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The Patient's Story


Mr C is a 33-year-old, man with advanced human immunodeficiency virus (HIV) infection (diagnosed in 1992), with a CD4 cell count of less than 200/μL (20 × 109/L), an HIV viral load of higher than 750 000 copies/mL despite ongoing antiretroviral therapy, and a history of many past opportunistic infections. These infections included Pneumocystis jiroveci pneumonia, cryptococcal meningitis, cytomegalovirus retinitis, and disseminated Mycobacterium avium complex infection. He has also had rectal carcinoma, scrotal carcinoma in situ, peripheral neuropathy, and chronic wasting syndrome.

Treatment-related complications have included (1) thrombocytopenia after chemotherapy and radiation for rectal carcinoma, (2) a ruptured globe after multiple intravitreal ganciclovir implants for chronic cytomegalovirus retinitis, (3) uveitis secondary to rifabutin, and (4) chronic renal insufficiency secondary to tenofovir. Recent medications have included didanosine, ritonavir, saquinavir, efavirenz (all recently suspended because of worsening nausea and anorexia and concerns about possible lactic acidosis), levofloxacin and ethambutol (also recently suspended because of gastrointestinal intolerance), fluconazole, trimethoprim-sulfamethoxazole, valacyclovir, azithromycin, long-acting morphine sulfate, dronabinol, zolpidem, sertraline, famotidine, filgrastim, and erythropoietin.

Mr C has been admitted and discharged from hospice programs several times and has had conflicting feelings about advance directives concerning life-prolonging interventions. Because of his persistently high viral load, Dr K (Mr C's physician at an HIV specialty clinic) wonders whether Mr C has consistently adhered to antiretroviral therapy regimens. In recent months, his mobility has steadily worsened because of neuropathy and progressive loss of vision, and he has relied on a motorized scooter to move around outside his home. Ms D (Mr C's aunt, who is his primary caregiver) and Dr K both noted a progressive cognitive deterioration during the preceding several months.


Mr C, Ms D, and Dr K were interviewed by a Perspectives editor.

MR C: I was diagnosed [with AIDS] in 1992 [at the age of 21 years]…I suppose everyone is really shocked when they find out, but I was stunned…It never occurred to me that it was going to happen to me…Since 1994, I've been near death 6 times, [but] there's only been a couple of times that I wished for death…People say that you planned out your life before you were born. I did not plan this. I wouldn't do this to myself. It cost me an eye. It cost me my mobility,…[but] for me it doesn't really matter what they say. My viral load is off the scale, no T cells, low platelets, but I'm [still] walking around…I've been through a lot.

DR K: [Mr C] started coming to our clinic when he was 23…He went to [the hospital] initially…with Pneumocystis pneumonia, so that was his AIDS-defining diagnosis. He already knew he was positive for 3 years, got no treatment after he was identified as being infected but presented with Pneumocystis. Then, I probably saw him 3 months later in our ...

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