Cultural Challenges in the Care of Refugees with End-Stage Renal Disease: What Western Nephrologists Should Know

A report presented by the United Nations High Commissioner for Refugees in 2015 highlights the magnitude of the global problem of forced displacement [1]. More than 65 million people were displaced from their homes in 2015, of which more than 21 million were refugees outside their home countries [1]. Recently, the demographic profile of immigrants has changed from being majority healthy male individuals to one that comprises entire families including elderly, disabled, sick, and young children. This demographic shift has presented newer challenges to the countries hosting immigrants more than ever before.

Currently, a majority of these refugees are from the Middle East and of Muslim faith, mainly from Syria, Iraq, and Afghanistan. While most of these refugees end up in neighboring countries that share similar cultural values, a significant number find their way to Western Europe and North America. Between 2014 and 2015, Europe has witnessed a huge rise in the number of refugees, increasing from 280,000 to more than a million [2,3].

While cultural issues are not the main challenges refugees face, these issues still represent an important obstacle that shapes refugees' lives in the new adopted communities. Caring for patients with end-stage renal disease (ESRD) provides a unique demonstration of the challenges that refugee patients as well as their care providers go through to achieve the best clinical outcome.

A recent article [4] surveyed dialysis providers in Europe (86%) and Middle East/North Africa (14%), and showed that refugees represent 1.5% of the dialysis population in the countries surveyed. The authors identified cultural differences as the major barrier in care provision.

In this study, we discuss the challenges that both ESRD refugee patients coming from the Middle East to Western countries as well as their care providers may face. The points discussed in this review are general and may not fully reflect the cultural diversity of the Middle Eastern people and the significant variation in the degree of their religiosity. We start by discussing the cultural barriers and then try to suggest approaches aiming to remedy these challenges (Table 1).

Adequate communication between health care providers and patients with ESRD is crucial. Patients with ESRD usually have a complex medical history, on multiple medications, and with restricted dietary requirements. They may require multiple clinic visits, adequate education about renal replacement therapy (RRT) options, as well as frequent investigative workups.

Refugee patients with ESRD coming from a different culture may require even more communication with their health care providers; refugee patients with ESRD may have a complicated emotional history, as well as unique health practices and beliefs that may impact their health care.

Without some means of communicating these issues, refugee ESRD patients may become victims of medical errors. Furthermore, refugee patients with ESRD may not be potential candidates to some of the RRT modalities that require more intense information on patients' education as those undergoing home hemodialysis and automated peritoneal dialysis. In addition, the extensive workup needed for renal transplantation (RTX) may be hampered by the multiple clinic visits and procedures with the need of an interpreter in each of these encounters.

The mere presence of an interpreter does not completely solve the problem of inadequate communication between the patient and provider. Different dialects, inadequate knowledge of medical terminology, and even the gender and political views of the interpreter can be perceived as barriers to adequate exchange of information [5].

People from different cultures consume different diets. While it is agreed that for the general population the Middle Eastern diet is healthier than its western counterpart, this diet's richness in potassium can cause hyperkalemia in the ESRD population. In many aspects, however, the Mediterranean diet has some advantageous ingredients, such as more vegetarian sources of proteins, which have low phosphorus/protein ratios and lower phosphorus absorption compared to animal proteins. Another reported advantage of the Mediterranean diet is lower inter-dialytic weight gains [ [6,7].

Yet another dietary issue that might be encountered is the Islamic practice of fasting between sunrise and sunset during the month of Ramadan that some Muslim ESRD patients choose to observe. Due to a shorter duration of the lunar year, which is the basis for the Islamic calendar, the month can fall on any season of the year. Without exploring the mechanisms, one study reported higher than expected death rates during Ramadan compared to other months [8]. Other studies, however, reported that fasting was safe in the relatively healthy and young subset of ESRD patients, and in one study, a rise of the serum albumin of the patients was noted by the end of the month [9,10,11].

The Islamic religion prohibits its followers from eating food containing pork, even in small amounts such as using lard as a food-shortening substance. Some Muslim patients avoid pork products in medications. Pork gelatin added to capsules shelling can be a reason why some medications are not taken as prescribed [12].

One of the challenging problems that can be encountered in hemodialysis is the refusal of some Muslim patients to receive pork heparin. Beef heparin has become rare in the markets and the use of alternative dialysis circuit anticoagulation methods can be cumbersome, expensive, or ineffective. Similarly, alcohol consumption is prohibited in Islam; this might be the basis of refusal of some patients to take alcohol-containing medications such as some cough syrups.

In addition to conducting inquiries and procuring information about food and medications history, it is important to ask about the use of supplements and alternative medicine products. One example is the use of gum Arabic, which is believed to slow the progression of kidney disease and decrease the load of uremic poisons. The product is very high in calcium and was recently implicated in the case of severe hypercalcemia in a chronic kidney disease patient from the Mediterranean Region [13].

Faith and culture affect every aspect of the human life. While health care providers are not required to be familiar with each aspect of the faith and culture of their ESRD patients, it will certainly help if they have a basic knowledge of the background of their patients and this awareness may have an impact on the choice of therapy.

Muslims pray at different times during a day, causing some patients to prefer certain hemodialysis shifts that do not conflict with prayer times.

Out of modesty, some patients of Middle Eastern origin may have a preference to have providers of the same gender as that of the patient. Furthermore, another issue that Western providers might face in the care of un-married Muslim women is the refusal to have a Pap smear as a routine test or during an RTX workup. The reason for this refusal is usually a concern that the test may alter their virginity status [14,15].

In the absence of linguistically and culturally accessible care, refugees and immigrants may have difficulty developing trust and respect for health care providers in their new homeland. This difficulty is compounded by experiences that refugees carry with them from a war zone area, as well as during their transit to their final destination.

Lives of patients with ESRD depend to a large degree on their interactions with their care giver. Lack of trust of ESRD patient in their care providers may lead to patient's noncompliance with dietary and fluid restrictions and poor adherence to their medications as well as their dialysis schedule.

Possible medical errors can cause further damage in trust levels between the patient and the provider. Medical errors may occur due to patient-providers' miscommunication resulting in possible misdiagnosis, as well as patient noncompliance simply because they were not able to understand instructions. This leads to less than optimum medical outcomes, which may further widen the divide in trust levels, thereby resulting in patient's inappropriate usage of medical services with multiple emergency department visits. Such visits may end in more confusion and possible misdiagnosis resulting in even less confidence in the care providers and the medical system in general.

Refugees with ESRD who were educated about their RRT options in their country of origin have preformed perception about which RRT modality they favor. While patients should be an active participant in choosing their RRT modality, occasionally, limited resources in their home country could have dictated their choice of modality. Due to scarcity of HD machines in some areas in the Middle East, patients will not be given the option for HD, if providers thought that the patients were in their terminal stage of the disease. These dying patients are often placed on PD, which can lead to the false belief that PD is an inferior modality (bias by indication). Another situation that also leads to this false belief occurs when PD is practiced by providers who lack adequate training about the modality leading to poor outcomes [16].

On the other hand, some patients have the perception that medicine in the Western hemisphere can achieve “miracles” and are quickly frustrated if their kidney function does not recover or if RTX is delayed.

For most patients who are on chronic dialysis, kidney transplantation is but a dream. In the case of refugees, this dream might be shattered by the realities of transplantation policies of the host country, which oftentimes are framed only in favor if its citizens.

One obstacle that may delay RTX to these patients is that in countries that consider vintage on dialysis in transplantation listing [17], getting adequate documentation on the date of onset of ESRD from the country of origin, especially those shattered by war, may be a challenge. Similarly, in countries transplanting organs only to blood relatives, proving kinship between a refugee ESRD patients and a potential donor may be impossible.

Another ethical issue occurs when refugees may come from places that may not fully respect the principles outlined by guidelines such as the Declaration of Istanbul on Organ Trafficking and Transplant Tourism [18] and end up seeking a living donor in an illegal manner.

Western bioethical “principlism” - autonomy, beneficence, nonmaleficence, and justice proposed by Beauchamp and Childress - are concordant with the Islamic tradition with few notable differences. One of these is the prominent role of paternalism in Middle Eastern cultures where proximal and extended family ties tend to play a bigger role in the health care decision-making process, thereby lessening the role of autonomy to some extent.

Decision whether to continue dialysis in terminal Middle-Eastern refugee patients will mostly be dictated by the family. In fact, most of the time, the families of these patients are so protective that they would want to shield patients from even knowing that they are terminal. Another issue that might be encountered is the reluctance to accept palliative care due to the fear of the stigma of abandoning loved ones [19,20,21].

Most refugees originate from war-struck areas. A central issue in war conflicts is loss of people and property and grief associated with the loss. Increasing levels of poverty, lack of options for livelihood, and having to face a community that does not share their culture add to the sense of hopelessness for many refugees.

When this is coupled with having a chronic disease status as ESRD, a sense of hopelessness may be further exaggerated, which may lead to the formation of negative coping strategies in dealing with stress and addressing the struggles of daily living. This may explain the reason behind the high prevalence of mental and psychological problems in refugees with ESRD.

Isreb et al. [22] surveyed 62 hemodialysis-dependent Syrian refugees and reported that 36% of these patients felt severely depressed with 74% being anxious. Other studies showed similar results. In a recent study assessing prevalence of depression in Syrian refugees, the prevalence of current depression was 43.9% as compared to the prevalence rate for pre-war depression of 6.5% [23]. While that study did not show that religion was a factor affecting depression, other studies showed that having an Islamic or Christian faith was associated with fewer internalizing problems [24].

Psychological and social distress among refugees manifests in a wide range of emotional, cognitive, behavioral, and social problems. Emotional problems include sadness, grief, fear, anger, and despair. Cognitive problems such as loss of control, helplessness, and hopelessness are all widely reported. Similarly, physical symptoms such as fatigue, problems sleeping, and loss of appetite have been reported in this population. These symptoms could be easily confused with uremic symptoms in patients with ESRD. Furthermore, psychological disorders, such as depression, in patients with ESRD/chronic kidney disease may further lead to worse outcomes [25,26,27,28].

For patients from the Middle East area, concepts such as “mental health” are not commonly understood and often carry negative connotations. Going through physical and mental stress is commonly understood as a normal part of life, and therefore does not necessitate medical or psychiatric intervention, except in severe and debilitating forms. Thus, unless a provider and/or interpreter are very familiar with the patient's culture and their use of indirect expressions when asked about their psychological state, the diagnosis of a mental disease may be easily missed out.

The first step in resolving many of the encountered problems is to break the language barrier. Training interpreters about health care privacy regulations of the host country and medical terminology are worth the effort. Patients and their families should be allowed to choose their interpreters, if found feasible.

Many of the encountered barriers are solved by appropriate communications, patient education, and open mindedness of all stakeholders. In some instances, involving religious figures who are familiar with both the patient and host country's culture could be very helpful. Accommodating small requests, such as changing the dialysis shift so the patient can pray on time, may go a long way in building trust.

Education about the host country's laws including transplantation regulations, advanced directives, the value of autonomy in Western culture, and end-of-life decision laws should be done to avoid miscommunications and potentially illegal activities.

Islamic faith glorifies and honors life, and in so doing, allows unlawful things to be used if a human life is in direct danger. Thus, some patients may be comfortable with exceptions to the Islamic rulings, if they do not have alternative options and their health is at stake. Thus, if the treating provider believes that food and liquids deprivation for long hours is harmful, then the patient should be counseled about that.

Similarly, Muslims are allowed to deviate from dietary and other rules if strictly following of them is harmful. Eating pork, for example, is allowed in case of famine. Such a leniency could be extended to the case of medications if there are no alternatives. The same principle applies in other situations discussed above, such as gender preferences about the provider, fasting, and others.

Ingredients of Middle Eastern diets could be obtained online from many Middle Eastern universities and dialysis providers. When food is provided to the patients and the “Halal” Islamic food is not available, most Muslim patients accept the “Kosher” Jewish food because it contains no pork products.

When facing an issue like a refusal of a pap smear due to concerns about losing virginity, the treating team has to consider the rationale that led to the need of the procedure. The risks of cervical cancer and sexually transmitted diseases including the human papilloma virus are linked to sexual activity and there might not be an indication for a pap smear in this context [29].

Dealing with mental illness remains a challenge in patients with ESRD, moreso with refugees coming from a different culture, torn by wars, and with those speaking a different language. Lack of friends' support and the limitation of their families' support that are facing their own struggles add further burden on for the health care providers overseeing refugee patients with ESRD who work with the goal of improving the care of these patients. Fortunately, ESRD dialysis facilities in Western countries have valuable resources; the social workers are trained to deal with the mental and psychological problems of patients with ESRD. They are capable of recognizing symptoms and signs of mental illnesses and guide the actions by the team.

In summary, in the face of the recent crisis of forced migration causing the displacement of refugees, many of whom have health problems such as ESRD, it is becoming crucial for medical professionals to familiarize themselves with some of the issues that can affect the health care outcomes of these patients. While some of the burden falls on the refugees to learn and familiarize themselves with their host countries' norms, both sides have to sincerely put in effort to see eye to eye and meet on a common platform in order to ensure the best outcome even in the midst of unfortunate situations of life.

The authors have no conflicts of interest to declare.