CASE 8

George Dennis

A 35-year-old African American man with AIDS

Ronald G. Collman, MD

University of Pennsylvania School of Medicine, Philadelphia, PA, USA

Educational Objectives

TACCT Domains: 3, 6

Case Summary, Questions and Answers

George Dennis is a 35-year-old African American man who comes unaccompanied to his primary care physician (PCP), Dr. Carey, complaining of a cough for the past 7 days. In addition, he reports that, for the past 3 months, he has not been able to play his usual weekend basketball game because of shortness of breath. Given the acute cough, Dr. Carey believes that Mr. Dennis has a community-acquired pneumonia that could be treated as an outpatient. However, because of the patient’s young age, as well as his shortness of breath, Dr. Carey is also concerned about HIV-related pneumonia and therefore questions him about risk factors for HIV, asking Mr. Dennis if he is “gay,” a “drug user,” and if he has “unprotected sex” with women. Mr. Dennis denies all three. He is given an antibiotic for a presumed community-acquired pneumonia and instructed to follow-up in 2 weeks if he does not improve. Mr. Dennis returns to Dr. Carey’s office 1 week later, this time with his sister, who urged him to come back sooner. She reports that his cough has gotten worse and he appears to be persistently short of breath. Because of Mr. Dennis’ worsening condition, Dr. Carey sends him immediately to the Emergency Department (ED). There, he is found to be hypoxemic (oxygen saturation on room air was 83%) with his chest x-ray demonstrating a diffuse interstitial pattern. He is consequently admitted to the hospital where bronchoscopy is performed and he is diagnosed with Pneumocystis jiroveci (formerly known as Pneumocystis carinii) pneumonia. Subsequent testing confirms that Mr. Dennis is HIV-positive. When questioned again about risk factors for HIV infection, Mr. Dennis acknowledges that he has engaged in same-sex activity and has had unprotected sex with other men, but that he is currently in a monogamous same-sex relationship. He agrees to notify his partner of his HIV status, but insists that this information not be disclosed in any way to members of his family.

1 Why might Mr. Dennis have been less than forthcoming about his sexual activity and sexual orientation during the initial visit?

It almost goes without saying that topics such as sexual orientation and sexual activity may be difficult for patients to discuss during an initial visit. For some it may be simply the discomfort of revealing something highly personal to a stranger. Additionally, although there has been a steady increase in the acceptance of homosexuality in the wider society, individual gay men and lesbian women may still have a fear of negative consequences that might come with revealing their orientation. Or they may be at a stage in which they are not yet personally comfortable with being open about their homosexuality. These concerns about publicly acknowledging one’s sexual orientation may be further heightened among blacks, given that open expression of homosexuality is less accepted in the African American community. Further, many men with same-sex sexual activity may not self-identify as homosexual or gay. This occurs among all groups, but has been suggested to be more common in the African American community, where the phenomenon has been termed being on the “down low.” Being on the “down low” contributes to the increasing HIV rates in African American women, as they can be partnered with a man who is having unprotected sex with men. The societal pressure on men to be on the “down low” may lead to significant stress and result in high-risk sexual practices. The media attention to this issue has not yet resulted in sufficient research support to fully investigate this behavior.

Study Shows Doctors are Often in the Dark about Patients’ Sexual Behavior

The New York City Department of Health recently published a study of 452 men who were interviewed anonymously at gay bars and clubs. Participants were tested for HIV and offered medical and social services as needed. The study showed that 39% of the men who had sex with other men in New York City had not disclosed their sexual orientation to their doctors. The survey also showed that 60% of African Americans, 48% of Hispanics, and 47% of Asian men who had sex with men did not disclose their sexual activity compared with 19% of Caucasian men.

The study also showed that men who disclosed having sex with men were twice as likely to have been tested for HIV, compared with those who did not disclose their same-sex activity (63% vs. 36%). The low rate of HIV testing among nondisclosers suggests that health care providers continue to practice risk-based HIV testing in New York City. Therefore, health care providers may not offer HIV testing unless they know that a patient has a risk factor for HIV. The current national CDC guidelines for HIV testing advise health care providers to offer HIV testing to all patients between the ages of 13 and 64.

2 When exploring risk factors for HIV with patients, what approaches might be used in discussing these potentially sensitive and private issues?

Eliciting honest and complete responses around issues such as sexual orientation and sexual activity, as well as illicit activities such as drug use, may require an approach that is different from that used to obtain other parts of the medical history. Questions should be asked in a way that is as nonjudgmental as possible and in a manner that distinguishes between the behavior and the person. Asking, “Are you sexually active with other men?” is preferable to, “Are you gay?” or “You don’t have sex with other men, do you?” Similarly, “Have you used any drugs that involve sharing needles?” is more likely to elicit useful information than, “You aren’t a drug user, are you?” It is important to provide a setting that is safe for disclosure and ensures privacy. Family members and friends may need to be excluded from the conversation. Each situation is unique and certainly requires sensitivity and skill, so as not to alienate loved ones. Also bear in mind that probing or pushing too hard may increase the resistance of the patient, recognizing that, although the patient may not be forthcoming now, with time as trust develops they may be more willing to talk about these sensitive issues. Finally, it is important to recognize that all patients should be considered as being at risk for HIV infection, so the absence of specific identifiable factors should not exclude consideration of that diagnosis in the appropriate setting. Some HIV specialists feel that elucidating the patient’s current high-risk behavior is more important than the manner of the initial transmission of the HIV infection.

The Epidemiology of HIV Infection

It is estimated that, in the U.S., about 1.2 million people are currently infected with HIV, of whom 44% acquired infection through sex between men, 34% through heterosexual intercourse, and 17% through drug injection activity. The proportion of infections in women has risen dramatically (currently ∼27%), mainly through sexual acquisition. New infections acquired through blood and related products are now rare in the developed world due to excellent screening procedures. Infections among children are also now infrequent in the U.S. (<200/year) due to screening and antiretroviral treatment of pregnant women.

Racial and ethnic minorities are disproportionately affected by HIV. About 50% of the new AIDS diagnoses in the U.S. occur among African Americans, despite the fact that they represent only 12% of the U.S. population, and 20% occur among Hispanics (14% of the U.S. population). The rate of HIV/AIDS diagnosis is 7 times higher among African American men than white men, and 21 times higher among African American women than white women. Up to half of infected individuals in minority groups do not know their infection status.

Worldwide it is estimated that about 33 million people are currently infected (including 2.5 million children) with 2.5 million new infections and 2.1 million deaths each year, plus about 20 million who have already died of the infection.

Mr. Dennis was treated with trimethoprim/sulfamethoxazole and prednisone and was discharged from the hospital after 8 days. During his hospitalization, his biological family did not learn of the exact nature of his infection, believing instead that he had a routine pneumonia. He was referred to the immunodeficiency clinic where he was found to have a CD4 count of 100 and a plasma viral load of 150,000, and was started on three-drug HAART (highly active antiretroviral therapy) treatment. When seen 4 months later, his immune status had improved significantly, with his viral load declining to undetectable levels and his CD4 count rising to 350. Mr. Dennis reminded the physician again that he did not want his family to know of his AIDS diagnosis. He informed the physician that he had designated his partner, Mark Barnes, as his surrogate decision maker and the only one with whom the physicians could discuss his medical issues.

3 How might you respond to Mr. Dennis when he asks you to withhold information from family members?

Patient autonomy and confidentiality are fundamental patient rights that should be respected and protected as best as possible. In addition to these ethical constraints, disclosure of confidential patient information is legally restricted under the federal law, “Health Insurance Portability and Accountability Act of 1996” (HIPAA), which regulates how personal health information is handled and gives individuals the right to restrict access to that information. This would of course be especially relevant for highly sensitive information, such as a diagnosis of HIV/AIDS. HIPAA regulations do not restrict sharing of medical information necessary to provide appropriate medical care. In addition, HIPAA regulations generally also allow information to be shared with family members unless patients indicate that they do not want it disclosed. Nevertheless, if a patient asks that the information not be shared, it is incumbent on the physician and all health care providers to follow those instructions, particularly when an alternate surrogate is identified (Mr. Barnes).

However, in Mr. Dennis’ case, the reality is that he is asking the physician to make a promise that may be difficult to keep. The information he is trying to conceal from his family may eventually become known to them, either inadvertently or through their own deductive reasoning. In other circumstances, where an alternative surrogate decision maker has not been identified, disclosure may be required because the family must become involved due to issues related to care or decision making. Concealment also has the potential of undermining the family’s trust in the physician if they discover that information has been withheld from them, even at the instruction of the patient. Further, anecdotal experience suggests that most families do want to be involved in the care of a loved one and do respond well when they learn that a loved one is HIV-positive.

Six months after his discharge, Mr. Dennis was admitted to the hospital with jaundice and altered mental status (obtundation) that was believed to be the result of liver toxicity from the HAART. His partner, Mark Barnes, acting as his decision maker, instructed the medical team not to inform Mr. Dennis’ family of his admission. He believed this was consistent with the wishes of the patient. Five days after his admission, Mr. Dennis’ sister and mother learned that he was in the hospital and arrived there, extremely angry that they had not been immediately informed of his hospital admission. They confronted Mr. Dennis’ nurse, demanding to speak to Dr. Carey about why the family had not been notified of Mr. Dennis’ admission and why medical decisions regarding the care of their brother and son were being made without their involvement.

4 How might Dr. Carey respect the patient’s autonomy while responding meaningfully to the family?

There may well be several possible responses, but based on our experience, we believe that advocating for disclosure is most helpful in both the short and long term. If, as in this case, the patient is not able to participate in further discussions, the process may begin by first meeting with Mr. Dennis’ partner (Mr. Barnes) and expressing the concerns of the medical team about further concealment of the HIV/AIDS diagnosis and continued exclusion of the family from discussions. It would be important to convey to Mr. Barnes that: (i) the current situation, and the tension that has arisen, distract the physicians and nurses from their care of Mr. Dennis; (ii) it is in the best interest of the patient, given this distraction, to inform the family; and (iii) ideally, Mr. Barnes should be part of this conversation. Here is an example of the language that may be helpful:

“We are at a point now where, in practical terms, it is impossible for us to continue to keep his diagnosis a secret from his family. More importantly, the efforts we make to conceal his diagnosis and his sexual orientation from the family are distracting us from providing the best care possible for Dennis. I hope that you and I together can figure out the best way of informing the family so that we can diffuse any hurt or anger they may be feeling and to gain their support for Dennis.”

If Mr. Barnes, acting as Mr. Dennis’ surrogate, agrees, Dr. Carey should then meet with the family, ideally with Mr. Barnes present. After revealing the diagnosis, the family should be informed of Mr. Dennis’ previous wishes that his HIV status not be disclosed to family and that he had designated Mr. Barnes to make decisions for him if he could not speak for himself. This will help the family to understand the professional and legal obligations that led to withholding information from family members and deferring to Mr. Barnes for medical decisions. The family may well feel hurt, anger, or embarrassment about learning of the diagnosis and/or that their son/brother had chosen to exclude them. It is important that these emotions, if present, be acknowledged and discussed.

“Let me begin by saying that Mr. Dennis has AIDS. We made this diagnosis six months ago when he was hospitalized for pneumonia. At that time, and then subsequently, he gave clear instructions that his family not be informed about his disease. Although I was not in agreement with this, my professional obligations require that I do my best to protect his privacy. However, I had made it clear to Mr. Dennis that there might come a time in the future when it would be best for us to speak to you as we are doing now. He had also legally selected Mr. Barnes as the person to make decisions for him if he could not speak for himself. This is why you were not involved in his decision making. I suspect that you are feeling several emotions right now. The diagnosis may be a shock to you and/or there may be some anger or hurt that George had chosen to conceal this information from you. What are you feeling right now?”

The meeting should conclude, ideally, with a sense of an alliance of all involved to do what is best for the patient’s recovery. Should Mr. Barnes refuse Dr. Carey’s suggestions, regardless of how challenging it is for him, Dr. Carey must respect the patient’s wishes. Often in medicine, respecting autonomy of the patient can be painful; watching a 20-year-old man with three small children die of anemia due to refusal of blood transfusions, or the inability to bring a family together over an illness can be challenging for all physicians. Fundamentally, our patient’s bodies and choices are theirs and doing no harm includes respecting wishes we may not choose for ourselves.

References: Case 8

Bernstein K.T., Liu K.L., Begier E.M., Koblin B., Karpati A., Murrill C. Same-sex attraction disclosure to health care providers among New York City men who have sex with men: implications for HIV testing approaches. Arch Intern Med 2008;168(13):1458–64.

Centers for Disease Control and Prevention (CDC). HIV prevalence, unrecognized infection, and HIV testing among men who have sex with men-five U.S. cities, June 2004-April 2005. MMWR Morb Mortal Wkly Rep 2005;54(24):597–601.

Denizet-Lewis B. Doubles lives on the down low. New York Times, August 3, 2003.

Hook M.K., Cleveland J.L. To tell or not to tell: breaching confidentiality with clients with HIV and AIDS. Ethics Behav 1999;9:365–81.

Martinez J., Hosek S.G. An exploration of the down-low identity: non gay-identified young African-American men who have sex with men. J Natl Med Assoc 2005;97(8):1103–12.

Meckler G.D., Elliott M.N., Kanouse D.E., Beals K.P., Schuster M.A. Nondisclosure of sexual orientation to a physician among a sample of gay, lesbian, and bisexual youth. Arch Pediatr Adolesc Med 2006;160:1248–54.

Miller M., Serner M., Wagner M. Sexual diversity among black men who have sex with men in an inner-city community. J Urban Health 2005;82(1): i26–34 (suppl 1).

Gerberding J.L. Clinical practice. Occupational exposure to HIV in healthcare settings. N Engl J Med 2003;348(9):826–33.

Gostin L.O. National health information privacy: regulations under the Health Insurance Portability and Accountability Act. JAMA 2001;285(23): 3015–21.

Lehman D.A., Farquhar C. Biological mechanisms of vertical human immunodeficiency virus (HIV-1) transmission. Rev Med Virol 2007;17(6):381–403.

Lo B., Dornbrand L., Dubler N.N. HIPAA and patient care: the role for professional judgment. JAMA 2005;293(14):1766–71.

Malebranche D.J., Peterson J.L., Fullilove R.E., Stackhouse R.W. Race and sexual identity: perceptions about medical culture and healthcare among black men who have sex with men. J Natl Med Assoc 2004;96(1):97–107.

Rabow M.W., Hauser J.M., Adams J. Supporting family caregivers at the end of life:”they don’t know what they don’t know.” JAMA 2004;291(4):483–91.

Stokes J.P., Peterson J.L. Homophobia, self-esteem, and risk for HIV among African American men who have sex with men. AIDS Educ Prev 1998; 10(3):278–92.

UNAIDS/WHO AIDS Epidemic Update: December 2007. World Health Organization, Geneva, Switzerland.

Vernillo A.T., Wolpe P.R., Halpern S.D. Re-examining ethical obligations in the intensive care unit: HIV disclosure to surrogates. CritCare 2007;11:125.

Wawer M.J., Gray R.H., Sewankambo N.K., et al. Rates of HIV-1 transmission per coital act, by stage of HIV-1 infection, in Rakai, Uganda. J Infect Dis 2005; 191(9):1403–9.

Young R.M., Meyer I.H. The trouble with” MSM” and ”WSW”: erasure of the sexual-minority person in public health discourse. Am J Public Health 2005;95:1144–9.