The following case studies are intended to promote discussion and reflection on the topic of U.S. healthcare provided during perinatal loss experienced by immigrant and refugee families. The case studies were informed by themes from semi-structured interviews with members of healthcare teams (including physicians, certified nurse midwives, nurses, perinatal coordinators, and doulas) and community leaders from refugee and immigrant backgrounds. These cases do not represent true people or scenarios and were developed using stories and themes from our interviews. As you work through the case studies, we have included relevant quotes from the interviews to help facilitate discussion and reflection.
These case studies are not intended to be representative of all immigrant & refugee communities and individuals, but rather our intention is to provide a few examples to initiate reflection, evaluation, and discussion of how pregnancy loss may be experienced and managed in various healthcare settings in the U.S. We recognize there is diversity in cultural, religious, and individual beliefs and practices that impact the experience of pregnancy loss. Thus, the case studies below are not intended to provide answers to what to do in every situation.
In exploring the following cases, please allow your staff/team a safe space and ample time for reflection and discussion. Each case may take up to an hour for review and discussion.
Definitions
Immigrant: An immigrant is someone who makes a conscious decision to leave his or her home and move to a foreign country with the intention of settling there. Immigrants often go through a lengthy vetting process to immigrate to a new country. Many become lawful permanent residents and eventually citizens (IRC, 2018).
Legal immigrants are foreign-born people legally admitted to the U.S. Undocumented immigrants, also called illegal aliens, are foreign-born people who do not possess a valid visa or other immigration documentation, because they entered the U.S. without inspection, stayed longer than their temporary visa permitted, or otherwise violated the terms under which they were admitted (WA DSHS, 2021)
Refugee: A refugee is a person who is unable to return to their home country because of persecution, or a well-founded fear of persecution due to race, religion, nationality, membership in a particular social group, or political opinion. Other individuals who are eligible for services on the same basis as refugees include: persons granted asylum; certain Amerasians from Vietnam; Cuban/Haitian entrants; Iraqi and Afghani special immigrants; and victims of human trafficking (WA DSHS, 2021).
Asylum Seeker: An asylum seeker (also called asylee) is someone who is also seeking international protection from dangers in his or her home country, but whose claim for refugee status hasn’t been determined legally. Asylum seekers must apply for protection in the country of destination—meaning they must arrive at or cross a border in order to apply. Then, they must be able to prove to authorities there that they meet the criteria to be covered by refugee protections. Not every asylum seeker will be recognized as a refugee (IRC, 2018).
Both refugees and asylees are legally admitted to the U.S. because of the fear of persecution in their home country. The difference is that refugees are given admission before entry in to the U.S., whereas asylees arrive in the U.S. before they claim asylum and are given legal permission to stay (WA DSHS, 2021).
Nonimmigrant: A foreign national who is admitted to the United States for a specific temporary period of time. There are clear conditions on their stay. There are a large variety of nonimmigrant categories, and each exists for a specific purpose and has specific terms and conditions. Nonimmigrant classifications include: Foreign government officials; Visitors for business and for pleasure; Aliens in transit through the United States; Students; Temporary workers and trainees; Exchange visitors; Fiancé(e)s of U.S. citizens; Religious workers; and others. Most nonimmigrants can be accompanied or joined by spouses and unmarried minor (or dependent) children (USCIS, 2021).
Perinatal Loss or Pregnancy Loss: Unintentional end to a pregnancy at any gestational age, including early and late term miscarriage (up to 20 weeks), fetus with non-viable conditions, and stillbirth (fetal death after 20 weeks) (CDC, 2020).
Culturally Responsive: “Cultural Responsiveness is a self and process-driven, lifelong commitment to a tailored, dialogue-based approach that responds to the needs being presented by the individual in front of the provider, within a contextual understanding of social/economic/political/linguistic disparities.” While “cultural competency,” can imply mastery, “cultural responsiveness” is a dynamic and individualized principle of care delivery (NASTAD, 2015).
Cultural Safety: Cultural safety requires healthcare professionals and their associated healthcare organizations to examine themselves and the potential impact of their own culture on clinical interactions and healthcare service delivery. This requires individual healthcare professionals and healthcare organizations to acknowledge and address their own biases, attitudes, assumptions, stereotypes, prejudices, structures and characteristics that may affect the quality of care provided. In doing so, cultural safety encompasses a critical consciousness where healthcare professionals and healthcare organizations engage in ongoing self-reflection and self-awareness and hold themselves accountable for providing culturally safe care, as defined by the patient and their communities, and as measured through progress towards achieving health equity. Cultural safety requires healthcare professionals and their associated healthcare organizations to influence healthcare to reduce bias and achieve equity within the workforce and working environment. (Curtis et al., 2019)
Explore your Social Location
Before to delving into the case scenarios below, consider reading and reflecting upon the description and questions below.
Knowing where we are from is critical to knowing our social location and knowing our social location helps to know our privileges, oppressions, and intersection identities (Narruhn, 2020).
Intersectionality is defined as, “the intersection of ethnicity, race, class, gender, age, ability, sexual/affectional orientation, physical size, etc., in the lived experience of individuals, which is influenced by the simultaneity in time and/or place of these factors. In other words, it is people’s exposure to the multiple, simultaneous and interactive effects of different types of social organization or oppression in which they are located — a person’s social location.” (Crenshaw, 1989)
Our social location is defined as, “the groups people belong to because of their place or position in history and society. All people have a social location that is defined by their gender, race, social class, age, ability, religion, sexual orientation, and geographic location. Each group membership confers a certain set of social roles and rules, power, and privilege (or lack of), which heavily influence our identity and how we see the world.” (Crenshaw, 1989)
- Do you know anyone who identifies as an immigrant or refugee? If so, what do you know about their journey to the U.S. and their experiences in the U.S.?
- Have you, or anyone else you know, ever had to seek healthcare in another country? What surprised you about the differences in the healthcare system/delivery of care? Did you have any language or communication barriers to understanding your care, and how did that make you feel?
- Think about your patient population. Do you have patients with a different background than your own? If so, how does that impact the care you deliver or your approach to delivering care?
- What has been your experience caring for patients experiencing perinatal loss? What is your approach to discussing perinatal loss with patients?
Case 1
Semira is a 28-year-old G5P4 recent arrival from Eritrea who speaks Tigrinya and some English. She has declined in-person interpretation because the Eritrean community is relatively small in her community and she doesn’t want the interpreter to be someone she knows. At one visit her eight-year-old daughter is asked to do some interpretation. After two prenatal visits with communication challenges, she agrees to have a phone interpreter. Semira comes in for an appointment at 34 weeks because she hasn’t felt the baby move as much lately.
The phone interpretation isn’t working, so the RN starts to set up the non-stress test (NST) and then says she has to go get something else and leaves Semira there with her 8 and 6-year-old daughters. They are in the room for twenty minutes when an ultrasound technician comes in and checks Semira. The technician does not detect a fetal heartbeat, but the clinic policy is that a physician has to deliver the news, so the technician leaves to find the doctor. The RN tries to dial an interpreter again and is able to get through, so she is able to tell Semira that they went to get the doctor and she is so sorry for the delay. The clinic is very tightly scheduled that day, so another forty-five minutes pass before a doctor is able to come deliver the news of a fetal demise.
Questions
- What went well and did not go well in the above scenario of care? What interpersonal and systems level challenges can you identify in the above scenario that led to less-than-optimal patient centered care?
- How does interpretation work in your practice setting?
- How does your setting establish trusting relationships during prenatal care?
- What would need to change in your setting to provide more culturally responsive care?
- Systems change can be slow. What can you personally change to better support patients from immigrant and refugee backgrounds?
Quotes from interviews
“And if they take the public transportation, they are behind because of the bus schedule. They lose their appointment and because they showed up late, the interpreter is not there. Nobody informed them not to come because there’s no interpreter, and they wasted the day.”
– Community Leader
“And they brought an interpreter who doesn’t speak the same dialect… so the interpreter is there, the patient was there, not understanding, and even the interpreter said, like, really, I can’t understand what she’s saying.”
– Community Leader
“…at that point in time, there were very few Tigrinya interpreters that she [the pregnant person] did not know. There’s just not a lot of people who speak it in the area so she never wanted an in-person interpreter, and she did not like the phone interpreter because she felt like those people might get back to someone in her community. And so she usually insisted on just speaking English with me.”
– Physician
“There was not interpreter and I asked, “Why didn’t you guys order one?” The doctor said, “We’ve been trying since 7am.” And this is like 10, we can’t find an interpreter for a planned discharge.”
– Community Leader
“I feel like the worst experiences that I’ve been a part of are the ones where the patient has to sit there for an hour and a half waiting, and they know something’s not right. But yet, we can’t tell them anything. And especially if they don’t have somebody with them. They’re just sitting there in a room by themselves while we’re trying to get a provider in there. And then some of the providers have five minutes, and so it’s very difficult in that sense, where I feel like patients, their anxiety, they get so triggered before they even hear any of the information, that I think that they’re not able to make decisions.”
– Registered Nurse
“And my partner said that it wasn’t until maybe 32 weeks or so that she realized that the patient might not have been understanding everything because it wasn’t her native dialect and finally found an interpreter in her native dialect.”
– Physician
Key Points
- Title VI of the 1964 Civil Rights Act is the foundation of the lawful requirement to provide language services. All organizations who accept federal funding have a legal responsibility to provide language access to persons with limited English skills. Local and regional variances in interpreter availability and dialects covered may occur (Chen, Youdelman, & Brooks, 2007). See also: From U.S. Department of Health & Human Services, standards for culturally and linguistically appropriate services (CLAS), including Communication and Language Assistance Standards.
- “Children should never be used as interpreters except in emergencies,” (Juckett & Unger, 2014). Using children as interpreters risks harm to both the patient and the child.
- Use of professional medical interpretation improves communication (errors and comprehension), utilization, clinical outcomes and satisfaction with care. (Karliner, Jacobs, Chen, & Mutha, 2007)
- Be aware that even a professional medical interpreter might experience cultural barriers in communicating pregnancy loss to a family in cultures with a conservative approach to loss announcement. In some cultures, there may be cultural norms that dictate respectful approach to delivery of news around death and loss. Maintain cultural sensitivity when conveying the message to the patient. Providers can do a pre-conference with the interpreter when sensitive topics are known, thus allowing for pre-planning in the communication of information with a patient/family. (EthnoMed, 2016)
- All healthcare interpreters are bound by a confidentiality statement (National Council of Interpreting and Healthcare, 2004). After interpreters introduce themselves, it is important they reassure the patient and family that whatever is discussed at this appointment is confidential.
- While the importance of prenatal care to a healthy pregnancy is globally agreed upon, experiences and expectations of prenatal care differ by country and culture (WHO, 2016). Be aware that pregnant people might have had a different experience in their country of origin. Providers may want to ask patients what their expectations and preferences are for care and communication (e.g. other family member involvement in care conversations/decision making, etc.).
Case 2
Fatimah presents to her first prenatal care appointment at a Federally Qualified Health Clinic at 13 weeks. This is her second pregnancy in the U.S., as her first three children were born in Pakistan. Initial ultrasounds show a healthy pregnancy, but the 20-week anatomy scan shows a diagnosis of fetal hydrops. The Certified Nurse Midwife (CNM) explains that due to the severity, the condition is incompatible with life, and she needs to refer Fatimah to a specialist high risk obstetrician, or Maternal Fetal Medicine (MFM) doctor. Fatimah insists that all her babies have been born healthy, and this one will be fine as well. Before her last pregnancy, she had never even had an ultrasound. Fatimah also does not have a car and it is difficult to travel to appointments.
MFM calls the CNM at the health center and says, “I’m worried about Fatimah developing mirror syndrome* but since the baby still has a heartbeat, she is still insisting everything is fine. I’m not sure if it’s a health literacy issue. How can we support her health?” Fatimah continues to decline intervention, saying “Allah will not give me more than I can handle.” At 27 weeks, Fatimah progresses into spontaneous labor.
After Fatimah delivers, Bonnie, an RN, comes on shift at 0700. She receives report from Mabel who has been on for the last 12 hours. “The patient is Fatimah, 32 years old, G5P5, Intrauterine Fetal Demise due to fetal hydrops at 27 and 2/7 weeks gestation. She delivered at 0532. Vitals are within normal limits, Group Beta Strep negative, no epidural, no medications, no allergies.” At this point the OBGYN, Tara, adds “I’d like to talk to Fatimah alone, it seems like her husband Ahmad is making all the decisions for her. They refused interpretation and their English isn’t perfect, but I know she understands and she might make different decisions if he wasn’t there. They are refusing an autopsy and genetic testing.” Mabel agrees, “He’s really overbearing. He doesn’t want her to hold or see the baby. And she hasn’t even cried yet.”
Bonnie brings in information on fetal remains options, which is only available in English. She tries to present it to Fatimah and Ahmad, but Ahmad takes the paper and says he will handle it. Bonnie offers to call the hospital inter-faith chaplain and Ahmad declines.
*Mirror Syndrome: A rare, potentially life-threatening, condition in pregnancy, defined by the presence of the clinical triad of fetal hydrops, placentomegaly, and maternal edema. (Mathias & Rizvi, 2019)
Questions
- What surprised you about Fatima and her husband Ahmad’s actions in this scenario?
- What methods do you use to explore whether patients understand their health conditions and the information that is presented in a medical visit?
- What are examples of systems level, institutional level, and interpersonal level changes that could promote more mutual understanding, collaboration, patient- centered care in this scenario? Example: Identify the biases (e.g. unconscious/implicit and explicit) that the healthcare team may bring to this scenario. Identify the structural and institutional biases that may exist in this scenario.
- There is no definition or checklist for “the right way to grieve.” What assumptions/beliefs do you have about the grief process for someone experiencing perinatal loss? How does the above scenario demonstrate different approaches and attitudes in the grieving process, and how does this make you feel? What personal change can you make in approaching discussions about grief with patients?
Quotes from interviews
“Patients with significant fetal anomalies are meeting with Maternal Fetal Medicine, they’re meeting with the pediatric cardiologists and we’re [the family medicine doctor or OBGYN] not in the room with them so it’s it is always hard to totally grasp what was said, what was heard, what was remembered, what was interpreted.”
– Physician
“Just being able to be physically and emotionally present and hold the space. And validate however she is working through it. There’s no right way to do it. There’s no right way to lose a baby, and there’s no wrong way either. It’s just her way in this time.”
– Certified Nurse Midwife
“Lots of judgments of like, “Oh, they obviously don’t care about children. This is just one in a line of 12 kids to them.”
– Clinical Social Worker
“Often the husband or somebody else is the one that’s receiving the medical information, they are the ones that are generally speaking and making the decisions. And we’ve had a lot of pushback, like oh, we’re taking away the woman’s rights to make her own decisions. And the family is trying so hard to show their love by caring for her and we’ve had a lot of issues.”
– Physician
Key Points
- Patients are often given the option for having the remains buried, cremated, or disposed of by the hospital. In Islam and Orthodox Judaism, both autopsy and cremation are forbidden. According to Muslim traditions, burials should take place within 24 hours. (Chichester, 2005). In the Hmong culture, the body is buried without burial ritual due to the belief that the fetal or newborn baby is not fully human until the third day after birth when a soul-calling ritual is performed (Rice, 1999).
- “Individualistic cultures are defined by detachment from relationships and community. The individual views himself or herself as relatively independent from others. In contrast, collectivist cultures stress the importance of relationships, roles and status within the social system.” (Guess, 2004). The U.S. is, in broad terms, an individualistic society, while some immigrant and refugee cultures are collectivist, and healthcare decision making can affect the community, not only the family experiencing the event (Narruhn, 2008). What can look to an individualist like taking away the patient’s autonomy could, in a collectivist context, be a family member trying to take the burden of decision making from their loved one.
- One study of Muslim women who had experienced perinatal loss found that the mothers felt “repetitive reminder of whatever happened was a test from God improved their sense of self-worth.” (Sutan & Miskam, 2012)
Case 3
At Small Town Hospital, the care team has worked hard to set up systems to support late term perinatal loss. It is protocol that every stillborn infant gets a “memory box” with a lock of hair (if the infant has hair), foot and handprints, and a picture. If the parents do not want the box, it is kept in storage for 10 years in case the family changes their mind. The care team offers the father of the stillborn infant a rock to keep in their pocket with advice to touch the rock when they feel sad. A month after the family is discharged, the care team sends a condolence card in the mail that says, “We will never forget you,” signed by the care team. One week after discharge, a home visit is planned, and the home visit nurse brings a special box of soft tissues as a gift.
While in the hospital after a 35-week stillbirth of unknown causes, Bonnie, a nurse, knocks on the door and introduces herself to the mother of the baby. The father of the baby is on his cell phone talking in a language Bonnie doesn’t recognize. The nurse says, “I’m so sorry for your loss, I know this can be such a difficult time, please know that it’s okay to cry.” The mother replies, “It’s okay. It’s alright, that baby will be in heaven when we get there. My next baby will be healthy. This was God’s will.” The nurse says, “I know this can be hard to understand but research shows that mothers of stillborns who never see their baby’s body regret it. Let me know when you’re ready to hold the baby. We’ve also made a memory box for you to take home with you.”
The nurse continues to ask when the parents want to hold the baby, and the parents continue to say they don’t want to. The nurse has read stillbirth research and seen the healing that happens when parents hold the baby after stillbirth or demise before discharge. She even had a patient that held the baby for twelve hours and wrote the care team a card thanking them for the experience of being with her baby one last time. The nurse is really worried that the parents will regret not seeing the baby, so she decides to take pictures of the baby in case the parents want them later, even though the family has declined photos.
Questions
- At what points did the hospital and care systems in place lead to care that wasn’t patient centered?
- What surprised you about the nurse’s actions in this scenario? What could the nurse have done differently to better support the family’s reactions and intentions?
- How do you recognize and react when your impact is different than your intention?
- What systems would have to change in your setting to provide more culturally responsive care?
- There is no definition or checklist for grief. How can you personally change your approach to counseling and script to be more inclusive of varying patient experiences, backgrounds, and beliefs?
Quotes from Interviews
“One of the things that the folks who were providing this postpartum care visit do is bring a special box of tissues, which were really nice, soft tissues. And for some people even just receiving that visit wouldn’t be seen as culturally the way to help someone through grief, and so not only was the visit being made but then the special box of tissues was brought out. Culturally for the patient and her family that was saying “you should be crying.” You should, you know, grieve more, and it was also a bit condescending- like that they don’t know how if they need a tissue how to find tissue.”
– Clinical Social Worker
“After birth, they wrapped the baby and brought it back, and they asked the mother if she would like to have pictures with the child and we don’t take pictures with dead bodies in our culture. Having the corpse of the baby in the room for hours. The feeling in the room is like “this is a dead body, what is it doing here?” The family didn’t know what to do or how to say no.”
– Community Leader
“…we had one mama who didn’t ever want to see the baby after delivery and the nurse was a newer nurse, but she was like, “That’s not right.” And she kept offering and kept offering to the patient. It was really upsetting for the patient. That nurse couldn’t handle it. And so she decided to take pictures of the baby. And then offered those to the family as well.”
– Registered Nurse
“Women have said that they’ve been highly encouraged to hold the baby. It’s shocking to them, this is not a thing that they would have done. But when the nurses and doctors are telling them like, “Oh, no, it’s good for you, you should do this.” And they feel almost bullied… “Oh, okay. I don’t know, the Americans think that this is good.” So then they do and then for many people because it’s so uncomfortable, then it’s actually a horrible memory of all of it.”
– Clinical Social Worker
“The biggest thing is that there are definitely similarities in a particular culture, in terms of the cultural lens and how things are viewed, but people within that group are individuals. It’s really just that individual and how they make sense of it.”
– Certified Nurse Midwife
Key Points
- Parents may wish to have bereavement care in the form of religious blessing, taking photos, skin-to-skin holding for babies of larger sizes, dressing or washing the baby. Memory boxes are commonly offered which can include a lock of hair, hand or footprints, or other items (Catlin, 2018). These types of mementos are often desired by American Christians (Chichester, 2005). However, in the Muslim community, mementos can be considered desecration in Islam and cause distress to the family. These examples are not meant to speak for all American Christians or Muslims. In order to ensure optimal care, always ask what the family prefers before obtaining mementos (Arshad, Horsfall, & Yasin, 2004).
- Aim for cultural humility (a dynamic, lifelong practice) rather than cultural competence (a mastery-based goal). The concept of cultural humility was developed by Drs. Melanie Tervalon and Jann Murray-Garcia from University of San Francisco developed to honor the patient’s lived experience. The three principles of cultural humility are lifelong learning and self-reflection; mitigating power imbalances; and institutional accountability (Miyagawa, 2020; Foronda et al, 2016).
- Respect that your patients may grieve in a way that is different from your expectation (Koenig & Gates-Williams, 1995).
In Closing
These case studies highlight themes that emerged in project interviews and are not meant to speak for the wishes and perspectives of all immigrants and refugees. While these case studies focus on one family at a time, we call you to examine systems level, institutional level, and interpersonal level assumptions, processes, and practices that may perpetuate othering, oppression, and take away from a culturally humble, patient-centered approach. The experience of pregnancy loss is influenced by religious, cultural and individual factors, and the needs of each person and family will be unique. All families deserve culturally relevant care, no matter their country of origin.
“We must be careful to retain the individuality of the individuals and the personality of the person or else the humanity of the human may be lost.”
– Unnamed Theologian
Acknowledgements
Funding for this project was provided by the King County Academy of Family Physicians (KCAFP) Mission Grant. Beth Farmer, LICSW (International Rescue Committee) identified the need for training and information on this subject.
Risho Sapano, MA (Mother Africa), Elizabeth Rutten-Turner, LCSW (St. Alphonsus Medical Center, Boisie, Idaho) and Traci Harrod (St. Alphonsus Medical Center, Boisie, Idaho) provided advising in further understanding patient, client and provider needs around this topic to scope the project, participated in interviews and reviewed materials.
Jasmine Matheson, MPH and Laura Newman, PhD of the Washington State Department of Health provided support in grant writing and project scoping. Fardous Guled, RN, BSN, PHN (Somali Health Board Nurse Consultant); Hani Mohamed, MHI and Ladan Hassan, of the Somali Health Board’s Centering Motherhood Program advised on project scoping and reviewed drafts of project materials.
Zainab Al-Tameeni, MD, MPH (Iraqi/Arab Health Board) reviewed project materials. Lea Ann Miyagawa, MN, RN (Harborview Medical Center Community House Calls Program) provided clinical input and reviewed drafts of project materials.
Robin Narruhn, PhD, MN, RN (Seattle University), Elizabeth Gabzdyl, CNM, DNP, ARNP (Seattle University) and Kelly McBroom, CNM, ARNP, PhD (Seattle University) provided academic and cultural advising. Many thanks to the health care providers who contributed their time to participate in interviews.
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