A 26 years old male patient with a HIV (+) test refuses to believe his diagnosis and does not accept to undertake any complementary studies (e.g. CD4+ T cell count, levels of HIV RNA in serum plasma, etc.) and treatment. Five years later, the patient had to be admitted to the Intensive Care Unit for the treatment of respiratory failure secondary to Pneumocystis Carini pneumonia. He had CD4+ T cell count <50, a severe nutritional compromise and skin lesions compatible with Kaposi’s sarcoma. The patient refused antiretroviral therapy. Nevertheless, his mother insistently requested the attending physician to begin the therapy even against the patient’s wishes. The physician refused to do so. One week later, because of his family’s persistence, the patient changed his mind and accepted treatment. The opportunistic pathologies evolved favorably, so that the patient could be discharged from the hospital one month later. He now accepts regular control of the antiretroviral therapy and is progressively improving his general and nutritional conditions.
1. Define the specific ethical dilemma/s.
Seemingly, the referred case does not raise major ethical problems: an adult patient assumes the risks derived from his refusal to medical treatment and abandons control. Nevertheless, a more accurate reflection reveals some profound ethical dilemmas related to this situation, such as – for instance – the questions whether it is legitimate for a patient to refuse any kind of treatment even when its benefits have been proven; whether the patient was fully competent when he rejected the treatment (specially if one takes into account that his emotional reaction pointed towards a negation of his health condition); whether it is appropriate to treat complications when a patient refuses to receive the treatment for the underlying condition; whether the family has a right to ask for treatment against the patient’s wishes; etc.
2. Refer to the ethical principles involved
Focusing our attention on the patient’s refusal to receive a useful treatment, the ethical principles involved are primarily beneficence and respect for patient’s autonomy.
3. Collect and analyze ethically relevant clinical information
The fact that antiretroviral therapy is highly effective in the treatment of HIV infection is doubtless ethically relevant in this case. If our patient would have had a different type of disease (e.g. metastatic cancer) the analysis of the case would have followed a quite different path. We would have probably concentrated on the analysis of the proportionality of the proposed therapy. But since there is no doubt that antiretroviral therapy is actually very effective in the treatment of HIV infection, the ethical questions refer to the reasons why this patient refused the treatment. Thus, the question about his competence rises.
It is evident that the duty to respect a patient’s autonomous decision presupposes that this decision has been made by a free and competent person. This means that health care professionals have to check the patient’s competence. This becomes even more important when a patient refuses an intervention that is known to have beneficial effects. To determine a patient’s competence is not always an easy task. Summarizing a delicate evaluation-process, we may say that the abilities that need to be tested for in order to establish a patient’s competence are at least:
- The intellectual capacity to understand the provided information.
- The rational ability to process the information and to infer consequences from it.
- The absence of affective blockages (e.g. depression, emotional shock, etc.).
- The possibility to communicate the decision in a clear manner.
In our present case, the patient’s denial of his clinical condition at the moment of his diagnosis suggests that he was emotionally compromised in a way that might have prevented him from making truly free decisions. Unspoken reasons might underlie this emotional reaction, such as for instance, the patient’s sexual behavior, drug abuse, social or family pressures, etc. Whether health care professionals should follow a patient's decision under these circumstances deserves further discussion.
4. Review alternative courses of action
Taking into account both the duty to benefit the patient and the duty to respect his autonomy, health care professionals may suggest two opposing courses of action: accept the patient’s denial or disregard the patient’s wishes arguing that his emotional state renders him unable to make free decisions. This last solution would be difficult to implement because the cooperation of the patient is absolutely needed for the kind of treatment required. Thus, a “third way” could be suggested, namely to offer the patient psychological assistance in order to find out which are the unspoken reasons is underlying his denial.
5. Suggest an ethical solution
The above described “third way” seems to respect both the ethical principle of beneficence and autonomy. By simply accepting the patient’s denial (as the attending team did in this case), health care professionals would neglect their duty to act in the best interest of the patient. On the other hand, it is certainly not correct to treat an adult, competent patient against his explicit will.
6. Consider the best way of implementing the suggested solution
To declare a patient as “incompetent” (i.e. unable to exercise his autonomy) on the grounds of a neurological condition (e.g. viral encephalitis) is usually not very difficult for health care professionals. But in the case of emotional factors compromising a patient’s autonomous decisions, they might consider it more difficult. It is indeed not always easy to help the patient realize what his state actually is. An experienced and attentive professional assistance is needed here, and this course of action would probably take time.
Dr Paulina Taboada
Profesor Centro de Bioetica
Pontificia Universidad Catolica de Chile
Alameda 340 Correo Central 1
Santiago, Chile