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I'm Rob Logan, Ph.D., senior staff, U.S. National Library of Medicine (NLM).
Here is what's new this week in To Your Health, a consumer health oriented podcast from NLM, that helps you use MedlinePlus to follow up on weekly topics.
Some of the broader medical ethics issues raised by 11-month old British boy Charlie Gard's treatment are whether medical interventions should persist when there is missing evidence of beneficial care, suggests a timely viewpoint recently published in the Journal of the American Medical Association.
Dr. Robert Truog, a Harvard University School of Medicine bioethicist, writes (and we quote): 'the sad and tragic case of Charlie Gard is a window into several of the deep and fundamental debates that are roiling the governance of health care delivery both domestically and abroad' (end of quote).
Dr. Truog explains one of the core ethical and health policy questions raised in the Charlie Gard case was whether his parents had the right to demand experimental treatments — and providers should be compelled to continue to keep a child alive (against their will) — because the family volunteered private (not public) funds to pay for his care.
Incidentally, Dr. Truog's viewpoint was written just before Charlie Gard's parents dropped their lawsuit to keep him on a ventilator. While Charlie Gard was living at the time this podcast was produced, his parents' decision means officials at the Great Ormond Street Hospital in London will turn off his life support equipment. Also, the boy will not receive experimental treatments for a rare, inherited disease, which his parents previously requested.
Nevertheless, Dr. Truog's viewpoint explains the ethical questions raised by the Charlie Gard case are timeless and important for all health care systems to consider regardless of nationality. For example, Dr. Truog summarizes the case's initial ethical and policy issues as (and we quote): 'How can the rights of individuals to use their money for whatever purposes they desire be balanced against the obligations of societies and their governments to regulate health care systems in ways that ensure the delivery of beneficial and cost-effective treatments for the good of all' (end of quote).
Dr. Truog suggests that it is not ethically within society's or medicine's best interests for citizens to demand clinical treatments without evidence of clinical efficacy even if they are willing to pay out of pocket for extraordinary care.
Dr. Truog retorts (and we quote): "�the historical development of the profession of medicine has been characterized by an increasingly strong commitment to grounding practice on evidence generated through research' (end of quote). He adds (and we quote): 'Today, for example, it would be extremely rare for a hospital in the United States to admit patients for the exclusive purpose of receiving homeopathic therapy or unproven stem cell infusions, regardless of how much the patient paid' (end of quote).
Dr. Truog concludes (and we quote): 'considerations of the best interest of patients and of fairness are part of the answer, but they need to be bolstered by a reaffirmation of the scientific values at the core of the profession as well as a commitment to upholding the integrity of medical practice by refusing to provide treatments that fail to meet a reasonable threshold of scientific justification' (end of quote).
Meanwhile, the 'children' section of MedlinePlus.gov's critical care health topic page provides information about an array of intensive care situations for kids. For example, within the 'children' section, a foundational link to a website from the American Academy of Pediatrics provides information for parents when a child is placed in an intensive care unit.
MedlinePlus.gov's critical care health topic page also provides links to the latest pertinent journal research articles, which are available in the 'journal articles' section. Clinical trials that may be occurring in your area can be found in the 'clinical trials' section. You can sign up to receive updates about critical care as they become available on MedlinePlus.gov.
To find MedlinePlus.gov's critical care health topic page, please type 'intensive care' in the search box on MedlinePlus.gov's home page, then, click on 'critical care (National Library of Medicine).'
NLM's website 'Genetics Home Reference' additionally provides helpful information on an array of children's genetic diseases and conditions, including Charlie Gard's inherited illness. You can find this website by typing 'Genetics Home Reference' in any web search engine, or web browser.
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