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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.

ObjectiveThe 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?DesignInductive thematic analysis of semi-structured interviews.SettingClinical settings across the USA in April and May of 2020.ParticipantsClinicians with leadership and/or clinical roles during the COVID-19 pandemic.MeasuresEmergent themes related to professional roles and relationships.ResultsSixty-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.ConclusionsClinicians 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.

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.

BackgroundUnderstanding ethical concerns that arise in the care of patients with advanced kidney disease may help identify opportunities to support medical decision-making.ObjectiveTo describe the clinical contexts and types of ethical concerns that arise in the care of patients with advanced kidney disease.DesignRetrospective cohort study.ParticipantsA total of 28,568 Veterans with advanced kidney disease between 2000 and 2009 followed through death or 2011.ExposureClinical scenarios that prompted clinicians to consider an ethics consultation as documented in the medical record.Main MeasuresDialysis initiation, dialysis discontinuation, receipt of an intensive procedure during the final month of life, and hospice enrollment.Key ResultsPatients 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.ConclusionsClinicians 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 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. OBJECTIVE 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). DESIGN Semi-structured interviews analyzed using content analysis. PARTICIPANTS 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. APPROACH 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. RESULTS 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. CONCLUSIONS 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.

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. 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. 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. 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. 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. 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. 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.

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.

Objective: This study evaluated pulse oximetry screening (POS) for critical congenital heart disease (CCHD) in planned out of hospital births with special attention to births in Plain communities (Amish, Mennonite and similar). Study Design: Wisconsin out of hospital births in 2013 and 2014 were evaluated. Care providers were supplied with and trained in the use of pulse oximeters for CCHD screening. State records were reviewed to identify deaths and hospital admissions due to CCHD in this population. Results: Detailed information on POS was available in 1616 planned out of hospital births. Seven hundred and ninety-nine were from the Plain community. In total, 1584 babies (98%) passed their POS, 16 infants (1%) failed and 16 (1%) were not screened. Five infants from the Plain community had CCHD and three were detected by POS. Conclusion: POS for CCHD can be successfully implemented outside the hospital setting and plays a particularly important role in communities with high rates of CCHD and where formal prenatal screening is uncommon.