OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region.
DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.
SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA.
PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.
RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death.
CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.
BACKGROUND: Historically, it has been assumed that the Emergency Department (ED) is a place for maximally aggressive care and that Emergency Medicine Providers (EMPs) are biased towards life-prolonging care. However, emphasis on early recognition of code status preferences is increasingly making the ED a venue for code status discussions (CSDs). In 2018, our hospital implemented a policy requiring EMPs to place a code status order (CSO) for all patients admitted through the ED. We hypothesized that if EMPs enter CSDs with a bias toward life-prolonging care, or if the venue of the ED biases CSDs towards life-prolonging care, then we would observe a decrease in the percentage of patients selecting DNR status following our institution's aforementioned CSO mandate.
METHODS: We present a retrospective analysis of rates of DNR orders placed for patients admitted through our ED comparing six-month periods before and after the implementation of the above policy.
RESULTS: Using quality improvement data, we identified patients admitted through the ED during pre (n=7,858) and post (n=8,069) study periods. We observed the following: after implementation DNR preference identified prior to hospital admission from the ED increased from 0.4% to 5.3% (relative risk (RR) 12.5; 95% CI: 5.2-29.9), defining CS in the ED setting at the time of admission increased from 2.4% to 98.6% (p <0.001), and DNR orders placed during inpatient admission was unchanged (RR=0.97 (95% CI = 0.88-1.07)).
DISCUSSION: Our results suggest that the ED can be an appropriate venue for CSDs.
Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice.
Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers’ well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients’ lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit. High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains. Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families.
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.
During the novel coronavirus disease 2019 (COVID-19) pandemic, it is particularly critical to ensure that life-sustaining treatment (LST) such as intubation and resource-intensive cardiopulmonary resuscitation (CPR) are aligned with a patient’s goals and values, and to avoid LSTs in patients with a poor prognosis that are unlikely to be beneficial, but have a high risk of causing additional suffering. The high volume and acuity of COVID-19 patients makes it extremely challenging for emergency department (ED) clinicians to take adequate time to clarify goals of care (GOC). We implemented an ED-based COVID-19 palliative care response team focused on providing high-quality GOC conversations in time-critical situations. We examined the clinical characteristics and outcomes of patients who received this intervention.
Methods: This retrospective observational study was conducted in the ED of an urban, quaternary care academic medical center in New York, New York. We included 110 patients for whom the palliative care team was consulted between March 27, 2020, and April 10, 2020, with follow-up through May 9, 2020. Columbia University institutional review board approved this study and waived the need for informed consent.
Emergency department clinicians consulted the palliative care team for assistance with any palliative care-related needs, including GOC clarification and cases where stated GOC did not align with expected prognosis. The palliative care team (1 attending physician who was board-certified in hospice and palliative medicine, 1 hospice/palliative medicine fellow clinician, and 4 psychiatry resident physicians and fellow clinicians, all trained in GOC conversations and supervised by the palliative care attending physician) was available in person 12 hours per day, and for phone consultation overnight and on weekends. The palliative care intervention focused on GOC conversations: conveying the prognosis in a clear and simple way, exploring patients’ goals and values, and making care recommendations based on elicited goals.1,2
Deidentified demographic data were collected from the medical record. Primary outcomes included GOC before and after palliative care intervention, as well as GOC on death or discharge. Secondary outcomes included clinical course and length of stay in the hospital
Goals of care were defined as “full code” (pursue all LSTs including intubation and CPR); “do-not-resuscitate (DNR) only” (pursue all LSTs excluding CPR); “DNR/do-not-intubate (DNI), continue medical treatment” (pursue all LSTs excluding intubation and CPR); and “comfort-directed care” (forgo LSTs, deliver symptom-focused treatment only). The GOC were presumed to be full code if no advance directives or medical orders for life-sustaining treatment (MOLST) were found on presentation to the ED.
Six patients were still hospitalized at the time of data review; they were excluded from the analysis for clinical course.
Results: The 110 patients were aged a median (range) of 81.5 (46-101) years and 61 (55.4%) were women. Patient demographic and clinical characteristics are reported in Table 1. Most patients were community-dwelling elderly persons (aged >75 years) with at least 2 comorbidities and lacked decision-making capacity at the time of presentation. Very few patients presented with documented advance directives or MOLST and therefore were presumed to be full code.
The primary outcomes are summarized in Table 2. After initial palliative care intervention, the number of full code decreased from 91 patients (82.7%) to 20 patients (18.2%). Among these 71 patients (64.5%) in whom CPR was declined, mechanical ventilation was also declined in 61 patients (55.5%) (ie, 32 patients in DNR/DNI, continue medical treatment, 29 patients in comfort-directed care). On discharge, the number of full code further decreased to 9 patients (8.6%), whereas comfort-directed care increased to 54 patients (51.9%). The median (range) length of stay was 4 (0-28) days and 71 patients (68.2%) died in the hospital. Among 33 patients (31.7%) who were discharged alive, 6 patients (5.8%) were discharged with hospice care.
Discussion: The included patients’ demographic characteristics were consistent with those of critically ill patients with COVID-19 previously reported and with those of patients reported to be at highest risk of death from COVID-19. Patients without advance care planning conversations are known to be at risk of receiving unwanted, high-intensity, lower-quality care,5 even though many seriously ill patients do not prefer LSTs at the end of life.6
The most important finding in this study was, after palliative care intervention in the ED, most patients and their surrogates opted to forgo mechanical ventilation and/or CPR, and that tendency further increased on discharge. We believe timely GOC conversations by the palliative care team helped avoid unwanted LSTs for patients with a poor prognosis. Study limitations include potentially limited generalizability given the retrospective design at a single institution. Also, palliative care consultation was initiated by ED clinicians, which may have led to selection bias, though a high rate of altered GOC after intervention suggests significant, unaddressed need in the outlying population.
Purpose: The USA has observed a significant increase in the use of palliative care for patients diagnosed with advanced cancer. However, it is unknown how geographic variation affects patients’ use of palliative care services. We examined temporal and demographic trends in receipt of and timing of palliative care by state and region.
Methods: A retrospective cohort study of the Surveillance, Epidemiology, and End Results (SEER)-Medicare database. Study sample included community-dwelling patients aged = 65 years with metastatic lung cancer who were diagnosed between 2001 and 2015. Cochran-Armitage trend test was used to evaluate temporal trends in receipt of and timing of palliative care by states and census region.
Results: The proportion of metastatic lung cancer patients who received palliative care ranged from 16.4% in Washington and 16.3% in Connecticut to 6.4% in Louisiana. From 2001 to 2015, use of palliative care increased from 3.2 to 29.8% in the West region, from 3.3 to 31.9% in the Northeast region, from 3.8 to 36.2% in the Midwest region, and from 0.9 to 23.3% in the South region (all P < 0.001). The median time from the date of cancer diagnosis to the date of first palliative care visit varied geographically, from 44 days in Utah to 66 days in California. Hospital-based palliative care was most common in these states.
Conclusion: The substantial geographic variation in the use of palliative care suggesting a need for additional research on geographic disparities in palliative care and strategies that might improve state-level palliative care delivery.
Objectives: Advance care planning (ACP) typically comprises formal preparations (i.e., living will and/or durable power of attorney for health care) and informal discussions with family members and health care providers. However, some people complete formal documents without discussing them with others. If they become incapacitated, their appointed decision makers may lack guidance on how to interpret or enact their formal wishes. We document the prevalence and correlates of this partial approach to ACP.
Method: Using multinomial logistic regression models and data from a U.S. sample of 4,836 older adults in the 2018 wave of the National Health and Aging Trends Study (NHATS), this brief report evaluated associations between social integration indicators and the odds of completing (a) both discussions and formal plans (two-pronged ACP), (b) discussions only, (c) no ACP, and (d) formal ACP only (reference category). We adjust for demographic and health characteristics established as correlates of ACP.
Results: A minority (15%) of NHATS participants reported formal plans without having discussed them. Indicators of social isolation (e.g., smaller social networks and fewer social activities) increased the odds of engaging in formal planning only compared to two-pronged ACP. Socioeconomic disadvantage and probable dementia reduced the odds of having end-of-life conversations, whether as one’s only preparation or in tandem with formal preparations.
Discussion: Socially isolated persons are especially likely to do formal planning only, which is considered less effective than two-pronged ACP. Health care professionals should recognize that older adults with few kin may require additional support and guidance when doing ACP.
The coronavirus disease 2019 surge in New York City created an increased demand for palliative care (PC) services. In staff-limited settings such as safety net systems, and amid growing reports of health care worker illness, leveraging help from less-affected areas around the country may provide an untapped source of support. A national social media outreach effort recruited 413 telepalliative medicine volunteers (TPMVs). After expedited credentialing and onboarding of 67 TPMVs, a two-week pilot was initiated in partnership with five public health hospitals without any previous existing telehealth structure. The volunteers completed 109 PC consults in the pilot period. Survey feedback from TPMVs and on-site PC providers was largely positive, with areas of improvement identified around electronic health record navigation and continuity of care. This was a successful, proof of concept, and quality improvement initiative leveraging TPMVs from across the nation for a PC pandemic response in a safety net system.
Background: The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications.
Methods: A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O’Malley’s methodological framework was followed for scoping reviews.
Results: Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs.
Conclusion: A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.
Background: The role of neuroleptics for terminal agitated delirium is controversial. We assessed the effect of three neuroleptic strategies on refractory agitation in patients with cancer with terminal delirium.
Methods: In this single-centre, double-blind, parallel-group, randomised trial, patients with advanced cancer, aged at least 18 years, admitted to the palliative and supportive care unit at the University of Texas MD Anderson Cancer Center (Houston, TX, USA), with refractory agitation, despite low-dose haloperidol, were randomly assigned to receive intravenous haloperidol dose escalation at 2 mg every 4 h, neuroleptic rotation with chlorpromazine at 25 mg every 4 h, or combined haloperidol at 1 mg and chlorpromazine at 12·5 mg every 4 h, until death or discharge. Rescue doses identical to the scheduled doses were administered at inception, and then hourly as needed. Permuted block randomisation (block size six; 1:1:1) was done, stratified by baseline Richmond Agitation Sedation Scale (RASS) scores. Research staff, clinicians, patients, and caregivers were masked to group assignment. The primary outcome was change in RASS score from time 0 to 24 h. Comparisons among group were done by modified intention-to-treat analysis. This completed study is registered with ClinicalTrials.gov, NCT03021486.
Findings: Between July 5, 2017, and July 1, 2019, 998 patients were screened for eligibility, with 68 being enrolled and randomly assigned to treatment; 45 received the masked study interventions (escalation n=15, rotation n=16, combination n=14). RASS score decreased significantly within 30 min and remained low at 24 h in the escalation group (n=10, mean RASS score change between 0 h and 24 h -3·6 [95% CI -5·0 to -2·2]), rotation group (n=11, -3·3 [–4·4 to -2·2]), and combination group (n=10, -3·0 [–4·6 to -1·4]), with no difference among groups (p=0·71). The most common serious toxicity was hypotension (escalation n=6 [40%], rotation n=5 [31%], combination n=3 [21%]); there were no treatment-related deaths.
Interpretation: Our data provide preliminary evidence that the three strategies of neuroleptics might reduce agitation in patients with terminal agitation. These findings are in the context of the single-centre design, small sample size, and lack of a placebo-only group.
Funding: National Institute of Nursing Research.
Background: more than 90 million Americans are struggling to live with serious illness and are in need of palliative and end-of-life care. Yet, many novice RNs have not been adequately prepared during their undergraduate programs to care for them.
Method: A large southwestern Magnet comprehensive cancer center piloted integrating the End-of-Life Nursing Education Consortium (ELNEC)-Undergraduate Curriculum into their nurse residency program during 2018 with 55 new RNs.
Results: A pre-and posteducation evaluation questionnaire measured comfort with caring for patients with serious illness, competence, and knowledge in six areas of palliative care. All eight evaluation questions demonstrated statistically significant improvement posteducational intervention. Many nurse residents reported a change in clinical practice 1 month posteducation.
Conclusion: The nurse residency is an opportune training time to prepare novice nurses to provide primary palliative care for all patients with serious illness and their families.
In light of the COVID-19 pandemic, many healthcare systems are experiencing an increased demand for palliative care (PC). To meet this challenge, the PC team at Cleveland Clinic designed an enterprise-wide response plan organized around 4 domains: staff (educational resources and tools), stuff (medications and supplies), space (recommendations for optimizing physical space and facilities), and systems to facilitate high-quality PC delivery to patients. To mitigate isolation during end-of-life care, the Clinic offers “compassionate exceptions” to strict visitation policies, provides personal protective equipment to visitors of these patients, and facilitates virtual visitation via electronic devices.
Objective: To test the effectiveness of theoretically driven role model video stories in improving knowledge of palliative care among a diverse sample of older adults.
Method: We developed three 3–4 min long theoretically driven role model video stories. We then recruited cognitively intact, English-speaking adults aged 50 and older from senior centers, assisted living, and other community-based sites in the greater Los Angeles area. Using a pretest–posttest study design, we surveyed participants using the 13-item Palliative Care Knowledge Scale (PaCKS) and also asked participants about their intentions to enroll in palliative care should the need arise. Participants first completed the pretest, viewed the three videos, then completed the posttest comprised of the same set of questions.
Results: PaCKS score improved from an average of 4.5 at baseline to 10.0 following video screening (t(126) = 12.0, p < 0.001). Intentions to enroll oneself or a family member in palliative care rose by 103% ( 2 = 7.8, p < 0.01) and 110% ( 2 = 7.5, p < 0.01), respectively. Regression analysis revealed that participants who believed the role models are real people (ß = 2.6, SE = 1.2, p < 0.05) significantly predicted higher change in PaCKS score. Conversely, participants with prior knowledge of, or experience with, palliative care (ß = -5.9, SE = 0.8, p < 0.001), non-whites (ß = -3.6, SE = 0.9, p < 0.001), and widows (ß = -2.9, SE = 1.1, p < 0.01) significantly predicted lower changes in PaCKS score.
Significance of results: This study suggests that theoretically driven role model video stories may be an effective strategy to improve palliative care knowledge. Role model video stories of diverse palliative care patients provide one way to mitigate health literacy barriers to palliative care knowledge.
Background: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC).
Methods: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher’s exact tests, likelihood ratios and the Kruskal–Wallis test were used to assess differences between the two cohorts.
Results: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p = 0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p = 1).
Conclusions: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.
Background: On-line tutorials are being increasingly used in medical education, including in teaching housestaff skills regarding end of life care. Recently an on-line tutorial incorporating interactive clinical vignettes and communication skills was used to prepare housestaff at Johns Hopkins Hospital to use the Maryland Orders for Life Sustaining Treatment (MOLST) form, which documents patient preferences regarding end of life care. 40% of housestaff who viewed the module felt less than comfortable discussing choices on the MOLST with patients. We sought to understand factors beyond knowledge that contributed to housestaff discomfort in MOLST discussions despite successfully completing an on-line tutorial.
Methods: We conducted semi-structured telephone interviews with 18 housestaff who completed the on-line MOLST training module. Housestaff participants demonstrated good knowledge of legal and regulatory issues related to the MOLST compared to their peers, but reported feeling less than comfortable discussing the MOLST with patients. Transcripts of interviews were coded using thematic analysis to describe barriers to using the MOLST and suggestions for improving housestaff education about end of life care discussions.
Results: Qualitative analysis showed three major factors contributing to lack of housestaff comfort completing the MOLST form:  physician barriers to completion of the MOLST,  perceived patient barriers to completion of the MOLST, and  design characteristics of the MOLST form. Housestaff recommended a number of adaptations for improvement, including in-person training to improve their skills conducting conversations regarding end of life preferences with patients.
Conclusions: Some housestaff who scored highly on knowledge tests after completing a formal on-line curriculum on the MOLST form reported barriers to using a mandated form despite receiving training. On-line modules may be insufficient for teaching communication skills to housestaff. Additional training opportunities including in-person training mechanisms should be incorporated into housestaff communication skills training related to end of life care.
Context: During the course of March and April 2020, New York City experienced a surge of a 170,000 coronavirus disease 2019 (COVID-19) cases, overwhelming hospital systems and leading to an unprecedented need for palliative care services.
Objectives: to present a model for rapid palliative care workforce expansion under crisis conditions, using supervised advanced psychiatry trainees to provide primary palliative services in the acute care and emergency setting.
Methods: In response to the New York City COVID-19 surge, advanced psychiatry trainees at New York-Presbyterian Columbia University Irving Medical Center were rapidly trained and redeployed to a newly formed psychiatry-palliative care liaison team. Under the supervision of consultation-liaison psychiatrists (who also served as team coordinators), these trainees provided circumscribed palliative care services to patients and/or their families, including goals-of-care discussions and psychosocial support. Palliative care attendings remained available to all team members for more advanced and specialized supervision.
Results: The psychiatry-palliative care liaison team effectively provided palliative care services during the early phase and peak of New York City's COVID-19 crisis, managing up to 16 new cases per day and provided longitudinal follow-up, thereby enabling palliative care specialists to focus on providing services requiring specialist-level palliative care expertise.
Conclusion: by training and supervising psychiatrists and advanced psychiatry trainees in specific palliative care roles, palliative care teams could more effectively meet markedly increased service needs of varying complexity during the COVID-19 crisis. As new geographic regions experience possible COVID-19 surges in the coming months, this may serve as a model for rapidly increasing palliative care workforce.
In this personal reflection, as a Family Medicine resident at an Academic Center in Northeast Florida, as well as being a chronic illness patient myself, I explore the notion of dying alone and away from family. Although COVID-19 has changed the practice of medicine in many ways, prior to that, and before the instillation of hospital no-visitor policies and stay at home orders, I experienced a case of a patient dying alone in the hospital. These chronicles that case and the impact it had on me afterward in regard to my own family and how I hope the future of medicine can address this.
Background: Very few studies have investigated the racial differences in do-not-resuscitate (DNR) orders in children, and these studies are limited to oncological cases. We aim to characterize the racial difference in DNR orders among U.S. pediatric surgical patients.
Methods: We retrospectively evaluated the mortality of all children who underwent an inpatient surgery between 2012 and 2017 from the National Surgical Quality Improvement Program. We used log-binomial models to estimate the relative risk (RR) and 95% confidence interval (CI) of DNR use comparing white with African American (AA) children. To estimate the risk-adjusted difference in DNR orders, we controlled the analyses for age, prematurity status, emergent case status, American Society of Anesthesiologists class, year of operation, surgical specialty, and surgical complexity.
Results: Between 2012 and 2017, a total of 276,917 children underwent inpatient surgery, of whom 0.8% (n = 1601) died within 30 days of operation. Of the 1601 mortality cases, we retained 1212 children who were of either AA (26.0%, n = 350) or white (63.9%, n = 862) race. Most children were neonates, had an American Society of Anesthesiologists class =4 (70.0%, n = 811), and developed one or more postoperative complications (68.7%, n = 833). Overall, AA children were more likely to be neonates at the time of surgery (42.0% vs. 40.3%, p < 0.001), to be premature (66.3% vs. 49.0%, p < 0.001), and develop one or more postoperative complications (73.7% vs. 66.7%, p = 0.017). White children were three times more likely to have a DNR order than their AA peers (adjusted RR: 3.01, 95% CI: 1.09–8.56, p = 0.044).
Conclusion: Among pediatric surgical patients in the United States, children of white race were three times more likely to have a DNR order in place than their AA peers despite the latter being “sicker” and more likely to develop postoperative complications. The mechanisms underlying this racial difference deserve further elucidation to improve shared decision making and goal-concordant care.