Summary:Allogeneic stem cell transplantation is increasingly considered as a curative though risky treatment option for adults with sickle cell disease. Little is known about attitudes of adult patients and their health care providers regarding the risks and benefits of transplantation. A survey of 100 patients and their health care providers was undertaken. Assessment of risk was by a reference gamble paradigm. Comparison was made of the characteristics of those accepting substantial risk vs those not accepting risk, as well as assessment of agreement on risks recommended by health care providers and accepted by patients. Sixty-three of 100 patients were willing to accept some short-term risk of mortality in exchange for the certainty of cure. Fifteen patients were willing to accept more than 35% mortality risk. No differences in patient or disease-related variables were identified between those accepting risk and those not accepting risk. There was no agreement between the recommendations of health care providers and the risk accepted by patients. A substantial proportion of adults with sickle cell disease are interested in curative treatment, at the expense of considerable risk. The decision to accept risk is influenced by individual patient values that cannot be easily quantified and that do not correlate with the assessment of the health care provider. Given the substantial interest in curative therapy, education about and consultation for allogeneic stem cell transplantation in sickle cell patients should be encouraged. Bone Marrow Transplantation (2001) 28, 545-549. Keywords: sickle cell disease; stem cell transplantation; risk; survey Sickle cell disease is a common congenital disorder with major implications for the health and longevity of affected 1 Several mature studies of allogeneic transplantation in children with sickle cell disease indicate a cure rate of 80%, a transplant-related mortality of less than 10% and a risk for serious complications (ie graft failure, grade III-IV acute GVHD and extensive chronic GVHD) of less than 10%.2,3 In one study, survival and cure rates were even better in children with early stage sickle cell disease.2 In adults, sickle cell disease causes considerably more morbidity and mortality than in children, and no satisfactory medical treatment exists.
In an epidemic situation or large-scale disaster, medical and human resources may be stretched to the point of exhaustion. Appropriate planning must incorporate plans of action that minimize public health morbidity and mortality while maximizing the appropriate use of medical and human healthcare resources. While the current novel H1N1 influenza has spread throughout the world, the severity of this strain of influenza appears to be relatively less virulent and lethal compared to the 1918 influenza pandemic.However, the presence of this new influenza strain has reignited interest in pandemic planning.Amongst other necessary resources needed to combat pandemic influenza, a major medical resource concern is the limited number of mechanical ventilators that would be available to be used to treat ill patients. Recent reported cases of avian influenza suggest that mechanical ventilation will be required for the successful recovery of many individuals ill with this strain of virus. However, should the need for ventilators exceed the number of available machines, how will care providers make the difficult ethical decisions as to who should be placed or who should remain on these machines as more influenza patients arrive in need of care?This paper presents a decision-making model for clinicians that is based upon the bioethical principles of beneficence and justice. The model begins with the basic assumptions of triage and progresses into a useful algorithm based upon utilitarian principles. The model is intended to be used as a guide for clinicians in making decisions about the allocation of scarce resources in a just manner and to serve as an impetus for institutions to create or adapt plans to address resource allocation issues should the need arise.
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