Sara, a 22 year-old woman has been re-admitted for treatment of active tuberculosis. She emigrated with her family from Somalia approximately 18 months ago.
Three months ago, she came to the hospital because she was coughing up blood. Work-up revealed pulmonary tuberculosis without evidence of spread outside the lungs. The organism was not resistant to standard therapy. She was not critically ill, had not lost weight, and was Human Immunodeficiency Virus negative. Active disease in family members was excluded. Her prognosis for cure was good. In addition, her inpatient and outpatient treatment was to be provided without charge by a religious hospital that exercised a prominent mission to the indigent community.
Therapy was begun, but she frequently refused medication and occasionally said she wanted to die. Her nurses suspected that she induced vomiting after taking her medication. She refused treatment by injection. Because of concern about compliance and contagion, the Health Department recommended inpatient, monitored anti-tuberculosis therapy for 6 weeks rather than discharge for outpatient treatment.
Multiple management conferences were held with translation services. Her parents and siblings were included, as well as a Muslim cleric, but support could not be engendered for the prescribed treatment goals. The Somalis perceive tuberculosis as a death sentence and could not be convinced otherwise in spite of hearing repeatedly that in contrast to the dire prognosis of tuberculosis in Somalia, the treatment here would have a high likelihood of success. She and her family were consistently resistant to the necessity of inpatient treatment and subsequent outpatient follow up.
She was diagnosed as depressed, but she also refused treatment for depression. Psychiatric, Palliative Care, Health Department, and Ethics committee consults were obtained. All the consultants were consistent in their exhortations for her to comply with therapy. She again refused injections and began to pull out intravenous lines. She completed the 6 week course, such as it was, had improvement in her symptoms and chest x- ray findings. She was sent home, presumably cured. She did not return for scheduled ambulatory visits.
She is re-admitted now, three months later, with fever and intermittent mental confusion. She has been found to have recurrent pulmonary disease plus tuberculosis inside her skull, both meningitis and a cerebellar abscess. It was surmised by the Infectious Disease Consultant that there were substantial medication gaps in her hospital regimen during the last admission. When lucid, she again refuses or expectorates her medications and pulls out her intravenous lines. Her family supports her decision to refuse medication. The attending physician has asked the ethics consultant to address the question: “Is it ethically permissible to accept this patient’s refusal of potentially life-saving treatment?"
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