Case study 3: A patient with HIV
- Atsushi Asai, M.D.,
Department of General Medicine and Clinical Epidemiology
Kyoto University School of Medicine, Kyoto, Japan
Kyoto University Hospital, Sakyo-ku, Kyoto, 606-01 JAPAN
Tel/fax: 81-75-751-4246
Email: atsushi@kuhp.kyoto-u.ac.jp
(Please note, Atsushi Asai will be at Monash Centre for Human Bioethics most of 1998).

Eubios Journal of Asian and International Bioethics 8 (1998), 15-18.


Mr. A came to a general internal medicine clinic at a university hospital after he tested HIV positive in a previous private clinic. His purpose of the visit was to confirm whether he was really infected with HIV virus. He has never engaged in any high risk behavior and believed that the positive result of HIV antibody test could not be true.

The patient in his twenties, who was single and worked at a very busy company, developed diarrhea about several months ago. A physician in the previous clinic diagnosed that he had chronic inflammation in his colon and administered oral antibiotics. A bacteria which was causing the symptom was not identified. The first antimicrobial treatment was not effective and his symptoms continued. Emaciation and general fatigue followed and persisted. He also developed loss of weight and low grade fever. Several other drugs and interventions had been tried for about 2 months and turned out to be ineffective.

In the course of the medical interventions in the previous clinic, some kind of fungus was cultured in his stool and fungal infection in the colon was suspected. The physician explained that the fungal infection was probably induced by preceding antibiotics treatments and discontinued it. At the same time the physician checked HIV antibody test without the patient's advance permission.

When the positive result came back, the physician disclosed the test result to Mr. A and his elder sister, but no other explanation or no counseling in regard to HIV infection were done. The physician decided to refer Mr. A to a university hospital. He visited the general internal medicine clinic at the university soon after he and his mother got a letter of referral.

Physical examination on his first visit at the clinic revealed generalized lymphadenopathy and low grade fever. He complained of chronic fatigue and pain in his lower abdomen. He requested a physician who examined him, Dr. B, to repeat the HIV antibody test in order to make sure that he was not infecting with HIV virus, in other words, that he was not suffering from AIDS. The test was performed. Dr. B planned to see him a week later to explain a result of the HIV test.

On the day of the appointment, the patient did not appear in the clinic. Dr. B checked the test result and found it positive. A few days later, when Dr. B was out of the hospital, his sister visited the clinic and was seen by one of physicians who was working at the clinic. She asked the physician about the test result. He explained her that he could not inform her of the test result and was obliged to disclose the result to the patient himself.

Dr. B phoned the patient and asked him why he did not show up. Mr. A replied that he was too busy to come to the clinic and asked Dr. B to disclose the result to his sister. Mr. A's sister came to the clinic next week and was disclosed that her brother has been infected with HIV virus and developed AIDS. On her next visit, she reported that she had explained the test result to him. It seemed to her that the patient had anticipated the bad news. She also told Dr. B that his brother thought that there is no chance to cure and he will eventually die no matter what he does. It is pointless to come to the hospital every two weeks and take expensive drugs whose effect are uncertain if he will die anyway. In fact, Mr. A's sister explained, he and his family cannot afford to pay the cost of long-term care. To make the matter worse, he has to work if he wants to earn money to pay the medical cost. If he discontinues working, his family cannot live. He would not have a day off to visit the clinic, fearing his employer becomes suspicious about his health condition. The employer would dismiss him if he knew that Mr. A is infected with HIV. He also thinks that he never want to be a guinea pig used in human experiments.

He has not visited the clinic since the first visit despite his sister's persuasion that there are a lot of things that current medicine can do for him. What should Dr. B do?


Commentary. Can clinical ethics deal with some "real" problems?

- Atsushi Asai, MD.

The presentation of the case provides us with many "common" ethical problems in the care of HIV infected patients. The physician who saw Mr. A in the previous clinic did some of behavior that the principles of clinical ethics has regarded ethically unjustified. First, he did not tell the patient that he would check the patient's HIV status in advance. This behavior constitutes the failure of informed consent, which is one of the most important ethical issues in the care of HIV infected persons in order to prevent irrational discrimination and protect their privacy. Secondly, he disclosed the test result to the patient and his family without prior and post supportive counseling to alleviate the impacts of the bad news Such a blunt disclosure can severely hurt them and may not be ethically justified. Thirdly, no sooner after the patient tested positive than he was referred to the university clinic by the physician. Although the specialty of the physician is not mentioned in the presentation, we can imagine his reluctance to care for the patient. It could mean refusal of care to HIV-infected patients by medical professions. The very reason that the physician referred the patient to the clinic is unclear, but his motivation could include personal fear or discrimination against HIV positive patients.

I am afraid that these ethically problematic behavior are not uncommon. A recent study conducted in 1996 by the study group on HIV/AIDS Epidemiology of the Ministry of Heath and Welfare reveals such trend (1). Of approximately 700 Japanese physicians surveyed, about 40% agreed that physicians should be allowed to test the HIV status of patients without their permission and 40% felt that HIV testing should be done routinely without consent upon hospital admission. Among these, about 70% of the respondents reported that they had obtained informed consent from all patients who underwent HIV antibody test. Half or more of respondents said they felt uncomfortable caring for HIV infected patients with various personal and social backgrounds, although most of them felt that physicians must not refuse to take care of HIV positive patients. The attitudes of the physician Mr. A saw could bring about the distrust of the patient to medical professions and medicine as a whole, and it might result in the actions of the patient later, like refusal of care.

Secondly, ethical problems that Dr. B have had involve the appropriateness of disclosure of HIV status to patient's family, not the patient himself, and refusal of treatment by the patient. In the latter problem, a question regarding whether the patient's refusal is really informed or not, has to be scrutinized. The disclosure of positive HIV status to the family would not be a problem in this case, because Dr. B got prior permission from Mr. A to inform his sister of the result, rather than that, it was what he wanted his physician to do. He might want to avoid to confront the fact that he had been suffering from AIDS in a direct manner. I do not think that his behavior is exceptional among the Japanese. Some of us would not want to confront bad news. One of recent survey on Japanese patients in a university hospital reveals that 89% of the respondents would want to know about a diagnosis of a curable cancer, while 77% would want this in the case of an incurable cancer. 8% of the respondents would want their physicians to disclose a diagnosis of a curable cancer first to their family, while 17% would want them to do so in the case of an incurable one (2). It should be noted that about one-fourth of the participants answered that they would not want to know the truth if the news is too bad.

In terms of the patient' refusal, however, Dr. B has to confirm that his refusal is not based on misleading information. It is very unlikely for him to catch up with information about effectiveness of new drugs and complicated research results. On the other hand, the patient's sister seems to try to convince the patient to come to the clinic many times by saying that it is not meaningless and even the present level of medicine would be able to do something for him. If his decision is truly informed and he regards the prolongation of his life to some extent worthless, his informed refusal has to be respected. In fact, a recent study regarding ethical dilemmas found in a general internal medicine ward suggests refusal of medical care by patients or family members may not be uncommon. In the study, ethical dilemmas frequently identified included refusal of or unnecessary requests for diagnostic procedures or treatment by patients, issues concerning truth-telling to patients with a serious illness, and disagreement regarding plans for patient care between patients' family and physicians in charge (3).

Ethically speaking, what to recommend for Dr. B would be a rather simple one: keep seeing the patient' sister and persuading him indirectly to visit the clinic again by giving correct information about effectiveness of recent medical intervention and care. He also has to provide the sister and the patient if possible with appropriate psychological support. Many ethicists would not disagree about this recommendation.

In this case, however, there are at least two problems to think about. The first question is to what extent Dr. B should act in order to persuade the patient. Should Dr. B call the patient again and again or even visit his home to persuade him? Should he write a letter to him to ask him to show up? Should he try to involve other professions like social workers or other NGO, even breaching confidentiality? The question asked here is whether the role of a physician requires him to do more than what he have so far done. In other words, what constitutes physician's responsibility and to what extent he should be involved in this case? I am not sure about it. It is, in a sense, an ethical problem in regard to physicians' duties and responsibility. The boundary of the roles of physicians may not be decided only through ethical thinking.

The second question is the limited impacts of our ethical deliberation on this particular case. Our recommendation would be severely affected by "real life" problems including psychological, financial, social, emotional ones. Even if Dr. B agreed with our recommendation and Mr. A became willing to see Dr. B again, it might not be possible for him to find enough time to do so because he needs money to live and to earn his family. The patient cannot afford to pay his medical cost unless he works hard. How can we deal with his financial problem? Even in Japan, financial problems have seriously emerged in medical care nowadays, and the income of a patient would affect what he or she can have or not. His refusal might grow out of his psychological defense or avoidance. Although he is mature, alert, and seems to have ability of self-determination, his psychological status keep him from admitting the truth and accepting medical support. As far as this psychological problem remains unchanged, our ethical judgment may not be useful. Time may solve this problem, but it may not be. At least, cross-sectional decisions made through ethical thinking would not be influential.

From the meta-ethical standpoint of view, his financial and psychological problems might affect his behavior and the physician-patient relationship more strongly than ethical problems involved in the care of HIV infected patients. If he were financially affordable and were not psychologically compromised, such ethical dilemmas might not even occur. This case is a good example of the limitation of clinical ethics in figuring out difficult problems in a complicated case. In reality, ethical judgment may not sometimes be affordable.

References
1. Asai A, at al: A national survey on Japanese physicians regarding attitudes toward HIV infection. Report on research projects supported by the study group on HIV/AIDS Epidemiology and Strategies, the Ministry of Health and Welfare. 317 - 334.
2. Asai A, et al: Choice of Japanese Patients in the Face of Disagreement. Bioethics. 1997 In Press.
3. Asai A, Yamamoto W, T Fukui, What ethical dilemmas are Japanese physicians faced with? EJAIB 7 (1997), 162-5.


Commentary

- Masashi Shirahama M.D.
2615 Mitsuse, Mitsuse Mura,
Kanzaki Gun, Saga Ken, 842-03, JAPAN

As I did in the former case discussions, I want to consider the case using the 4 box theory by A. R. Jonsen et al. and give my comments from my perspective as a primary care physician.

1) Medical Indications

Diagnosis and prognosis

In this case, the patient's blood screening test showed HIV positive twice. I think the reconfirmation test such as Western blot procedure is needed in the final decision. The diagnosis must be that he is a HIV carrier, but the stage of his HIV infection is not clear. From his symptoms and signs such as chronic diarrhea, general fatigue, low grade fever, generalized lymphoadenopathy suggests that his stage is not the asymptomatic career but the AIDS related complex or AIDS. The CD4 count or other tests are needed to know the stage of HIV infection on and they will show the precise treatment for this patient. I want to know the cause of diarrhea. If the fungus is the true cause of diarrhea, we should treat that.

2) Patient preference

The patient wants to know whether the test result HIV positive was wrong." The first HIV test done in the former private clinic was HIV antibody test without the patient's advance permission. The physician disclosed the test result to Mr. A and his elder sister, but no other explanation or no counseling in regard to HIV infection were not done." Perhaps this insufficient doctor-patient relationship makes the patient's behavior worse. He cannot accept this bad news. He wants to keep this result secret to the employer of his company. But his image of AIDS was depend on the wrong conception that "there is no chance to cure and he will eventually die no matter what he does. It is pointless to come to the hospital every two week and take expensive drugs whose effect are uncertain if he will die anyway."

3) QOL

Perhaps his physical condition deteriorated. He seems to escape from the severe fact that he is HIV positive to the busy work. But he will be fallen and face a more difficult situation if he will not consult to the doctor regularly or continue hard work.

4) Contextual features

Perhaps the patient's elder sister is the key person of this patient and she is worried about him. But she explained "He and his family cannot afford to pay the cost of long-term care. He would not have a day off to visit the clinic, fearing his employer becomes suspicious about his health condition. The employer would dismiss him if he knew that Mr. A is infected with HIV. He also thinks that he never wants to be a guinea pig used in human experiments." She may regret this after the patient enters the terminal stage when it is too late to treat. She must know now we have some treatment to delay the progress of the disease and there are some people who can continue their work and live their life with AIDS.

In Japan, health insurance covers the HIV infection treatment. If the patient needs to hospitalized and needs private room, the government pay extra money to the HIV patient. He will not be dismissed only because Mr. A is infected with HIV. It is protected by the law. The patient said "He has never engaged in any high risk behavior", but he should know he will infect the virus to the others. In Japan AIDS preventive law ordered the doctor who finds the new HIV case to report it to the prefectural office. If the former private clinic doctor didn't report this case, Dr. B needs to do that.

My recommendation to Dr. B

1) We know that among patients who are fearful of HIV infection, the rate of not coming for a second visit is very high, so the counseling should be started from the first visit. I think this case is beyond one doctor's control. So, Dr. B needs to consult this case to the specialist of HIV team, not only doctors but also nurse or counselor or community health nurse how to deal with him. In some cases, AIDS patients' group will help the patient to cope with this severe disease.

2) The first thing the doctor should do is education to the patient, such as: "How we can treat the disease today: give him the positive information of this disease" and "What should we do not to infect to others: such as sexual behavior". I want him to know being HIV positive is not equal to death. There are some people who can live their life with HIV.

3) Dr. B needs to check his disease stage properly. He can give the precise information and treatment to the patient depending on the result.

4) If the patient will not come, the doctor needs to call him sometimes to discuss with the patient to find the best way to deal with his disease. He needs to build a good relationship with the patient. If the patient needs much time to come or wait (in Japan, to consult in the university hospital needs more than half a day), the doctor should refer this patient to the another doctor or hospital.

5) The approach to the family is also important. The doctor should talk with the patient's elder sister about the regular consultation needed for him. If the patient and the family are too anxious about the medical cost, the doctor can ask the Social Worker in the hospital to help this patient.


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