Health and Medical News and Resources

General interest items edited by Janice Flahiff

Ethics: A Patient’s Right to Not Know

Ethics: A Patient’s Right to Not Know.

Excerpt

Writing in Science, the chair of the Presidential Commission for the Study of Bioethical Issues notes it is increasingly common for physicians and medical researchers to discover a disease that was not the original target of a medical test or screening.

Amy Guttman Ph.D. notes these surprise clinical test results are called incidental and secondary findings. Guttman explains the surprise discovery of an unexpected illness from screening and similar tests is called an ‘incidental’ finding. Guttman adds when clinicians deliberately seek to discover a second or third disease in addition to the primary target, these results are called ‘secondary’ findings.

Guttman, who is the president of the University of Pennsylvania, writes (and we quote): ‘Improved technologies are making incidental and secondary findings increasingly common. They are becoming a growing certainty in clinical practice as well as in the distinct contexts of research and direct-to-consumer testing’ (end of quote). For example, Guttman notes an array of unexpected clinical findings may be generated by new CT scans intended to detect lung cancer in heavy smokers. The increased screening will occur because of recent recommendations from the U.S. Preventive Services Task Force, which we discussed in last week’s podcast.

Guttman writes before CT scans or other medical tests, clinicians should alert patients about the possibility of surprise findings regardless whether screening deliberately seeks (or accidentally finds) new, unexpected illnesses.

Guttman notes while some persons will ask a physician to tell them about whatever clinical tests discover, some patients do not want to learn about incidental or secondary findings.

As a result, the Presidential Bioethics Commission recommends physicians and medical practitioners need to know a patient’s health priorities and tolerance to manage surprising results prior to clinical testing. Guttman writes (and we quote) ‘A patient who does not wish to learn about information related to the primary purpose of the test should not undergo the test. If a patient wishes to opt out of receiving incidental or secondary findings that are clinically significant and actionable, then clinicians should exercise their discretion whether to proceed with testing’ (end of quote).

Guttman notes health care providers should explain both the risks and rewards of finding unexpected illnesses that can occur from a new generation of sophisticated clinical tests, such as human genome screenings. While false positive findings are among the risks, Guttman explains the rewards include the detection of diseases and illness that could be clinically actionable.

In terms of biomedical ethics, Guttman concludes (and we quote):’ In keeping with shared decision-making, clinicians live up to their highest calling when they discuss how they will handle incidental findings with their patients’ (end of quote). While the Presidential Bioethics Commission provides more specific recommendations in their report, their overall intent is to improve patient-provider disclosure and communication as well as help patients anticipate the possibility of unexpected findings from routine testing.

The Commission’s report is available at bioethics.gov.

Meanwhile, a link to a website that explains some of the ethical issues associated with patient and provider health decision making (from Beth Israel Medical Center) is available in the ‘specific conditions’ section of MedlinePlus.gov’s medical ethics health topic page.

Similarly, a link to a website that explains some of the ethical issues associated with patient and provider treatment decisions (also from Beth Israel Medical Center) can be found in the ‘specific conditions’ section of MedlinePlus.gov’s medical ethics health topic page.

MedlinePlus.gov’s medical ethics health topic page also provides links to the latest pertinent journal research articles, which are available in the ‘journal articles’ section. You can sign up to receive updates about medical ethics as they become available on MedlinePlus.gov.

To find MedlinePlus.gov’s medical ethics health topic page type ‘medical ethics’ in the search box on MedlinePlus.gov’s home page. Then, click on ‘medical ethics (National Library of Medicine).’ MedlinePlus.gov additionally contains a health topic page on talking with your doctor, which provides tips to enhance provider and patient communication.

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March 26, 2014 Posted by | health care | , , , , , , , , , | Leave a comment

The Empowered Patient Strikes Back (Book and Web site)

From the 21 December 2012 post at The Health Care Blog

…Julia Hallisy learned about patient safety the hard way. Hallisy’s daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation…

…Hallisy decided to write a book that might help others. In 2008,  I reviewed it on HealthBeat

..

At the time I wrote: “Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient’s advocate needs to know about how to stay safe in a hospital.”

Recently, Hallisy emailed to tell me know that the book has now become a non-profit foundation: The Empowered Patient Coalition.

Go to their website and you will find fact sheets, checklists, and publications including, A Hospital Guide for Patients and Families that you can download at no chargeI found the Hospital Guide eye-opening. I have read and written a fair amount about patient safety in hospitals, but it told me many things that I did not  know…

[Great outline of doctor/nursing hierarchy]

[Questions Patients and Advocates Should Ask]

[What To Look For In Your Medical Record]

 

December 22, 2012 Posted by | health care | , , , , , | Leave a comment

Should Patients Get Direct Access to Their Laboratory Test Results? An Answer With Many Questions

From the November 28 article in the Journal of the American Medical Association 

In the outpatient setting, between 8% and 26% of abnormal test results, including those suspicious for malignancy, are not followed up in a timely manner.1​,2Despite the use of electronic health records (EHRs) to facilitate communication of test results, follow-up remains a significant safety challenge. In an effort to mitigate delays, some systems have adopted a time-delayed direct notification of test results to patients (ie, releasing them after 3 to 7 days to allow physicians to review them).3​,4

On September 14, 2011, the Department of Health and Human Services jointly with the Centers for Medicare & Medicaid Services, the Centers for Disease Control and Prevention, and the Office for Civil Rights5 proposed a rule allowing patients to access test results directly from the laboratory by request (paper or electronic). …

Read the entire commentary

December 5, 2011 Posted by | Consumer Health, health care | , , , , , | Leave a comment

   

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