Ethical, legal and policy issues in management of fetal alcohol spectrum disorder.

Alcohol use during pregnancy may have severe and lasting effects on the developing fetus. Unfortunately it is often difficult to detect and address maternal drinking, as previous articles in this series have demonstrated. The difficulty is only compounded by a number of ethical quandaries and legal concerns. Underlying most of these concerns is a particularly agonizing conflict of obligations: to protect vulnerable, nascent human life on the one hand, and to preserve the privacy, dignity, and trust of one's patient on the other.

Age and the allocation of organs for transplantation: a case study.

What role should age play in the allocation of organs for transplantation? Historically, older patients have not been listed as candidates for transplantation on the assumption that greater benefit could be obtained by favoring younger candidates, raising questions of equity and age discrimination. At the same time, organs offered for donation by the very old are frequently rejected because of concerns about length of viability. We examine a local case that challenges these practices: the liver from an elderly donor was successfully transplanted into an older patient. After exploring some of the potential problems with such a solution, we propose creating a second pool of organs from the very old for transplantation into older candidates, thus expanding the number of organs available, saving additional lives, and including the elderly more visibly in our transplant system.

Communication through advance directives.

There are two kinds of justifications for advance directives. The first is that they extend patient autonomy into the future, allowing individuals to control or at least influence their care after they have lost the capacity to make decisions. The second is that they help physicians and family members make emotionally stressful decisions in difficult circumstances. Whether directives are written or unwritten is of secondary importance. The primary concern is that they are based on an adequate understanding of medical options. Two cases illustrate the relative importance of these features of advance directives.

Nonadherence with pediatric human immunodeficiency virus therapy as medical neglect.

OBJECTIVE: To examine the results of an interventionist approach applied to human immunodeficiency virus (HIV)-infected children for whom caregiver nonadherence was suspected as the cause of treatment failure. METHODS: The medical records of a cohort of 16 perinatally HIV-infected children whose care was managed at the Arkansas Children's Hospital Pediatric HIV Clinic for an uninterrupted period of >or=3 years were reviewed through July 2003. Data collected included date of birth, dates of and explanations for clinic visits and hospitalizations, dates of laboratory evaluations, CD4(+) T cell percentages, plasma HIV-1 RNA levels, antiretroviral medications, viral resistance tests (eg, phenotype and genotype), and physician-initiated interventions to enhance adherence to the medication regimen. A stepwise interventionist approach was undertaken when patients continued to demonstrate high viral loads, despite documented viral sensitivity to the medication regimen and caregivers' insistence that medications were being administered regularly. Step 1 was prescribing a home health nurse referral, step 2 was administering directly observed therapy (DOT) while the patient was hospitalized for 4 days, and step 3 was submitting a physician-initiated medical neglect report to the Arkansas Department of Human Services. RESULTS: The results for 6 patients for whom this stepwise approach was initiated are reported. Home health nurse referrals failed to result in sustained improvements in adherence in all 6 cases. Viral load assays performed before and after DOT provided an objective measure of the effect of adherence, with 12 hospitalizations resulting in a mean +/- SD decrease in HIV RNA levels of 1.09 +/- 0.5 log(10) copies per mL, with a range of 0.6 to 2.1 log(10) copies per mL. Four families responded to DOT hospitalization, and sustained decreases in the respective patients' viral loads were noted. In 2 cases, medical neglect reports were submitted when DOT did not result in improved adherence. These patients were eventually placed in foster care, with subsequent improvements in their viral loads and CD4(+) T cell percentages. CONCLUSIONS: Nonadherence with antiretroviral therapy can be established on the basis of persistently elevated HIV RNA levels that decrease with DOT. Nonadherence poses a danger to the child that is grave and potentially irreversible. Caregivers should be offered all available resources to help them adhere to a sound treatment plan. In cases of demonstrated inability to provide needed care, it is necessary to consider seeking child protection, even for apparently healthy children.