Section Two: Caring for Patients Living with HIV/AIDS
The United States Department of Health and Human Services recently announced a 26 percent decline in HIV- and AIDS-related deaths between 1995 and 1996.1 The decline in HIV/AIDS mortality has been attributed to the development of new therapies in the treatment of people with AIDS and has increased the average life expectancy of those diagnosed with HIV. It is estimated that 650,000 to 900,000 people are now living with AIDS in the United States.2
Barriers to Care
In treating people with AIDS, many health professionals have to cope with their fear of contagion and feelings of having not learned enough about AIDS during medical training to safely treat these patients. According to a recent survey of medical students, 71.2 percent believe they place their own safety at risk by working with people with AIDS, and more than half feel health-care workers have the right to refuse care to AIDS patients. A minority, only 24.1 percent, say they are willing to perform mouth-to-mouth resuscitation on a patient with AIDS.3
Another survey found a significant portion of medical students have a high level of discomfort in dealing with HIV-seropositive patients, with taking a patient’s sexual history, and with homosexuality. A number of students also felt uncomfortable touching HIV-seropositive patients.4
Such feelings are shared by a significant number of practicing physicians. According to a 1992 survey, 40 percent of North Carolina physicians reported having refused care for or having referred new HIV-infected patients to another physician.4 A similar survey found that 62 percent of physicians are reluctant to treat patients with AIDS. A self-perceived lack of knowledge, prejudice against HIV-infected persons or groups at high risk for HIV-infection, and inadequate ambulatory care training were cited as possible factors for their trepidation.5
There is no evidence of HIV transmission through either touching, or the sharing of toothbrushes, utensils, or drinking glasses. HIV transmission is almost exclusively limited to “intimate sexual contact, transfusion of blood and blood products, and intravenous drug use.”6 There is little risk of contagion during medical procedures, even when physicians must perform procedures such as mouth-to-mouth resuscitation, IV insertion, and drawing blood.
The risk of HIV transmission through mouth-to-mouth resuscitation, for example, is extremely slim because of low infectious virus titiers and properties of saliva that inhibit HIV.6 Additionally, physical barriers such as the bag-valve-mask or face shield offer added protection and alleviate clinicians’ anxieties.
There is, however, evidence that the human bite is a potential route of HIV transmission. A bite from a patient could occur in the hospital setting. It is believed that the blood, not the saliva, is responsible for transmission, and that the risk of transmission depends on the degree of injury of both biter and victim.6 Every effort should be made to eliminate the possibility of being bitten by a patient regardless of the type of infection for which the patient is being treated.
There is a high level of concern among health-care workers regarding the risks of contagion through needlestick injuries and percutaneous or mucous-membrane exposures to blood or body fluids. Data from the Centers for Disease Control and Prevention (CDC) are reassuring. According to a 1997 CDC report:
“As of April 30, 1987, 332 health-care workers with a total of 453 needlestick or mucous-membrane exposures to the blood or other body fluids of HIV-infected patients were tested for HIV antibody at the National Institutes of Health. These exposed workers included 103 with needlestick injuries and 229 with mucous-membrane exposures; none had seroconverted. A similar study at the University of California of 129 health-care workers with documented needlestick injuries or mucous-membrane exposures to blood or other body fluids from patients with HIV infection has not identified any seroconversions. Results of a prospective study in the United Kingdom identified no evidence of transmission among 150 health-care workers with parenteral or mucous-membrane exposures to blood or other body fluids, secretions, or excretions from patients with HIV infection.”
While the risks are low, there do appear to be some instances in which health-care workers did become seropositive as a result of needlesticks and contact between the health-care worker’s skin and the blood or other body fluids of the HIV positive patient. The CDC notes,
“In addition to health-care workers enrolled in prospective studies, eight persons who provided care to infected patients and denied other risk factors have been reported to have acquired HIV infection. Three of these health-care workers had needlestick exposures to blood from infected patients. Two were persons who provided nursing care to infected persons; although neither sustained a needlestick, both had extensive contact with blood or other body fluids, and neither observed recommended barrier precautions. The other three were health-care workers with non-needlestick exposures to blood from infected patients. Although the exact route of transmission for these three infections is not known, all three persons had direct contact of their skin with blood from infected patients, all had skin lesions that may have been contaminated by blood, and one also had a mucous-membrane exposure.”
Observing universal precautions can further reduce the risk of HIV transmission and may have prevented at least two of these infections.
The universal precautions were developed by the CDC to help protect healthcare workers from infectious diseases. The following are the most basic tenets of the guidelines and should be used with all patients:
- Healthcare workers should wear protective barriers in anticipation of contact with a patient’s blood and other body fluids. These barriers include gloves to protect the skin, and masks, protective eyewear or face shields to protect mucous membranes of the mouth, nose, and eyes. Gowns and aprons should also be worn if the splattering of blood or other body fluids is a possibility. Gloves should be replaced after contact with each patient and hands washed.
- Any skin contaminated with blood or other body fluids should be washed immediately.
- Care should be used at all times to prevent injury from needles, scalpels, and other instruments. To prevent needlestick injuries, needles should not be recapped, purposely bent or broken by hand, removed from disposable syringes, or otherwise manipulated by hand. Disposable syringes, needles, and other sharp instruments should be placed in puncture-resistant containers for disposal; the puncture-resistant containers should be as close as practical to the use area.
- Ventilation devices, such as mouth-pieces and resuscitation bags, should be available for emergency mouth-to-mouth resuscitation.
- Healthcare workers with lesions or weeping dermatitis should avoid direct contact with patients and patient-care equipment.
- Pregnant healthcare workers should follow precautions to minimize the risk of HIV transmission to their infants.
The universal precautions provide detailed information protection from infection during invasive procedures, autopsies, dialysis, and dental and laboratory work. The entirety of the CDC’s universal precautions are appended. You may also wish to seek out opportunities to work with people with AIDS in order to learn more about how to meet their needs.
Taking a Sexual History
Physicians can help decrease the spread of sexually transmitted diseases through prevention-focused education and early detection. However, few physicians take a sexual history from their patients. According to one survey, 47 percent of adults patients have never been asked by a physician about their sexual relationships. In California, only 10 percent of 1,000 physicians gathered enough information to adequately identify and counsel patients at risk for HIV infection.7
Patients are often less reluctant to give a sexual history than their doctors imagine. In fact, 91 percent of patients surveyed believe taking a sexual history is appropriate. A number of studies suggest that a lack of knowledge on sexual health or conservative attitudes regarding sexual practices prevent medical students and physicians from taking sexual histories.8
Education programs that include role-play, personal awareness groups, and persons from the community who are infected with HIV or AIDS have helped alter physician’s attitudes and behaviors.8
Giving HIV Test Results
All doctors are understandably uneasy delivering an HIV test result. A patient’s reaction to an HIV-positive consultation is a significant factor in whether he or she will be a willing participant in treatment. Further, the manner in which the test results are delivered can help reduce suicidal behavior after notification of a seropositive HIV result.8
The following elements were described by patients as contributing to a helpful HIV-positive counseling experience:8
- Reassurance of the patient’s overall health status
- Detailed and accurate information
- A clear explanation of the information provided
- A high degree of empathy and support expressed by the physician
- Time to ask questions
- Information about disease progression, symptoms, and available treatments
The following elements were described by patients as contributing to an unsatisfactory HIV-positive counseling experience:8
- Having little or no time to express concerns or ask questions
- Being interrupted during the consultation and a lack of privacy
- Failure of the doctor to maintain eye contact by burying his/her head in clinical notes
- Failure to ask about social supports or offer follow-up consultations
- Failure to discuss progression of the disease, symptoms, or available treatments
- Failure to reassure patients about their general health
- Criticism of the patient by the person giving the information
While doing all the right things during a consultation may provide the patient with a “satisfactory” experience, it is still difficult for most of us to understand the impact of receiving news many patients perceive as a death sentence. The following are comments and suggestions from patients drawn from AIDS Care, 1994:8
“The one aspect of being told that you are HIV is that as soon as you find out your mind becomes totally mixed with finding out how long you have before you die. Because of this all positive thinking is lost, your ability to think objectively about the future is muted. I think therefore that the consequences of a positive result, what would happen, and perhaps life expectancy, etc., should be discussed before the test is given. Once the test is given the result should then be available as soon as possible preferably within 24 hours as then the positive counseling would still be fresh in the patients mind.”
”I think that someone really needs a friend or lover with them at the time they are being told the results, as very often everything goes blank and really you are not sure about what to say or ask at the time. It’s not easy walking out of a doctor’s room after being told you are positive with just a head full of thoughts and no one to talk them over with.”
“As the diagnosis didn’t sink in, the shock came in the presence of work colleagues, which eventually proved a disaster. I lost my job. I think I should have been given some advice about not going back to work. Also, I had no follow-up help. I was left wondering if I was going to die in a few weeks. I had four weeks of trying to find someone to talk to. I didn’t understand what the diagnosis meant.”
“Each person is different and will require different approaches to being given a test result. A flexible approach is therefore required. Non-judgmental, non-prescriptive, open, honest, truthful, receptive approach. No attempt to give false reassurance. Plenty of written information and contact numbers of Body Positive, Positive Women, etc., plus opportunity for a second visit.”
Clearly, there is no easy way to deliver such news to a patient. However, counseling skills improve with education and experience.
Terminally ill patients often harbor feelings of being a burden, being dependent on others for their personal care, and a loss of dignity. Recent surveys have found that these are the primary reasons terminally ill patients request physician-assisted suicide.9 While these feelings are most certainly shared by patients of all ages, they commonly strike a uniquely deep chord within younger patients, who are suddenly and unexpectedly faced with their own mortality and many of the indignities they had thought were endured only by the elderly and infirm. AIDS is the second leading cause of death (after accidents) for those aged 25-44.1
1. U.S. Department of Health and Human Services. Vital statistics report shows significant gain in health. HHS News Sept. 11, 1997.
2. Steenbok R. Battling HIV on many fronts. N Engl J Med. 1997;337(11):779-781.
3. Currey CJ, Johnson M, Ogden B. Willingness of health-professions students to treat patients with AIDS. Acad Med. 1990;65(7):427-434.
4. McDaniel JS, Carlson LM, Thompson NJ, Purcell DW. A survey of knowledge and attitudes about HIV and AIDS among medical students. J Am Coll Health. 1995;44(1):11-14.
5. Orlander JD, Samet JH, Kazis L, Freeberg KA, Libman H. Improving medical residents’ attitudes toward HIV-infected persons through training in an HIV staging and triage clinic. Acad Med. 1994;69(12):1001-1003.
6. Sun D, Bennett RB, Archibald DW. Risk of acquiring AIDS from salivary exchange through cardiopulmonary resuscitation and mouth-to-mouth resuscitation. Seminars in Dermatology. 1995;14(3):205-211.
7. Ross PE, Landis SE. Development and evaluation of a sexual history-taking curriculum for first- and second-year family practice residents. Fam Med. 1994;26(3):293-298.
8. Pergami A, Catalan J, Hulme N, Burgess A, Gazzard B. How should a positive HIV result be given? The patient’s view. AIDS Care. 1994;6(1):27-37.
9. Drickamer MA, Lee MA, Ganzini L. Practical issues in physician-assisted suicide. Annals of Internal Med. 1997;126(2):146-151.