Racially and Ethnically Marginalized Patients’ Perspectives on Nurse-Led Serious Illness Conversations

Abstract

Background:

Although racial and ethnic disparities in serious illness conversations have been documented, the experiences of racially and ethnically marginalized patients in nurse-led conversations remain underexplored.

Aim:

To explore racially and ethnically marginalized patients’ experiences of nurse-led serious illness conversations and their engagement in discussions about goals and future care.

Design:

A mixed-methods convergent study using surveys and semi-structured interviews.

Setting/Participants:

Racially and ethnically marginalized patients ≥18 years old from a single U.S. health care system.

Measurements:

The Advance Care Planning Engagement Survey, Serious Illness Conversation Patient Experience Survey, and semi-structured interviews.

Results:

Fifteen patients participated in the study. Participants felt confident engaging in advance care planning (mean: 4.35/5.00) but were less ready to act (mean: 3.40/5.00). Nearly half reported that nurse-led serious illness conversations increased hopefulness about their quality of life, closeness with the nurse, sense of control over medical decisions, and understanding of their future health. The mean “heard and understood” score was 3.00, indicating that nurse-led conversations moderately helped participants feel heard and understood. Integrated analysis showed that nurse-led serious illness conversations supported participants feel comfortable and confident engaging in discussions about their goals and future care. Nurse-led conversations also helped foster a better understanding of participants’ future health. However, confidence did not translate into readiness in the context of multifaceted distress.

Discussion:

Nurse-led serious illness conversations facilitated greater confidence among racially and ethnically marginalized patients to discuss their goals and future care and fostered understanding of their future health; however, additional support is needed to address multifaceted distress affecting readiness.

Keywords

marginalized groups nurse-led interventions serious illness serious illness conversation

Key Message

Among racially and ethnically marginalized patients, nurse-led serious illness conversations facilitated confidence in discussing their goals and future care and fostered understanding of their future health. However, interdisciplinary collaboration to address multifaceted distress, along with expanded nurse training in serious illness communication, is needed to support readiness.

Introduction

Serious illness conversations are structured discussions that include sharing prognostic information, eliciting preferences, understanding fears and goals, exploring trade-offs, and clarifying desired family involvement.¹ They are associated with greater concordance between patient wishes and care received, less use of nonbeneficial life-sustaining treatment, reduced family distress, and lower health care utilization.^2–11 However, only one-third of patients in their last year of life report having serious illness conversations, and they often occur too late in the illness trajectory.^2,7–11

Clinicians at our study sites have participated for more than a decade in system-wide serious illness conversation training,¹¹ which includes an evidence-based conversation guide, clinician training, systematic patient identification, an electronic medical record documentation module, and ongoing coaching.^1,12–15 Since 2013, we have worked with the Integrated Care Management Program, which supports complex patients and trains clinicians such as registered nurse care coordinators, social workers, and primary care physicians to conduct serious illness conversations as part of primary palliative care.

Studies show that the program leads to earlier and higher-quality conversations and reduces patient anxiety and depression.^2,11 Nurses are well-suited to lead serious illness conversations given their expertise in care coordination, relationship building, and interdisciplinary collaboration.^16–22 Prior studies have used nurse-led approaches to facilitate early serious illness conversations, which increased advance care planning (ACP) documentation and showed mixed effects on readiness to engage.^23,24 For example, nurse-led serious illness conversations in emergency departments increased documentation of values and goals but did not improve patients’ readiness to engage in ACP.²³ A collaborative care model–based intervention involving nurse- and social worker–led serious illness conversations for patients with advanced cardiopulmonary disease improved readiness to engage in ACP.²⁴ A recent study found no racial differences in readiness to engage in ACP among seriously ill non-Hispanic Black and non-Hispanic White older adults; however, predictors of readiness varied across groups.²⁵ Furthermore, our prior work examining nurses’ perspectives on conducting serious illness conversations with racially and ethnically marginalized patients emphasized the importance of addressing unmet needs.²²

However, the perspectives of racially and ethnically marginalized patients on nurse-led serious illness conversations remain underexplored,^26–30 despite persistent disparities in end-of-life care, hospice utilization, and quality of conversations about values and care preferences.^{21,26,31–34} We conducted a mixed-methods study to explore racially and ethnically marginalized patients’ experiences of nurse-led serious illness conversations and their engagement in discussions about goals and future care.

Methods

Study design

This mixed-methods convergent study was conducted between July 2021 and June 2022 at four sites within a large health care system located in Greater Boston. We used mixed methods to explore patient engagement and readiness to discuss goals and future care through surveys and patients’ experiences with nurse-led conversations through semi-structured interviews. Quantitative and qualitative data were collected in parallel with equal priority, and findings were integrated to provide a more comprehensive understanding of patient experiences with nurse-led serious illness conversations. Constructs and measures are summarized in Supplementary Data S1. This study received approval from the Institutional Review Board, and reporting followed the Good Reporting of a Mixed Methods Study and the Consolidated Criteria for Reporting Qualitative Research (Supplementary Data S3 and S4).^35,36

Study participants and recruitment

Adults aged ≥18 years who had received a nurse-led serious illness conversation within the prior three months were eligible if they self-identified as Black, Hispanic/Latino, or Native American and Alaska Native patients and spoke English, Spanish, or Haitian Creole. Nurse-led conversations were conducted by either Integrated Care Management Program registered nurse care coordinators or palliative care nurse practitioners, in person or virtually. We used purposive sampling to capture a range of experiences across gender, race and ethnicity, and preferred language. Eligible patients were identified through a serious illness conversation dashboard and referrals from nurse care coordinators. Study staff mailed recruitment letters and conducted follow-up calls to provide additional information and confirm interest. Recruitment calls for non-English-speaking patients used an institutionally approved, Health Insurance Portability and Accountability Act-compliant interpretation service.

Data collection

Trained nonclinician researchers (MTK [masami tabata-kelly] , EK, CS [Christina Sheu]) conducted virtual interviews with participants. To ensure consistency, interviewers completed mock interviews, and the principal investigator (R.E.B.) reviewed the first interview conducted by each interviewer. Interviewers shared brief summaries with the research team after each interview.

Each interview included two components: an interviewer-administered survey (∼15 minutes) and a semi-structured interview (∼30 minutes). Interviewers introduced themselves as trained researchers not involved in participants’ clinical care. The interview guide and survey questionnaires were professionally translated. For Spanish-speaking participants, a trained Spanish interpreter (BL) was used; for Haitian Creole-speaking participants, a third-party telephone interpreter was used. Charlson Comorbidity Index scores³⁷ were calculated using diagnostic codes from the two years preceding the serious illness conversation.³⁸

The validated, 15-item Advance Care Planning Engagement Survey³⁹ was utilized to measure advance care planning (ACP) self-efficacy and readiness across four topics: (1) medical decision makers or surrogates, (2) deciding what matters most in life, (3) flexibility for a medical decision maker, and (4) asking doctors questions. Items were scored on a 5-point Likert scale, with higher scores indicating greater ACP engagement. The survey has been validated in English and Spanish but not in Haitian Creole.⁴⁰ Missing, refused, and “not sure” responses were excluded from mean score calculations.

The 5-item Serious Illness Conversation Patient Experience Survey^41–44 assessed how worthwhile patients found the conversation and its impact on hopefulness, closeness with the clinician, sense of control over medical decisions, and understanding of their health. Worthwhileness was rated on a 4-point scale (4 = extremely worthwhile), and the remaining four items were rated on a 7-point scale (1 = decreased a lot to 7 = increased a lot). The “Heard and Understood” item used a 5-point scale to assess how much the conversation helped patients feel heard and understood, with higher scores indicating that patients felt more heard and understood.⁴⁴

The 4-item BRIEF Health Literacy Screening Tool⁴⁵ was used to characterize the level of health literacy among the study sample, with items scored on a 5-point scale and summed to obtain a total score, where higher scores indicate greater health literacy.

The interview guide was iteratively developed with input from the research staff and principal investigators (Supplementary Data S1) and focused on the acceptability of nurse-led serious illness conversations and barriers and facilitators to engagement. Study participants were asked to reflect on their most recent nurse-led serious illness conversation.

Survey data were collected using Research Electronic Data Capture.⁴⁶ Interviews were audio-recorded and transcribed by an independent transcription service. Participants received a $50 gift card.

Data analysis

Descriptive statistics summarized demographic and survey data using frequencies and percentages for categorical variables and means with standard deviations (SDs) for continuous variables. Missing data were excluded.

Qualitative data were coded using ATLAS.ti. We used a framework approach,⁴⁷ with an initial coding structure informed by survey domains and iterative refinement of codes through team discussion (M.T.-K., C.S., A.L.B.). Inductive analysis was then conducted to identify themes from participant experiences.⁴⁷ To develop integrated meta-themes, we used a pillar-building approach to examine convergence and complementarity between survey and qualitative findings.⁴⁸

Results

Participant characteristics

A total of 126 potentially eligible patients were identified. Of these, 81 were excluded due to being unapproachable, death during the study window, or other reasons (Supplementary Data S2). Among the remaining 45 eligible patients who were approached, 30 declined participation for various reasons, including health-related reasons, being too busy or overwhelmed, or lack of interest (Supplementary Data S2). A total of 15 participants enrolled in the study, corresponding to an enrollment rate of 33.3%. Survey questions were completed by 13 of 15 participants, with two participating only in interviews. Mean participant age was 63 years, with 47% (7 out of 15) identifying as female. Sixty-seven percent (10 out of 15) identified as Black, and 27% (4 out of 15) identified as Hispanic/Latino. Twenty-seven percent (4 out of 15) reported a primary language other than English (n = 3 Spanish, n = 1 Haitian Creole). Nearly half (47%; 7 out of 15) had a high school diploma or less, and 42% (5 out of 12) reported annual household income below $35,000. Mean BRIEF Health Literacy score was 13 (SD: 5.69), indicating a marginal level of health literacy. Additional participant characteristics are presented in Table 1.

Table 1.

Study Participants’ Characteristics (N = 15)

Characteristics	Patients (N = 15)
Age, mean (SD)	63.5 (13.3)
Female, n (%)	7 (46.7%)
Race and ethnicity, n (%)
Black/African American	10 (66.7%)
Other^a	5 (33.3%)
Hispanic/Latino, n (%)	4 (26.7%)
Immigrant, n (%)	8 (53.3%)
Years lived in the United States, mean (SD)^b	35.13 (18.1)
Primary language, n (%)
English	11 (73.3%)
Spanish	3 (20.0%)
Haitian Creole	1 (6.7%)
Educational attainment, n (%)
High school diploma or less	7 (46.7%)
Some college	4 (26.7%)
College or university degree	4 (26.7%)
Household annual income, n (%)^c
Under $35,000	5 (41.7%)
$35,000–$49,999	2 (16.7%)
$50,000–$74,999	5 (41.7%)
BRIEF Health Literacy^d
Total score, mean (SD)	13.3 (5.7)
Inadequate, n (%)	5 (35.7%)
Marginal, n (%)	4 (28.6%)
Adequate, n (%)	5 (35.7%)
Charlson Comorbidity Index score, n (%)
Mean (SD)	7.1 (2.5)
1–2 (mild comorbidity)	1 (7.1%)
3–4 (moderate comorbidity)	0 (0.0%)
5 and greater (severe comorbidity)	14 (93.3%)
Clinician type
RN	3 (20%)
NP	12 (80%)
Care setting
Outpatient	3 (20%)
Inpatient	12 (80%)
Modality of serious illness conversations
Virtual	3 (20%)
In-person	12 (80%)
Days between SIC and interview
Mean (SD)	48.7 (22.6)
Median	47

n = 4 reported as “Latino/a or Hispanic,” and n = 1 reported as “Haitian.”

Only those born outside of the United States.

n = 3 missing due to participants’ preference not to answer|median household income in Massachusetts was approximately $104,000 (U.S. Census Bureau, 2020–2024).⁴⁹

n = 1 missing. The BRIEF health literacy score ranged from 4 to 20, with inadequate being 12 and lower, marginal being 13–16, and adequate being 17 and higher.

SD, standard deviation; ICU, intensive care unit; IQR, interquartile range; RN, registered nurse; NP, nurse practitioner; SIC, serious illness conversation.

Survey results

15-item ACP Engagement Survey

The mean total score for the ACP Engagement Survey was 4.07 (SD: 0.56), with subscale means of 4.35 (SD: 0.18) for self-efficacy and 3.40 (SD: 0.33) for readiness (Table 2).

Table 2.

Fifteen-Item Advance Care Planning Engagement Survey (n = 13)^a

Question	Mean (SD)	Refused/Not sure
ACP engagement survey, total score	4.07 (0.56)	NA
How confident are you that today, you could…^b
Medical decision makers
Ask someone to be your medical decision maker?	4.67 (0.19)	1 (7.7%)
What matters most in life
Talk with your medical decision maker about the care you would want if you were very sick or near the end of life?	4.00 (0.41)	0 (0.0%)
Talk with your medical providers about the care you would want if you were very sick or near the end of life?	4.25 (0.39)	1 (7.7%)
Flexibility
Talk with your medical decision maker about how much flexibility you want to give them?	4.42 (0.43)	1 (7.7%)
Talk with your medical providers about how much flexibility you want to give your medical decision maker?	4.18 (0.33)	2 (15.4%)
Asking your doctor questions
Ask the right questions of your medical providers to help make good medical decisions?	4.33 (0.31)	1 (7.7%)
ACP self-efficacy subscale	4.35 (0.18)
How ready are you to…^b
Medical decision makers
Formally ask someone to be your medical decision maker?	3.83 (0.41)	1 (7.7%)
Talk with your medical provider about who you want your medical decision maker to be?	3.83 (0.47)	1 (7.7%)
Sign official papers naming a person or group of people to make medical decisions for you?	3.25 (0.51)	1 (7.7%)
What matters most in life
Talk with your medical decision maker about the kind of medical care you would want if you were very sick or near the end of life?	3.27 (0.47)	2 (15.4%)
Talk with your medical providers about the kind of medical care you would want if you were very sick or near the end of life?	3.22 (0.52)	3 (23.1%)
Sign official papers expressing your wishes about the kind of medical care you would want if you were very sick or near the end of life?	3.00 (0.46)	1 (7.7%)
Flexibility
Talk with your medical decision maker about how much flexibility you want to give them?	3.00 (0.49)	1 (7.7%)
Talk with your medical providers about how much flexibility you want to give your decision maker?	3.41 (0.45)	1 (7.7%)
Asking your doctor questions
Ask your medical providers questions to help you make a good medical decision?	3.75 (0.41)	1 (7.7%)
ACP readiness subscale	3.40 (0.33)

“Refused/Not sure” responses were excluded from the mean score.

ACP self-efficacy response scale: 1 (not at all confident) to 5 (extremely confident); ACP readiness response scale: 1 (I have never thought about it) to 5 (I have already done it).

ACP, advance care planning.

Patient Experience Survey and Heard and Understood Item

Participants generally found serious illness conversations worthwhile, with 46% (6 out of 13) rating them as extremely worthwhile (Fig. 1). Participants also reported that the conversation increased their hopefulness about quality of life (54%; 7 out of 13), closeness with their clinician (46%; 6 out of 13), sense of control over medical decisions (50%; 6 out of 12), and understanding of illness trajectory (58%; 7 out of 12; Fig. 2). The mean “Heard and Understood” score was 3, indicating moderate level of feeling heard and understood (Fig. 3).

FIG. 1.

Serious Illness Conversation Patient Experience Survey Panel A (n = 13).

FIG. 2.

Serious Illness Conversation Patient Experience Survey Panel B (n = 13).

FIG. 3.

Heard and Understood Item (n = 13).

Integrated meta themes

Participants found nurse-led serious illness conversations helpful and valued discussing their values, goals, and wishes with nurses. ACP engagement and self-efficacy scores were high (above 4 out of 5), whereas readiness scores were lower. Integrating survey and qualitative findings, we identified three overarching meta-themes shaping participants’ experiences (Table 3). The research team discussed and determined that thematic saturation had been reached, as no additional themes emerged from the data.

Table 3.

Joint Display of Integrated Findings on Patient Experiences of Nurse-Led Serious Illness Conversations

Integrated meta-theme	Measure	Quantitative findings	Interview findings/Illustrative quotes
Relational factors as the foundation for comfort and confidence in discussing goals and future care	Closeness with clinician	46% reported greater closeness	“I’m really comfortable to talk with them, because since at the door they put a smile on their face, they make me comfortable to talk with them.”—P24, Male, Black, Haitian Creole“It’s almost like you have a lot on your chest, on your plate. So then you were able to clear off the plate, so then you would be able to breathe a little better. You know what I mean. You’re like, ‘Okay, phew—at least somebody heard me say that part.’ Yeah.”—P71, Female, Black, English“I have gone through a lot of depression. I was pretty down with myself because I feel that I was all alone. And that conversation–well, actually, when you guys called me back about having that conversation, you made me feel a little better because somebody’s listening.”—P86, Male, Black, English
	Feeling heard and understood	Mean score: 3 (out of 5)
	ACP self-efficacy	Mean score: 4.07 (out of 5)
Emotional processing and fostering understanding of future health	Hopefulness about quality of life	54% reported increased	“I felt it’s helpful to have those discussions and to be realistic about things and what can happen and what you want to get out of it”—P7, Male, Black, English (with NP, inpatient)“I did really appreciate how the nurse, how she talked to me, how she helped me grow with that disease, because I didn’t know anything about it. I heard of it, but I never thought that I would have it.”—P24, Male, Black, Haitian Creole“But initially, you’re not thinking about that until someone asks you. So I don’t know. I really didn’t have any goals or plans until she kind of asked me and kind of put that thought in your mind. And then you come up with something because you think about it a little bit more…. I think speaking about [goals and wishes for future care] and the what-ifs behind it. What if something goes wrong? What if I have six months to live? All those what-ifs. Very anxiety driven…. When I talk about something like that, I just feel sad and emotional, that’s it.”—P31, Female, Latino, English
	Understanding future health	58% reported improved
Immediate concerns and unmet needs shaping readiness to discuss goals and future care	ACP readiness	Mean score: 3.40 (out of 5)	“I thought it was odd because I wasn’t even really thinking about goals and plans… So when I get asked these questions, to me, I’m like, I don’t really care about a goal and a plan, honestly. I just want to—I just want to be better. I want someone to make me better, and I want someone to help me be pain free…. And I just sometimes don’t want to talk about something extra… I was just overwhelmed with everything.”—P31, Female, Latino, English“I’m anxious because I don’t have the financial for that, for what I want. But at least knowing that, hey, I can set a budget little by little.”—P1, Female, Black, English

Theme 1: Relational factors as the foundation for comfort and confidence in discussing goals and future care

Participants shared their experiences with serious illness conversations by describing how their nurses made them feel comfortable. They described how nurses’ demeanor helped them feel comfortable engaging in serious illness conversations:

“I felt like she seemed very sincere, and she listened to everything I had to say, which obviously, is very helpful when you try to explain your situation. So yeah, in that sense I thought she was very helpful. I thought she listened, and I thought she gave good advice.”—P25, Male, Black, English

Participants also reflected on the therapeutic effects of feeling heard:

“If you talk to somebody and the way they treat you, then you feel good.”—P27, Male, Latino, Spanish

These experiences illustrated how nurses’ compassionate demeanor and active listening shaped participants’ experiences with serious illness conversations.

Theme 2: Emotional processing and fostering understanding of future health

Engaging in serious illness conversations elicited a wide array of emotions. Many described the experience as “hard,” “uncomfortable,” “weird,” “unsettling,” “stressful,” “anxious,” and “sad.” Despite the intensity of these emotions, participants noted that the conversations provided a space to process their feelings and reflect on their illness and future care:

“It was hard. It was emotional for me. Hard, emotional. Just tough. I broke down a couple of times. I broke down probably for the whole conversation we were having. It was just hard. I’d say it was just hard.”—P31, Female, Latino, English

Another participant also expressed:

“It felt okay, but then on the other hand it felt unsettling because of talking about your health and what may happen.”—P7, Male, Black, English

Retrospectively, participants came to recognize the value of this emotional processing as an essential step toward greater readiness and understanding:

“I would say that the conversation was definitely uncomfortable, but sometimes you need to have those uncomfortable conversations…. We’ve come to terms with it more as the conversation is repeatedly brought up, I guess.”—P1, Female, Black, English

Participants also described how nurse-led conversations supported them not only in grappling with difficult emotions but also in developing a clearer understanding of their illness and future priorities:

“She helped me to go through that difficult time, where with that disease, most of the times they would tell you there’s no cure for it, where a lot of people would die from it. But they helped me to understand it and live happy with it.”—P24, Female, Black, Haitian Creole

Nurse-led conversations initially evoked discomfort and strong emotions, but they eventually helped participants feel more ready to consider future care and develop a better understanding of their illness trajectory at their own pace.

Theme 3: Immediate concerns and unmet needs shaping readiness to discuss goals and future care

Participants’ experiences highlighted how immediate concerns, such as physical pain and important personal plans, occupied their thoughts. Many expressed feeling unready to discuss goals or future care because physical pain and emotional distress left them overwhelmed:

“I thought it was odd because I wasn’t even really thinking about goals and plans… So when I get asked these questions, to me, I’m like, I don’t really care about a goal and a plan, honestly. I just want to– I just want to be better. I want someone to make me better, and I want someone to help me be pain free…. And I just sometimes don’t want to talk about something extra… I was just overwhelmed with everything.”—P31, Female, Latino, English

For some, financial constraints prompted reflection on their goals and a desire to make decisions in a way that would not burden their family members. One participant shared:

“I’m anxious because I don’t have the financial for what I want…. I’ve seen a lot of elderly dying from COVID and sickness, and their family probably already buy their plot 20 years ago…. I feel like for me, I don’t have those kind of money some people have or whatever thing. But it’s good for me to know that I’m not having my kids tossing their heads left and right…. So I need to act on what I would want, not what they can provide for me.”—P1, Female, Black, English

Participants also expressed existential distress:

“I wanted to hurry up and get it (conversation) over with because I really don’t like talking about myself…. I can’t see myself dying. I don’t want that…. I was such an outgoing person, physically fit. And just being the way I am, very depressive.”—P86, Male, Black, English

These experiences illustrated how multifaceted and salient concerns and needs shaped readiness to engage in serious illness conversations.

Discussion

This mixed-methods study explored the experiences of racially and ethnically marginalized patients with nurse-led serious illness conversations. We identified three integrated themes showing that relational factors fostered comfort and confidence in discussing goals and future care; conversations created space for emotional processing and a better understanding of future health; and immediate concerns and unmet needs shaped patients’ readiness to engage. These themes were interdependent, with feeling “heard and understood” central across all three. While survey results suggested increased confidence, readiness scores and qualitative findings showed that this did not always translate into action when immediate concerns and emotional distress were present.

Patients’ perspectives on serious illness conversations have been increasingly explored, with growing efforts to elevate the voices of racially and ethnically marginalized communities. Consistent with prior studies highlighting the importance of relational aspects, participants similarly valued these aspects in our study. Patients were willing to engage in nurse-led serious illness conversations primarily because of nurses’ relational communication approaches that helped them feel at ease.^41,50,51

Our finding that immediate concerns and needs shaped patients’ readiness to engage in conversations aligns with prior research.⁵² We extend this work by demonstrating how multifaceted distress and concerns, particularly among patients from marginalized communities, serve as critical contextual factors shaping readiness. Although nurse-led serious illness conversations fostered confidence in discussing goals and future care, that confidence did not consistently translate into readiness to engage. This is similar to prior findings from nurse-led models of serious illness conversations in emergency department settings, which improved documentation of conversations but not patients’ readiness to engage in ACP.²³ Participants in our study described feeling overwhelmed by multilayered stressors that made it harder to engage in serious illness conversations. A growing body of literature suggests that interdisciplinary, team-based approaches may help mitigate these challenges.^53,54 For example, a nurse- and social worker–led multicomponent intervention integrating serious illness conversations with symptom management and psychosocial support improved ACP readiness.²⁴ As such, to support ACP engagement, strategies should include tailored, personalized approaches that are attentive to individuals’ social and personal contexts and address immediate needs.^22,54,55 A systematic review of ACP interventions for vulnerable adult populations across eight countries also highlighted the importance of holistic, personalized, relational, and trust-building approaches that are attentive to individuals’ health literacy.⁵⁶ In line with this, a recent study of ACP interventions similarly emphasized the need for culturally tailored strategies to support equitable ACP engagement.²⁵ Our prior work examining nurses’ perspectives on conducting serious illness conversations with racially and ethnically marginalized patients also identified the importance of addressing unmet needs and approaching conversations with cultural humility.²² Future studies can further explore multifaceted distress as a potential moderating factor and evaluate multicomponent interventions that combine serious illness conversations training with interdisciplinary collaboration, supportive resources, and culturally tailored approaches.^57,58

Our study cohort reflects not only racially and ethnically marginalized patients but also intersects with social vulnerability, with about half having a high school diploma or less and limited health literacy. Individuals from socially marginalized backgrounds remain underrepresented in serious illness care research.^34,59–61 Research that better captures and reflects the experiences of this population plays a critical role in developing and implementing serious illness care interventions and practices that address socioeconomic, cultural, and linguistic needs.^62–65

Prior studies note that nurses often face challenges in discussing prognostic information because of role ambiguity, emotional tensions, and limited training.^66–68 In our study, most participants reported improved understanding of their illness trajectory after nurse-led conversations, suggesting greater awareness of functional prognosis.⁶⁹ With appropriate training and support, nurses can leverage their relational strengths to revisit these conversations and foster better functional prognostic understanding. Therefore, future studies should explore this pathway as a potential mechanism for improving patient- and family-centered outcomes and for addressing multilevel factors, including serious illness communication skills, documentation workflows, and team-based care processes.^17,51,70,71

This study has several limitations. It was conducted within a single health system, which may limit generalizability. We recognize that registered nurse care coordinators and nurse practitioners differ in training, roles, and clinical context (outpatient vs. inpatient), which may shape how they conduct serious illness conversations. However, our analysis focused on shared patient experiences across nurse-led conversations. This study did not focus on a specific serious illness but instead sought to capture broad perspectives from individuals living with serious illness; therefore, the applicability of these findings to specific conditions requires further study. We did not collect information on whether participants had previously received prognostic information from their physicians. Although nurse-led serious illness conversations were conducted in the context of interdisciplinary care practice, in which nurses often include elements related to prognostic information, prior exposure to physician-led prognostic discussions may have varied. This study reflects the experiences of a relatively small sample of seriously ill patients from racially and ethnically marginalized communities, which may limit generalizability of the findings. Barriers to participation, including health-related challenges, are consistent with those previously reported in recruiting seriously ill populations.⁷² To support the inclusion of racially and ethnically marginalized populations, future research may benefit from community-engaged and relationship-centered recruitment strategies.^73,74 Finally, our study did not fully capture the diverse array of experiences among racially and ethnically marginalized populations, including groups such as Native American and Alaska Native patients, individuals with non-English language preference, and recent immigrants, whose inclusion remains critical to advancing serious illness communication research.^61,75,76 Importantly, participants in this study represent a socially vulnerable population with limited health literacy, lower educational attainment, and economic disadvantage, which have shaped their engagement and experiences in serious illness conversations.

Conclusions

Nurse-led serious illness conversations facilitated greater confidence among racially and ethnically marginalized patients to engage in discussions about their goals and future care and fostered a better understanding of their future health. Interdisciplinary collaboration to address multifaceted distress, along with expanded nurse training in serious illness communication, is needed to support readiness.

Authors’ Contributions

M.T.-K.: Conceptualization, data curation, formal analysis, investigation, methodology, project administration, software, visualization, writing—original draft preparation, and writing—review and editing. C.S.: Data curation, formal analysis, investigation, software, visualization, writing—original draft preparation, and writing—review and editing. A.L.B.: Funding acquisition, investigation, methodology, supervision, and writing—review and editing. M.R.: Formal analysis. K.B.: Supervision. T.F.G., B.J.H., and L.W.: Resources and writing—review and editing. R.E.B.: Formal analysis, funding acquisition, investigation, methodology, resources, supervision, validation, and writing—review and editing.

Ethical Approval and Informed Consent Statement

This study was approved by the Institutional Review Board of Mass General Brigham (#2021P001220). All participants provided verbal informed consent prior to participation.

Data Availability Statement

To protect the confidentiality of study participants’ data, raw data will remain confidential and will not be shared. Data will not be publicly available. All data reported within the article have been anonymized and de-identified.

Footnotes

Acknowledgments

The authors would like to express their gratitude to Emma Kerr, Dr. Muhammad Abbas, and Jeenn Alain Barreiro-Rosado for their project administrative support. The authors thank Dr. Erica Wilson, Dr. Coleen Reid, Dr. Kosha S. Thakore, and Dr. Dany Hilaire for their support and guidance in recruitment and extend their appreciation to Belin Lazaro for her support with Spanish interpretation. The authors also express appreciation to Dr. Jolie Haun and her team for generously providing the Spanish translation of the BRIEF Health Literacy Screen Tool for this study. The authors further extend their appreciation to Dr. Joanna M. Paladino and Ariadne Labs for providing the Serious Illness Conversation Patient Experience Survey for use in this study. The authors acknowledge Haley Szewczuga, a Science Writer/Editor at the Dana-Farber Cancer Institute, for her support in the preparation of this article.

Author Disclosure Statement

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding Information

The authors disclose the receipt of the following financial support for research, authorship, and/or publication of this article: the Rita and Alex Hillman Foundation.

Supplemental Material

References

1. Bernacki

, Block

, for the American College of Physicians High Value Care Task Force. Communication about serious illness care goals: A review and synthesis of best practices. JAMA Intern Med 2014;174(12):1994–2003.

2. Wright

, Zhang

, Ray

, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300(14):1665–1673.

3. Mack

, Weeks

, Wright

, et al. End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 2010;28(7):1203–1208.

4. Mack

, Cronin

, Keating

, et al. Associations between end-of-life discussion characteristics and care received near death: A prospective cohort study. J Clin Oncol 2012;30(35):4387–4395.

5. Leung

, Udris

, Uman

, Au

. The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest 2012;142(1):128–133.

6. Wright

, Keating

, Ayanian

, et al. Family perspectives on aggressive cancer care near the end of life. JAMA 2016;315(3):284–292.

7. Mack

, Cronin

, Taback

, et al. End-of-life care discussions among patients with advanced cancer: A cohort study. Ann Intern Med 2012;156(3):204–210.

8. Epstein

, Riley

, Nelson

, et al. Goals of care documentation by medical oncologists and oncology patient end-of-life care outcomes. Cancer 2022;128(18):3400–3407.

9. Heyland

, Allan

, Rocker

, Canadian Researchers at the End-of-Life Network (CARENET). et al. Discussing prognosis with patients and their families near the end of life: Impact on satisfaction with end-of-life care. Open Med 2009;3(2):e101–e110.

10.

10. Teno

, Gruneir

, Schwartz

, et al. Association between advance directives and quality of end‐of‐life care: A national study. J Am Geriatr Soc 2007;55(2):189–194.

11.

11. Bernacki

, Hutchings

, Vick

, et al. Development of the Serious Illness Care Program: A randomised controlled trial of a palliative care communication intervention. BMJ Open 2015;5(10):e009032.

12.

12. Bernacki

, Paladino

, Neville

, et al. Effect of the serious illness care program in outpatient oncology: A cluster randomized clinical trial. JAMA Intern Med 2019;179(6):751–759.

13.

13. Paladino

, Bernacki

, Neville

, et al. Evaluating an intervention to improve communication between oncology clinicians and patients with life-limiting cancer: A cluster randomized clinical trial of the Serious Illness Care Program. JAMA Oncol 2019;5(6):801–809.

14.

14. Paladino

, Koritsanszky

, Neal

, et al. Effect of the serious illness care program on health care utilization at the end of life for patients with cancer. J Palliat Med 2020;23(10):1365–1369.

15.

15. Wilson

, Bernacki

, Lakin

, et al. Rapid adoption of a serious illness conversation electronic medical record template: Lessons learned and future directions. J Palliat Med 2020;23(2):159–161.

16.

16. Beddard-Huber

, Strachan

, Brown

, et al. Supporting interprofessional engagement in serious illness conversations: An adapted resource. J Hosp Palliat Nurs 2021;23(1):38–45.

17.

17. Lally

, Tuya Fulton

, Ducharme

, et al. Using nurse care managers trained in the Serious Illness Conversation Guide to increase goals-of-care conversations in an accountable care organization. J Palliat Med 2020;23(1):112–115.

18.

18. Cretu

, Torabi

, Stilos

. Palliative care advanced practice nurse role in engaging in serious illness conversations. Can Oncol Nurs J 2023;33(3):377–382.

19.

19. Wittenberg

, Goldsmith

, Chen

, Prince-Paul

. A conceptual model of the nurse’s role as primary palliative care provider in goals of care communication. Pec Innov 2024;4:100254.

20.

20. Fliedner

, Halfens

, King

, et al. Roles and responsibilities of nurses in advance care planning in palliative care in the acute care setting: A scoping review. J Hosp Palliat Nurs 2021;23(1):59–68.

21.

21. Starr

, O’Connor

, Meghani

. Improved serious illness communication may help mitigate racial disparities in care among Black Americans with COVID-19. J Gen Intern Med 2021;36(4):1071–1076.

22.

22. Tabata-Kelly

, Bulger

, Reich

, et al. Nurses’ experiences of serious illness conversations with marginalized patients in COVID-19. J Pain Symptom Manage 2026;71(1):24–42.

23.

23. Ouchi

, Block

, Rentz

, et al. Serious illness conversations in the emergency department for older adults with advanced illnesses: A randomized clinical trial. JAMA Netw Open 2025;8(6):e2516582.

24.

24. Lange

, Feser

, Hess

, et al. Serious illness communication in a randomized trial of a nurse and social worker palliative telecare team. J Am Geriatr Soc 2025;73(7):2181–2187.

25.

25. Ejem

, Platt

, Rhodes

, et al. Predictors of readiness to engage in advance care planning among older adults with serious illness: Baseline findings from the EQUAL ACP Study. J Am Geriatr Soc 2026;74(4):1012–1024.

26.

26. Abbas

, Chua

, Tabata-Kelly

, et al. Racial and ethnic disparities in serious illness conversation quality during the COVID-19 pandemic. J Pain Symptom Manage 2024;68(3):205–213.e6.

27.

27. Johnson

. Racial and ethnic disparities in palliative care. J Palliat Med 2013;16(11):1329–1334.

28.

28. Johnson

, Bullock

, Smith

, et al. Evaluation of reporting of race and ethnicity in hospice and palliative care research. J Palliat Med 2025;28(6):708–715.

29.

29. Moore

, Ricaldi

, Rose

, et al. Disparities in incidence of COVID-19 among underrepresented racial/ethnic groups in counties identified as hotspots during June 5–18, 2020—22 states, February–June 2020. MMWR 2020;69(33):1122–1126.

30.

30. Rhodes

, Barrett

, Ejem

, et al. A review of race and ethnicity in hospice and palliative medicine research: Representation matters. J Pain Symptom Manage 2022;64(5):e289–e299.

31.

31. Hanchate

, Kronman

, Young-Xu

, et al. Racial and ethnic differences in end-of-life costs: Why do minorities cost more than Whites? Arch Intern Med 2009;169(5):493–501.

32.

32.National Center for Health Statistics (US). Health, United States, 2010: With Special Feature on Death and Dying. National Center for Health Statistics: Hyattsville (MD); 2011. http://www.ncbi.nlm.nih.gov/books/NBK54381/

33.

33. Crooks

, Trotter

, Obe

, Patient Public Involvement Consortium. et al. How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review. BMC Palliat Care 2023;22(1):43.

34.

34. Sítima

, Galhardo-Branco

, Reis-Pina

. Equity of access to palliative care: A scoping review. Int J Equity Health 2024;23(1):248.

35.

35. O’cathain

, Murphy

, Nicholl

. The quality of mixed methods studies in health services research. J Health Serv Res Policy 2008;13(2):92–98.

36.

36. Tong

, Sainsbury

, Craig

. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19(6):349–357.

37.

37. Charlson

, Pompei

, Ales

, MacKenzie

. A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. J Chronic Dis 1987;40(5):373–383.

38.

38. Sundararajan

, Henderson

, Perry

, et al. New ICD-10 version of the Charlson comorbidity index predicted in-hospital mortality. J Clin Epidemiol 2004;57(12):1288–1294.

39.

39. Sudore

, Heyland

, Barnes

, et al. Measuring advance care planning: Optimizing the Advance Care Planning Engagement Survey. J Pain Symptom Manage 2017;53(4):669–681.e8.

40.

40. Shi

, Barnes

, Boscardin

, et al. Brief English and Spanish Survey detects change in response to advance care planning interventions. J Pain Symptom Manage 2019;58(6):1068–1074.e5.

41.

41. Paladino

, Koritsanszky

, Nisotel

, et al. Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis. Cancer Med 2020;9(13):4550–4560.

42.

42. Sanders

, Durieux

, Cannady

, et al. Acceptability of a Serious Illness Conversation Guide to Black Americans: Results from a focus group and oncology pilot study. Palliat Support Care 2023;21(5):788–797.

43.

43. Kumar

, Wixon-Genack

, Kavanagh

, et al. Serious illness conversations with outpatient oncology clinicians: Understanding the patient experience. JCO Oncol Pract 2020;16(12):e1507–e1515.

44.

44. Gramling

, Stanek

, Ladwig

, AAHPM Research Committee Writing Group. et al. Feeling heard and understood: A patient-reported quality measure for the inpatient palliative care setting. J Pain Symptom Manage 2016;51(2):150–154.

45.

45. Haun

, Luther

, Dodd

, Donaldson

. Measurement variation across health literacy assessments: Implications for assessment selection in research and practice. J Health Commun 2012;17(Suppl 3):141–159.

46.

46. Harris

, Taylor

, Thielke

, et al. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009;42(2):377–381.

47.

47. Gale

, Heath

, Cameron

, et al. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 2013;13(1):117.

48.

48. Johnson

, Grove

, Clarke

. Pillar integration process: A joint display technique to integrate data in mixed methods research. J Mix Methods Res 2019;13(3):301–320.

49.

49.United States Census Bureau. QuickFacts Massachusetts | Online. Available from: https://www.census.gov/quickfacts/fact/table/MA/INC110224 [Last accessed: March 25, 2026].

50.

50. Myrhøj

, Viftrup

, Jarden

, Clemmensen

. Interdisciplinary collaboration in serious illness conversations in patients with multiple myeloma and caregivers–a qualitative study. BMC Palliat Care 2023;22(1):93.

51.

51. Lally

, Fulton

, Baxter

, et al. Expanding the serious illness care team: The Conversation Nurse Model. Health Aff Forefront 2018.

52.

52. Hanley

, Cotner

, Fenton

, et al. Barriers to serious illness conversations among patients with advanced cancer: A qualitative study. J Pain Symptom Manage 2025;69(2):183–189.e4.

53.

53. Bernal

, Roberts

, Wu

. Interprofessional interventions to improve serious illness communication in the intensive care unit: A scoping review. Am J Hosp Palliat Care 2023;40(7):765–777.

54.

54. Baxter

, Pusa

, Andersson

, et al. Core elements of serious illness conversations: An integrative systematic review. BMJ Support Palliat Care 2024;14(e3):e2268–2279–e2279.

55.

55. Swiderski

, Georgia

, Chuang

, et al. “I was not able to keep myself away from tending to her immediate needs”: Primary care physicians’ perspectives of serious illness conversations at community health centers. J Gen Intern Med 2022;37(1):130–136.

56.

56. Brean

, Recoche

, William

, et al. Advance care plans for vulnerable and disadvantaged adults: Systematic review and narrative synthesis. BMJ Support Palliat Care 2023;14(e1):e200–e210.

57.

57. Couturier

, Lanoue

, Karam

, et al. Social workers coordination in primary healthcare for patients with complex needs: A scoping review. Int J Care Coord 2023;26(1):5–25.

58.

58. Rangachari

, Thapa

, Sherpa

, et al. Characteristics of hospital and health system initiatives to address social determinants of health in the United States: A scoping review of the peer-reviewed literature. Front Public Health 2024;12:1413205.

59.

59. Oduro

, Jackson

, Fu

, Carpenter

. Palliative care experiences among adults from underrepresented racial and ethnic groups in the United States: A scoping review. Am J Hosp Palliat Care 2025;42(8):735–745.

60.

60. Varilek

, Doyon

, Vacek

, Isaacson

. Palliative and end-of-life care interventions with minoritized populations in the US with serious illness: A scoping review. Am J Hosp Palliat Care 2025;42(1):112–120.

61.

61. Sy

, Ritchie

, Vranceanu

, Bakhshaie

. Palliative care clinical trials in underrepresented ethnic and racial minorities: A narrative review. J Palliat Med 2024;27(5):688–698.

62.

62. Izumi

, Garcia

, Kualaau

, et al. Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles. PLoS One 2024;19(4):e0301426.

63.

63. Williams

, Casola

, Mechler

. Interpreting Difficult conversations—evaluating how to support medical interpreters in the delivery of serious news. J Palliat Med 2024;27(9):1210–1214.

64.

64. Ravicz

, Sullivan

, Aranga

, et al. Listening to many voices: Serious illness communication preferences among Black and Latino patients. J Pain Symptom Manage 2024;67(5):e528–e529.

65.

65. Joo

, Liu

. Effectiveness of culturally tailored interventions for chronic illnesses among ethnic minorities. West J Nurs Res 2020;43(1):73–84.

66.

66. Reinke

, Shannon

, Engelberg

, et al. Supporting hope and prognostic information: Nurses’ perspectives on their role when patients have life-limiting prognoses. J Pain Symptom Manage 2010;39(6):982–992.

67.

67. Wittenberg

, Goldsmith

, Buller

, et al. Oncology nurse communication training needs across the cancer continuum. Clin J Oncol Nurs 2019;23(1):82–91.

68.

68. Aslakson

, Wyskiel

, Thornton

, et al. Nurse-perceived barriers to effective communication regarding prognosis and optimal end-of-life care for surgical ICU patients: A qualitative exploration. J Palliat Med 2012;15(8):910–915.

69.

69. Paladino

, Lakin

, Sanders

. Communication strategies for sharing prognostic information with patients: Beyond survival statistics. JAMA 2019;322(14):1345–1346.

70.

70. Massmann

, Revier

, Ponto

. Implementing the serious illness care program in primary care. J Hosp Palliat Nurs 2019;21(4):291–299.

71.

71. Izumi

, Caron

, Guay-Bélanger

, et al. Development and evaluation of serious illness conversation training for interprofessional primary care teams. J Palliat Med 2023;26(9):1198–1206.

72.

72. Hanson

, Bull

, Wessell

, et al. Strategies to support recruitment of patients with life-limiting illness for research: The Palliative Care Research Cooperative Group. J Pain Symptom Manage 2014;48(6):1021–1030.

73.

73. Odedina

, Wieland

, Barbel-Johnson

, Crook

. Community engagement strategies for underrepresented racial and ethnic populations. Mayo Clin Proc 2024;99(1):159–171.

74.

74. LeBlanc

, Lodato

, Currow

, Abernethy

. Overcoming recruitment challenges in palliative care clinical trials. J Oncol Pract 2013;9(6):277–282.

75.

75. Lillie

, Dirks

, Curtis

, et al. Culturally adapting an advance care planning communication intervention with American Indian and Alaska Native People in primary care. J Transcult Nurs 2020;31(2):178–187.

76.

76. Jones

, Luth

, Lin

, Brody

. Advance care planning, palliative care, and end-of-life care interventions for racial and ethnic underrepresented groups: A systematic review. J Pain Symptom Manage 2021;62(3):e248–e260.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.08 MB