A 44-year-old female patient, who is a native of Africa, recently came to the United States to join her son, who is a naturalized U.S. citizen. She does not speak English, but my clinic has a staff member fluent in her native language. Through this interpreter, the medical staff obtained a history of urinary bladder problems that have persisted for at least three months. After detailed questioning, I learned that her symptoms were chronic pain and frequent, urgent urination.
Abdominal examination revealed only some suprapubic tenderness, and the patient refused a pelvic examination. A urinalysis showed that hematuria was the primary abnormality. The urinalysis did not suggest infection, and an infection would not account for the duration of symptoms. I considered interstitial cystitis, for which there is no consistently effective treatment, and in which blood in the urine does not usually occur. My concern was that the patient had bladder cancer that should be identified and treated rapidly.
I communicated my clinical concern to the patient, but she continued to refuse further examination such as cystoscopy. She indicated that her religious beliefs did not allow such “intimate” exposures. The patient's son attempted to persuade her to undergo more evaluation. There was no question of her legal competency, and, through the interpreter, careful efforts were made to help her understand the importance of a complete diagnosis and proper treatment. However, the patient wanted me to only relieve her symptoms. How should physicians respond to patients who refuse necessary medical care based on their religious beliefs?
This dilemma is complex. In this scenario, the patient limited the efforts to help her because of religious beliefs, and attempts at persuasion were not successful. The language limitations were reasonably addressed by a staff translator. Otherwise, the son of the patient would have been a means of communication, but he could have been biased. The basic ethical principle involved in the scenario is the respect for patient autonomy. This principle is protected even if she is considered to be in danger because she refuses appropriate procedures. There are well-publicized and long-standing laws protecting a competent patient's right to refuse any recommended treatment or physical examination.
However, medical professionals are subject to some degree of “obligatory beneficence.”1 Beneficience is one of the important roles society expects from physicians. In the 20th century, the concept of beneficence was often confused with medical paternalism, and many well-meaning physicians felt comfortable with the “doctor knows best” attitude of patients. As the principle of respect for autonomy grew in prominence with the bioethics discipline, paternalism in medical practice was reduced.
It is assumed that a reasonable attempt was made to fully explain the need for diagnosis of the presenting symptoms, which suggest a chronically inflamed urinary bladder at best and a malignancy at worst. Given the difficulty of oral interpretation, other attempts to help the patient understand the situation should have been pursued (e.g., hospitalization, further efforts with language).
There might be diagnostic techniques that could be substituted for pelvic examination and subsequent cystoscopy (e.g., intravenous contrast media studies, computed tomography). Radiologic consultation could provide answers to the feasibility and accuracy of less-invasive evaluations. However, these indirect methods may not provide the needed diagnostic information.
If interstitial cystitis is assumed, the only option is pain control, because the condition remains formidably resistant to treatment. However, if bladder cancer is assumed, the physician is still faced with the difficult obligation of adequate informed consent and the possibility that the patient will refuse surgical intervention.
The scenario does not give details about the patient's specific religious reasons for refusing pelvic examination and cystoscopy. Determining the precise religious background with careful questioning is paramount. For this commentary, I will presume that the patient was a practicing Muslim. Without knowing the specific country of origin, only speculation about her refusal is possible because of the wide range of social and religious practices in Africa.
Modesty, chastity, and restraint for women are important in Muslim culture2,3; whether a medical examination is relevant to these is arguable. One study showed that immigrant Muslim women have low rates of health care use, especially in screening procedures such as those for cervical cancer.4 The authors of the study concluded that religious and cultural beliefs, such as highly valued modesty, contribute to a reluctance to seek medical care. Other barriers such as language, transportation, lack of insurance coverage, and family pressures also add to the low rate of medical use.4 Caring for a hospitalized Muslim patient includes additional issues such as dietary regulations and end-of-life preferences.5
In the scenario, it may be possible to involve a representative of the appropriate clergy, who could mediate between the physician and the patient. The clergy member might convince the patient that accepting the needed evaluation and treatment would not compromise her religion. Conversations with a clergy member could also help her further understand the need for a diagnosis.
The clinical realities and language interpretation needed in this scenario would require several hours for resolution and understanding. Few medical institutions are staffed for this type of difficult communication. An important obligation in medical care is to assure the patient whose problem might be life-threatening that adequate attention will be given to the diagnosis, followed by thorough discussions and clarification about possible treatment options. However, the patient must be fully informed to the extent allowed by the patient's culture and family.5 Although the patient has the right to make choices without interference or coercion, this scenario is a good example of the balance between physician beneficence and patient autonomy.2