1. Ethics in Medicine
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  3. Bioethics Topics
  4. HIV and AIDS

HIV and AIDS

HIV and AIDS

NOTE: The UW Dept. of Bioethics & Humanities is in the process of updating all Ethics in Medicine articles for attentiveness to the issues of equity, diversity, and inclusion.  Please check back soon for updates!

Author:

Jeffrey Kohlwes, MD, Robert Wood Johnson Clinical Scholar  

 

 

 

 

The Acquired Immunodeficiency Syndrome (AIDS) epidemic has had an enormous impact on health care provision in the United States. This impact has occurred largely because the AIDS epidemic has forced the medical community to openly address the needs of populations who have historically been marginalized in our society: gay men and intravenous drug users. The influence of the epidemic was felt on many levels. On the federal level AIDS activists forced the more rapid approval of medicines by the Federal Food and Drug Agency (FDA). State and city departments of public health had to organize culturally sensitive, anonymous HIV counseling and testing centers and on the individual practice level, physicians were forced to confront their own biases to provide ongoing care for a new and possibly transmissible epidemic.

AIDS cases seen by the author in his own practice are used to try to demonstrate some, but certainly not all, of the many ethical issues that confront the practitioner in the day to day care of people with AIDS.

Case 1 addresses these questions:

  • What is the legal decision-making status of a long-term partner?
  • How should I facilitate communication between family members?
  • Who are some other staff members who may be able to help?
  • How should I deal with any prejudices I may have in this case?

Case 2 addresses:

  • What should you do if a patient refuses to be tested?

Case 3 addresses:

  • When should you report a patient's HIV status to the Public Health Department?

Case 4 addresses:

  • Should you prescribe protease inhibitors to a patient who is unlikely to follow through on the treatment regimen?

 

  • Fenton KA, Peterman TA. HIV partner notification: taking a new look. AIDS 1997;11(13):1535-46.
  • Gostin L, Ward J, Baker A. National HIV case reporting for the United States: a defining moment in the history of the epidemic. NEJM 1997;337:1162-7.
  • Parsa M, Walsh MJ Ethics seminars: HIV testing, consent, and physician responsibilities.  Academic Emergency Medicine.  2001 Dec;8(12):1197-9. 
  • Lo B, Wolf L, Sengupta S. Ethical issues in early detection of HIV infection to reduce vertical transmission. Journal of Acquired Immune Deficiency Syndromes.  2000 Dec 15;25 Suppl 2:S136-43.              
  • Scarrow SE.  Obstetrical delivery of the HIV-positive woman: legal and ethical considerations. Obstetrical & Gynecological Survey. 2001 Mar;56(3):178-83. 
  • Keshavjee S, Weiser S, Kleinman A. Medicine betrayed: hemophilia patients and HIV in the US. Social Science & Medicine. 2001 Oct;53(8):1081-94.  
 
 
 
 
 

CASE STUDIES

You are the ICU attending physician taking care of a 40-year-old gay man with AIDS who is intubated with his third bout of pneumocystis pneumonia. His condition is worsening steadily and he has not responded to appropriate antibiotic therapy. The patient's longtime partner, Richard, has a signed durable power of attorney (DPOA) and states that if the patient's condition becomes futile the patient would not want ongoing ventilation. As the ICU attending you decide that ongoing intubation is futile. You consult with Richard and decide to remove the patient from the ventilator to allow him to die in the morning. The patient's Roman Catholic parents arrive from Kansas and threaten a lawsuit if the ventilator is withdrawn.

There are several key questions which come out of this case:

  • Who is the legal decision maker here?
  • What are some of the pertinent social influences in this case?
  • Who are some other staff members who may be able to help?
  • How should the physician deal with any prejudices they have in this case?
Case Discussion

What is the legal decision making status of a long-term partner?
How should I facilitate communication between family members?
Who are some other staff members who may be able to help?
How should I deal with any prejudices I may have in this case?

Resolution

What is the legal decision making status of a long-term partner?

Richard, the durable power of attorney is the legal decision maker in this case. The document is a legally binding agreement that states Richard is the final arbiter of all medical decisions once the patient becomes incapacitated. This creates a legal foundation for Richard to keep his role as the final medical decision maker in conjunction with the attending physician while allowing room for discussion with the family on this difficult topic.

How should I facilitate communication between family members?

This is an unfortunate situation for everybody involved. The physician can help diffuse this situation by trying to understand the different perspectives that each of the involved individuals brings to the situation. The family arrives to see their dying son and may be confronted with multiple issues for the first time. First they may be finding out that their son is gay, that he has AIDS, and that he is immanently dying all at the same time. Any of these issues may be a shock to the family, so it is important to keep this perspective in mind when making difficult care decisions and to communicate clearly and honestly with them. Communication regarding the patient's care should be consented to by the patient whenever possible.

Alternatively, individuals in the gay communities in metropolitan areas that have been severely affected by AIDS have watched many of their friends die of their disease and are very well educated about end of life issues. It is likely that Richard as your patient's DPOA has spent significant time considering these issues with the patient before becoming the patient's surrogate. His role as the patient's significant other is not legally defined in many areas of the United States at this time. This relationship is often the equivalent of marriage in the gay community and should be respected by the hospital personnel in all points of medical care.

Who are some other staff members who may be able to help?

This is a case where several members may help with the decision. ICU nurses often have experience and perspective in dealing with grieving families of terminally ill patients as do staff social workers or grief counselors. Another invaluable resource in this case is a hospital chaplain or spiritual counselor who may be able to provide spiritual support and guidance to the family. It is important here to find out what resources are available in the hospital for Richard and the patient's family and after discussing the case with them, seek help from these other skilled professionals. If you as a physician have cultivated a relationship with these services it is often appropriate to invite them to a family meeting so that they can help you focus the discussion on the care of the patient, who is always your first priority as a physician.

How should I deal with any prejudices I may have in this case?

Much has been written on the responsibility of the physician in taking care of the patient with AIDS. The AMA position is "A physician may not ethically refuse to treat a patient whose condition is within the physician's realm of competence.... neither those who have the disease or are infected by the virus should be subject to discrimination based on fear or prejudice, least of all from members of the health care community." From this quote it is safe to say that the physician has a fiduciary responsibility toward the care of the HIV infected patient and there is no room within the profession for prejudice for people with AIDS. This stand on prejudice should cover not only gay men with AIDS, but also all other patients that a physician takes care of, even the next two cases (Case 2 and Case 3). (See also Personal Beliefs.)

A family conference was called involving multiple staff members including the hospital chaplain. The family's major fear was that withdrawing the ventilator was equivalent morally to suicide and they were afraid of this being a mortal sin. The chaplain was able to address their fears. The ventilator was withdrawn the next morning after the family and friends of the patient had a chance to say good-bye and the patient quickly expired.

A 22-year-old woman is admitted to the hospital with a headache, stiff neck and photophobia but an intact mental status. Lab test reveal cryptococcal meningitis, an infection commonly associated with HIV infection. When given the diagnosis, she adamantly refuses to be tested for HIV.

Should she be tested anyway by the medical staff?

Case Discussion

Testing for HIV, as for any other medical procedure should be done only with the informed consent of the patient. Testing without consent is unethical in this setting. The physician's role in the care of this patient is ongoing support, education and guidance about her various options for care.  

Your patient with cryptococcal meningitis eventually agrees to be tested for HIV and her test comes back positive. Due to her opportunistic infection she receives the diagnosis of AIDS.

Should she be reported to the department of public health?

Case Discussion

AIDS is a currently a reportable diagnosis in all 50 states of the union. Her diagnosis should be reported to the department of public health. Notably, HIV positivity without the diagnosis of AIDS is not reportable in all states. Currently, 30 of 50 states requires reporting of a positive test. It is important to find out the local states laws where you are practicing to know how to approach this problem. (See also Confidentiality.)  

One of your clinic patients is a 35-year-old man with AIDS on Medicare who is an active intravenous drug user. He uses heroin and cocaine, but he never shares needles and is reliably present at all his clinic visits. He admits that he is often unable to take his medicines regularly when he is using drugs. He is asking about antiretroviral therapy with protease inhibitors. You have just read that HIV viral resistance to protease inhibitors occurs rapidly when patients are unable to take their medicines reliably.

Should you prescribe protease inhibitors to this patient?

Case Discussion

This is a difficult and ongoing debate in the care of patients with HIV. Protease inhibitors used in combination with nucleoside analogues have proven a powerful weapon in the fight against HIV. The problem of resistance is a real concern in a patient who cannot take his medicines reliably. Many public health advocates feel that these medicines should not be offered to patients who are admittedly noncompliant because they would be creating resistant clones of virus which could then be passed on to others, or make the individual unable to benefit later if they were able to become compliant. They also argue that the cost of these medications on the health care system is so extreme that they should only be used by those who can fully benefit from them. Others argue the principle of justice which espouses equitable distribution of resources amongst all available people in need, and if the patient wants the medications he should have equal access to them.

There is no answer to this debate at this time. The only clear principle that should be followed here is that of non-abandonment. Whatever your choice is with the patient, the physician's responsibility is to remain available to the patient and continue an ongoing therapeutic relationship and encourage him with information and guidance about his HIV disease and issues of addiction.