PubMed · 16351666
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Graham Jackson. 2005. Reflections.. https://doi.org/10.1111/j.1368-5031.2005.00751a.x
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Potential treatment for lysosomal diseases now includes enzyme replacement therapy, substrate reduction therapy, and chaperone therapy. The first two of these have been implemented commercially, and the spectrum of diseases that are now treatable has expanded from Gaucher disease to include several other disorders. Treatment of these diseases is extremely costly. We explore some of the reasons for the high cost and discuss how, by proper selection of patients and appropriate dosing, the economic burden on society of treating these disease may be ameliorated, at least in part. However, the cost of treating rare diseases is a growing problem that society needs to address.
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From the time of Hippocrates, approximately 2500 years ago, medical ethics has been seen as an essential complement to medical science in pursuit of the healing art of medicine. This is no less true today, not only for physicians but also for other essential professionals involved in patient care, including clinical nutrition support practitioners. One aspect of medical ethics that the clinical nutritionist must face involves decisions to provide, withhold, or withdraw artificial nutrition and hydration. Such a decision is not only technical but often has a strong moral component as well. Although it is the physician who writes any such order, the clinical nutritionist as fellow professional should be a part not only of the scientific aspects of the order but of the moral discourse leading to such an order and may certainly be involved in counseling physicians, other healthcare providers, patients, and families alike. This paper is intended to give the clinical nutritionist a familiarity with the discipline of medical ethics and its proper relationship to medical science, politics, and law. This review will then offer a more specific analysis of the ethical aspects of decisions to initiate, withhold, or withdraw artificial nutrition and hydration (ANH) and offer particular commentary on the ethically significant pronouncements of Pope John Paul II in March of 2004 related to vegetative patients and artificial or "assisted" nutrition and hydration.