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.
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With just a simple search term and a click of the mouse, a person can find a large amount of health information on the Internet. What role does the Internet play in how patients make medical decisions? Does using the Internet as a source for information to help patients make informed decisions vary by health condition? Does the Internet substitute for detailed discussions with a health care provider?
Consider the following:
Imagine that you recently visited your health care provider for an annual physical examination. During the exam your doctor told you that you are at the age where you should start thinking about getting a screening test for colon cancer. In this conversation your health care provider explained some of the reasons why you should get screened. At the end of the visit, you had more information about screening tests for colon cancer but had not yet decided whether or not you wanted to get tested.
- Don't know
How do your answers compare?
In a recent study published in the journal Medical Decision Making, CBSSM investigators Brian Zikmund-Fisher, Mick Couper, and Angela Fagerlin examined Internet use and perceived importance of different sources of information by patients making specific medical decisions.
In this study, US adults aged 40 years and older were asked about how they got information about 9 common medical decisions, including decisions about common prescription medication (for high blood pressure, cholesterol, and depression), cancer-screening tests (for colorectal, breast, and prostate cancer), and elective surgeries (for lower back pain, cataracts, and knee/hip replacement). In addition, they study compared participants' ratings of the Internet as a source of information with their ratings of other sources, such as their health care provider.
So, how did your responses compare to the average adult in this study's population?
Results from this study showed that most patients did not use the Internet to make specific medical decisions like the ones you considered. On average, about 26% of participants made use of the Internet for information to make decisions about colon cancer screening tests and about 47% used it to inform a decision about lower back pain surgery.
Among participants who chose to use the Internet for finding information about specific medical decisions, data show that Internet use varies significantly across different types of medical decisions. Internet users were more likely to use the Internet for information related to elective surgery (36%), such as lower back pain surgery, and prescription medication (32%) than for cancer-screening decisions (22%), such as colon cancer screening.
Another element of this study looked at participants' ratings of different information sources. You are unlike other participants in this study in that you did not consistently rate health care providers as the most important source for information about colon cancer screening and lower back pain surgery. The CBSSM study found that, for both Internet users and nonusers, health care providers were rated highest as a source for information for all 9 decisions studied. Among Internet users, however, the Internet was rated as their 2nd-most important source of information.
The researchers found that Internet use to inform specific medical decisions varied by age ranging from 38% for those aged 40 to 49 years to 14% for those aged 70 years or older. Approximately 33% of 50 to 59 year olds used the Internet to make these medical decisions and 24% for those in the 60 to 69 year age category. This result is consistent with previous research on the demographics of Internet use.
The study authors concluded that the Internet has an impact on people's access to health care information; however, "the data suggest that access is not the same as use, and use for one medical decision does not imply use for all health decisions." In other words, people use the Internet differently depending on the context. The authors end by stating, "Clinicians, health educators, and health policy makers need to be aware that we remain a long way away from having Internet-based information sources universally used by patients to improve and support the process of medical decision making."
For the full text of this article:
Couper M, Singer E, Levin CA, Fowler F, Fagerlin A, Zikmund-Fisher BJ. Use of the internet and ratings of information sources for medical decisions: Results from the DECISIONS survey. Medical Decision Making 2010;30:106S-114S.
Dr. Lewis B. Morgenstern was one of the 21 Med School faculty/staff members who received honors through the Dean's Awards program. He received the Clinical and Health Services Research Award, which recognizes a faculty member or group of faculty members who are identified as having made outstanding contributions to the Medical School in clinical or health services research. You can read the press release here.
There aren't enough donor organs to go around for patients who need aliver transplant. This sometimes forces doctors to make tough choices.If you were the doctor, how would you decide in the following scenario? There aren't enough donor organs to go around for patients who need a liver transplant. This sometimes forces doctors to make tough choices. If you were the doctor, how would you decide in the following scenario?Suppose there is a person who develops acute liver failure (ALF). While waiting for a liver transplant, this person gets sicker and sicker. When an organ is finally available, the chance that this person will survive WITH a transplant is only 42% at five years after the transplant. Since the average survival for most patients who receive a liver transplant is 75% at five years, the doctor wonders if it would be better to save the liver for someone else. Two possible ethical principles may guide the doctor in making this decision.
Using the principle of URGENCY, the doctor would give the first available organ to the sickest patient on the transplant waiting list, the ALF patient, because she/he is otherwise likely to die within a few days.
Using the principle of UTILITARIANISM, the doctor would try to maximize the quality and quantity of life of all the people on the transplant list. Let's say there are 25 other patients currently on the waiting list, and transplanting the ALF patient increases their risk of death by 2% each, for a cumulative harm of 50%. Since this harm of 50% is more than the benefit to the ALF patient (42%), the liver should be saved for someone else on the list.
A third possibility is for the doctor to weigh both URGENCY and UTILITARIANISM in making a decision about a transplant.
- URGENCY (sickest patient on the list gets preference)
- UTILITARIANISM (maximize benefit for the entire waiting list)
- A combination of URGENCY and UTILITARIANISM
How do your answers compare?
There's no absolutely right or wrong answer in this case—the choice depends on which of several competing ethical principles or which combination of principles you follow. In choosing a combination of URGENCY and UTILITARIANISM, you've decided to try to balance the needs of the sickest patient with the needs of all the people on the transplant waiting list.
CBDSM researcher Michael Volk, MD, is the lead author on a recent article that tackles difficult decisions like this one. Volk and his colleagues examined a method to incorporate competing ethical principles in a decision analysis of liver transplantation for a patient with ALF. Currently, liver transplantation in the United States is determined by the principle of “sickest first," with patients at highest risk for death on the waiting list receiving first priority. In other words, the principle of URGENCY is paramount. However, most experts agree that, given the limited supply of organs, there should be a cutoff for posttransplant survival below which transplantation is no longer justified.
Where does society draw this line? And what framework can we use for ethical guidance?
Decision analysis of resource allocation would utilize the principle of UTILITARIANISM, to maximize the broad social benefit. But surveys of the general public have shown that most people prefer to temper utilitarianism with other considerations, such as equal opportunity, racial equity, and personal responsibility. Another factor that might be considered is the principle of fair chances. This is the idea that patients who have not had a chance at a liver transplant should receive priority over those who have already had once chance at a transplant.
Volk constructed a mathematical model (Markov model) to test the use of competing ethical principles. First he compared the benefit of transplantation for a patient with ALF to the harm caused to other patients on the waiting list, to determine the lowest acceptable five-year survival rate for the transplanted ALF patient. He found that giving a liver to the ALF patient resulted in harms to the others on the waiting list that cumulatively outweighed the benefit of transplantation for the ALF patient. That is, using UTILITARIANISM as the sole guiding ethical principle gave a clear threshold for the transplant decision: if the ALF patient did not have a five-year survival rate of at least 48%, she/he should not receive a transplant under this principle.
But UTILITARIANISM is not always the sole guiding ethical principle. When Volk adjusted the model to incorporate UTILITARIANISM, URGENCY, and other ethical principles such as fair chances, he got different thresholds. Depending on the combination of ethical principles used, Volk and his colleagues have shown that the threshold for an acceptable posttransplant survival at five years for the ALF patient would range from 25% to 56%.
The authors of this study conclude:
"Our model is an improvement over clinical judgment for several reasons. First, the complexity of the various competing risks makes clinical decision making challenging without some form of quantitative synthesis such as decision analysis. Second, a systematic approach helps ensure that all patients are treated equally. Most important, this study provides moral guidance for physicians who must simultaneously act as patient advocates and as stewards of scarce societal resources."
Volk ML, Lok ASF, Ubel PA, Vijan S, Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation, Med Decis Making 2008;28, 763-772.
Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation.
Volk M, Lok AS, Ubel PA, Vijan S. Medical Decision Making 2008;28(5):763-772.
Reshma Jagsi, MD, DPhil, is Professor, Deputy Chair, and Residency Program Director in the Department of Radiation Oncology and Director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.
She graduated first in her class from Harvard College and then pursued her medical training at Harvard Medical School. She also served as a fellow in the Center for Ethics at Harvard University and completed her doctorate in Social Policy at Oxford University as a Marshall Scholar.
Susan Goold, MD, MHSA, MA
Professor of Internal Medicine, Medical School
Professor of Health Management and Policy, School of Public Health
Executive Director of Friends of Parkside (FOP)
Title: Evaluation of CHAT as a tool for engaging communities in priority setting
Abstract: Engaging minority and underserved communities in setting research priorities could make the scientific research agenda more equitable and more responsive to their needs. This presentation evaluates CHAT, a serious game, to prioritize health research based on feedback from 47 focus groups (N=519) across Michigan.
The Woll Family Speaker Series on Health, Spirituality and Religion
We are excited to be hosting a debate on Conscience Protection on Friday March 9th from 12-1 as part of the UMMS Program on Health, Spirituality and Religion. Please save the date! CME Credit provided (see below).
Point: Healthcare professionals are "obligated to provide, perform, and refer patients for interventions according to the standards of the profession.” NEJM, 2017
Counterpoint: Healthcare professionals have the right to opt out of performing or referring for procedures they view as objectionable in accord with their religious or personal values.
Join Dr. Naomi Laventhal and Dr. Ashley Fernandes in this academic discussion as part of the University of Michigan Program on Health, Spirituality and Religion.
Funded by the National Institutes of Health/Brigham and Women's Hospital/Boston University
Funding years: 2010-2013
The rapid identifcation of genetic risk factors for common, complex diseases poses great opportunities and challenges for public health. Genetic information is increasingly being utilized as part of commercial effors, including direct-to-consumer (DTC) genetic testing to provide risk information on common diseases to consumers. Very few empirical data have been gathered to understand the characteristics of DTC test consumers, the psychological, behavioral and health impact (clinical utility), and the ethical, legal and social issues associated with DTC services.
In the proposed research, we will survey users of the two leading US companies providing DTC genetic testing (23andMe and Navigenics) regarding their response to genetic test s for common diseases of interest, including heart disease, diabetes, Alzheimer's disease (AD), arthritis, and breast, colon, lung and prostate cancers. Each company now has thousands of customers and each anticipates extensive sales in coming years. Each has agreed to allow our group to survey consumers using third-party data collection and analysis procedures that will enable an independent consideration of the benefits and risks of DTC testing in this format. The companies have also agreed to provide genetic test information (with respondents' permission) for analyses. A total of 1000 consumers (500 from each company) website will be surveyed via the Internet at three time points: 1) before receipt of genetic test results; 2) approximately two weeks following receipt of test results; and 3) six months following receipt of results.
More information: http://www.psc.isr.umich.edu/research/project-detail/35031
PI: Scott Roberts
Co-I: Mick Couper
The Center for Ethics and Humanities in the Life Sciences at Michigan State University has posted information about its 2011-12 Brown Bag/Webinar Series. All sessions take place 12-1 pm in C-102 East Fee Hall on the East Lansing campus. Sessions for the fall include:
September 7: Helen Veit, PhD, "The ethics of aging in an age of youth: Rising life expectancy in the early twentieth century United States"
October 19: Scott Kim, MD, PhD, "Democratic deliberation about surrogate consent for dementia research"
November 10: Stuart J. Youngner, MD, "Regulated euthanasia in the Netherlands: Is it working?"
December 7: Karen Meagher, PhD candidate, "Trustworthiness in public health practice"
See www.bioethics.msu.edu/ for more information.