As absolute and correct as those aphorisms may be, they can be hard for doctors to apply in the complex world of modern medicine.

A recent Medscape medical ethics survey of over 10,000 physicians found that when it comes to patient treatment, a significant number of physicians struggle when it comes to topics relating to honest, straight-forward communication, and even pain management. Physicians from a broad range of specialties answered 3 questions pertaining to patient treatment:

-     Would you ever hide information from a patient about a terminal or preterminal diagnosis, because you believe that it will bolster their spirit or attitude?
-      Would you ever prescribe a treatment that’s a placebo, simply because the patient wanted treatment?
-      Would you ever undertreat a patient’s pain, because of a fear of repercussions or because you are concerned that a patient — even a terminal patient — might become addicted?

Open Communication Is Often Difficult

When it comes to delivering bad news, 59.8% of physicians indicate they “tell it exactly as I see it,” while 14.6% indicate that they soften the news and “give hope even if there is little chance.” Two percent indicate that unless a patient is going to die imminently, they don’t tell him or her how bad the situation is and nearly one quarter (23.8%) say “it depends.”

“The kind of compassion that brings people into medicine is the type of compassion that is needed for delivering bad news,” says Kenneth Goodman, PhD, Director of the Bioethics Program at the University of Miami and author of Ethics and Evidence-Based Medicine: Fallibility and Responsibility in Clinical Medicine. But that compassion should never compromise the truth, he cautions.

Many of the physicians surveyed augmented their responses noting that, while they are honest, they try hard to deliver bad news in the most gentle, humane, and supportive way possible. That’s exactly what patients should expect from their doctors, Goodman advises. But in “softening” the truth, he believes that doctors don’t need to deviate from it.

“If there is something positive you can say, by all means say it. But only tell the truth: ‘I will be there with you. I will help you manage your pain. I will see to it that you can arrange your affairs.’ Those are truthful things,” Goodman says.

When doctors withhold information, they make it more difficult for patients to chart their course and undermine their own credibility.

From the patient’s point of view, “If I don’t know my time is limited I can’t put my affairs in order. I can’t say, ‘I’m sorry,’” he says. What’s more, “it’s not like patients are asking Dr. Kildare, ‘What are my chances, Doc?’ Patients are increasingly educated. If you don’t tell them, they’re going to be looking it up on the internet the next day, so you should probably be the source of the data, because you’re a human and you care about them.”

Goodman advises that the same rationale applies to the use of placebos. Nearly one quarter (23.5%) of respondents said they would prescribe a treatment that was essentially a placebo to a patient simply because he or she wanted treatment. Another 18.2% said, “It depends.”

Physicians who were willing to provide “placebo” treatment generally fell into 2 camps. Some said they would do it to appease a patient but only after telling them it wouldn’t do them any good. One doctor noted that he’d prescribe vitamins and supplements, “but I’d tell them I thought it was worthless”; while another would prescribe a cream for hemorrhoids, “but they are also forewarned” that the treatment wouldn’t do any good.

Still another noted, “In this day and age, many patients will not accept that the best treatment is tincture of time and they have no hesitation about reporting you to the state board or hospital administrator. So, I figure out something that will do the least potential harm and try that.”

Others say they’d be willing to prescribe a benign but ineffectual treatment in hopes of achieving a positive placebo effect. “Placebo works up to 50% of the time,” said one. “Placebos ARE a form of treatment!” noted another and, “Placebo can be psychologically beneficial and I don’t see that as placebo,” wrote a third.

Physicians in the first group need to be able to stand their ground in the face of insistent patients, Goodman advises. After all, they are the medical experts.

“Doctors need to be able to say, ‘I’m sorry, there is nothing I can do,’ No physician is going to provide drugs for a recreational purpose. Why, if a patient asks for an antibiotic for a virus or a prescription that won’t work, should he get it?” Goodman asks. As for those hoping to achieve a placebo effect he notes, if a patient finds out he or she has been prescribed a placebo, it will cause irrevocable damage to the physician-patient relationship.

Pain Management Quandaries

While the first 2 patient treatment questions in the survey pertained to communication, the last addressed pain management. While the overwhelming majority (84.1%) of physicians said they would never undertreat pain, a handful (5.6%) said they would, and about 1 in 10 (10.3%) said they would have to evaluate the situation before making a decision.

After filtering out responses from physicians – many of them emergency department doctors – noting that they routinely deny drug-seeking “frequent fliers” prescriptions for pharmaceuticals, the theme frequently voiced by doctors was that they would undertreat pain due to fear of lawsuits. A number of respondents augmented their answers with frustrated, emotional responses about state medical boards, government intrusion, and litigious patients.

Comments included: “I undertreat not due to concerns about addiction but concerns about Drug Enforcement.” “We live in a real world. I would like to think I would answer ‘no’ if real tort reform took place.” “I bet we all would in today’s drug-abusing, litigious society.” And “The state boards can wreck a doctor without appeal.”

Despite those concerns, others remained steadfast. “I have only the patient to believe as to how much pain they are experiencing. I have been lied to at times over the years, but I would rather try to believe people than to deny everyone because of some bad actors,” wrote one.

When Treatment Denial Causes Suffering

Another noted that physicians’ fears of repercussions have “caused patients to suffer needless pain. If a physician does not feel competent or comfortable handling pain issues, (s)he should refer that patient to a reputable pain specialist. Pain is a legitimate medical condition, which we took an oath to alleviate when possible. If the treatment is appropriate and well documented with the current safeguards in place, there should be no fear.”

Most respondents who elaborated on their answers, however, drew a sharp distinction between patients with chronic conditions and the terminally ill. Many noted that they do not prescribe narcotics to patients with chronic conditions, refer them to pain management specialists, and are vigilant when it comes to chronically ill patients who tend to “lose” prescriptions too often. When it comes to treating the terminally ill, however, respondents spoke in a single voice: treat their pain.

“Terminal patients should be able to get whatever they need whenever they need it,” wrote one. “Terminal patients get whatever they need,” said another. A third noted, “Terminal patients should never be allowed to suffer with pain because of inadequate treatment, especially fear of addiction: what difference does it make if they are going to die addicted to narcotics?”

Or, as one physician summed it up, “Palliative care is humane.”

In his introduction, Camosy, who is pro-life, outlined three goals: 1. Better map disagreements; 2. Find common ground across divides; 3. Have open hearts and open minds. Kissling, who is pro-choice, compared her pre-event anxiety to preparing for a wedding that both families believe is a horrible mistake. (Perhaps such fears were eased as the conference unfolded because there were security guards at the doors on the first day but not the second.)

After the conference, Camosy described it as largely successful in meeting these goals despite pockets of incivility, while Evangelical participant David Gushee (MacAfee School of Theology, Mercer University) described it as an audacious attempt that largely failed to find common ground.

Gushee was on the first panel, “Bridging the Abortion Divide: Recurring Challenges, Emerging Opportunities,” with his Common Ground colleague Rachel Laser, Mary Jacksteit of the Public Conversations Project (which initially attempted to bridge the abortion divide in the 1990s) and both Kissling and Miller. While I learned a lot from each discussion, theirs was the only one I attended that didn’t devolve into a remix of worn-out debates. Perhaps this is because all five speakers were already committed to the goal of exploring shared values.

Laser (who is pro-choice) and Gushee (who is pro-life) became friends through their work on an abortion governing document that was submitted to President Obama’s transition team. They described themselves as comrades in arms who bonded as they fended off friendly fire from their respective sides. In his opening remarks, Gushee described abortion as a tragedy. Kissling objected to this definition. She said the moral right of women to make decisions about reproduction is essential for them to be recognized as human beings and while she respects the “category of fetal life,” she doesn’t “have a sense of individual fetuses as possessing high value.” Even so, she’s troubled by what she sees as a coarsening of discourse over the issue.

Gushee’s use of the term tragedy initially struck me as emotionally loaded too. I did not choose abortion when I had an unplanned pregnancy, but several members of my social circle did in similar circumstances and only one of them seems to have experienced it as a tragedy. The rest have occasionally communicated feelings of guilt about their abortions, but not regret.

I have written for Christianity Today from a strongly pro-life perspective and yet I’m not sure I ever thought of abortion as tragedy either. Instead, I’ve thought of it and continue to think of it as morally wrong. When I think of tragedy nowadays, I tend to think of my son Gabriel’s suicide. The issues are related in that he didn’t have the right to take his own life any more than I had the right to take it and yet they are different because he was mentally impaired by depression when he did so. (Despite notions to the contrary, the American Foundation for Suicide Prevention says suicide is overwhelmingly a function of mental illness rather than free will.)

Because Gabriel’s death left his brother with no siblings in this world, I’ve become increasingly grateful for his cousins, several of whom were conceived outside of marriage and whose biological parents either never married or married and later divorced. That is a different kind of heartbreak, and yet all these young people are flourishing as are our bonds with one another despite the complications and pain common to all blended and broken families.

My gratitude for them has gotten me thinking about those other children who are missing from my social network because of abortion. I experience Gabriel’s death as tragic because I had the opportunity to know and love him, while I experience those children as mere absences because I never got the chance to know them. I’ve subjectified them as thoroughly as Kissling has.

This is an oft-cited problem with discussions about abortion that pit the life of the unborn child against the welfare of the mother. Women can speak for themselves while unborn children can’t and we are incapable of fully comprehending what we are missing, even if we can glimpse it from the joy other children bring us.

I talked to Gushee about his use of the word tragedy. He said it may not have been the most philosophically precise description, but he was trying to communicate that abortion reflects a deep brokenness in the human condition. This sounds exactly right.

When I think about how tragic my son’s death is, I’m reminded that I would much rather live with the anguish it causes me than envision a life in which I never knew him. Abortion is a tragedy in and of itself, regardless of whether or not we, as individuals or as a society, feel that it is so.

1 Corinthians 13:12 says we see things imperfectly in our finite understanding, but one day we will see with perfect clarity. Only then will our perception of abortion match reality.

By Christine A. Scheller, Huffington Post

 British Scientist’s Work Has Enabled the Birth of Four Million Test-Tube Babies

[WSJ] Robert Edwards, a feisty British embryologist who fundamentally transformed human procreation, received the 2010 Nobel Prize in Medicine Monday for the development of clinical in vitro fertilization.

“By a brilliant combination of basic and applied medical research, [Dr.] Edwards overcame one technical hurdle after another in his persistence to discover a method that would help to alleviate infertility,” the Nobel Prize committee said in its award citation. “His contributions represent a milestone in the development of modern medicine.”

In vitro fertilization so far has enabled the birth of four million children to infertile couples world-wide.

Dr. Edwards, 85, is in failing health and was too ill to make any public response to the award, his colleagues said. “He understood this morning that he was finally awarded the prize, and he was smiling plenty when his wife, Ruth, gave him the news,” said embryologist Jacques Cohen, the senior editor of Reproductive Biomedicine Online, which Dr. Edwards founded.

The basic techniques of human embryo creation that Dr. Edwards pioneered form the technical foundation of in vitro fertilization, human cloning techniques, genetic screening of human embryos and embryonic-stem-cell research.

Working in close collaboration with gynecologist Patrick Steptoe, who died in 1988, Dr. Edwards overcame entrenched political and religious hostility, as well as the disapproval of many other scientists at the time, to pioneer the basic techniques of human embryology that led to the birth of the first test-tube baby, Louise Brown, in 1978.

“It took them 10 years and over 100 attempts,” Dr. Cohen said. “It demonstrates tremendous tenacity.”

Dr. Edwards and Dr. Steptoe worked with no public funding or direct research support at a time when the concept of a test-tube baby seemed the stuff of Orwellian science fiction. The birth of the first human child who began life as an embryo outside the human body made headlines world-wide and, within a few years, spawned hundreds of commercial IVF clinics.

Dr. Edwards was tireless in his support of the fledgling field. He trained a generation of leading human embryologists, founded the field’s first professional society and began a series of journals to spread its research findings. He never hesitated to debate the implications of his work. Despite its widespread acceptance today as an infertility treatment, these embryo techniques have never strayed far from tabloid headlines or political controversy.

“He was one of the first scientists to encounter moral opposition to his work at a research level,” said University of Pennsylvania bioethicist Arthur L. Caplan. “They were working against grave concerns from many quarters that it was not right to create life outside the body, that it was risky and dangerous and it was not part of God’s will to let the infertile become fertile.”

“Most of the time, the things that win the Nobel Prize are esoteric,” said Marcelle Cedars at the University of California, San Francisco, who is incoming president of the Society of Reproductive Endocrinology and Infertility.

“This was something that had immediate real-world applications,” she said. “It has touched the lives of so many people in such a profound way.”

 

Write to Robert Lee Hotz at sciencejournal@wsj.com

October 15 & 16, 2010, Princeton University - Open Hearts, Open Minds & Fair Minded Words - A Conference on Life & Choice in the Abortion Debate 

The conference is inspired by President Obama’s call for those on different sides of the abortion issue  to work together where we agree and engage in “vigorous debate” with “open hearts, open minds, and fair minded words”

Cosponsors:  University Center for Human Values & James Madison Program, Princeton University; Department of Theology, Fordham University; Center for Bioethics, University of Pennsylvania; Bioethics International

Cochairs:  Charles Camosy, Fordham University; Frances Kissling, University of Pennsylvania; Jennifer Miller, Bioethics International; Peter Singer, Princeton University

For more information and to register visit:  http://uchv.princeton.edu/Life_Choice/

Goals and Values of the Conference

1. Explore new ways to think and speak about abortion. Recognizing the divisive nature of the debate, and its larger effect on public discourse, we wish to explore new words, ideas, categories, arguments and approaches for engaging with each other
2. Approach issues related to abortion with open hearts and open minds. We wish to make a concerted effort to engage with each other with the kind of humility and quiet necessary to really listen and absorb the ideas of someone who thinks differently.
3. Define more precisely areas of disagreement and work together on areas of common ground. Some sessions are intended to cut through the confusion and fog of the public abortion debate, by clarifying more precisely areas of disagreement, potentially highlighting areas where we can move forward.
4. Get to know those on multiple sides of the issues more personally. In part because it is often easier to take seriously and listen to those one knows personally, we will self-consciously promote social interaction at this conference through lunches, cocktail hours and breaks.

So how might the new Bioethics Commission operate? Fortunately, we have some idea because its new chair, Amy Gutmann, outlined her views on how bioethics commissions should be run in an article, “Deliberating About Bioethics” in the Hastings Center Report back in 1997. Most of the 13 member panel hasn’t been appointed yet, but Gutmann is well-known for her scholarly work on deliberative democracy, which she defines “as a form of government in which free and equal citizens (and their representatives), justify decisions in process in which they give one another reasons that are mutually acceptable and generally accessible, with the aim of reaching conclusions that are binding in the present on all citizens but open to challenge in the future.”  

In her article (co-authored with political philosopher Dennis Thompson), Gutmann distinguishes deliberative democracy from proceduralism and constitutionalism. In proceduralism, once basic rules of the game have been hammered out, moral disagreements are resolved through political bargaining or by moving them out of politics into the private sphere. Constitutionalism tries to avoid moral disagreement by creating a sphere of protected rights that are shielded from ordinary politics.

In Gutmann’s conception, deliberative democracy is an ongoing, transparent, society-wide discussion of fundamental values. Deliberative democracy is supposed to serve four important social purposes by addressing four ineradicable sources of moral disagreement. She identifies the four sources of moral disagreement as arising from (1) the scarcity of resources; (2) limited generosity; (3) incompatible moral values; and (4) the incomplete understanding that characterizes almost all moral conflicts. The four social purposes that deliberative democracy is supposed to address are (1) the promotion of the legitimacy of collective decisions; (2) the encouragement of public-spirited perspectives on public issues; (3) the promotion of mutually respectful decisionmaking: and (4) the correction of inevitable collective action mistakes.

Gutmann offers some concrete examples of how she thinks deliberative democracy might work. Let’s take scarcity. She notes that far more people need organs than there are organs available for transplant. How do we decide who gets them? She suggests that “deliberation can help those who do not get what they want or even what they need come to accept the legitimacy of a collective decision.” As it happens in 1984, the U.S. Congress passed the National Organ Transplant Act which made organ sales illegal. Since then donated organs have been allocated by the United Network of Organ Sharing based on various medical criteria depending on the specific organ. Although some voices (including mine) have been arguing for compensating donors as a way to increase supplies, it is true that there has not been much public pressure to change the current system. However, one hopes that the deliberative process will someday correct this particular collective action mistake. On the other hand, we can expect a lot more bioethical deliberation if the U.S. adopts a more centralized and increasingly government-controlled health care system. In another article Gutmann favorably cites the United Kingdom’s National Institute for Health and Clinical Excellence (NICE) as an example of how democratic deliberation works in making decisions about what medicines and treatments will be made available to patients in that country’s National Health Service.

The next issue is limited generosity. Gutmann acknowledges, “Deliberation will not turn self-centered individualists suddenly into public-spirited citizens.” She argues that members of bioethics commissions should not be chosen just to represent specific interest groups; that would simply result in old-fashioned interest group bargaining. Gutmann asserts that the number and diversity of voices on a bioethics commission is not necessarily the most important factor in making deliberation work. Instead bioethics commissioners “must come to the forum open to changing their own minds as well as to changing the minds of their opponents.” Bioethics commissioners will be more amenable to changing their minds on such limited questions as when is it appropriate to include minors in medical research rather than issues like abortion and assisted suicide.

Which brings us to Gutmann’s third source of moral disagreement—incompatible moral values. Here she recommends that bioethics commissions isolate irresolvable conflicts and focus on areas where agreement might be possible, e.g., minors in medical research. As an example of how deliberation can “economize” on moral disagreements, she cites the fetal tissue research guidelines issued in 1975 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission held extensive public hearings and consulted legal experts, scientists, ethicists, and philosophers before promulgating its regulations allowing fetal tissue research. Those regulations included the requirement that researchers seeking to harvest tissue not have any part in the timing, method, or procedures used to terminate a pregnancy; no inducements to terminate a pregnancy could be made; both parents must consent; and artificial life support for nonviable fetuses was prohibited. But this deliberative outcome did not hold. In 1988, arguing that the fetal tissue research could encourage abortion, the Reagan administration imposed and later the Bush administration maintained a federal funding moratorium on fetal tissue transplant research. The moratorium was lifted by President Bill Clinton in 1993.

The history of the bioethical deliberation over fetal tissue research might be seen as an example of Gutmann’s fourth purpose of deliberation, the correction of mistakes. In the fetal tissue case, later experts did argue that political appointees under Reagan and Bush were mistaken in their belief that federal funding of fetal tissue research would lead to more abortions. On the other hand, given that a National Institutes of Health advisory panel in 1988 recommended after considerable deliberation that the moratorium be lifted, one suspects that the encourages-more-abortions argument for banning federal funding was a stand-in for a deeper philosophical repugnance toward all abortion. In any case, the fetal tissue case and President Obama’s decision last year to overturn President George W. Bush’s limits on federal funding of human embryonic stem cell research shows that bioethics decisions in the U.S. are already provisional and open to challenge.

I generally agree with the proceduralists and constitutionalists. In order to keep the social peace and allow various visions of the human to flourish along side of one another, certain big questions about birth, death, and the meaning of life must be isolated from politics, making them private concerns to be protected from majoritarian tyranny. But for her part, Gutmann concludes hopefully, “By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept.” Given the current stark polarization that characterizes our national political institutions (if not public opinion), Gutmann, as head of the new Presidential Commission for the Study of Bioethical Issues, has her work cut out. Good luck to her.

Ronald Bailey is Reason’s science correspondent. His book Liberation Biology: The Scientific and Moral Case for the Biotech Revolution is available from Prometheus Books.

[CNA] A new Gallup Poll reports that a strong majority of churchgoing Catholics do not think abortion is morally acceptable. However, it claims about half of churchgoing Catholics dissent from Catholic morality on matters of sexual morality, divorce and human embryo research.

The Gallup Poll, whose results were released on Monday, surveyed 3,022 adults and claims a margin of error of plus or minus two percentage points among all adults. About 24 percent of poll respondents identified themselves as Catholic.

According to the results, only 24 percent of churchgoing Catholics thought abortion was morally acceptable, compared to 52 percent of non-churchgoing Catholics. Catholics from both groups approved of abortion slightly more often than their non-Catholic counterparts.

Sixty-three percent of churchgoing Catholics found divorce to be morally acceptable, compared to 77 percent of their non-churchgoing coreligionists and 46 percent of non-Catholic churchgoers.

Asked about the morality of sexual relations between an unmarried man and woman, about half of churchgoing Catholics declared the action morally acceptable while about 77 percent of non-churchgoing Catholics did. This compares to only 30 percent of non-Catholic churchgoers.

The poll also found that about half of churchgoing Catholics believed human embryonic stem cell research was morally acceptable, compared to 70 percent of non-churchgoing Catholics. Jennifer Miller, Executive Director of Bioethics International, discussed with CNA why American Catholics may approve of the use of embryonic stem cell research.

Miller noted that she was not surprised by the poll’s results. She believes that science is progressing at such a rapid pace, that the average American cannot keep up with all the information.

When embryonic stem cell research started to hit mainstream news during the Clinton Administration, Miller explained, the average person “was not typically aware of the differences between embryonic and adult stem cell research.” The result was that Americans “lumped the two together” and continue to believe that the Catholic Church unfairly was “opposed to all stem cell research, which of course was not the case.”

Today, Miller believes that people are “slowly” coming to learn that “the two are not the same” and that one is morally acceptable, while the other has a “host of ethical questions.”

The truth about stem cell research, Miller says is, that scientists initially preferred embryonic stem cell research to adult stem cell research, but that has shifted because scientists can now create “embryonic like” stem cells through “reprogramming” without the ethical consequences of destroying a human life.

When asked why Catholics are supporting embryonic stem cell research, Miller cited a “loss of moral authority” from the sexual abuse scandals as a contributing factor to this dissension.

Another factor, according to Miller, is a societal “‘Me, Inc.’ syndrome, where the truth has become relative to us: when does life begin for me? When do I feel a human organism is the subject of rights and merits protection and care?”

She also explained that when Bioethics International educates people on the ethical implications of embryonic experimentation and noted that the area of most resistance centers on “the value of a life created in a sterile petri dish and frozen.” This is because, she continued, “people believe these “embryos will die anyway” they think it is “better to bring about some good from their ‘lives’.”

The main issue, Miller believes, is “not a problem of gaps in scientific knowledge, but of our understanding of life in general. This is a question of whether we value life unconditionally, or conditionally. This question is much deeper and in my opinion is at the root of most ethical questions facing society today.”

Ms. Miller’s panel entitled, “Climate Justice Adaptation: Public Health and Emergency Preparedness,” is schedule for this Thursday January 29th at 1:15pm.  We look forward to seeing you Thursday. 

• Panel Time: Thursday January 29, 2009 1:15pm – 2:30pm
• Location: Fordham University Lincoln Center Campus, 113 W. 60th St., New York City
• Panelists’ Bios
• Conference Agenda
• Panel Description: Emergency preparedness for climate disasters is an increasingly essential and immediate element of climate change adaptation. Panelists will examine how municipalities are preparing for imminent climate disasters and the need to protect communities from displacement, disinvestments and disempowerment in the immediate aftermath of climate disasters.

Despite telling the New York Daily News that there is “no value you can put on an organ when it saves someone’s life. There is no greater feeling on this planet,”  he is suing Dawnell for the organ or $1.5m. 

Sky News states that their relationship had been suffering due to the strain of his wife’s medical issues. Dr Batista states, ”My first priority was to save her life… The second bonus was to turn the marriage around.” But it did not work and four years later she filed for divorce.

UPenn bioethicist Arthur Caplan states that the likelihood of Dr. Batista getting his kidney back is “somewhere between impossible and completely impossible”.

Likewise Georgetown bioethicist Robert Veatch emphasizes that it is illegal for an organ to be exchanged for anything of value and that a donation is a gift: “It’s her kidney now and taking the kidney out would mean she would have to go on dialysis or it would kill her.” According to SkyNews, Mr Veatch further mentioned that no reputable surgeon would perform such a procedure and no court could compel someone to undergo an operation.

Jennifer Miller, Excutive Director of Bioethics International in New York City, further elaborated that “removing the donated kidney would not only violate the hippocratic oath of ‘do no harm’, but also violate the patient’s, in this case the wife, wishes.”

(c) 2009 Bioethics International