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V Management of thalassaemia patients who do not require regular blood transfusion V Prenatal and intrauterine management V Management of thalassaemia patients during pregnancy V Population screening TARGET POPULATION Adult and paediatric transfusion dependent thalassaemia patients ii Management of Transfusion Dependent Thalassaemia INCLUSION AND EXCLUSION CRITERIA a) Inclusion Criteria Definition - Transfusion dependent thalassaemia patients are those who require life-long regular blood transfusions b) Exclusion Criteria Thalassaemia patients who do not require regular blood transfusion Paediatric and adult transfusion dependent thalassaemia patients CLINICAL QUESTIONS Refer to Appendix 2 TARGET GROUP/USER All health care professionals/individuals who are involved in the management of transfusion dependent thalassaemia patients including:V Paediatrician V Physician V Haematologist V Pathologist V Radiologist V Family Medicine Specialist V Public Health Physician V Medical Officer V General Practitioner V Pharmacist V Dietitian/Nutritionist V Nurse/Assistant Medical Officer V Laboratory Personnel V Medical Social Worker Patients and their families/caregiver iii
You probably know that since I entered remission almost 24 months ago, I have had several blood transfusions – seven, actually – to aid in treating something called Aplastic Anemia or AA, Aplastic Basically my bone marrow doesn’t make enough red and white blood cells, and platelets.
All those who used dirty needles in the 1970’s or 80’s, or who got tattoos back then, or who had blood transfusions which were tainted with the virus, are just now coming down with this dreadful disease.
FINAL DRAFT Waterworks Essay Final Draft Ryan Moore Medical Morality in the Gilded Age The Gilded Age was a time of radical change in America, right on the cusp of the Industrial Revolution. Americans living in urban regions had no choice but to adapt to the changes that came with obstacles such as rapid urban expansion, violent gang activity in major cities, and substandard hygiene. E.L. Doctorow’s novel, The Waterworks , is a book that depicts an accurate historical view of New York in this time period. In this book, the character of Dr. Sartorius serves two purposes: Sartorius shines a light on some of the beneficial advancements in Gilded Age medicine, in order to gain the reader’s trust; then, he provokes the issue of medical morality in his twisted experiments using deceased streetorphan children to prolong the lives of rich old men. The role of Dr. Sartorius in The Waterworks brings up a very relevant question: at what point does the pursuit of medicinal knowledge become immoral? Well, based on simple laws of ethics, one can easily deduce that the pursuit of medical knowledge becomes immoral if the patients, or people close to the patients, experience physical or emotional trauma as a direct result of your practice. What truly matters in deciding medical morality is the intention of the doctor: did the doctor intend to cause harm, or was the doctor doing the best they could with the knowledge available in that time period? Some doctors in the Gilded Age adhered to some sort of ethical code, while some did not. Both ends of this moral spectrum deserve to be examined, and the morality of the actions of Dr. Sartorius deserve the same scrutiny. For every medical advancement made during the Gilded Age, an outdated (and often terrifying) medical procedure would be eliminated from the average doctor’s arsenal of “normal medical procedures”. Many people know of the classic “horror movie” medical procedures, such as electroshock therapy, or the use of leeches for bloodletting. These practices might not have been common but they were most certainly used at one time. Those living in the Gilded Age saw the brief rise and fall of medical practices far more concerning than the aforementioned, such as the lobotomy, which was thought to “cure” homosexuality (4). In 1898, Heroin (diacetylmorphine) was manufactured and distributed by pharmaceutical companies to treat common symptoms like coughs, colds, and pain (4). “Radium therapy”, or the consumption of radioactive radiuminfused water, was thought to cure a number of illnesses such as arthritis and rheumatism, but actually led to far more serious health complications (4). Another periodic table element, mercury, was used as a treatment for syphilis until the early 20th century, until it was discovered that mercury led to very painful symptoms, including stomach ulcers and sometimes death (4). Doctors that performed these bizarre procedures did not always have ill intent; a great deal of these doctors simply did not know any better because they were going about their business based on the knowledge that was available to them in that time period. Dr. Sartorius is an example of a doctor operating without any regard for morals or ethical medicine; he had the potential to launch Gilded Age medicine years into the future, but instead he conducted his experiments in secret, knowing that he would be in trouble if he got caught. The actions of Dr. Sartorius are best described in this chilling quote from Doctorow’s novel: “I saw him transfuse blood from one living being to another. I saw him with a hypodermic tube inject cellular matter into deadened brains. I saw first one, then another, of the orphan children begin to age, like leaves turning yellow.” ( Waterworks pg. 198). In contrast to the horrors of precontemporary medicine, the Gilded Age was also a time of great growth in safe, benevolent medical practices. The most groundbreaking and wellknown change in medicine during this time was the creation of the condom for males around the turn of 1840 (6). During a time period when the concepts of abortion and “free love” were in direct insubordination of the “word of God”, this invention was a topic of great debate, and caused quite a stir. The invention of the condom was thought to promote sinful activity in the eyes of the predominantlyCatholic community of the Gilded Age, and were often condemned by local church preachers. However, the condom played a key role in drastically reducing the number of cases of venereal disease in sexually active people. The condom serves as a prime example of a harmless, victimless medical invention, quite contrary to the medical proceedings of Dr. Sartorius. Medical schools were also in desperate need of reformation due to substandard hygiene conditions and illinformed doctors. In 1910, Abraham Flexner did a study on American medical colleges which led to the closing of various shoddy medical schools; this sparked great changes in the medical curriculum as well as the teaching methods they used (1). The use of ether as a surgical anesthetic was introduced in 1846 which allowed surgeons to conduct their work without any screaming, thrashing, or unbearable pain being inflicted on their patients (2). This was particularly necessary during a time period when a crushed limb or a bullet wound could easily lead to a fatal systemic infection. Amputations before the introduction of ether were obviously very gruesome. As for Dr. Sartorius, his procedures were not all as deranged as his experiments with the orphan children; he actually created a brilliant machine used for measuring brain activity, an invention far ahead of his time. “Afterward he showed me what he said was a graphic representation of the electric impulsings of my brain...a fairly regular figuration similar to the path of the sine and cosine in mathematics. This remarkable picturing device was of his own invention.” ( Waterworks pg. 196) After examining the foundation of medical reforms of the Gilded Age, one can easily make an educated guess as to where Dr. Sartorius falls on the moral spectrum. At what point does the pursuit of medicinal knowledge become immoral? The facts of the matter are clear: Dr. Sartorius harvested the life force of orphan children in order to prolong the lives of rich men, in exchange for financial gain. Martin Pemberton described the nightmarish blood transfusions in an earlier quote, but Sartorius himself goes on to describe the zombielike state that became of the rich benefactors as well: “...They did not agree to give themselves to my care in a uniform condition, you understand. The illnesses varied, the ages, the prognoses. Though all the illnesses were fatal. Yet I had them conformed to a degree of existence I could lower or raise by my application, as you quicken or dampen a gas flame with a turn of the wrist. I reached only this early stage, that I could keep them biomotive, that is, where they did not stop breathing, to the extent that I did not overendow them with selfsustaining energies. This, of course, was not what they had dreamed of for themselves...” ( Waterworks pg. 215) Sartorius was obviously indifferent about the fates of those he experimented with. Martin comments on the absence of empathy in Sartorius, saying that, “...everything was Sartorius’s triumph. Though he scrupulously fulfilled his part of the contract, he was entirely without care or concern for his patients except as they were the objects of his thought. What he warranted was only his scientific attention. But this was all!” ( Waterworks pg. 200) Furthermore, when Martin was questioned by Dr. Hamilton on his observations of Dr. Sartorius conducting his experiments, Martin described how the orphan children were used, dead or alive. “Children died in their place.” “Never by his hand.” “What?” “Not from any of his procedures. Either he took them after an accidental death...or, if he worked with living...donors, as he did subsequently...those who died, died of fear. Of an undetectable...infirmity in their spirits of the...survival instinct.” ( Waterworks pg. 233) The pursuit of medical knowledge becomes immoral if your practice causes physical or emotional trauma to your patients or people close to your patients, and Dr. Sartorius certainly did a good enough job of causing trauma to his victims as well as the people in his community. This time period was monumental in the progress of American civilization. Doctors have always been held to the highest esteem for their indispensible skills, and rightly so; on the other hand, there have always been doctors that were either mentally unstable or just unaware of the “proper” way of doing things. Dr. Sartorius fell into the category of the former, despite the benevolent advances he made in blood transfusion and recording brain activity. Doctorow suggests that Sartorius is a medical genius who invented various surgical techniques, but is only concerned with the pursuit of medical knowledge, nothing else. Sartorius pays no mind to any pain or suffering that he inflicts on his patients. The facts are plain and simple: this character was conducting grisly experiments using orphan children and tried to keep it a secret. If Dr. Sartorius wanted to, he could have conducted his research the right way, and he could have applied his genius to a much more nobler goal. Instead, he fell under the persuasion of money and potential glory, and lost his sense of humanity in the process. The pursuit of medical knowledge should
SH Epidemiology of HIV/AIDs ..................................................................................................................