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From God to Guide
Published in Jan Oldenburg, Dave Chase, Kate T. Christensen, Brad Tritle, Engage!, 2020
One of the things that illustrates Radbaud’s “Patients as Partners” values is the way that they have handled patients’ clinical data. They have just opened up all of their records, so that patients can see their full clinical records, including physician notes. Plans are that early next year, patients will also be able to download their records and choose with whom they want to share that data. “We at Radbaud University Medical Center only take care of patients in about 2 percent of their lives—the rest of the time they are on their own or with other providers.” Providing them with full access to their records—including physician notes—acknowledges the patients’ right to know what is happening with their bodies, with their care. Mr. Engelen’s team has also experienced examples of the patient safety effect, in which patients who see their record are able to correct clinical errors, as discussed in Chapter 4.
Informed Consent
Published in Julie Dickinson, Anne Meyer, Karen J. Huff, Deborah A. Wipf, Elizabeth K. Zorn, Kathy G. Ferrell, Lisa Mancuso, Marjorie Berg Pugatch, Joanne Walker, Karen Wilkinson, Legal Nurse Consulting Principles and Practices, 2019
Karen Wilkinson, Deborah A. Wipf, Elena Capella
Informed consent is the legal process that protects a patient’s right to know the risks, benefits, and alternatives of a proposed treatment or procedure and the risks and benefits of the alternatives, including no treatment (American Medical Association, n.d.-a). Understanding the elements of informed consent is an essential part of the role of healthcare providers (HCPs), including nurses, regardless of practice setting. Patients’ rights regarding their personal medical decision-making have become more important due to longer lifespans, which can lead to increasing chronic illnesses and co-morbidities. When implementing the informed consent process, HCPs and registered nurses (RNs) have an ethical duty to promote patient rights and self-determination issues (Congress.gov, n.d.). The American Medical Association (AMA) and the American Nurses Association (ANA) codes of ethics discuss specific information regarding patient rights and self-determination (AMA, n.d.-a, n.d.-b; ANA, 2015, 1.4 and 3.2 provisions). In addition, many professional organizations have established ethic white papers that address the informed consent rights of an individual. The legal nurse consultant (LNC) should reference the HCP’s specific professional codes or white paper when reviewing informed consent cases.
Confidentiality, privacy and access to medical records
Published in Marc Stauch, Kay Wheat, Text, Cases and Materials on Medical Law and Ethics, 2018
As a corollary to the duty of confidentiality owed by a doctor to a patient, one could be forgiven for assuming that a patient should have an unfettered right to see his medical records. After all, if a doctor is to be privy to intimate medical information which he has a duty to keep quiet about, but not an absolute duty, then the accuracy of that information should be verifiable at least by the patient concerned. At first sight, it might seem that here there are two discrete patient rights, that is the right to respect for privacy and the right to know what the doctor is placing in the medical records. However, in practice they are intertwined. The patient’s right to protection of confidences must surely extend to the right to know that the information concerned is accurate. Further, the utilitarian argument that the patient will be more candid if confidentiality is protected and that such candour is necessary for the patient’s health and that of society generally, also sustains the proposition that a patient should have a right to check the accuracy of that information (interestingly, it has been argued that, in order to preserve confidentiality, patients should keep their own medical records105).
Truth-telling about terminal illness prognosis in the African context: a review
Published in Journal of Communication in Healthcare, 2020
Gezahen Negusse Ayane, Khutsafalo Kadimo
Truth-telling against the patient’s preferences is believed to have a negative impact on the patient–doctor relationship; hence, such practice attracts legal litigations in countries such as the USA [8,12], Ghana and possibly other countries that use English common law legal systems [8]. In other words, one might suggest that when handling truth-telling, patient rights, interests, culture, practices, values and preferences, whether communicated or not, must be respected, as they largely influence how the patients exercise their autonomy [5–8,12,13,20,24]. Despite the general consensus on respecting patient autonomy, some literature suggests that the African, Italian and American approaches to truth-telling may still differ [24]. For instance, in the USA there is still an approach of telling patients the ‘naked truth’ [12]. Such an approach could be consistent with part of the African bioethics approaches, which maintain that patients have the absolute right to know about themselves and the doctor has to provide them with the necessary information [22]. However, the bioethics approaches do not overrule the patient autonomy of choosing not to be told the truth about a terminal illness prognosis.
Privacy and ethical challenges in next-generation sequencing
Published in Expert Review of Precision Medicine and Drug Development, 2019
Nicole Martinez-Martin, David Magnus
The return of results involves complex and difficult ethical considerations. NGS technologies produce a substantial amount of information. How should that information be conveyed to individuals, and are there types of information that should not be returned as results? First, we consider some of the primary arguments for returning people’s genetic results to them. Patients are said to have a ‘right to know’ their medical information. Many individuals say they would want to know all of their results, including ambiguous and unvalidated results[64]. Knowing about potential genetic conditions can lead patients to make positive changes for a healthier lifestyle. For research participants, the return of results may also provide recognition of their contribution to the research enterprise. At the same time, being presented with unvalidated or confusing genetic information can present risks for the patient. Different patients may have very different responses to the genetic information they receive. [65–67], Receiving genomic information for certain conditions could lead to undue anxiety or negatively impact an individual’s health behaviors or even physiology [68,69]. If patients are given information about a late-onset condition that is not actionable, the information may not be perceived as a benefit.
Serious Ethical Violations in Medicine: A Statistical and Ethical Analysis of 280 Cases in the United States From 2008–2016
Published in The American Journal of Bioethics, 2019
James M. DuBois, Emily E. Anderson, John T. Chibnall, Jessica Mozersky, Heidi A. Walsh
Related to the preceding point, efforts to educate the public about serious ethical violations in medicine and possible warning signs make up a two-edged sword. On the one hand, patients have a right to know this information. Patients should know that some physicians do engage in serious misconduct and they should know, for example, that when an intimate examination is indicated, they have a right to a chaperone, or where they can find information about unnecessary procedures. Knowledge is a key to empowerment. Nevertheless, sharing statistics on serious ethical violations in medicine runs a risk of harming patients if it further erodes trust in medicine, particularly within groups that already access medical care less frequently, and that adhere to physician recommendations less strictly, due to mistrust (Blendon et al. 2014; Ferrera et al. 2016; Khullar 2018). Problems may be particularly acute in medically underserved areas where patients may have few choices among physicians; in such cases, is it beneficial to promote concerns about physicians who fit a common profile in our studies (e.g., are trained outside the United States, are not board certified, and are male), when patients may have no choice to change physicians and when the majority of physicians who meet this profile never generate complaints with their state medical board? Withholding information on serious ethical violations would seem overly paternalistic, but promoting information about these matters could have unintended consequences for patients.