Page 39 - 59peadiatric-surgery-speciality8-14_opt

78 Ethics of Paediatric Surgery in Africa

apparent rational decision. Competence can be limited according to to the level of the patient’s and parents’ understanding, to discuss:
the circumstances of the patient, both intrinsic (mental) and extrinsic • all invasive procedures and those realistically expected;
(specific law or rule, such as incarceration or institutionalisation).
2. Provision of adequate information: Information forms the • all common and serious complications; and
foundation upon which the competent patient can make a decision. • all options and alternatives.
Such information must include a full explanation of the proposed The basic idea of the process of informed consent–taking is that
techniques as well as information about the chances of success, the surgeon should have made as sincere an attempt as possible to
incidence of complications, risks involved, available alternatives and come as close to the ideal, given the limitations of time, language,
their relative risks and complications, costs involved, and the role of and cultural difficulties.
each member of the surgical team. Risks include those inherent to the
procedure and disease, compounded by host risks relating to underlying HIV, Ethics, and the Paediatric Surgeon
disease and comorbidity, as well as those inherent to the particular Why is human immunodeficiency virus/acquired immune deficiency
environment where surgery is to be performed (e.g., inexperienced syndrome (HIV/AIDS) such a major issue for society and for medicine?
11
surgeon, new procedure, and so on). One of the reasons is the sheer magnitude of the pandemic, especially
3. Decision making: Based on the information supplied and the in sub-Saharan Africa. The vast majority of affected people are poor
patient’s competence, the patient or proxy can make a voluntary decision and thus easily subjected to discrimination. Another is the fact that it is
without coercion to undergo (or defer) a treatment. The patient or proxy a sexually transmitted disease, and as such is viewed as morally repre-
should be informed of the consequences of that decision and his or her hensible. People affected by HIV/AIDS are often seen as blameworthy,
right to withdraw such consent at any stage and to seek a second opinion. and AIDS is viewed as punishment for moral transgression. Grayling
Within clinical practice, the process of informed consent presents writes that AIDS is seen as “evidence of God’s wrath, justly provoked
several inherent problems: by our sins”. 13
1. The timing of obtaining consent: Under ideal circumstances, HIV is different from other epidemics because it affects mainly
the taking of informed consent should occur a few days prior to young adults and has a long incubation period with a very high
surgery to facilitate unhurried, uncoerced decision making; to obtain mortality. Additionally, the HIV outbreak has occurred at a time when
more information; to discuss the matter with family members; and to medicine is very technology driven, and advances in medical and
review the decisions made. In the case of an emergency, this might be surgical treatment may expose health care workers (HCWs) to great
impossible, but this does not absolve the surgeon of the responsibility risk from blood and other body fluids. 14
to obtain informed consent to whatever extent possible. We address The surgeon is a unique medical professional in that “any
the subject of informed consent during emergency surgery later in operation performed harms before healing.…Consequently, by striving
this chapter. to minimise this necessary temporary injury to the patient while
2. The complexity of the disease and its modern surgical treatment: maximising the therapy’s curative potential, surgeons have forever
15
12
Paediatric surgery has become a mature discipline in its own right, engaged in ethical deliberations”. The Cambridge Textbook of
and the technological options have been growing. Not all options Bioethics describes the surgeon as being the patient’s advocate “in the
15
are currently available in some African countries due to resource purest sense” because the surgeon protects the patient’s values as well
constraints. Some patients might therefore decide to have their elective as his or her physical health.
surgery performed in another country. In the context of HIV, it is important to consider whether surgery
3. The extent of information necessary: Any information that the poses an additional risk to the HIV-infected person, and to weigh the
16
patient might need, or reasonably use, to make a decision is appropriate. relative risks and benefits. There is also the issue of personal risk to
As a general guideline, the more serious a condition and the higher the surgeon, and whether the HCW can refuse to treat an HIV-infected
the probability of risk and complications, the greater is the need to patient. This hotly debated subject in the ethics literature in the late
inform the patient. However, forcing unwanted information onto a 1980s and early 1990s has become a nonissue with the advent of
patient could cause unnecessary anguish and could be interpreted as antiretroviral treatment (ART) and postexposure prophylaxis. 14
psychological battery. By virtue of its high prevalence in Africa, the surgeon inevitably
4. Risk disclosure: A reasonable question is whether it serves the will encounter many moral dilemmas associated with HIV/AIDS.
patient’s interest to disclose all complications and how much patients In this chapter, we address the following ethical dilemmas in the
actually understand the statistics. The ideal would be to provide context of HIV/AIDS and medical care: HIV testing and informed
institutional outcome figures. As an alternative to quoting actual figures consent; confidentiality, privacy, and the duty to warn; and justice,
of complication risks, a verbal scale from very high, to moderate, to discrimination, and access to ART. We also touch on the debate around
very low, to negligible could be used. the ethics of neonatal circumcision as prevention for HIV.
5. The use of aids and pamphlets: The South African Health HIV Testing and Informed Consent
Professions Council (HPCSA) guidelines advocate the use of “up-to- Usually, in-depth discussion and consent for blood tests is not required.
date written material, visual and other aids to explain complex aspects However, HIV historically was considered to be different because
of . . . treatment where appropriate and/or practicable”. treatment was not available early in the AIDS epidemic, and HIV was
6. Who should take the consent? Without a doubt, the surgeon doing associated with psychosocial risks and discrimination with regard to
the procedure is the best person to obtain consent. The surgeon should employment and access to health insurance. International and national
17
inform the patient about the risks and complications that could arise guidelines state that HIV testing should be done only with the informed
from the procedure. consent of the patient (if old enough to consent) or the parent, and after
7. Costs: It is the duty of the surgeon to inform the patient or pretest counselling. This approach to HIV testing, together with respect
parents/caregivers about the costs to be incurred and how they are for confidentiality, constitutes a strict advocacy view of the rights of the
expected to pay. individual. The issues of consent in children, particularly in the African
8. Research: These points do not apply fully to research on patients. setting, have already been addressed in the first part of this chapter, and
In summary, the patient’s cooperation is important before performing they also apply here. The age at which a child can consent to HIV test-
any procedure. The aim is not to impress or dominate, but to inform. The ing depends on the child’s maturity and understanding. New legislation
surgeon should use understandable and down-to-earth language, tapered in South Africa places this age at 12 years. There is an increasingly