What do subjects need to know in order to agree to participate in research? An informed consent document is assumed to communicate the essential information, but it is not clear how carefully research participants read these documents.
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Traditional ethical teaching suggests that a physician's assessment of a patient's best interest should guide the decision of whether to administer emergency life-sustaining therapy, absent guidance by the patient or family members. In pediatric medicine, physicians may insist on life-saving therapy if they believe it is in a child's best interest to receive it, even if the parents seek to refuse it. It is unclear exactly how physicians make such assessments, however, and whether/how these assessments influence decision-making in critical situations. Consider the following scenario:
The government requires that potential kidney transplant recipients be informed if an organ donor engaged in CDC categorized "high risk" behaviors. Are these "high risk" donor kidneys associated with worse survival rates following transplantation? Does this label "high risk" result in usable kidneys being discarded?
People in the U.S. make decisions about their health on a regular basis. For example,they are often asked to consider taking medication to treat common health problems, such as hypertension. But do patients have sufficient information to make these decisions? And what factors might influence the knowledge patients have, and their treatment decisions?
Consider this scenario:
Bob is a 52-year-old man who went to see his physician for a routine check-up. Bob’s doctor told him his cholesterol levels were slightly elevated and suggested cholesterol medication. Bob wondered how long he would have to take the medication, and whether there would be any side effects. Please answer the following two questions about cholesterol medications.
When people start taking cholesterol medications, how long is it usually recommended that they take them?
- less than 6 months
- 6-12 months
- 1-3 years
- for the rest of their lives
How do your answers compare?
Making an informed medical decision about whether to take cholesterol medications depends, at least in part, on understanding how long a medication should be taken and whether there are side effects. CBSSM investigators Angela Fagerlin, Mick Couper, and Brian Zikmund-Fisher recently published an article on patient knowledge from the DECISIONS study, a large survey of U.S. adults about common medical decisions. One main objective of the study was to determine adults’ knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. Data were collected from 2575 English-speaking adults aged 40 years and older who reported having discussed common medical decisions with a health care provider within the previous two years. Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information about common medical issues.
People taking cholesterol medications usually should take them for about 3 or more years, and perhaps even for the rest of their lives. A little more than 60% of the study respondents accurately identified the time to take cholesterol medications.
Many people have trouble with this question and do not know that muscle pain is the most commonly reported side effect of cholesterol medications. Only 17% of DECISIONS study respondents were able to answer this question correctly. About 1 in 5 respondents incorrectly identified liver problems as the most common side effect of cholesterol medications.
Overall, the investigators found that patient knowledge of key facts relevant to recently made medical decisions was often poor. In addition, knowledge varied widely across questions and decision contexts. For example, 78% of patients considering cataract surgery correctly estimated typical recovery time, compared to 29% of patients considering surgery for lower back pain or 39% of patients considering a knee or hip replacement. Similarly, in thinking about cancer screening tests, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Respondents were consistently more knowledgeable on questions about blood pressure medication than cholesterol medication or antidepressants.
The impact of demographic characteristics and sources of information also varied substantially. For example, black respondents had lower knowledge than white respondents about cancer screening decisions and medication, even after controlling for other demographic factors. Researchers found no race differences for surgical decisions, however.
The authors concluded by noting that improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.
For more information:
Cancer screening is generally recommended for people over the age of 50. Screening tests, such as colonoscopies, mammograms and PSAs (prostatespecific antigen), can help detect cancer at an early stage andprevent deaths. These screening tests, however, do have risks so,along with their doctor, people need to make a decision about howoften to get screened and when or if one should stop gettingscreened.
Consider the question:
Now, imagine that you were screened for cancer about a year ago and no cancer was found. You and your doctor are talking about when you should come back for screening in the future. Your doctor explains that cancer screening guidelines recommend that you do come back for more screening tests but as you get older, screening for cancer is no longer a good option. Your doctor states that you should follow this recommendation as you age. Now, imagine that you were screened for cancer about a year ago and no cancer was found. You and your doctor are talking about when you should come back for screening in the future. Your doctor explains that cancer screening guidelines recommend that you do come back for more screening tests but as you get older, screening for cancer is no longer a good option. Your doctor states that you should follow this recommendation as you age.
How do your answers compare?
To learn more about this study, see:
Michael Volk was an Assistant Professor of Medicine in the Division of Gastroenterology and Hepatology at the University of Michigan. His clinical practice focuses on the care of patients with liver disease, including those undergoing liver transplantation and those with hepatocellular carcinoma. His research interests focus on the ethics of resource allocation, patient and physician decision making, and chronic disease management. In particular, he has conducted a series of studies designed to improve the way decisions are made about using high risk liver transplant organs.
Megan joined CBSSM in 2014 and has worked on multiple grant funded research projects related to health communication, patient-provider decision making, and health interventions driven by behavioral economics. She currently works with Dr. Brian Zikmund-Fisher on a National Science Foundation grant testing infectious disease communication strategies.
CBSSM Faculty, Brian Zikmund-Fisher, Tanner Caverly, and Jeffrey Kullgren were co-authors on a study published in JAMA Internal Medicine Article on Why Doctors Order Unnecessary Scans for Back Pain. Erika Sears, MD, MS was the lead author.
The study was highlighted in UMHS news release here.
Dr. Rana Awdish is the author of In Shock, a memoir based on her own critical illness. She is also Director of the Pulmonary Hypertension Program at Henry Ford Hospital in Detroit and a practicing Critical Care Physician. She lectures to physicians, health care leaders and medical schools across the country on the necessity of compassionate care. She was recently named Medical Director of Care Experience for the Health System.
In Shock will describe Dr. Awdish's personal transformation from critical care physician to critically ill patient and describe how the events surrounding her near death changed her understanding of the culture of medicine and lead her to alter the course of her institution. Focusing on Physician communication training, narrative medicine and visual thinking strategies, and a culture of caring, she will illuminate the path towards creating a more resilient culture for everyone involved in health care.
1. Describe the ecosystem of medical training and practice and the way it compromises empathy and compassion.
2. Illustrate how medical humanities and a purpose driven culture can be used to promote a culture of resilience.
3. Recognize the barriers to implementing institutional change and empowering individuals.
4. Identify practices that will engage providers and leaders in promoting development of resilient systems.
Rana Awdish, MD
Director, Pulmonary Hypertension Program, Henry Ford Hospital, and Medical Director, Care Experience, Henry Ford Health System, Detroit, MI
Dr. Rana Awdish is the Director of the Pulmonary Hypertension Program at Henry Ford Hospital in Detroit and a Critical Care Physician. She also serves as Medical Director of Care Experience for the Henry Ford Health System. Dr. Awdish’s mandate as well as her passion is to improve the patient experience across the system.
After suffering a sudden critical illness herself in 2008, she has become a tireless activist, refocusing her fellow providers on the patient experience and improving empathy through connection and communication. She lectures to physicians, hospital leadership and medical schools around the country. Her book, In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope, has been featured in the Washington Post, NPR, The Today Show, The Times Literary Supplement, and is now an LA Times Bestseller.
Dr. Awdish received the Schwartz Center’s National Compassionate Caregiver of the Year Award in 2017. She was named Physician of the Year by Press Ganey in 2017 for her work on improving communication, and received the Critical Care Teaching Award in 2016. She, along with three others, began the CLEAR Conversations Project at Henry Ford, using improvisational actors to train physicians in patient-centered empathic communication.
Prior to coming to Henry Ford, Dr. Awdish completed her training at Mount Sinai Beth Israel in Manhattan. She attended Wayne State University Medical School, and completed her undergraduate degree at the University of Michigan in Ann Arbor. She is board-certified in Internal Medicine, Pulmonary and Critical Care Medicine.