Christian Vercler is a Clinical Associate Professor of Pediatric Plastic Surgery at the University of Michigan C.S. Mott Children’s Hospital. He is a service chief of the Clinical Ethics Service in the Center for Bioethics and Social Sciences in Medicine (CBSSM). Dr. Vercler has a special interest in ethics in surgery and he holds master's degrees in both Theology and Bioethics. He has a passion for teaching medical students and residents and has won teaching awards from Emory University Medical School, Harvard Medical School, and the University of Michigan.
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Scott L. Greer, Ph.D.
Professor, Health Management and Policy, Global Public Health, and Political Science
Physician Autonomy in Neonatology from 1979-2016: The Forces of Law, Ethics, Technology, and Families
Charley Willison, University of Michigan
Michael Rozier, St. Louis University
Scott L. Greer, University of Michigan
Joel Howell, University of Michigan
Renee Anspach, University of Michigan
Ann Greer, University of Wisconsin-Milwaukee
Neonatology as a field has pushed the boundary of which lives can be saved, now making it possible for babies to survive even if they are born ten earlier than than Patrick Kennedy, whose treatment in 1963 marked a surge into public consciousness for the field. Neonatologists are therefore positioned on frontiers of both medical advance and legal, ethical, and social debates.
Like other medical specialists, neonatologists face competing pressures. They must balance what can be done for their patients against what should be done for their patients. Evolving technology constantly changes what can be done, which means providers regularly reconsider what should be done. Because the neonatologist’s patient is always silent about her or his wishes, providers must give heed to the interests voiced by other interested parties. First among these are their patients’ caregivers, usually parents. Neonatologists also face pressure from colleagues both within neonatology and in other specialties. Additionally, hospital administration also shapes provider choices, especially related to matters of finance and public relations. Neonatologists must also navigate social forces, especially in law and ethics, that can be particularly challenging in the United States, where any question related to reproduction can quickly become a social controversy far beyond a single practitioner’s control.
Our study attempts to answer the following question: Over the past several decades, how have neonatologists negotiated these complex pressures when making life-and-death decisions? To put it more personally, in a field where providers must often choose between the lesser of many poor options, how do neonatologists arrive at decisions that they can live with? To answer these questions, we draw upon existing scholarship in the history of neonatology9,10 as well as several waves of interviews with physicians that took place over the course of nearly four decades. Our approach is to explore changes that limit the professional autonomy of neonatologists by comparing the findings of interview data collected since 1979 with the better-known technological, organizational, and legal or ethical developments surrounding neonatologists. Neonatologists created a new area of medicine by rescuing children who had previously died, but thereby exposed themselves to pressures from parents to the law.
Ryan Antiel, MD, MSME, Department of General Surgery, Biomedical Ethics Program, Mayo Clinic
Extreme prematurity is the leading cause of infant death and morbidity. The urgent need for a better way to support the extremely premature infant led to the development of an extrauterine system to better bridge the transition from fetal to postnatal life. The goal of this “artificial womb” is to maintain prenatal physiology in the extremely premature neonate to support normal development and reduce the complications associated with prematurity. In this presentation, we will discuss the development and applications of the artificial womb, as well as the limitations of this technology. We will focus on three current ethical challenges: ectogenesis, the boundary of viability, and the difference between physiological and clinical success.
How should the US judicial system determine compensation for "pain and suffering" Take a look at a complicated case.
Ladies and Gentlemen of the Jury
Let's suppose that you're a member of a jury for a court case involving an industrial accident. A 29-year-old employee, Charlie, has suffered brain damage in this accident.
- Charlie should get a very large award for pain and suffering, since his life overall has been so adversely affected by the accident.
- Charlie should get a moderate award for pain and suffering, since he has suffered cognitive impairment, but he does not have ongoing physical pain.
- Charlie should get a very small award for pain and suffering, since he is actually happier now than he was before the accident.
- I don't think that the US judicial system should allow awards for pain and suffering at all.
- I'm not sure what pain and suffering means in a legal sense, and I don't know what to award to Charlie.
How do your answers compare?
In a recent article, CBDSM's Peter A. Ubel and Carnegie Mellon University's George Loewenstein challenge the conventional view that awards for pain and suffering should be made literally as compensation for feelings of pain and of suffering. Ubel and Loewenstein argue from their expertise in the psychology of judgment, decision making, adaptation, and valuation of health states.
They cite many studies showing that people adapt well to very serious disabilities, such as paraplegia and blindness, returning fairly quickly to near-normal levels of happiness after a period of adjustment. Thus, if juries make pain-and-suffering awards literally on the basis of misery, such awards would be unacceptably small.
But Ubel and Loewenstein delve further. Even though people with serious disabilities have normal levels of happiness, they would still prefer not to have the disabilities. "We believe that the reason for this discrepancy between hedonic measures and stated preferences . . . is that people care about many things that are not purely hedonic, such as meaning, capabilities, and range of feeling and experience."
In enlarging the definition of pain and suffering, Ubel and Loewenstein do not propose to merely add to the factors that a jury must take into consideration in the current judicial system. Indeed, the authors find several problems with the current system, including inequities in compensation and the evaluation of injuries in isolation. They include in their article a three-part proposal for a radical change in judicial procedure.
First, they would recruit a random panel of citizens to compile and categorize injuries. Groups of injuries would be ranked on the basis of the appropriate level of compensation for those injuries. This panel would call on experts to inform their decisions. "Decisions about an injury's proper category would take into account not only the emotional consequences of the injury but also the person's ability to function across important life domains—social functioning, work functioning, sexual functioning, sleep, and the like."
This list of grouped and ranked injuries would have some similarities to the list of health conditions that the State of Oregon created in the 1990s to help allocate Medicaid funds. Another existing model for this list would be lists used to make decisions about workers' compensation claims—for example, benefits for loss of a thumb are twice as great as benefits for loss of a second finger.
Second, Ubel and Loewenstein propose a mechanism for determining monetary damages. Using the list produced by the citizen group described above, federal or state legislators could determine a maximum award for pain and suffering. Based on this damage cap, a range of awards would be set for each category of injuries.
Third, the juries would enter in, using the guidelines set up in the steps described above and then tailoring awards to the individual circumstances of each case. Under this plan, juries would do what people tend to do best: compare and rank things. Ubel and Loewenstein note that "juries could help determine if the victim has extenuating circumstances that should drive the award to either the lower or upper end of acceptable compensation for that group of injuries. . . Our proposal does not do away with jury trials but instead enables juries to involve themselves in the kind of judgments they are best suited to make."
Ubel and Loewenstein conclude, "The determination of pain-and-suffering awards should be revised to take account of recent advances in understanding human judgment and decision making."
Read the article:
Should people with more severe health problems receive state funding for treatment before people with less severe health problems? See how your opinion compares with the opinions of others.
Imagine that you are a government official responsible for deciding how state money is spent on different medical treatments. Your budget is limited so you cannot afford to offer treatment to everyone who might benefit. Right now, you must choose to spend money on one of two treatments.
- Treatment A treats a life threatening illness. It saves patients' lives and returns them to perfect health after treatment
- Treatment B treats a different life threatening illness. It saves patients' lives but is not entirely effective and leaves them with paraplegia after treatment. These patients are entirely normal before their illness but after treatment will have paraplegia.
Suppose the state has enough money to offer Treatment A to 100 patients. How many patients would have to offered Treatment B so that you would have difficulty choosing which treatment to offer?
How do your answers compare?
The average person said that it would become difficult to decide which treatment to offer when 1000 people were offered Treatment B.
What if you had made another comparison before the one you just made?
In the study, some people were asked to make a comparison between saving the lives of otherwise-healthy people and saving the lives of people who already had paraplegia. After they made that comparison, they made the comparison you just completed. The average person in that group said it would take 126 people offered Treatment B to make the decision difficult. The differences are shown in the graph below
Why is this important?
The comparison you made is an example of a person tradeoff (PTO). The PTO is one method used to find out the utilities of different health conditions. These utilities are basically measures of the severities of the conditions. More severe conditions have a lower utility, and less severe conditions have a higher utility, on a scale of 0 to 1. Insurance companies, the government, and other organizations use these utilities as a way to decide which group to funnel money into for treatments.
On the surface, it seems like basing the money division on the severity of a condition is a good and fair method, since theoretically the people who are in the greatest need will be treated first. However, the PTO raises issues of fairness and equity that aren't accounted for in other utility elicitation methods like the time tradeoff (TTO) and rating scale (RS).
For example, when asked to decide how many people with paraplegia would have to be saved to equal saving 100 healthy people, many people say 100; that is, they think it is equally important to save the life of someone with paraplegia and a healthy person. Going by values obtained using the TTO or RS, an insurance company may conclude that 160 people with paraplegia (using a utility of .6) would have to be saved to make it equal to saving 100 healthy people. This would mean that less benefit would be gotten by saving someone with paraplegia, and thus they might not cover expenses for lifesaving treatments for people with paraplegia as much as they would for a healthy person. The PTO shows that many people would not agree with doing this, even though their own responses to other utility questions generated the policy in the first place.
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Click to decide between death and living with a colostomy. Which would you choose? Are you sure?
Given the choice, would you choose immediate death,or living with a colostomy (where part of your bowel is removed and you have bowel movements into a plastic pouch attached to your belly)?
- Immediate Death
Think about what it would be like if you were diagnosed with colon cancer. You are given the option of choosing between two surgical treatments.The first is a surgery that could result in serious complications and the second has no chance of complications but has a higher mortality rate.
|Possible outcome||Surgery 1
|Cure without complication||80%||80%|
|Cure with colostomy||1%|
|Cure with chronic diarrhea||1%|
|Cure with intermittent bowel obstruction||1%|
|Cure with wound infection||1%|
|No cure (death)||16%||20%|
If you had the type of colon cancer described above, which surgery do you think you would choose?
- Surgery 1
- Surgery 2
How do your answers compare?
Are you saying what you really mean?
CBDSM investigators Brian Zikmund-Fisher, Angela Fagerlin, Peter Ubel, teamed up with Jennifer Amsterlaw, to see if they could reduce the number of people choosing the surgery with the higher rate of death and therefore reducing the discrepancy. A large body of past research has shown that people are notoriously averse to uncertainty. The investigators had a hunch that uncertainty could account for some of the discrepancy. Surgery 1 has a greater number of ambiguous outcomes, perhaps causing people to be averse to it. In an effort to minimize this uncertainty, the investigators laid out a series of scenarios outlining different circumstances and presentations of the two surgeries. For example the research presented some of the participants with a reframing of the surgery information, such as:
|Possible outcome||Surgery 1
|Cured without complication||80%||80%|
|Cured, but with one of the following complications: colostomy, chronic diarrhea, intermittent bowl obstruction, or wound infection||4%|
|No cure (death)||16%||20%|
The investigators believed by grouping all of the complications together that people would be more apt to chose the surgery with the lower mortality rate, because seeing a single group of undesirable outcomes, versus a list, may decrease some of the ambiguity from previous research.
Although none of the manipulations significantly reduced the percentage of participants selecting Surgery 2, the versions that yielded the lowest preference for this surgery all grouped the risk of the four possible complications into a single category, as in the example shown above.
Why these findings are important
Over the past several decades there has been a push to give patients more information so they can make decisions that are consistent with their personal preferences. On the other hand there is a growing psychological literature revealing people's tendency to make choices that are in fact inconsistent with their own preferences; this is a dilemma. Because the present research suggests that the discrepancy between value and surgery choice is extremely resilient, much research still needs to be done in order to understand what underlies the discrepancy, with the goal of eliminating it.
The research reported in this decision of the month is currently in press. Please come back to this page in the near future for a link to the article.
Read the article:
Can avoidance of complications lead to biased healthcare decisions?
Amsterlaw J, Zikmund-Fisher BJ, Fagerlin A, Ubel PA. Judgment and Decision Making 2006;1(1):64-75.
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.
This special interest group is led by Dr. Scott Roberts who is an Associate Professor in the Department of Health Behavior and Health Education at the School of Public Health as well as the Director and Co-Director of the Public Health Genetics Certificate Program and the Dual Degree Program in Public Health and Genetic Counseling, respectively. Research within this area examines the ethical, social and behavioral implications of advances in genomics. CBSSM serves as a crucial locus for facilitating collaborations across disciplines and units. In fact, several groups across campus have invited us to collaborate on the study of bioethical issues related to burgeoning genomics-related research; these partners include investigators at U-M’s Comprehensive Cancer Center, the Michigan Center for Translational Pathology, and the Division of Pediatric Genetics.
Topics of interest include the following:
- The psychological and behavioral impact of genetic testing (Scott Roberts; Brian Zikmund-Fisher)
- Communication of genetic risk information (Michele Gornick; Scott Roberts; Beth Tarini; Brian Zikmund-Fisher)
- Direct-to-consumer genetic testing (Scott Roberts)
- Healthcare provider education in genomics (Scott Roberts)
- Informed consent in genomic research (Michele Gornick)
- Expert decision-making in genomic medicine (Raymond De Vries)
- Public understanding of genomics (Michele Gornick; Scott Roberts)
- Ethical and policy implications of genomic discoveries (Michele Gornick; Raymond De Vries)
The special interest group in Health, Justice and Community is led by Dr. Susan Dorr Goold, a Professor in the Department of Internal Medicine and Health Management and Policy at the School of Public Health. Research in this area aims to improve knowledge, understanding, and practice in resource allocation and distributive justice, ethics of health policy (public and private) and community engagement, with the overarching goal of improving health equity. Scholarly approaches to the important and enduring questions include a variety of social science methods as well as conceptual and philosophical analysis. Surveys, mixed methods research, community-based participatory research and deliberative procedures represent particular strengths. Research that falls within this area includes topics such as:
- Deliberative public views on health and health care spending priorities
- Resource allocation decisions by local public health officials
- Public views about policies during public health emergencies
- Community priorities for health research
- Reproductive justice
- Physicians’ and patients’ views about physician stewardship
- Conflicts of interest and obligation for physicians and scientists
- Ways to ameliorate health disparities