.Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans.Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making.Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones' advance care directives), (3) shared experience (believing an "inner sense" would guide decisions because of shared lived experience with loved ones), (4) surrogates' own values and preferences about life, and (5) surrogates' network (enlisting the help of others).Although ethicists and clinicians expect surrogates to use substituted judgment or patients' best interests when making decisions, these data indicate that many surrogates rely on other factors such as their own best interests or mutual interests of themselves and the patient or intend to base substituted judgments on documents with which they have little familiarity.

OBJECTIVES: Patient involvement in decision-making has been advocated to improve the quality of life at the end of life. Although the size of the oldest segment of the population is growing, with greater numbers of older adults facing the end of life, little is known about their preferences for the end of life. This study aimed to explore the attitudes of older adults with medical illness about the end of life, and to investigate whether current values could be extended to end-of-life preferences. DESIGN: Descriptive study with interviews using open- and closed-ended questions. SETTING: Patients attending two university-affiliated geriatric clinics were interviewed in a private conference room near the clinic they attended or in their homes. PARTICIPANTS: Sixteen older men and women identified by their physicians as having nonterminal heart disease or cancer. MEASUREMENTS: The interview contained open-ended questions such as: “What are the most important things in your life right now?” and “What would you consider a good/bad death?” The interview also contained closed-ended questions about symptoms, quality of life, and health status. Additional questions elicited preferences for the end of life, such as location of death and the presence of others. The open-ended questions were tape-recorded, transcribed, and analyzed using qualitative methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: Patients with heart disease and cancer provided similar responses. Participants' views about good deaths, bad deaths, and end-of-life scenarios were heterogeneous. Each participant voiced a unique combination of themes in describing good and bad deaths. Because each participant described a multifaceted view of a good death, for instance, no theme was mentioned by even half of the participants. Participants provided differing explanations for why given themes contributed to good deaths. Currently valued aspects of life were not easily translated into end-of-life preferences. For example, although the majority of participants identified their family as being important, many gave reasons why they did not want their family members present when they died. CONCLUSIONS: Because of the heterogeneity of views and the difficulty in inferring end-of-life preferences from current values, older adults should be asked not only questions about general values, but also specific questions about their end-of-life choices and the reasons for these choices. A thorough understanding of an individual's end-of-life preferences may help health professionals working with older adults develop patient-centered care plans for the end of life.

Blue rubber bleb nevus syndrome (BRBNS), an uncommon disorder characterized by cavernous hemangiomas, most often of the skin and gastrointestinal tract, is usually diagnosed during childhood and young adulthood. We made this diagnosis in an octogenarian referred to a geriatric medicine clinic because of concerns about his ability to live independently. Ataxia, dementia, focal neurologic signs, and bluish/purplish vascular nodules on his lips, buccal mucosa, tongue, chest, and neck were noted on physical examination. Magnetic resonance imaging (MRI) revealed an old left parietal infarction, multiple cavernous hemangiomas most densely concentrated in the subcortical structures and cerebellum, and areas of hemosiderin deposition. Skin biopsy findings were consistent with hemangioma. The physical examination, MRI, and skin biopsy made a diagnosis of BRBNS likely. The patient's ataxia, dementia, and other neurologic signs can be explained by previous hemorrhage from the vascular malformations in his brain. Blue rubber bleb nevus syndrome is an uncommon cause of a relatively common geriatric syndrome presentation. (J Geriatr Psychiatry Neurol 2002; 15:7-11).

Background Surveys and anecdotes suggest that patients and family members sometimes feel abandoned by their physicians at the transition to end-of-life care. To our knowledge, no prior studies describe abandonment prospectively. Methods We conducted a longitudinal, qualitative study of patients, family caregivers, physicians, and nurses using a community-based sample. Using a purposive strategy, we recruited 31 physicians who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses. Eligible patients met the prognostic criterion that their physician “would not be surprised” if death occurred within a year. Qualitative, semistructured interviews were performed at enrollment, 4 to 6 months, and 12 months and were audiotaped, transcribed, and coded by an interdisciplinary team. When asked to talk about hope and prognostic information, participants spontaneously raised concerns about abandonment, and we incorporated this topic into our interview guide. Results Two themes were identified: before death, abandonment worries related to loss of continuity between patient and physician; at the time of death or after, feelings of abandonment resulted from lack of closure for patients and families. Physicians reported lack of closure but did not discuss this as abandonment. Conclusions The professional value of nonabandonment at the end of life consists of 2 different elements: (1) providing continuity, of both expertise and the patient-physician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care.

Background Understanding the range of patients' views about good and bad deaths may be useful to clinicians caring for terminally ill patients. Our current understanding of good and bad deaths, however, comes primarily from input from families and clinicians. This study aimed to learn how terminally ill men conceptualize good and bad deaths. Methods We conducted semistructured interviews with 26 men identified as having terminal heart disease or cancer. Participants described good and bad deaths in a section of open-ended questions. Participants also answered closed-ended questions about specific end-of-life scenarios. The open-ended questions were tape recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. Results We found heterogeneity in responses to questions about good deaths, bad deaths, and preferred dying experiences. Participants voiced multiple reasons for why dying in one's sleep led to a good death and why prolonged dying or suffering led to a bad death. Participants did not hold uniform views about the presence of others at the very end of life or preferred location of dying. Conclusions In discussing the end of life with terminally ill patients, clinicians may want to identify not only their patients' views of good and bad deaths but also how the identified attributes contribute to a good or bad death. The discussion can then focus on what might interfere with patients' attainment of their preferred dying experience and what may be available to help them achieve a death that is most consistent with their wishes.