Decisions about palliative care and social determinants of health in intensive care units: a scoping review
Article information
Abstract
Social determinants of health (SDoH) play important roles not only in a patient's health status but also in access to palliative care, the family's decision-making process, and the formation of patient values and preferences. In this scoping review, we analyze the social determinants that influence palliative care decision-making and examine the relationship between palliative care decisions and SDoH in the intensive care unit (ICU). We conducted a literature search of five databases including the search terms “Intensive care units,” “palliative care,” and “social determinants of health.” The search was limited to English publications from January 2015 to March 2025. Out of a total of 3,575 studies, we selected 20 for further review. Of those 20 studies, some reported that SDoH such as age, race, financial status, religion, sex, region or country, education level, and language proficiency affected decisions regarding ICU palliative care and whether to discontinue life support treatment. The reviewed studies of SDoH-related palliative care in the ICUs focused on aspects of palliative care associated with treatment withholding and withdrawing life support treatment. This study underscores the importance of integrating SDoH with clinical indicators in decision-making processes for palliative care in the ICU. Although establishing definitive relationships between SDoH and ICU palliative care decisions remains challenging, our findings highlight the potential impacts of social factors on care planning. Further research across various clinical settings is essential to clarify this relationship to develop more comprehensive and equitable palliative care strategies.
INTRODUCTION
Palliative care is an active and integrated form of care that applies to individuals of all ages, especially those near the end of their lives who experience severe health-related suffering. Palliative care aims to improve the quality of life of patients, their families, and caregivers. Palliative care regards death as a natural process and respects the cultural values and beliefs of patients and their families [1]. According to the World Health Organization (WHO), palliative care is a human health right. However, only about 14% of the estimated 56.8 million people worldwide who need palliative care each year receive the same [2].
Palliative care in the intensive care unit (ICU) is related to the concept of care and comfort [3], specifically nursing activities such as pain relief and physical symptom management (e.g., fatigue, nausea, constipation, insomnia) [3], meeting the patient's cultural and spiritual needs, and alleviating the patient's psychological and emotional pain, with the goal of ultimately improving the patient's quality of life [4]. The integration of palliative care into ICUs improves symptom management and quality of life, including alleviating uncomfortable symptoms, reducing unnecessary invasive procedures [5], and facilitating the discussion of treatment objectives to ensure that treatment meets patient values and family wishes [5-8].
However, palliative care is distinguished from "general" care in ICUs by the presence or absence of a "do not resuscitate (DNR)" prescription [9]. In a study of characteristics of end-of-life (EoL) care in European ICUs at two time points 16 years apart, the number of cases of withholding or withdrawing life support treatment (LST) was greater in a 2015-2016 cohort than in a 1999-2000 cohort [10]. In general, ICU deaths are converted to EoL and palliative care aimed at alleviating symptoms after decisions to limit treatment are made due to patient preference or ineffective treatment [10]. The transition from therapeutic treatment to EoL and palliative care in the ICU is particularly difficult, because LST must be withdrawn or withheld, and patients usually die quickly after stopping LST [10].
When making decisions about palliative care, it is necessary to understand the values and preferences of patients and their families [11] and the social determinants of health (SDoH) that affect them [12]. The World Health Organization (WHO) has defined SDoH as “the circumstances in which people are born, grow up, live, work and age, and the systems put in place to deal with illness. These circumstances are in turn shaped by a wider set of forces: economics, social policies, and politics [13].” However, since SDoH is rarely considered in clinical decision-making processes [12], the European Society of Critical Care and Palliative Care guidelines in the ICU published in 2024 also recommend that it should be individualized to meet the cultural needs of patients and their families [14]. However, there are no specific recommendations or domains that encompass SDoH.
Previous studies identified SDoH as a critical factor influencing access to palliative care [15,16]. These studies reported that variables such as race, sex, informal caregiving, geographic location, socioeconomic disparities, healthcare accessibility, challenges faced by low-income countries, financial and insurance-related issues, cultural and religious preferences, lack of information, misconceptions, and mistrust significantly impact the utilization of palliative services. Furthermore, their findings suggest that communication barriers among healthcare providers, language differences, perceptions of discrimination, and varying levels of cultural sensitivity are additional obstacles to effective palliative care delivery [16].
Therefore, SDoH is a key factor not only in patient health status, but also in determining access to palliative care, influencing family decision-making processes, and shaping patients’ values and preferences. Disparities due to SDoH have been reported in palliative care decision-making processes for pediatric patients with life-threatening illnesses, cancer patients, and patients with brain injuries [17-19]. Similar trends are expected to occur in critically ill patients with life-threatening illnesses, but research on this topic remains limited. In general, little is known about how SDoH specifically affects decision-making treatment plans, including palliative care, in ICU environments. This scoping review was conducted to comprehensively explore the relationships between palliative care decision-making and SDoH in the ICU.
METHODS
Study Design
This scoping review was conducted according to the framework proposed by Arksey and O'Malley [20] and was reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines [21]. The following steps were utilized: (1) identify the research question; (2) identify relevant studies; (3) select studies; (4) chart the data; and (5) collect, summarize, and report the results.
Identifying the Research Question
According to the population, concept, context (PCC) format, the PCC of this study is as follows: (1) population: patients; (2) concept: palliative care and SDoH; and (3) context: ICU. The specific research question was as follows: Do any SDoHs affect decisions regarding palliative care for ICU patients?
Identifying Relevant Studies
We searched the literature using five databases: CINAHL, Cochrane, Embase, PubMed, and Web of Science. The literature search was conducted on March 27, 2025. Criteria for inclusion were research papers published in the last 10 years (January 2015 to March 2025) in English. According to clinical questions, “intensive care units,” “palliative care,” and “social determinants of health” were used as combined search terms, and medical subject headings (MeSH) and key concept words were examined by the librarian and confirmed as follows. Studies of intensive care were searched using the terms “intensive care units,” “critical care,” and “ICU.” Palliative care was defined following European Society of Intensive Care Medicine guidelines [14], and studies of palliative care were searched using the terms “advanced care planning,” “palliative care,” “terminal care,” and “end of life.” Lastly, social determinants were searched using the terms “social determinants of health,” “sociological factors,” “sociologic environment,” “sociotechnical determinants,” “social determinants,” and “sociological factors.” Appropriate formulas were used for the identified search terms for each search engine (Supplementary Material 1).
Study Selection
All citations and abstracts identified using the search strategy were uploaded to a reference management software program (EndNote 21.0) for study selection. Three researchers (JYK, HY, and EH) independently screened and selected the studies in two phases. Duplicate records were removed in the first phase. The titles and abstracts of the remaining studies were reviewed to exclude studies that did not meet the predefined eligibility criteria. In the second phase, the full texts of the potentially relevant articles were independently assessed by the three researchers. Any disagreements regarding study inclusion were resolved through discussion with a fourth senior researcher (YJ).
Inclusion and exclusion criteria were defined by consensus, and research selection was performed accordingly. After excluding duplicate papers, titles and abstracts were reviewed to exclude irrelevant studies. Each original text was then checked, and targets were selected. The entire process of data collection and selection was finalized by consensus to resolve any disagreements between the two researchers who independently reviewed the literature. The following inclusion criteria were used: neonatal, pediatric, and adult critically ill patients. Meanwhile, the following exclusion criteria were used: review articles and studies whose original text was not verified.
Data Charting
Three researchers (HY, JYK, and EH) independently charted and crosschecked data from the included studies using a standardized Excel form developed by the research team. The extracted information included study characteristics (e.g., authors, year, country, and study design), participants and sample, palliative care, and SDoH variables. The chart form was developed a priori based on the PCC framework and refined through team discussions. Three reviewers (HY, JYK, and EH) independently assessed the consistency of the extracted data. Any discrepancies were resolved through discussion and with input from a fourth reviewer (YJ) when necessary.
Data Analysis and Synthesis
The extracted data were subjected to narrative synthesis and organized into two main sections. The first section summarizes the characteristics of the included studies, including the authors, publication year, country, study design, participants, and sample size. The second section focuses on palliative care and SDoHs, including age, sex, social class, ethnicity, education, language, religion, and region. SDoHs were organized according to the Commission on Social Determinants of Health (CSDH) conceptual framework [22]. Meta-analysis and quantitative synthesis were not feasible due to methodological heterogeneity.
RESULTS
Search Results
A total of 3,575 studies were retrieved from the surveyed databases, and 168 duplicate records were removed. Following title and abstract screening of 3,407 studies, 3,236 were excluded for reasons such as being unrelated to the SDoHs or palliative care, being conducted outside the ICU setting, or not meeting the criteria for peer-reviewed original research. The full texts of 171 studies were reviewed, of which 151 were excluded based on criteria such as study design, topic relevance, and language eligibility. Ultimately, 20 studies met the inclusion criteria. The comprehensive study selection process is illustrated in Figure 1.
General Characteristics of Included Studies
Twenty studies were included in the present review. These studies varied in design, population, and clinical contexts. Fifteen of the included studies employed retrospective design [23-37]. Three studies were secondary analyses [38-40], and two employed a prospective design [41,42]. These studies were conducted across diverse geographical regions, including the United States [25-31,34-37,42], South Korea [24], Spain [41], Switzerland [32], Australia [33], Taiwan [23], and international collaborations [38-40]. Patient populations ranged from neonate to elderly with clinical conditions such as COVID-19, cancer, congenital cardiac disease, trauma, and other critical illnesses. A summary of the characteristics of the included studies is presented in Table 1.
Relationships between Palliative Care Decisions and SDoH
Across the 20 included studies, palliative care decisions in ICUs were represented by DNR orders, decision to withhold/withdraw life-sustaining treatment (DLST), withdrawal of care (WOC), withdrawal or withholding of life-sustaining treatment (WLST), limitation of therapeutic effort (LTE), decisions to forgo life-sustaining treatment (DFLST), limitation of life-sustaining treatments (LLST), advance directives (AD) and do-not-intubate (DNI) orders and inpatient palliative care consultations. Differences in palliative care decisions based on SDoH were reported across several domains. A range of SDoHs were assessed across studies, including age, sex, ethnicity (racism), social class (e.g., insurance, income), geographic region or country of origin, religion, education level, and language proficiency. According to the CSDH conceptual framework, age and sex, which correspond to “behaviors and biological factors,” are “intermediary determinants,” along with region, which is included in “material circumstances.” In addition, social class, ethnicity (racism), education, and language correspond to “socioeconomic position,” and religion corresponds to “culture and societal values,” which are “structural determinants.”
Age, as a “behavioral and biological factor” and “intermediate determinant,” is the most frequently examined factor. Nine studies reported significant associations between older age and increased likelihood of receiving DNR orders, WLST, or palliative care involvement [23,29,31-34,36,39,40]. Similarly, lower gestational age was associated with higher likelihood of DNR orders and WLST in studies focusing on neonatal populations [26]. In contrast, five studies found no statistically significant differences in age [24,25,37,38,42]. Sex showed limited associations [23-25,29,33,37-42], with two studies indicating that female patients were more likely to have AD or receive palliative care [32,34].
Social class (including insurance coverage and income level) is both a "socioeconomic status" and a "structural determinant" that has an inconsistent effect on palliative care decision-making. Some studies have found that patients with public insurance (e.g., Medicaid or Medicare), who were unemployed, or with a higher income were more likely to receive WLST or palliative care consultations than those with private insurance [25,34]. Additionally, one study [40] reported that higher levels of national income and healthcare expenditures were associated with increased palliative care utilization. However, other research [24,27,38] found no statistically significant differences in these variables.
Ethnicity (racism), as a "socioeconomic status" and "structural determinant," was examined in several studies. Eight studies reported racial disparities in palliative care decision-making, such as lower rates of inpatient palliative care services among African American patients and a higher likelihood of DNR or WLST decisions among White patients compared to Black patients [26-28,30,34-36,42]. However, other studies have found no statistically significant association between race or ethnicity and these outcomes [25,29,31,37]. Table 2 summarizes the relationships between SDoH and palliative care decision-making in the included studies.
DISCUSSION
The aim of this scoping review was to comprehensively explore the relationships between palliative care decision-making and SDoH in the ICU. After reviewing 20 studies, we found that SDoH, including age, sex, ethnicity (racism), social class, region, religion, education level, and language proficiency, influenced decisions regarding the provision of ICU palliative care and the discontinuation of LST. Furthermore, research focusing on SDoH-related palliative care in ICU settings has been relatively limited and has primarily addressed specific aspects, such as withholding or withdrawal of life support treatments, including DNR.
In the analyzed studies, the factors influencing palliative care decisions in the ICU were age, sex, ethnicity, social class, region, religion, educational level, and language ability. Although various SDoHs were evaluated as such, not many studies confirmed associations with SDoH, and the association of SDoH within the ICU with palliative care remained unclear because the results of studies were inconsistent.
A previous scoping review [15] examined the equity of palliative care access within hospital and community settings, highlighting that SDoH, including racial, ethnic, and geographic disparities, contribute to inequalities in access to palliative services. In this review we found that minority groups encounter significant challenges in obtaining palliative care, with African American patients more readily accessing such services compared to other minority populations. Additionally, urban areas had better access to palliative care than rural areas. However, we also noted that the findings across the included studies were inconsistent.
In another scoping review investigating racial differences in palliative care utilization [16], SDoHs affecting the use of palliative care were similarly identified to include financial and insurance challenges, cultural and religious preferences, treatment environment, and care setting or geographic region. Lack of information, misunderstandings, and distrust (misconceptions, trust, and lack of information) also affect the utilization of palliative care [16]. Likewise, the findings across studies were inconsistent.
As demonstrated in this study and previous research, palliative care decisions in clinical settings are influenced not only by patients' medical conditions but also by the SDoH. A previous study reported that ethnic and educational disparities exist in palliative care among patients with pancreatic cancer, with pain management, nutritional care, psychological support, and end-of-life planning being less commonly provided for non-White patients and those with lower levels of education [18], while another study found that, among patients with brain injuries, White patients and those with higher socioeconomic status were more likely to receive palliative care consultations than Black and Hispanic patients and those with lower socioeconomic status [19]. As such, active research is underway on the impact of SDOH in fields other than critical care. Therefore, similar phenomena are expected in the critical care setting, but little research has been conducted on this topic. These social factors may play a significant role in the decision-making processes in various clinical environments, including ICUs. This suggests that certain population groups make different decisions regarding palliative care, influenced by their social circumstances. Additionally, social factors can act as barriers or facilitators to the palliative care decision-making process [43,44]. However, research findings on this relationship have been inconsistent and studies examining the connection between palliative care decisions and SDoH remain limited, particularly in ICU settings. Consequently, further research is necessary to identify specific SDoH factors that affect palliative care decision-making in ICUs.
In this review, ICU palliative care related to SDoH was limited to the broad aspects of palliative care, with six papers focused on DNR, and the remaining 14 papers focused on the discontinuation of treatment, such as life support treatment, expressed as DLST, WLST, and other factors, and counseling related to discontinuation of treatment. However, according to the WHO, palliative care includes physical, mental, spiritual, and social care for improving quality of life (QOL) [45]. Based on palliative care guidelines [46] for patients with cancer, QOL, patient satisfaction, physical and psychological symptoms, survival rates, and caregiver burden are outcomes of interest, with a focus on improving the QOL. It is also recommended that physical, psychosocial, and spiritual pain be addressed by providing dedicated specialized palliative care services [46]. In ICUs, where life support and extension occupy a more important position, palliative care comprises physical symptom management rather than mental, spiritual, and social care for patients and caregivers, but appears to focus on discontinuing life support treatment [9].
The European Society of Critical Care Medicine's End-of-Life and palliative care guidelines [14] also report that most early palliative care integrated studies on ICU patients focused on discussing treatment objectives through consultations with palliative care professionals or family interviews with ICU staff. No other components of palliative care, such as symptom management or spirituality, were investigated. However, since some previous studies reported that providing palliative care brings better clinical outcomes to patients [5,47,48], it is necessary to expand such studies about comprehensive palliative care to ICUs in ways that can be applied to the basic concepts of palliative care.
Therefore, it is necessary to improve clinical symptoms through mental, spiritual, and social care, as well as physical symptoms in ICU palliative care. Clinicians should identify factors of SdoH that affect the decision-making process of palliative care in ICUs, as well as age, sex, ethnicity, social class, region, religion, educational level, and language ability, and provide comprehensive palliative care that is more suitable for the values and preferences of patients and families. The provision of comprehensive palliative care can increase the application of palliative care in the ICU and reduce the number of patients or caregivers suffering from unbeneficial treatments.
This review had some limitations. First, it was restricted to English-language studies, which may limit the generalizability of the findings and pose challenges in applying the results across different populations and contexts. Second, the review focused solely on examining the relationship between SDoH and palliative care decision making in the ICU, thereby precluding conclusions regarding whether the actual outcomes of palliative care decisions are dependent on SDoH. Third, the included studies had heterogeneous participant populations, study designs, and outcomes, which limits the generalizability of the findings. Therefore, further studies should be conducted to examine the relationships between SDoHs and palliative care in ICU across diverse populations.
CONCLUSIONS
Our findings suggest that it is important to consider SDoH in palliative care decision-making processes in ICUs. Although few previous studies have examined SDoHs in the ICUs, in this study we found that SDoHs may influence palliative care decisions for specific patient populations in ICUs. This emphasizes the need for further research to better understand the impact of the SDoH on such decisions. In particular, it is essential to identify the effects of age, race, economic status, and social, cultural, and educational factors on treatment choices and access to palliative care. Addressing barriers caused by SDoH should be a priority, and tailored policy development is needed to mitigate obstacles related to treatment accessibility issues stemming from economic inequality. Furthermore, policy initiatives at the institutional and national levels should focus on improving access for vulnerable patient groups to create a more inclusive and equitable palliative care environment within the ICU setting.
KEY MESSAGES
▪ Social determinants of health (SDoH) can influence decision-making related to palliative care in intensive care units (ICUs), particularly in decisions concerning the limitation of life-sustaining treatment.
▪ Existing evidence suggests that the integration of SDoH in ICU palliative care is inconsistent and limited. This information highlights the necessity to develop more comprehensive, culturally sensitive, and equitable decision-making processes to ensure that patient care reflects diverse social contexts and to address disparities.
▪ Future research and policy should focus on addressing disparities to ensure that ICU palliative care aligns with the values, preferences, and needs of all patients and their families.
Notes
CONFLICT OF INTEREST
Yeonsoo Jang is an editorial board member of the journal but was not involved in the peer reviewer selection, evaluation, or decision process of this article. No other potential conflicts of interest relevant to this article were reported.
FUNDING
None.
ACKNOWLEDGMENTS
None.
AUTHOR CONTRIBUTIONS
Conceptualization: HY, JYK, YJ. Data curation: EH. Methodology: HY, JYK, EH, YJ. Project administration: YJ. Visualization: EH. Writing – original draft: HY, JYK, EH, YJ. Writing – review & editing: HY, EH, YJ. All authors read and agreed to the published version of the manuscript.
SUPPLEMENTARY MATERIALS
Supplementary materials can be found via https://doi.org/10.4266/acc.005000.
Search strategies by database
acc-005000-Supplement-1.pdf