A 23-year-old woman came to my office with her newborn son for a well-child visit; although the father was not involved with her or the infant, the mother appeared to be devoted to the infant and indicated that she had desired the pregnancy. Prenatal care had been provided elsewhere, and the only records were those from the mother's admission to labor and delivery. She described an uncomplicated prenatal course, a normal spontaneous vaginal delivery and a healthy postnatal beginning.
The infant was brought to the office for three subsequent visits and was up-to-date on his immunizations. The mother was very loving toward him and showed appropriate attention at each visit. However, the nine-month and 12-month visits were missed, in part because of transportation problems, as the mother lived an hour's drive from the clinic.
Nevertheless, the mother had made several visits for her own health care, including one visit for enlarged lymph nodes in the neck. She said that she had enlarged lymph nodes on several other occasions, in relation to “colds,” and that she now had no symptoms other than a headache. She emphatically denied having human immunodeficiency virus (HIV) infection or being at risk for the disease. She was sent to a surgeon, but she did not keep her appointment. During a follow-up telephone call, she said that the enlargement of the nodes had resolved.
When the infant was 13 months old, I received a message from the mother that he had been admitted to the hospital for treatment of pneumonia. I spoke with the pulmonary attending, and he said that after extensive questioning, the mother admitted having tested positive for HIV infection during the pregnancy. She had taken zidovudine (AZT) prophylaxis during pregnancy and the child had been tested for HIV postnatally, unbeknownst to me; ultimately, it turned out that the infant was not positive for HIV.
I decided to mention to the mother that I had learned of her HIV status. I asked her why she hadn't told me about this when I saw her in the office for enlarged lymph nodes, and I repeatedly mentioned that I felt she should be evaluated for her HIV infection. She remained evasive in her answers. The only information she divulged during our last telephone conversation was that she had told no one except a close female friend and her mother about her disease.
It is always frustrating when patients withhold important medical information or are not trusting or honest with their physicians.1 In these situations, it is helpful to first look at the possible reasons for the lack of forthrightness.
It might seem surprising, but what the mother in this case has done is not unusual among HIV-infected women: she has neglected her own health care while focusing on the care of her child. The mother is apparently not interested in antiretroviral therapy for herself, but she did take AZT antenatally to protect her son from acquiring HIV. She seems to be loving and appropriate with him in the office, and although she has not followed through with all of her son's well-baby visits, she generally has not neglected his care. She has followed through with her son's HIV testing, and we know he ultimately tested negative. She obviously is trying to provide for her child.
Why has the mother neglected her own health care? Perhaps she has heard that treatment for HIV infection is ineffective, toxic or difficult to take. Or she might be ashamed about her infection and the manner in which she acquired it. Perhaps she feels unworthy of care for herself.
Another powerful reason for avoiding care could be denial. The mother's rationale for refusing treatment might be that if she starts taking antiretroviral and prophylactic medications, others will know she is infected, and her world will change. It is understandable that this could be terrifying to her. She might be afraid of losing the support of friends, as well as the support of her physician.2 It is easy to imagine a very frightened, isolated woman, worried about her future and that of her son, just trying to get by from day to day. With this in mind, a gentle approach is most likely to be helpful.
Although the mother's refusal of medical care ultimately must be respected, we as physicians are concerned about her and would very much like to facilitate good care. We suggest the following strategy: The physician can make another telephone call to the patient, being sure to ask if she is able to talk privately. The physician can express concern that she receive the help she wants while conveying respect for the tremendous strength she has demonstrated in caring for her child amidst difficult circumstances.
In this case, the physician's concern could be framed as “Dr. Pulmonary told me of the heroic job you've been doing taking care of your son. As part of our professional discussion, he also told me about your HIV infection. I have been thinking about you, and just needed to let you know that I'm concerned and available to help out in any way that I can.”
The mother should be assured of the physician's commitment to provide ongoing support and medical care and protect her confidentiality. The physician could also suggest that if transportation is a problem, it might make sense to transfer her care to a physician closer to home.
Patients who are fearful about receiving care are often reassured to learn that now is a very hopeful time in HIV treatment, because of the availability of potent new therapies.3 It should be emphasized to the mother that treatment might not only preserve her health but also could prolong her life, increasing her chances of being with her son until he grows up. Trying to delve into her reasons for avoiding care or inquiring about the health status of the infant's father might be too threatening at this point and should be avoided. Medical care for non–HIV-related problems, as well as ongoing care for her son, should be offered.
To help provide the mother with support and education and to decrease her sense of isolation, she can be referred to local support services. We also recommend the California-based group, WORLD (Women Organized to Resist Life-threatening Diseases), which publishes a newsletter for HIV-infected women.