
==== Front
Lancet Reg Health Am
Lancet Reg Health Am
Lancet Regional Health - Americas
2667-193X
Elsevier

S2667-193X(24)00200-X
10.1016/j.lana.2024.100873
100873
Review
A scoping review of end-of-life discussions and palliative care: implications for neurological intensive care among Latinos in the U.S.
Diaz Monica M. a
Guareña Lesley A. b
Garcia Bettsie a
Alarcon-Ruiz Christoper A. cd
Seal Stella M. e
Rubinos Clio a
Cruz-Oliver Dulce M. f
Carhuapoma J. Ricardo jcarhua1@jhmi.edu
g∗
a Department of Neurology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA
b Department of Psychology, University of Arizona, Tucson, AZ, USA
c Instituto Nacional de Ciencias Neurológicas, Lima, Peru
d Unidad de Investigación para la Generación y Síntesis de Evidencias en Salud, Universidad San Ignacio de Loyola, Lima, Peru
e Welch Medical Library, Johns Hopkins University, Baltimore, MD, USA
f Department of Medicine, Division of General Internal Medicine, Section of Palliative Care, Johns Hopkins University, Baltimore, MD, USA
g Departments of Neurology, Neurosurgery and Anesthesiology & Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
∗ Corresponding author. The Johns Hopkins Hospital, 600 N. Wolfe Street / Phipps 455, Baltimore, MD 21287, USA. jcarhua1@jhmi.edu
24 8 2024
10 2024
24 8 2024
38 10087321 4 2024
8 8 2024
9 8 2024
© 2024 The Author(s)
2024
https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article under the CC BY-NC license (http://creativecommons.org/licenses/by-nc/4.0/).
Summary

Goals of care (Goals-of-care) discussions and palliative care (PC) are crucial to providing comprehensive healthcare, particularly for acute neurological conditions requiring admission to a neurological intensive care unit. We identified gaps in the literature and describe insight for future research on end-of-life discussions and PC for U.S. Latinos with acute neurological conditions. We searched 10 databases including peer-reviewed abstracts and manuscripts of hospitalized U.S. Latinos with acute neurological and non-neurological conditions. We included 44 of 3231 publications and identified various themes: PC utilization, pre-established advanced directives in Goals-of-care discussions, Goals-of-care discussion outcomes, tracheostomy or percutaneous gastrostomy tube placement rates among hospitalized Latinos. Our review highlights that Latinos appear to have lower palliative care utilization compared with non-Latino Whites and may be less likely to have pre-established advanced directives, more likely to have gastrostomy or tracheostomy placement and less likely to have do-not-resuscitate status.

Keywords

End-of-life care
Palliative care
Neurointensive care
Latinos
Withdrawal of life sustaining treatments
Traumatic brain injury
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pmcIntroduction

Palliative care (PC) plays an essential role in health care, beyond end-of-life care, to encompass curative care and decision-making to provide support for patients and their families. These steps are needed for more comprehensive care in most hospitals. Culturally competent approaches to end-of-life care and PC in the acute setting is crucial particularly for the Latino community in the United States. One study of patients with advanced terminal illness showed that culturally-competent PC improved advanced care planning and patient’s physical symptoms.1 Another study demonstrated that culturally- and literacy-sensitive educational sessions for Latino caregivers improves attitudes towards end-of-life care for patients and their families.2 These studies highlight the need to determine the effect of PC (or lack of PC usage) in acute hospitalizations, particularly for acute neurological conditions in the neurological intensive care unit (ICU) which may currently be underutilized.3

Acute neurological conditions requiring intensive care, including traumatic brain injury, stroke, subarachnoid hemorrhage, or traumatic spinal cord injuries, pose unique challenges to end-of-life care and goals of care discussions. Goals-of-care discussions may supplement curative treatment in patients with both acute and chronic illnesses. PC is essential to aid patients and their family members cope with the burden of many chronic neurodegenerative disorders, such as dementia.4, 5, 6 However, the role of PC for acute neurological conditions is often complicated by the acuity of decisions that family members must make regarding medical interventions for the patient, the patient’s quality of life and emotional support in the intensive-care setting.7,8

The Latino population, defined as “any person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race”,9 constitutes a rapidly growing part of the U.S. population, with differing cultural beliefs, values or preferences compared with non Latinos living in the U.S. In 2022, Latinos made up 19.1% of the U.S. population, and is expected to rise 29% of the population by the year 2050.10 This review aims to identify gaps in the literature and describe insight for future research on end-of-life discussions and PC for Latinos living in the U.S. with acute neurological conditions. We will also explore the relationships between acute neurological end-of-life care, inpatient PC and cultural considerations specific to Latino populations that may help identify targets to improve care among this population.

Methods

Search strategy and selection criteria

One medical librarian (SS) designed the search strategy and executed the search strategy in the following databases: PubMed, CINAHL Plus with Full Text, Embase, Web of Science Core Collection, Scopus, LILACS, Global Index Medicus, APA PsycInfo, and Anthropology Plus. Each database was initially searched from inception of database to November 6, 2020. A second search was performed on March 10, 2022 to update the data. A third search was performed on May 22, 2024 to further update the data. The search used a combination of vocabulary (a set of standardized terms used to describe the content of each reference) and keywords to identify publications regarding goals-of-care discussion or availability of PC for patients in an inpatient setting among U.S. Latino populations. There were no limits for publication type, year, or language. Given the heterogeneous nature of these articles, we also included non-neurological conditions that could provide insight into management of acute inpatient neurological conditions. The full search strategy is included as Supplemental Methods.

Study selection

Citations from all databases were uploaded into EndNote X9, then exported into Covidence, a screening and data extraction tool. Initially, in the November 7, 2020 search, there were 2663 citations from which 520 duplicates were removed. The second search on March 11, 2022 retrieved an additional 708 results from which 216 duplicates were removed. The third search performed on May 22, 2024 retrived an additional 964 references from which 338 duplicates were removed. Six independent screeners (MMD, CAAR, LAG, CR, DCO, JRC) performed a title/abstract review. Ties were decided upon consensus between the two reviewers after discussion. If ties could not be resolved, they were discussed with the senior author (JRC) who made the determination. The included studies were then reviewed in full text by six independent screeners (MMD, CAAR, LAG, CR, DCO, JRC) with a third screener (JRC) available to resolve ties. The inclusion criteria were: (i) study site in the United States; (ii) study population partially or completely including hospitalized Latino patients with acute neurological conditions (iii) a study that addressed at least one of the following topics:a) the frequency of goals-of-care discussions after the prognosis has been established and shared with healthcare surrogates;

b) the role of the health care team in the goals-of-care discussions;

c) type of health care staff (physician, nurse, trainee, etc.) that leads the goals-of-care discussion,

d) presence of a pre-established advanced directive for patient healthcare;

e) role of pre-established advanced directives in the goals-of-care discussions, including “do not resuscitate”, “withdrawal of life-sustaining therapy” (WOLST) status, or variants of them;

f) role of the health care surrogate in the goals-of-care discussions;

g) PC services available that assist goals-of-care discussions; and

h) the outcome of the goals-of-care discussions, including the withdrawal of life sustaining treatments.

We excluded articles that included solely pediatric patients, oncology patients or patients with chronic non-acute illnesses. We did not include case reports.

Data extraction and quality assessment

Three reviewers (MMD, LAG, JRC) extracted data independently and in duplicate from each included study. The data entries were compared, and any disagreements were resolved by discussion among the reviewers. Data extracted from each eligible study included title, publication year, patient population characteristics (diseases discussed, total sample size, mean age ± standard deviation, proportion of females), purpose or objective of the study, study design, type of setting where study took place (inpatient, ICU, etc.) and the main results of each study. Authors from any included study were not contacted for any additional unpublished data. Given some articles did not include p-values and odds ratios, we did not include these throughout the manuscript for uniformity.

We tabulated the total sample (n = 44) of published work for topic covered, publication type, and citation information. The Joanna Briggs Institute Revised Critical Appraisal tool for the assessment of risk of bias (Checklist for Analytical Cross Sectional Studies)11 was used to determine the risk of bias for each study.

Standard protocol approvals

Given no patient data was collected for this study, no internal review board review was required. The study was registered on Open Science Framework (osf.io/en8cs) on May 16, 2024. PRISMA-Scoping Review checklist was followed.

Results

In total, 3231 studies were screened after removal of duplicates from which 245 full texts were reviewed and 44 studies were ultimately included in our review (Fig. 1). All studies included were found to have low risk of bias based on the risk of bias tool.Fig. 1 PRISMA flowchart of studies included on goals of care and palliative care usage in acute neurological and non-neurological syndromes among Latinos in the U.S.

In our review, we identified several themes that are noted below depending on the topic and results of the manuscript. Here, we describe the results of all manuscripts that met our inclusion criteria (Supplementary Table S1).

PC utilization patterns by minority status

We found ten studies that described PC utilization patterns among Latinos in the U.S. with an acute neurological diagnosis and several other articles that described patient-centered outcomes related to PC utilization patterns. One study of racial/ethnic minorities hospitalized for intracerebral hemorrhage in the U.S. found that minorities, including Latinos, had higher rates of in-hospital complications, in-hospital procedures, hospital costs and mean length of stay compared with non-Latino White patients with an intracerebral hemorrhage. White patients were more often referred to PC services and had a do-not-resuscitate status compared with Latinos with intracerebral hemorrhage.12 In another study of inpatients with ischemic stroke, PC utilization was lower in adjusted multivariable analyses among Latino patients with ischemic stroke compared with non-Latino Whites.13 Among 112,293 patients admitted in the U.S. with intracerebral hemorrhage, disparities in temporal trends of PC utilization among Latinos have narrowed over time, while PC utilization disparities among Black patients with intracerebral hemorrhage has persisted.14 A scoping review of racial/ethnic minorities hospitalized with intracerebral hemorrhage described that minority-serving hospitals used less PC services regardless of race compared with predominantly White-serving hospitals.15 In another study based on the national inpatient database of the U.S. between 2002 and 2017, Latino patients admitted with an ischemic stroke were less likely to have a PC encounter compared with non-Latino Whites.16 Another study using the National Inpatient Sample found an increase in the proportion of patients that had PC encounters from 5.4% in 2010 to 6.9% in 2012. Higher rates of PC utilization were found among patients of White race, but the rate of PC utilization was lower among Latinos compared with non-Latino Whites.17 These studies on patients with stroke demonstrate that significant differences among stroke patients and their use of PC are highly associated with ethnicity.

Regarding patients with traumatic brain injury, one study of 210,461 patients with traumatic brain injury found that Latinos had the lowest PC consultation rates (4.91%) while non-Latino Whites had 8.56% PC use.18 However, in a study of inpatients with severe traumatic brain injury from 2001 to 2015, the proportion of PC usage increased from 1.5% to 36.3% overall. The study found that 41.6% Whites compared with 25% Latino patients with severe traumatic brain injury had a PC consultation in 2015. White race and higher socioeconomic status were more likely to have a PC encounter compared with Latinos or those of low socioeconomic status. Percutaneous endoscopic gastrostomy tube (hereafter referred to as ‘gastrostomy’) utilization was lower among patients who had a PC encounter among both Whites and Latinos, but the effect was largest among White patients with severe traumatic brain injury.19 Although we identified articles describing PC usage rates, we did not identify any articles that explored the reasons for nor risk factors associated with these reported rates.

One study described the outcomes of an inpatient Spanish language PC consultation service for Spanish-speaking patients hospitalized for acute COVID-19 infection and found that 15 of 22 patients who had Spanish PC consultation had a change in code status and 4 were discharged to hospice.20 Another study of 351 hospitalized patients with any acute illness who culturally-adapted PC consultations found that culturally-adapted PC consultations resulted in higher rates of conversion to do-not-resuscitate status compared with those who did not receive culturally-adapted PC, particularly when Spanish PC was applied to Spanish-speakers.21

Latino ethnicity and the type of PC services received

We found four articles that addressed patient outcomes among Latino patients with an acute neurological diagnosis who were referred for PC services.

Non-neurological outcomes

In one ICU study, the most common diagnoses associated with PC consultation were respiratory failure, sepsis, altered mental status and cerebrovascular disease. Following a PC consultation, 53% of patients or their health care surrogate changed their code status to do-not-resuscitate, 61% of all Latino patients compared with 42% of all African American patients changed their code status to do-not-resuscitate.22

Neurological outcomes

In one study of patients with severe acute brain injury, Latino ethnicity was associated with receiving less hospice care and more utilization of life-sustaining measures, however there was no observed relationship between race or ethnicity and in-hospital mortality.23 In another study on neuro-ICU goals-of-care discussions after severe traumatic brain injury, non-White patients, including Latinos, had a 68% lower odds of prioritizing comfort measures only (defined as no further escalation of care and that comfort of the patient is prioritized) vs. extending life.24 Another study on race/ethnicity differences of inpatients with intracerebral hemorrhage found that relative to non-Latino White patients, Latino patients more frequently had a severe stroke despite being younger (median National Institutes of Health Stroke Scale 10). After adjustment for significant covariates, Latinos had lower odds of receiving comfort measures only or being discharged to hospice compared with non-Latino White patients with intracerebral hemorrhage.25 The reasons for these disparities in neuroICUs remain unclear but need further investigation. Factors including cultural, religious beliefs and lower educational levels or healthcare literacy may be possible reasons for these disparities. However, we did not identify any articles that explored these possible factors.

Discusses barriers to PC services or hospice/end-of-life care among Latinos in the U.S.

Six studies discussed barriers to PC services or hospice/end-of-life care among Latinos living in the U.S. In one study, minority patients who had suffered trauma, including Latinos, all received less hospice care compared with non-Latinos. Latino patients with polytrauma stayed 2.3 days longer on average prior to transfer to hospice compared with non-Latinos.26 The reasons for this are unclear and needs to be further elucidated. A study that investigated patient-level determinants of in-hospital death in the US has discussed some reasons that have been associated with greater adjusted odds of in-hospital death including being Black or Latino, living alone, and having more medical comorbidities. Moreover, Black and Latino older adults were more likely to die in the hospital than non-Latino Whites, even after controlling for socioeconomic, medical, functional characteristics and geographic region.27 This suggests that sociodemographic and comorbidity risk factors may not entirely explain the relationship between adverse in-hospital outcomes and race/ethnicity. One study of PC consultations in patients admitted with severe traumatic brain injury concluded that of all races/ethnicities, patients receiving a PC consultation resulted in a lower rate of gastrostomy tube placement; however, White patients had a larger reduction of gastrostomy tube placement than Black patients.19

There were three additional studies that discussed barriers of PC by enrolling surrogate decision-makers of Latino patients admitted to the hospital with a stroke. In one study of 320 surrogates (Mexican-Americans vs. non-Latino Whites), Mexican-American surrogate decision-makers reported better health professional communication and shared decision-making compared with non-Latino White individuals.28 Another study of 42 surrogate decision-makers for patients with traumatic brain injury found that Mexican-American surrogates felt a greater burden of decision-making on life-sustaining treatments compared with non-Latino Whites.29 Another qualitative study of 317 surrogate decision-makers identified that Mexican-American surrogates felt more guilt or burden even with the knowledge of the patients’ values or preferences (28%) compared with non-Latino White surrogates (13%).30

Discusses the role of advanced directives in goals-of-care discussions, including do-not-resuscitate status and its variants

We found that fifteen studies addressed the role of advanced directives in goals-of-care discussions among Latino patients in the U.S.

Non-exclusively neurological diagnosis

Among all inpatients regardless of diagnosis, one study found that non-Latino Whites were more likely to have do-not-resuscitate orders compared with all other ethnicities. In this analysis, do-not-resuscitate status was a confounder of the association between ethnicity and in-hospital mortality and was associated with in-hospital death.31 Similarly, in one study of patients who died after major elective surgery, Latinos were more likely to have been re-intubated and have had CPR compared with non-Latino White patients, raising a concern that racial minorities are at-risk for non-beneficial higher-intensity treatments and a worse quality of life during end of life.32 However, unlike previous findings demonstrating lower frequency of pre-established advance directives and more use of tracheostomy among Latinos, one study assessing the role of race/ethnicity among older adults admitted to a medical ICU found that there was no significant difference between non-White and White patients for mechanical ventilation, tracheostomy placement, positive airway pressure and enteral nutrition use and ICU mortality. There were also no significant differences in do-not-resuscitate order use.33 Similarly, in another study of patients with acute COVID-19 infection, there were no significant race/ethnicity differences in code status change during hospital admission.34 Among those 1254 patients with cardiopulmonary arrest, factors that influenced code status change were medical comorbidities and medical interventions rather than race/ethnicity which had no significant association with code status change.35 These varying results may be due to population or regional differences, or other factors including sociodemographic factors.

In one randomized controlled trial of 2512 hospitalized patients with an acute illness, providers were randomized to the intervention receiving a 1-page, patient-specific intervention (Jumpstart Guide) to prompt and guide goals-of-care discussions. Among patients with minoritized race/ethnicity, including 6% Latinos, goals-of-care discussions were 10.2% higher in the intervention group compared with the usual care group.36

Neurological diagnosis

Similar trends were seen among patients with a neurological diagnosis. In one study of patients with stroke (58% Mexican-Americans; 37% non-Latino Whites), Mexican-Americans were less likely than non-Latino Whites to have early do-not-resuscitate orders after suffering a stroke, but there were no race/ethnicity differences in late do-not-resuscitate orders. There were no significant changes over time for race/ethnicity differences in do-not-resuscitate orders.37 One study of inpatients with intracerebral hemorrhage found that Latinos had higher odds of having do-not-resuscitate orders in place compared to Blacks, but less so than Whites adjusting for hospital-level characteristics and other clinical characteristics.38 In a national study of 27,768 patients with intracerebral hemorrhage, only 18% had a do-not-resuscitate order, and being of Latino ethnicity and a teaching hospital was associated with lower utilization of do-not-resuscitate orders.39 Similarly, among 88 patients with nontraumatic intracerebral hemorrhage, 7% had a do-not-resuscitate order on admission, while 13% were discharged with a do-not-resuscitate order and an additional 13% were comfort care. Latino patients were significantly more likely to have a code status of full code and less likely to receive a PC consult compared to non-Latino White patients.40

In a similar study of patients who had an intracerebral hemorrhage, Mexican-Americans were significantly less likely than non-Latino Whites to use do-not-resuscitate orders at any time point. In a study of 1150 patients with stroke (subarachnoid hemorrhage), Latino patients were less likely to have insurance, as well as advanced directives prior to hospital admission, less PC and hospice utilization compared with non-Latino Whites.41 This persistent pattern toward less frequent use of do-not-resuscitate orders among Latinos, including Mexican-Americans, suggests more studies are needed to assess the role of cultural, physician and hospital factors on decision-making among Latino patients with an intracerebral hemorrhage.42 Lastly, another study of do-not-resuscitate orders found that after having an ischemic stroke, Latino patients and other minorities were less likely to have a do-not-resuscitate order compared with non-Latino White patients. This suggests that factors including treatment patterns of particular hospital settings (community vs. tertiary referral center; hospital geographical location) may be determining factors of code status changes.43

Only one study described code status changes by ethnicity among patients with traumatic brain injury. Of 30,660 patients with traumatic brain injury, Latino patients had decreased odds of having do-not-resuscitate status during hospital admission compared to Whites, and Latinos had the lowest rates of advanced directives prior to hospital admission compared to all other race/ethnicities.44

Discusses the outcomes of goals-of-care discussions, including WOLST

We found eight studies that discussed outcomes of goals-of-care discussions, including WOLST among U.S. Latinos compared to other racial/ethnic groups.

Non-neurological diagnoses

One study found that the likelihood of discontinuation of dialysis among hospitalized patients with a serious health condition was lower in Latinos compared to non-Latino Whites.45 In another study of trauma inpatients, Latino patients were more likely to have late WOLST compared to early WOLST (7.8% vs. 6.8%), but White patients were more likely to have early WOLST (73.6% late vs. 76.9% early WOLST).46

Neurological diagnosis

In one systematic review of race/ethnicity disparities of patients with traumatic brain injury, Latinos were less likely to receive post-hospital rehabilitation post-traumatic brain injury compared with non-Latino Whites (controlling for traumatic brain injury severity and insurance status). Minorities were more likely to have poor employment outcomes and functional deficits and increase in emotional or neurobehavioral problems compared with Whites post-traumatic brain injury at follow-up.47 Another study of patients with subarachnoid hemorrhage, found that comfort measures only were more common among Whites (14%) compared to Latinos (9%), and Latinos were less likely to die with comfort measures only orders compared to Whites in multivariate analyses.48 Similarly, in a large study of patients with subarachnoid hemorrhage (n = 266,067) in the U.S., stepwise logistic regression revealed that patients with subarachnoid hemorrhage of Latino ethnicity were less likely to have WOLST compared with non-Latino White patients.49 In one study of 61,115 patients with traumatic brain injury, the authors concluded that the decision to withdraw life-sustaining measures in young patients with severe traumatic brain injury may be influenced by non-Latino ethnicity in addition to clinical considerations.50 Factors including sociodemographic factors, insurance status, and cultural or religious beliefs could play a role in these disparities and should be further studied, but these were not discussed in any of the studies we identified.

In patients with intracerebral hemorrhage, one study found minority patients (including Latinos) had higher rates of mechanical ventilation, tracheostomy and gastrostomy placement compared with non-Latino Whites in multivariable analyses. Notably, Latino patients had higher rates of craniectomy and ventriculo-peritoneal shunt placement compared with non-Latino Whites.12 In another study of 2705 patients with non-traumatic intracerebral hemorrhage (912 Black, 893 Latino, 900 White), 10% of the cohort received comfort care and of these (7% Black, 9% Latino, 15% White). However, similar mortality rates comparing all racial/ethnic groups were seen.51 Reasons for these differences were not described but may be due to less communication between the provider and patient perhaps due to language barrier, health literacy barrier or other factors that have not been described. Unlike these other studies that have demonstrated lower WOLST among Latino patients, among 725 patients with intracerebral hemorrhage, 9.9% underwent WOLST in the entire cohort. After controlling for age, intracerebral hemorrhage volume, Glasgow Coma Scale and intraventricular hemorrhage, no significant differences were seen between Latinos and non-Latino Whites in terms of WOLST rates nor rates of do-not-resuscitate/do-not-intubate status.52 Notably, we found no studies that directly observed how often a physician or healthcare provider had a WOLST discussion with their patient.

Discusses the outcomes of tracheostomy or gastrostomy tube placement

Several studies discussed outcomes of hospitalized Latino patients after tracheostomy or gastrostomy tube placement, including one study of patients with traumatic brain injury that showed Latinos were over 6 times more likely to receive a nasogastric tube than non-Latino Whites, African Americans or other minorities.47 In a previously mentioned study of patients with severe traumatic brain injury, Latinos had a 10% increased risk of tracheostomy utilization and 20% decreased risk of hospice utilization compared with non-Latino Whites. Despite this, there was no observed relationship between race/ethnicity and in-hospital mortality.53 In another study of patients with in-hospital cardiac arrest and anoxic-hypoxic ischemic encephalopathy, Latinos had higher odds of having a gastrostomy tube and tracheostomy placement than Whites. Among inpatients with severe traumatic brain injury, Latino patients had a 10% increased risk of tracheostomy utilization and for gastrostomy tube utilization compared with non-Latino Whites.23

Another study of inpatients with stroke in the U.S. found that a gastrostomy tube was placed in 6.3% of all patients who had a stroke. Minority race/ethnicity (including Latinos) had higher rates of gastrostomy tube placement compared with non-Latino Whites. Notably, women who had a stroke and were of a racial/ethnic minority had 2-fold higher odds of gastrostomy tube placement compared with non-Latino White women.54 Factors that affected gastrostomy/tracheostomy utilization may be surrogate decision-making preferences, PC involvement, educational level, socioeconomic status, lack of advanced directives, quality of life perceptions, cultural beliefs and the medical team’s ability to prognosticate neurological recovery.55 However, these factors were not directly investigated in this study highlighting the need to investigate risk factors for these disparities.

Discussion

Our study has identified 30 publications that discuss the implications of end-of-life care, Goals-of-care discussions and PC utilization among Latinos in the U.S. with acute neurological and non-neurological conditions. However, while the existing literature identified in this review article provides insight into the intersections of end-of-life discussions, PC and neurological conditions among Latinos in the U.S., several gaps in the literature have been identified.

Knowledge gaps

Gaps in the literature include addressing the cultural variability within the Latino community of the U.S. In our review, we did not find any articles that addressed how cultural beliefs, practices or language preferences may impact the frequency of goals-of-care discussions nor outcomes after goals-of-care discussions. Further research should determine how these cultural differences might impact end-of-life decisions and PC involvement among Latinos with acute neurological conditions. Moreover, language and communication barriers between the provider and the patient or family may play a significant role in limiting the explanation a provider may give for prognostication of the patient’s condition is needed. No article that we found addressed how language barriers impact end-of-life discussions and decision-making processes, but one article did find that applying language-appropriate PC consultation changes rates of code status change and hospice discharge.20 We found no articles including the use of language-appropriate resources provided to the patient and their family members. Studying how often language-appropriate resources are provided is crucial to understanding the disparities encountered in goals-of-care discussions, PC involvement and outcomes of both of these.

Implications for clinical care and future research

Other gaps that we identified in the literature included a lack of exploration of how family dynamics impact the decision-making process among the Latino community. Strong familial ties among Latino families, as well as cultural and spiritual beliefs, may impact end-of-life practices which require further exploration. Obtaining family perspectives on end-of-life care using qualitative methods to capture various viewpoints around end-of-life care could help tailor culturally appropriate training for providers and resources for Latino populations.

PC assists not only in end-of-life decisions, but also in providing comprehensive curative care in severe acute or chronic neurological illnesses. There appears to be lower PC utilization among Latinos compared with non-Latino ethnicities in several studies identified, highlighting the need to improve access to PC for Latinos for more comprehensive curative acute care. We found that no studies assessed factors that may contribute to the increased utilization of life-sustaining treatments, including tracheostomy and gastrostomy tube placement among Latinos, nor the decreased utilization of hospice and PC in studies of acute neurological conditions. Moreover, no study in our review analyzed these as barriers, highlighting the need to develop studies that elucidate reasons for these differences in end-of-life care and PC in the U.S.

Limitations

Despite these important gaps we have identified in the literature, our study has several limitations. First, not all manuscripts that may have covered U.S. Latinos in the neurological ICU setting may have been captured by our search strategy given we used specific terms for “goals of care” and “PC”. Second, given the paucity of articles specifically focused on neurological ICU care among Latinos, we decided to expand our search to included non-neurological acute care setting as well. This decision makes our findings for this subset of non-neurologically injured patients less likely to be directly extrapolated with acute brain injury patients. Lastly, the results of our search do not allow us to identify the characteristics of primary vs. consultative PC practice in the US Latinos population. This is the result of the scarcity of publications in addressing the study subject as well as the non-descriptive use of the PC concept.

Conclusions

Effective end-of-life discussions and PC to Latinos with acute neurological conditions provides an in-depth understanding of cultural differences and communication styles among Latinos. Exploring policy initiatives, funding mechanisms and best practices for integrating culturally-sensitive care into healthcare systems can guide future improvements. Further longitudinal studies exploring the experiences and outcomes of Latinos with neurological conditions is needed to determine the longitudinal factors that may be protective of poor outcomes and improve end of life quality during treatment of acute neurological illnesses in the ICU setting.

Contributors

The authors confirm that the manuscript complies with all instructions to authors. All authorship requirements have been met and the final manuscript was approved by all authors.

Monica Diaz: drafting of manuscript, literature review and screening.

Lesley A. Guareña: drafting of manuscript, literature review and screening.

Bettsie Garcia: drafting of manuscript, literature review and screening.

Christoper A. Alarcon-Ruiz: drafting of manuscript, literature review and screening.

Stella M. Seal: drafting of manuscript, literature review and screening.

Clio Rubinos: drafting of manuscript, literature review and screening.

Dulce M. Cruz-Oliver: drafting of manuscript, literature review and screening.

J. Ricardo Carhuapoma: literature review and screening, critical revision and scientific contribution to manuscript, final responsibility for the decision to submit the study for publication.

Ethical approvals and checklist

Authors confirm that this manuscript complies with ethical guidelines. This study does not require ethical approvals nor informed consent given it is a scoping review of previously published literature. We confirm that PRISMA checklist was utilized (Supplementary Material).

Declaration of interests

Monica Diaz: The author has no conflict of interest to report.

Lesley A. Guareña: The author has no conflict of interest to report.

Bettsie Garcia: The author has no conflicts of interest to report.

Christoper A. Alarcon-Ruiz: The author has no conflict of interest to report.

Stella M. Seal: The author has no conflicts of interest to report.

Clio Rubinos: The author has no conflicts of interest to report.

Dulce M. Cruz-Oliver: The author has no conflicts of interest to report.

J. Ricardo Carhuapoma: The author has no conflicts of interest to report.

Appendix ASupplementary data

Supplementary Files S2 and S3 and Table S1

Acknowledgements

Funding: Monica Diaz: Dr. Diaz is supported by 10.13039/100019274 National Institute of Mental Health (K23MH131466 ) of the 10.13039/100000002 National Institutes of Health ; the 10.13039/100000957 Alzheimer's Association (AARGD-22-924896 ) and the 10.13039/100005339 American Academy of Neurology .

Lesley A. Guareña: Ms. Guareña is supported by 10.13039/100000001 National Science Foundation Graduate Research Fellowship Grant DGE-2137419 .

Bettsie Garcia: No funding to report.

Christoper A. Alarcon-Ruiz: No funding to report.

Stella M. Seal: No funding to report.

Clio Rubinos: No funding to report.

Dulce M. Cruz-Oliver: No funding to report.

J. Ricardo Carhuapoma: No funding to report.

Appendix A Supplementary data related to this article can be found at https://doi.org/10.1016/j.lana.2024.100873.
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