Bone marrow transplantation for sickle cell disease: a study of parents' decisions

Article Abstract:

Patients with sickle cell disease can not make normal hemoglobin molecules. Consequently, their red blood cells are susceptible to changes in shape, called sickling, and can block blood vessels, causing a variety of problems including severe pain, tissue injury, stroke, and death. Rarely do such patients survive past middle age. The only effective treatment is bone marrow transplantation, which can cure the condition by providing the patient with donor marrow cells capable of making normal red blood cells. However, donor bone marrow can also attack the tissues of the recipient, a condition called graft-versus-host disease (GVHD). GVHD may be fatal in 10 to 50 percent of bone marrow transplant recipients. For conditions such as leukemia, the risks of bone marrow transplantation may be necessary to save the patient's life. Should such risks be taken for sickle cell disease, in which the patient is not immediately threatened and may live many productive years? A study was undertaken to determine how parents of children with sickle cell disease perceived the risks and benefits. Sixty-seven parents or guardians of 67 children (average age 10 years) were interviewed. They were presented with scenarios in which the risk of death from GVHD was said to range from 0 to 95 percent. The parents indicated the highest risk of death that they would view as acceptable in an attempt to cure their children of sickle cell disease. Sixteen parents said they would not consent to bone marrow transplantation under any circumstances. Fifty-four percent said they would accept a five-percent risk of death from GVHD to cure their children. As would be expected, the fraction of parents who would accept the risk of death decreased as the risk increased. Thirty-seven percent, or 25 of the 67 parents, indicated that a risk as high as 15 percent (about 1 in 7) would be acceptable; this is a rough estimate of the current risk. Eight parents were willing to accept a risk of death greater than 50 percent. It should be emphasized that the parents and guardians in this study were responding to hypothetical questions. How they might respond to actual offers of bone marrow transplantation could differ. In the present study, the willingness of the parents to accept some risk seemed to be unrelated to the severity of their child's symptoms. (Consumer Summary produced by Reliance Medical Information, Inc.)

Risk assessment, Causes of, Sickle cell anemia, Surveys, Bone marrow, Bone marrow transplantation, Graft versus host reaction, Graft vs. host disease, Risk perception

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Ethical issues in growth hormone therapy

Article Abstract:

Recent developments in genetic techniques have allowed scientists to synthesize the human pituitary growth hormone (GH), which is largely responsible for the growth of human long bones. Although the synthetic hormone is currently only approved for the treatment of children who have a proven defect in the amount of endogenous (internally produced) pituitary hormone, it could be used to stimulate the growth of short children who are not GH-deficient. The use of GH to treat non-GH-deficient children presents the physician with a clinical problem that is intermixed with an ethical or moral predicament. The potential side effects and risks of treating this class of patients are unknown. It is also unclear at which point a short individual is pathologically short to a degree that intervention should be considered, particularly when the long-term effects of treatment remain unknown. Some have argued that, regardless of its cause, short stature is a biological abnormality and should be treated. The argument continues that short stature leads to psychosocial difficulties or morbidity and that GH treatment may be an important means of alleviating these problems. The authors consider the moral alternatives of treating children of short stature according to three models: GH as an extension of preventive well-child care; GH therapy as a treatment for psychosocial problems; GH treatment as a form of cosmetic therapy. The issue must be decided by the individual physician on the basis of three issues: the risks and benefits are unknown; current diagnostic methods make it difficult to determine which patients have a disease; and the treatment itself is burdensome to the child (multiple injections). The author considers it ethically acceptable to treat GH-deficient children with synthetic GH. The treatment of non-GH-deficient children remains unclear and no absolute ethical guidelines covering all cases are recommended. This problem may be followed by other similar situations as laboratories produce other biologically active products.

Interpretation and construction, Ethical aspects, Hormone therapy, Growth disorders, Medical ethics, Dwarfism, Pituitary, Pituitary dwarfism

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The rise and fall of the futility movement

Article Abstract:

Doctors should continue to discuss medical futility with their patients and patients' families. Medical futility is the term given to treatments that will not benefit the patient. The debate over medical futility has waned partly because several courts have ruled on behalf of the patient in medical futility lawsuits. Perhaps courts have not upheld a doctor's right to make this decision because doctors themselves cannot agree on when medical care would be futile in specific conditions. Many also thought it should be the patient's decision whereas others thought the doctor should have the right to limit care.

Analysis, Refusal to treat (Medicine)

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