Clinical and Health Affairs
Meeting the Needs of Somali Patients at the End of Life
By Keith M. Swetz, M.D., Abdi A. Jama, M.D., Onelis Quirindongo-Cedeno, M.D., and Lena Hatchett, Ph.D.
■ Given the large number of Somali refugees living in Minnesota, it is likely that Minnesota physicians will encounter Somali patients, some of whom will have serious illnesses. Although our knowledge of Somali expectations about health care is growing, little has been written about the Somali people’s views of treatment for life-threatening illnesses or their ideas about end-of-life care. After encountering a Somali man with advanced cancer in our practice, we attempted to learn about the Somali view of death and dying and the kind of treatment Somali patients might want during their final days. We share what we learned so that others might provide more culturally competent end-of-life care for Somali patients in the future.
Since the early 1990s, Somalis have been fleeing civil unrest in their homeland and relocating to the United States. During each of the last 10 years, between 2,000 and 13,000 Somali-born immigrants have become U.S. citizens.1-4 At least 30% (32,000 according to 2010 U.S. Census data) of Somalis living in the United States now live in Minnesota, with many making their homes in the Twin Cities and Rochester.5,6 This number may underrespresent the number of Somalis in Minnesota, as some Somalis may not have fully established a place of residence and others may come to Minnesota as a result of cross-state or secondary migration after resettling in the United States.
Because the state has such a large Somali population, being able to provide culturally competent medical care to these newcomers is of critical importance. Not surprising, there has been growing interest among physicians and other health care providers in how to best serve this population. A number of studies have examined what providing culturally competent care for this population means. Some have explored specific aspects of care. For example, one published in this journal focused on Somali refugee women’s attitudes about health and their preferences regarding care1; another focused on tuberculosis prevention and treatment.7 In addition, there is a growing amount of general information about providing culturally competent care, and a handful of reviews of Somali culture and history are available (Table 1). However, little has been written about providing culturally appropriate end-of-life care to this population.
Articles that focus on Islamic attitudes toward end-of-life care and common Islamic views of death and dying are often not specific to Somali patients.8,9 Indeed, much of the medical literature regarding end-of-life care for Muslims focuses on Arab populations and misses the sociocultural variations among Muslims in Africa including Somalis.
Our intent in this article is to provide information that others have not. We share the story of a patient who inspired us to learn about the Somali people’s beliefs regarding death and dying, and we discuss what we learned about providing end-of-life care to Somali patients.
Case Study
A 41-year-old Somali man, who immigrated to the Twin Cities about 13 years ago, presented at our emergency department for evaluation of advanced lung cancer that had metastasized to the spine. He was subsequently admitted to our inpatient service. During the previous 10 months, the patient had been treated elsewhere with chemotherapy and radiation therapy and was becoming increasingly weak. He was having difficulty walking and was in severe pain. He came to our institution for a second opinion regarding his diagnosis and the extent of his disease, and to learn about any remaining treatment options. The patient and his wife strongly believed that his weakness stemmed from prior radiation and that his chronic back pain was the result of an injury and not his cancer.
During the initial three days in our hospital, his attending physicians wanted to do as much as possible to improve his quality of life. The man was having significant pain and thus was very receptive to titration of his medication for pain. In addition, we performed neurologic exams that suggested worsening spinal cord involvement from his cancer.
We tried to talk to him candidly about his disease. However, he was unwilling to use an interpreter (which is our standard practice for patients who are not proficient in English) and instead wanted to communicate through his son, who was about 18 years old. We honored this request on most days, which may have limited our ability to have a detailed conversation; but nevertheless, we kept the patient engaged to the extent he was comfortable discussing his situation. He openly talked about his work and family with the physicians and social workers; however, when questioned about his medical condition, he would defer to his wife. He did not appear to be open to discussing the severity of his medical situation, nor did he wish to discuss end-of-life preferences. The social worker reported that he responded to her questioning, “I don’t know, I don’t know, talk to my wife.” Other providers were met with a similar response.
After radiation therapy at our hospital, we suggested the possibility of ongoing rehabilitation for his weakness, given his spinal tumor. His wife resisted our efforts to transfer him to a regional rehabilitation hospital, insisting that her husband was too weak to be moved. After two weeks in our facility, the man did agree to go to the rehabilitation facility. A follow-up appointment with oncology was scheduled for several weeks later to discuss advanced-line chemotherapy. The patient never made it to that appointment. He died three weeks after discharge from our hospital. We do not know the details surrounding his death.
Despite providing treatment that was consistent with the patient’s stated preferences, his discharge and subsequent death left something to be desired. Efforts to meet the patient where he was were made, but team members would have liked to have made a greater connection with him and to better appreciate the lens through which he viewed his situation. It is likely that our team will encounter a situation similar to this one again, given that we see a number of Somali patients. For that reason, we wanted to understand how to provide better end-of-life care to those patients.
Beliefs about Illness and Dying
To better appreciate the sociocultural complexities of caring for Somali immigrants, we reviewed the Somali Cultural Profile, which provides both general historical and geographic information about Somalia as well as information about cultural values and traditions.10 We also interviewed physicians and other health care workers who are Somali immigrants regarding attitudes toward death and dying and palliative care and hospice.10,11 We found no articles in the medical literature that focused specifically on end-of-life issues in Somali culture.
We learned that death and dying are generally accepted as being a natural part of life in Somali culture; death is recognized as inevitable and is considered a predestined fate. Understanding these views in the context of Islamic traditions is helpful, as the vast majority of Somalis are Sunni Muslims.10 Whether death is the result of a progressive disease or an acute event, it is commonly believed to be the will of God (Allah). Some refer to “return to God” instead of “death” to describe their belief about what happens to one’s “soul.”11
The belief that death is a normal, inevitable part of life often leads Somali immigrants to avoid getting preventive care, as they may take a “why bother” approach to preventing the unpreventable. Although most Somalis are unfamiliar with preventive health measures, most are familiar with vaccinations, as they tend to be used to prevent overtly manifesting, infectious diseases.12
Somali immigrants know about diseases that have overt signs or symptoms, that are treatable, that tend to affect younger people, that can be evaluated with available resources, and that are communicable. These include malaria, tuberculosis, diarrheal illnesses, and hepatitis—all of which are common in their homeland. There is, however, a general lack of understanding about noninfectious diseases with less-overt symptoms such as cancer or cardiovascular disease. This may be changing as more Somalis see loved ones diagnosed with these diseases and understand that they sometimes are preventable or treatable.
When Somali patients are confronted with a diagnosis of cancer or stroke or another serious illness, providers may encounter varying degrees of acceptance. Cancer, for example, is sometimes regarded as a disease that does not affect Somali people. This belief may lead Somali patients to request a second opinion or delay seeking care.
Intensive Care Utilization and Advance Care Planning
Because resources are limited in Somalia, most medical care (ie, intensive care) is reserved for younger patients who have a reasonable chance of recovery. Given this, the concept of life being sacred at all costs and being extended through aggressive use of technology can seem strange to Somalis. How patients and their families perceive intensive care measures will vary largely based on whether they believe the measure will be effective. Hemodialysis or ventilator use, for example, might be accepted if the patient or family consider the patient’s condition reversible. It would be less likely for a family to buy into long-term life-sustaining therapies if they did not allow the patient to be at home. In addition, Somali patients and families may have a limited understanding of what life-sustaining technologies can do.
It is generally accepted in our society that there is no moral, ethical, or legal difference between withholding or withdrawing life-sustaining treatment.13 Somali patients or families might feel differently. They may have more difficulty withdrawing treatments once they are started than withholding them in the first place. And although removal of some life-support technology or medications may be accepted, Somalis may be quite resistant to withdrawal of long-term enteral nutrition because feeding is viewed as an ordinary and necessary part of life. Patients or families from any culture may experience distress if they are required to make decisions about whether to withhold treatment, but it is helpful to understand the general root of this belief, which in the case of Somalis may be based in Islamic faith.10
Although Somali patients may find it difficult to make a decision about treatment, they may be quite accepting of truthful information regarding a poor prognosis caused by a terminal illness. However, specific predictions (ie, having six months to live) may not be as well-received, as they may seem contrary to the idea of a predestined future.
Few Somalis have participated in formal advance care planning such as completing a living will or advance directive. So what can providers do to make sure their patients’ wishes are being honored? Because they regard physicians as respected members of society and often look to them for help when making decisions about care, Somali patients expect medical providers to put forth formal recommendations regarding a plan of care. In doing so, providers may ask if anyone in the family is a medical provider and enlist that person’s help. They also might enlist the elders in the family. Either way, they need to be patient, as the need for collaboration can delay decisions about care.11
Finally, providers should be mindful of the extent to which an individual patient and his or her family are acculturated. In many Somali families, members of the younger generation are caring for their parents and grandparents. This dynamic can be challenging as members of different generations may have very different views of health care and life and death. Health care providers should explore with each patient and family their understanding of the patient’s medical problem, the goal being to develop a treatment plan that is mutually acceptable and culturally sensitive. Cross- cultural communication tools such as the LEARN model and Kleinman’s explanatory model can help facilitate these conversations (Table 2).14,15
Palliative Care and Mitigation of Suffering
Although Somali immigrants generally believe death is a part of life, experiencing or witnessing physical or psychological suffering can be distressing to patients and families alike. Therapies that relieve suffering may have a higher relative value compared with aggressive interventions, particularly if treatments that increase comfort allow a terminally ill patient to be at home rather than in the hospital. Efforts to manage symptoms, particularly overt or distressing ones such as pain or difficulty breathing, are generally welcome. Although opioids and oxygen are not readily available in Somalia, they are commonly accepted if they are needed for comfort. Because Somali immigrants have a high prevalence of post-traumatic stress disorder and other psychiatric or depressive disorders, it is especially important for providers to recognize and address emotional as well as physical causes of suffering.16
Hospice and palliative care do not exist in Somalia, so physicians should be certain that patients and their family members are on the same page regarding the goals of care. In Somalia, the expectation is that parents raise children, and children, in turn, care for parents when necessary. This may mean that recommendations for placement in a skilled nursing facility or inpatient hospice will not seem palatable to families. A treatment plan that allows for children and the community to care for terminally ill parents or elders at home and that allows for Islamic prayers and prescripts to be carried out in accord with customs would be favored over a prolonged hospitalization or placement in a nursing or hospice facility.
Conclusion
The Somali people represent an important patient population in Minnesota and in many urban centers in the United States. Given the fact that this is a growing population, it is likely that more physicians will encounter Somali patients, including those who may be nearing the end of their lives, in their practices. We hope this review will assist them as they seek to provide better end-of-life care for these patients. MM
Keith Swetz, Abdi Jama, and Onelis Quirindongo-Cedeno are physicians in the department of medicine at Mayo Clinic. Lena Hatchett is a social scientist at the Neiswanger Institute for Bioethics and Health Policy at Loyola University Chicago; her focus is community-based participatory approaches to reducing racial and ethnic health disparities.
We wish to express thanks to Mohamed H. Jimale and Dr. Abdirashid M. Shire for their kind commentary and input regarding this article.
References
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