Original ArticlesGeriatric and Palliative Nephrology

Qualitative Interviews Exploring Palliative Care Perspectives of Latinos on Dialysis

Lilia Cervantes, Jacqueline Jones, Stuart Linas and Stacy Fischer
CJASN May 2017, 12 (5) 788-798; DOI: https://doi.org/10.2215/CJN.10260916

Abstract

Background and objectives Compared with non-Latino whites with advanced illness, Latinos are less likely to have an advance directive or to die with hospice services. To improve palliative care disparities, international ESRD guidelines call for increased research on culturally responsive communication of advance care planning (ACP). The objective of our study was to explore the preferences of Latino patients receiving dialysis regarding symptom management and ACP.

Design, setting, participants, & measurements Qualitative study design using semistructured face-to-face interviews of 20 Latinos on hemodialysis between February and July of 2015. Data were analyzed using thematic analysis.

Results Four themes were identified: Avoiding harms of medication (fear of addiction and damage to bodies, effective distractions, reliance on traditional remedies, fatalism: the sense that one’s illness is deserved punishment); barriers and facilitators to ACP: faith, family, and home (family group decision-making, family reluctance to have ACP conversations, flexible decision-making conversations at home with family, ACP conversations incorporating trust and linguistic congruency, family-first and faith-driven decisions); enhancing wellbeing day-to-day (supportive relationships, improved understanding of illness leads to adherence, recognizing new self-value, maintaining a positive outlook); and distressing aspects of living with their illness (dietary restriction is culturally isolating and challenging for families, logistic challenges and socioeconomic disadvantage compounded by health literacy and language barriers, required rapid adjustments to chronic illness, demanding dialysis schedule).

Conclusions Latinos described unique cultural preferences such as avoidance of medications for symptom alleviation and a preference to have family group decision-making and ACP conversations at home. Understanding and integrating cultural values and preferences into palliative care offers the potential to improve disparities and achieve quality patient-centered care for Latinos with advanced illness.

Introduction

Patients with ESRD have a debilitating symptom burden and high mortality, yet palliative care is often overlooked (1–3). This is especially true for United States Latinos, who in 2014 accounted for 17% of newly diagnosed patients with ESRD and are underrepresented in the existing palliative care ESRD research (4). An observational survey in 2010 found that Latinos with ESRD were less likely to engage in end-of-life conversations and less likely to have completed an advance directive compared with non-Latino whites (5). Our 2015 observational study reported that although the majority of Latinos wanted to discuss their quality of life, symptom management, prognosis, and end-of-life care, few reported a previous end-of-life conversation with their nephrology team (6). Latinos with other advanced illnesses are less likely to die with hospice services, more likely to die in a hospital setting, and less likely to receive adequate pain control compared with non-Latino whites (7–14).

Culture influences how a patient experiences their illness and affects decision-making. Yet little is known about how the cultural values of Latinos with ESRD inform preferences for care at the end of life. This is a necessary first step to ultimately address palliative care disparities for Latinos with ESRD.

The study objective was to use semistructured interviews to gather in-depth understanding of the palliative care preferences of Latino patients with ESRD around symptom management and advance care planning (ACP) conversations, to inform culturally congruent palliative care.

Materials and Methods

Study Design and Sample

We conducted a qualitative study using semistructured interviews with adult English or Spanish speaking Latinos that have ESRD and receive thrice weekly hemodialysis at two outpatient hemodialysis facilities in Denver, Colorado. Patients were excluded if they were non-Latino, unable to consent, pregnant, or under 18 years of age. The Colorado Multi-Institutional Review Board approved the study and all patients gave informed consent to participate. We used a purposive sampling strategy selecting equal numbers of female and male patients that met inclusion criteria as they presented at the dialysis center.

Interview Guide

The semistructured interviews included open-ended questions that explored symptom management, ACP conversations, and the circumstances that improve wellbeing as well as those that lead to distress (Supplemental Table 1) (15). The questions were developed after a comprehensive review of the literature that describes Latino end-of-life and ACP preferences. Additional probes were used throughout the interviews.

Data Collection and Analysis

The study principal investigator (L.C.) consented and interviewed eligible English or Spanish speaking participants face-to-face in the patient’s native language between February and July of 2015. Interviews were conducted chairside during hemodialysis, audio-recorded, professionally translated from Spanish to English, and then transcribed verbatim. Patient demographic data were collected from patient medical chart review. Data analysis commenced at the start of the first interview and was ongoing throughout all data collection. We used an emergent, iterative approach where we refined our questioning on the basis of our analysis of subsequent interviews. We continued interviews until our analysis revealed no new themes emerging (16,17). Data were analyzed using a team-based theme analysis. We used a consensus approach to inform theme analysis across team members as we looked for similarities and differences. When differences in interpretation arose, we pursued agreement through discussion. Atlas ti version 7.5.12 was used to analyze transcribed interviews.

Results

We interviewed 20 Latinos with ESRD. Participants had a mean age of 61±12 years (range 30–78), a mean Charlson Comorbidity Index of 7±2.3, and 50% were women. Sixteen (80%) were immigrants to the United States that had spent a mean 16.8±7.7 years in the United States. Mexico was the country of origin for 90% of participants. Interview length ranged from 52 to 84 minutes (mean 65 minutes) (Table 1). Participants described four themes: avoiding harms of medication; barriers and facilitators to ACP: faith, family, and home; enhancing wellbeing day-to-day; and distressing aspects of living with their illness (Table 2). A thematic schema illustrating the relationship between the themes is provided in Figure 1.

View this table:
Table 1.

Participant characteristics

View this table:
Table 2.

Themes and subthemes with illustrative quotes

Figure 1.
Figure 1.

Thematic schema.

Theme 1: Avoiding Harms of Medication

Fear of Addiction and Damage to Bodies.

Participants avoid medications prescribed for symptom alleviation. Their reasons are varied, and some describe previous negative experiences from unwanted side effects: “I believe that every medication has a side effect … if I can handle it, I will handle it.” Others feel that medications do not alleviate symptoms and can instead lead to further damage to their bodies. Two patients expressed how their families do not approve of opiates for fear they might lead to addiction. Rather than being open with their providers about avoiding medications, many participants accept paper prescriptions or pill bottles yet never take the medication.

Effective Distractions.

Instead of taking medication, participants spend time with family, keep themselves busy by working in the house, and do things they enjoy (e.g., playing the piano, listening to music) as preferred ways to distract themselves from symptoms: “(The provider) gave me some pills that I haven’t taken … when I feel really sad … I distract myself with my grandkids.”

Reliance on Traditional Remedies.

Many participants rely on home remedies and traditional healing. One participant described using herbal mixtures she had learned from her grandmother, and many participants spoke of using mixtures with lemon to relieve nausea. Participants report that they do not inform their health care providers about their preference for traditional remedies. Traditional Latino foods were also described as having medicinal properties.

Fatalism: Sense that One’s Illness Is Deserved Punishment.

Many patients feel that their current illness is punishment for their parents’ or their own past “bad” behavior. As such, they feel they “deserve” to suffer and do not want medications that might alleviate their suffering. When asked what he does to alleviate nausea discomfort, one patient responded, “I had a troubled life … Beat people up just for the hell of it … But I’m the one who’s got to pay for it … now I’m being punished.”

Theme 2: Barriers and Facilitators to ACP: Family, Faith, and Home

Family Group Decision-Making.

Some participants favor family group decision-making. One participant responded with, “my whole family,” when asked who he’d designate to make medical decisions for him. Participants who had not previously discussed ACP with family described leaving all decision-making to their families and trusting that their families would have their best interests in mind.

Family Reluctance to Have ACP Conversations.

During the qualitative interviews, participants expressed gratitude for the opportunity to discuss end-of-life care and ACP because these topics are often on their minds, yet they feel they can’t discuss them with family. They described how their families avoid these conversations for fear it will distress the participant. One participant said of her husband, “(He) doesn’t like to talk about that, he doesn’t want to hear anything about the disease … he gets sad and says, ‘… don’t you talk to me about that.’” Participants, however, feel these ACP conversations are necessary because they help their families understand the participants’ wishes and reduce future family medical decision–making anxiety. Participants also find the terminology confusing both because services, such as hospice, and advance directives (e.g., medical durable power of attorney, Do Not Resuscitate) are not available in their home countries and many terms don’t accurately translate from English to Spanish.

Flexible Decision-Making Conversations at Home with Family.

Participants prefer that ACP conversations occur at home, with a health care provider present, and at a flexible time so that family can be included: “At home over dinner … ’cause I think it would be better when everybody is around.” From their perspective, ACP conversations at home allow for more open and honest conversations that encourage their families to ask questions and share fears. Participants also feel apprehensive about initiating ACP conversations alone for fear it will upset their family; participants both welcome and appreciate the support. Participants prefer that ACP conversations occur a few months after they have been started on hemodialysis, giving them time to cope and adjust to their illness, but before they are very ill and can no longer participate.

ACP Conversations Incorporating Trust and Linguistic Congruency.

Participants prefer that the person guiding ACP conversations with families be someone with empathy. When asked to describe the ideal person that could guide these conversations, one participant said, “A person interested in how we feel … that would empathize.” Participants want someone who speaks their language, who understands their culture, who is willing to meet them at home, who explains the medical words they don’t understand, who gives them time to express their fears and frustrations, and who has personal experience in providing care or advice to patients with ESRD. Participants also want the person guiding ACP conversations to maintain a positive outlook and explicitly tell families that the reason for the ACP conversation is to plan ahead and not because the participant’s health is concerning.

Family-First and Faith-Driven Decisions.

Participants with previously signed advance directives described how their decision-making is grounded in what is best for their families. For example, participants who choose to receive cardiopulmonary resuscitation want their families to know they “died trying to the very end.” Those who choose Do Not Resuscitate do not want their families to have to “deal with a vegetable.” Some participants believe that signing an advance directive is not having faith in God because whether you live or die is God’s will; one participant explained, if “He created medicine to revive you, then you should have it done.” Other participants with faith in God feel that declining cardiopulmonary resuscitation aligns with God’s will because, “if your heart and lungs stop, it means God is ready for you to come home.”

Theme 3: Enhancing Wellbeing Day-to-Day

Supportive Relationships.

Sources of support reported by participants include family, friends, faith, health care providers, and fellow patients with ESRD. Family is the reason they continue hemodialysis, and they are able to cope with their illness because of family support with medications and dietary changes. Faith is an important source of support: many pray when symptomatic and have faith that death will occur when it’s God’s will. Participants also receive comfort from their health care provider and other patients with ESRD. Other patients are a strong source of support and participants wish such peer support relationships could be formalized early-on when they start hemodialysis so that they could learn “the ropes from someone who’s been through this.”

Improved Understanding of Illness Leads to Adherence.

Participants feel personally engaged and invested in their care (e.g., dietary restrictions, medications, and hemodialysis) once they understand that adherence to diet and hemodialysis leads to improved symptoms: “I’ve been trying to drink less water because at first when I drank lots of water, my legs would swell up, so I stop doing that. Salt too, I stopped using it … I’ve felt better.” Participants discussed how they skipped or shortened hemodialysis sessions and no longer do so because they feel physically better when they receive their full treatment. Better understanding of the transplant process improves their wellbeing because it gives them hope and makes them feel they are taking an active role toward an improved quality of life.

Recognizing New Self-Value.

Some participants are immigrants who originally came to the United States to work and contribute to the financial wellbeing of families still residing in their home countries. They describe how their demanding hemodialysis schedule and debilitating symptoms are prohibitive of working. Finding something they can do that gives back to their families brings them joy. When asked what brings her comfort, one participant said, “teaching somebody a little bit of crochet … the kids know that I don’t have any money … I sell my things.”

Maintaining a Positive Outlook.

Participants reported intentionally having a positive outlook and mindset in life. Some participants described how they focus on the “extra time” they are allowed with their friends and family because of hemodialysis. They described living each day “to its full potential” because they want to make the most of life now and not focus on the symptom burden or restrictive schedule and diet.

Theme 4: Distressing Aspects of Living with their Illness

Dietary Restriction is Culturally Isolating and Challenging for Families.

Participants find that the dietary restrictions are the most distressing aspect of their illness. According to one, “All the food I had to let go … cause I like avocados, beans, tomatoes, tortillas … I can’t handle that!” Not being able to eat traditional foods causes distress due to both loss of cultural identity and a decreased ability to socialize with loved ones. In addition, families do not understand or forget about restricted foods and serve them anyway, which results in participant feelings of guilt when families complain about needing to cook separate meals.

Logistic Challenges and Socioeconomic Disadvantage Compounded by Health Literacy and Language Barriers.

Participants describe distress when they miss or are late for hemodialysis because of transportation issues. Participants don’t eat well enough to have a “good albumin because there is no money for food,” and they are not aware of available food resources. Participants describe the need for an advocate, such as a clinical social worker, given their financial constraints; one oxygen-dependent participant needing a letter said, “I need my oxygen; it’s a letter that (says) not to mess … with the electricity or nothing.” Participants feel their health care providers ignore or avoid speaking to them because they do not speak English. Many report that they do not understand their illness or other aspects of their medical care because of lack of communication.

Required Rapid Adjustments to Chronic Illness.

The first few months after starting hemodialysis are the most challenging because the body needs time to adjust. Participants also feel frustrated and unprepared for all of the changes (e.g., additional pills, new dietary restrictions, the hemodialysis schedule) that from their perspective occur too quickly. To help future patients adjust to their illness, participants suggest coaching from other patients or caregivers of other patients with ESRD. According to one participant, it would be great to “have another patient say, ‘hey, this is what’s going to happen to you today’ and share their experiences and open up their mind in order to … cope with doing this, ’cause I’ve seen people that don’t want to be here.”

Demanding Hemodialysis Schedule.

Participants report feeling bored during hemodialysis and bothered that it takes them away from their family. Participants with insomnia miss hemodialysis because they do not sleep well and cannot wake up in time for morning appointments. Participants want to work yet cannot find employment because of their demanding hemodialysis schedules. One participant wished for more flexible hemodialysis hours scheduled around family events; he said, “You can do like really early or you can do like noon … options are good.”

Discussion

Latinos with ESRD have unique perspectives and cultural beliefs that affect their palliative care preferences. To our knowledge, this is the first qualitative study to gather an in-depth understanding of the palliative care perspectives of Latinos on hemodialysis. We found that our Latino participants avoid medications, favor family group decision-making, and want ACP conversations to occur at home with someone that is culturally and linguistically congruent.

Our participants’ preference for nonpharmacologic symptom alleviation is consistent with studies that report a similar preference among low-income Mexican men for counseling over medication alone to treat depression (18,19). Studies have also demonstrated the continued reliance of Latinos on traditional healing methods for treatment and symptom management (20–22). The fatalism reported by this study’s participants is aligned with the well cited cultural belief that deters Latinos from engaging in their own health (23–25). Understanding how cultural beliefs and preferences affect treatment is important for providers caring for Latinos with ESRD because Latinos prefer to have their physical symptoms as well as their psychosocial or spiritual concerns addressed by nephrology staff (6).

Our participants prioritize family to the extent that they would prefer family-centered, group decision-making; their ACP and advance directive decisions are grounded in family values. Similarly, two cross-sectional surveys of Latino patients found that the majority rely on their family for primary caregiving and prefer limited autonomy (6,26). Our participants also provide us with insight into the ideal attributes of the person who guides ACP discussions. These attributes were consistent with the values described in a comprehensive systematic review that looked at Latino values and their integration into palliative care communication (27).

The Kidney Disease Improving Global Outcomes summary recommends integrating cultural values into shared decision-making and ACP (28). A culturally and linguistically congruent approach to reduce palliative care disparities is patient navigation (29). Community-based navigators were first utilized to improve cancer care, and, more recently, demonstrated to improve palliative care outcomes among Latinos (30–32). An ESRD-focused navigator could address the barriers described by our participants: by having ACP conversations at home including family, leading ACP conversations to avoid patient-family tension, describing palliative care options to overcome communication and health literacy barriers, and by providing person-centered care in a culturally responsive way.

Participants are distressed by dietary restrictions because they limit traditional Latino foods, thus affecting meal time with family. Similar to our findings, one study found that when dietary restriction education does not acknowledge a patient’s culture, patients experience distress in food selection (33). Another study reported good dietary adherence among Latino patients with ESRD who received language-concordant dietary information and had access to Spanish translators (34). A palliative care navigator’s role may include reviewing the nutrition information patients receive from their dietician in culturally and linguistically congruent ways. Our participants reported that improved knowledge leads to better adherence decision–making, which improves their wellbeing; it is possible that having a patient navigator would lead to improved dietary adherence once they understood the symptom and mortality benefits.

We identified palliative care preferences that are unique to the United States Latino community. Research shows that ethnic minorities in Western countries are less aware of and therefore less likely to use palliative care services (35). Brown et al. provide a “cultural competency communication skills” table with suggestions on how to approach crosscultural palliative care communication with patients with CKD. Many of our questions (Supplemental Table1) can also be used to guide palliative care conversations that seek to align care with a patient’s goals and values.

This study has several limitations. The study recruited patients from two outpatient hemodialysis facilities in Colorado. The majority of our participants were of Mexican descent, and the results of our study cannot be generalized to all Latinos because Latinos are a heterogeneous group. Finally, participants were interviewed in the hemodialysis center and this setting may be disempowering or distracting. The strengths of this study are the qualitative methods that provided a rich description of a largely vulnerable community that is not represented in the palliative care literature.

A one-size-fits-all approach to palliative care for Latinos with ESRD will perpetuate existing disparities in end-of-life care. Culture affects the palliative care preferences of Latinos with ESRD on hemodialysis, and these preferences have important implications for the delivery of care. Meaningful integration of family into all aspects of palliative care and acknowledgment of individual preferences around symptom management are important mechanisms for an improved end-of-life experience.

Disclosures

None.

Acknowledgments

We thank Claudia Camacho and Maria Francisca Zabalaga for their administrative support for this project.

The work was supported by the Harold Amos Medical Faculty Development Award from the Robert Wood Johnson Foundation and grant 2015212 from the Doris Duke Charitable Foundation (University of Colorado School of Medicine fund to retain clinical scientist).

The funding organizations had no role in the design and conduct of the study, collection, analysis, or interpretation of the data. They had no role in the preparation, review, or approval of the manuscript.

Footnotes

  • Received September 29, 2016.
  • Accepted February 6, 2017.

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Qualitative Interviews Exploring Palliative Care Perspectives of Latinos on Dialysis
Lilia Cervantes, Jacqueline Jones, Stuart Linas, Stacy Fischer
CJASN May 2017, 12 (5) 788-798; DOI: 10.2215/CJN.10260916
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