This 34-year-old woman arrived in Canada as a refugee 3 days before presenting to the Emergency Department. She had a 2 years history of progressive right hemiparesis leading to paralysis and a 1-year history of dysphagia for solids and progressive left hemiparesis. On examination, this 150 cm, 30 kg female was malnourished and spoke only Somali. She had contractures of the paralyzed right limbs with pyramidal weakness (Medical Research Council [MRC] Grade 3-4/5) in the left limbs. Magnetic resonance imaging (MRI) demonstrated an enhancing intra-axial upper cervical cord tumor [Figure 1a]. Nutritional supplementation was attempted with a nasogastric tube to improve nutrition prior to surgical intervention, but refused by the patient. The tumor was removed through a posterior cervical laminectomy with electrophysiological monitoring. The pathology was an ependymoma WHO Grade 1 and follow-up imaging showed no residual tumor [Figure 1b]. Her left sided weakness and dysphagia resolved within a few weeks (MRC Grade 5/5 and full oral diet) but her right arm and leg function continued to be hindered by contractions despite regaining anti-gravity strength (MRC 3/5 on last examination).
The care of this patient was hindered by the following factors related to her refugee status: Language barrier, lack of medical history, mistrust of care workers, lack of familial support, malnutrition, and access to follow-up care.
The patient spoke Somali, and professional medical interpreters were only available if booked a day in advance. This allowed for formal patient interview and examinations but hindered routine communication with the nurses. The nurses had difficulty explaining what they were doing (e.g., injections), and the patient could not articulate her immediate needs (e.g., pain control or loneliness). Written translation tools were ineffective because the patient was illiterate. This communication barrier hindered treatment (e.g., injection medication refused, explanations for treatment booked the next day) and was particularly stressful for the patient. The immigration support team was later able to provide a full-time, nonmedical, interpreter, but they clashed openly with the medical interpreter creating unnecessary tension for the patient. The constant availability of a translator was clearly better for patient rapport but may have come with less accurate medical translation. We would recommend choosing only one interpreter as having both was counterproductive. This may be circumvented in the future by computer software-based translation, pictographs, or remote interpretation services through phone, or video conference. Although phone interpretation is available at all hospitals, not all physicians are familiar in its use and emergent access is difficult for those speaking less common languages.
The history of her presenting illness was provided solely by the patient and her family. The communication barrier produced variation in the history over time and between the patient and her family. There were no collateral records available to verify the medical information. She reported that she had been "diagnosed" with a postpartum stroke a year prior to her arrival in North America, which was inconsistent with the progressive symptoms that preceded that birth by a year. No information was available on her allergies, medications, previous illnesses or operations, exposure to infectious diseases, or magnitude of weight loss. The patient denied exposure to tuberculosis (TB) but her husband later reported that he was being treated for active TB. This lack of history delayed the initiation of appropriate infectious isolation precautions on the neurosurgery ward. The lack of a complete medical history, therefore, delayed appropriate diagnostic tests for the patient and potentially put the staff at risk for exposure to TB. It would be very helpful in the future if refugees were provided with a standardized form detailing their past medical history by the physicians screening their application.
On multiple occasions, the patient agreed to an intervention explained by her physician but later refused to allow the nurse to perform that intervention. We initially incorrectly assumed she understood that a procedure could be explained by one person and performed by another. A repeat explanation with all team members present facilitated some treatments (injected medications) but not all (nasogastric feeding). When interviewed later, the patient could not accept that the immediate discomfort of a nasogastric tube provided a greater but delayed benefit of preoperative nutritional supplementation. The patient later reported that it was stressful for her to meet new nurses each shift. From the patient's perspective, new caregivers were strangers and, therefore, might not be trusted. White et al. put forth the idea of a four-staged approach to help facilitate team-based medicine specifically for Somali refugee populations. An emphasis on patient education as well as empathy toward a patient's specific concerns, even if not the most medically pertinent, led to a significant increase in compliance with medical referrals. Parallels can be drawn to this case in that a standard approach focusing on building trust could help ease patient tensions with large medical teams and ultimately facilitate better care. This lack of trust and the associated delay in care could be addressed in the future by introducing a core group of nursing staff accompanied by an interpreter, as well as adding their pictures, to a team photo that could be referenced by the patient. The staff and patient later reported that there was an expectation that this patient adjust to our western culture and medical model faster than was reasonably possible given her background and recent arrival.
In this case, the patient's family was housed an hour away, and one child was simultaneously admitted to a pediatric hospital. Travelling by public transport was unfamiliar to the family and described as frightening. As a result, the patient was unintentionally isolated. According to the patient, this was one of the most stressful aspects of her care. In the future, every effort should be made to maintain family support, whether, that is, through onsite housing services or transportation allowances for family members.
Malnutrition is an uncommon problem in neurosurgical patients. In the last 19,935 consecutive admissions to the neurosurgical service at Vancouver General Hospital, only 3 (0.015%) had a concurrent diagnosis of malnutrition. In this case, the patient had survived for a year drinking only the milk from her cow. Her body mass index (BMI) was 13.1 kg/m2 which would be the most severe (Grade III) of underweight categories according to the classification reviewed by Ferro-Luzzi et al. Extremely low BMI increases the risk of infection, wound dehiscence, and mortality. The treatment of this patient's malnutrition was hindered preoperatively by her dysphagia for solids and refusal of nasogastric supplementation and postoperatively by her refusal to eat hospital food (she would eat only goat meat provided by her family). In hindsight, a more coordinated effort by the entire team to communicate the necessity to provide nasogastric supplementation may have been successful.
Transportation and language barriers continue to present difficult but not insurmountable obstacles for the patient. A follow-up MRI of her spine was delayed several times because the patient did not understand the need for this. All office appointments have been canceled because of her family's difficulty in navigating the public transportation system and potentially due to the cost of travel. Ultimately, patient follow-up has been coordinated by her family physician, and there was a single home visit by the neurosurgical team.