On the “Moral Era” of Medicine

A colleague shared a recent JAMA article titled “Era 3 for Medicine and Health Care.” The author, Dr. Don Berwick, quickly surveys Era 1 — the “era of professional dominance”– and Era 2 — the “era of accountability and market theory”– before introducing what he hopes to see in “Era 3,” the “moral era.”

Berwick identifies nine changes that need to take place in order to accommodate this new era which has seen the implementation of ACA, the extensive use of electronic medical records, and the consolidation of hospitals and health plans. Several of the suggested changes are already taking place in health care systems across the country. Others are a bit more idealistic. I would like to use this space to mention two of the more idealistic changes.

Change number 8 is “hear the voices of the people served,” a noble goal indeed. While many health care organizations have moved in the direction of ‘patient-centered care,’ fewer embrace “paying special attention to the needs of the poor, the disadvantaged, and the marginalized, and firmly defending healthcare as a universal human right.” Seeing each patient as a human being, possessing great worth and dignity, is fundamental to all areas of bioethics, from the research lab to the bed of the dying patient. Humans need to be treated with humanity.

Change number 9 is even more idealistic: “Reject greed.” Berwick writes:

“Health care has slipped into tolerance of greed and it has to stop, through volunteerism when possible, through strong regulation when not. Rapacious pharmaceutical pricing, hospitals’ exploiting market leverage to increase prices, profiteering physicians, and billing processes that deteriorate into games with consultants coaching on how to squeeze out more profit all hurt patients and impair trust.”

Idealistic, right? But we know that one devastating medical emergency can bankrupt an insured middle class family and that many others are finding it impossible to make ends meet while undergoing expensive medical treatment. Bioethics should continue to address the staggering financial impact that medicine has on our society. As Berwick suggests, blindly ignoring these factors will lead to even greater regulation.

Bioethics has much to say if “Era 3” is truly to be the “moral era.”

Organ Harvesting in China

On June 13, 2016 the House of Representatives passed HR 343, “Expressing concern regarding persistent and credible reports of systematic, state-sanctioned organ harvesting from non-consenting prisoners of conscience in the People’s Republic of China, including from large numbers of Falun Gong practitioners and members of other religious and ethnic minority groups.” )  In part, the bill “calls on the United States Department of State to conduct a more detailed analysis on state-sanctioned organ harvesting from non-consenting prisoners of conscience in the annual Human Rights Report.”  This is a welcome response to a horrific practice.

Newsweek  reports that according to The Falun Dafa Association, “[I]n China patients aren’t waiting for organs. Rather, organs are waiting for patients.”    This is because executed prisoners provide a constant supply of organs.  The international community must continue to voice its strong disapproval of this practice.  We look forward to the June 22nd report of David Kilgour, former Canadian Secretary of State, investigative journalist Ethan Gutmann, and Canadian human rights attorney David Matas on China’s organ transplantation industry.  It is to their great credit that they are shining a bright light on this troubling issue.

Organ donation is a scientific marvel and a great blessing to those who have received life-saving organs.  Executing  prisoners of conscience and harvesting their organs is beyond the pale of ethical conduct.  It defies human dignity and scandalizes the international community.  It needs to stop.

An Olympic-Sized Decision

Every four years, the nations of the world come together to celebrate sport and sportsmanship in the Olympic games.  The beauty and pageantry of the Olympics make it a quadrennial spectacle that is viewed by billions of people around the world.  Little-known sports gain international attention for a few days and unknown athletes burst into our living rooms with demonstrations of strength, speed, and endurance.  It’s all very exciting.  Enter controversy.

Olympic controversy has been abundant over the years.  Cold War tensions, doping scandals, unethical judging of events like figure skating and gymnastics are just a few of the scandals that have surrounded the Olympics over the years.  Host cities and countries have had their share of controversy also.  Sometimes Olympic cities seem ill prepared to host the games or the people from the host city wonder why the millions of dollars that are being spent on stadiums and hotels are not spent on education and health care.

The latest Olympic controversy centers on the Zika virus.  As word of some of the devastating effects of the virus rose, people began to ask if it is safe for 500,000 people from all over the world to come to Rio de Janeiro.  What if an Olympian (or any tourist) contracts the virus, then takes it back to his or her respective country?  Would there be disastrous implications?  Is this a risk that the international community should be willing to take?

Up to this point, the International Olympic Committee and the World Health Organization have resisted any attempts to postpone the Rio games.  However, bioethicist Arthur Caplan and a group of 150 experts have published a letter calling on WHO to act:  “WHO must revisit the question of Zika and postponing and/or moving the Games. We recommend that WHO convene an independent group to advise it and the IOC in a transparent, evidence-based process in which science, public health, and the spirit of sport come first. Given the public health and ethical consequences, not doing so is irresponsible.”

Now The Washington Post is reporting that Dr. Margaret Chan, WHO Director-General, has asked “members of the Zika Emergency Committee to examine the risks of holding the Olympic Summer Games as currently scheduled.”  Given the gravity of the situation, these are reasonable steps.  Caution must be exercised and the risks must be accurately assessed.  The potential cost to human life is too great.

Brain Cancer Awareness Month

Watching “60 Minutes” last week reminded me of why I pursued a degree in bioethics. The segment was on Duke University’s experimental treatment of glioblastoma patients and its surprising success treating this deadly cancer. There is a cautious optimism associated with this new treatment, which was granted “breakthrough status” by the FDA earlier this month.

Immediately I was thrown back to 2010 when my wife’s nephew Michael was diagnosed with a grade IV glioblastoma. I didn’t know much about it at the time, but it didn’t take long to discover how deadly it was. He went through the typical regimen of treatment—chemo, radiation, and surgery. His life was extended about a year and a half. He was diagnosed at age 16; he died just weeks after his 18th birthday.

Ethics became important to me because I saw firsthand how Michael and his parents were treated during his final hospital stay. Of course, there was a lot of compassion and concern for him as a young man with a terminal disease. However, even though the medical staff knew the prognosis and the likely disease trajectory, they didn’t do a good job of communicating things. At the very end, when the cancer mercilessly returned, some staff members placed a lot of pressure on his parents to sign EOL orders. Because they had thought the treatment had cured him, all of this was a shock to them. They were unprepared to have a DNR order placed. Eventually the point was moot. The tumor continued growing, his brain herniated, and he died.

During those painful last few weeks of his life, one of his nurses told us that some of the staff had considered calling for an ethics consult, but didn’t. EOL treatment is messy and complicated. Looking back at the time, it seems clear that ethics should have been involved to do its work—gather information, hear from medical staff and family, and make recommendations based on the patient’s desires.

Although I am very happy to see that the Duke trial has met with some success, I wish it had come a few years earlier. May is “Brain Tumor Awareness Month”. Let’s remember those who struggle with brain cancer and those who are seeking to find more effective treatments for this horrible disease. And for those who are concerned with ethics, let us make sure to hear the voices of those who can be easily overlooked.

A brief thought on rising suicide rates

A recent article in The Washington Post describes a very disturbing trend: “The U.S. suicide rate has increased sharply since the turn of the century, led by an even greater rise among middle-aged white people, particularly, women, according to federal data released Friday [April 22]” The article offers some suggestions as to why things have been so grim: last decade’s severe recession, drug addiction, social isolation, and the rise of the Internet and social media are among some of the possible explanations. Beyond this, the authors suggest, “economic distress—and dashed hopes generally—may underpin some of the increase, particularly for middle-aged white people.” These explanations are all plausible.

I am wondering, however, if something is missing from this analysis. Economic distress is not the only relevant factor in the United States from the past 15 years. We have also witnessed an increase in the presence of “assisted death” laws.  Procon.org states that four states have legalized physician-assisted death via legislation (California [2015], Washington [2008], Oregon [1994], and Vermont [2013]) and  in one state it has been permitted through court ruling (Montana, 2009).  Might it be that these laws and the public debate that accompanies them have changed people’s attitudes towards suicide? There is a certain kind of logic here. If death with dignity is an ultimate good, why is it limited only to those who are terminally ill?  If I have suffered an irreversible personal loss – my job, my wealth, or my family – why can’t I logically conclude that enough is enough and decide to end it all?

I am not suggesting that the physician assisted death laws are the cause of the higher suicide rate. I am simply wondering about their overall impact on our cultural thinking on death and dying. Although The Washington Post article is accompanied by helpful information from the American Foundation for Suicide Prevention, and many compassionate people and organizations are committed to providing help to those in need, it might be that in the current cultural climate, the goal of suicide prevention has been made more difficult.

A day at a bioethics conference

In my life as hospital chaplain, I have observed that bioethics often entails conflict resolution—usually around end-of-life issues. In these situations, the ethics consultant is called upon to consider difficult treatment possibilities and related factors (emotional, spiritual, personal, etc), and then to make recommendations to the medical team. But I have come to learn that the field of bioethics is much broader than conflict resolution regarding end of life treatment.

Last week, I had the opportunity to attend the Florida Bioethics Network’s annual conference in Miami. I’ve attended this conference several times in the past and I’m never quite sure how to assess it. This year my bottom line is this: the conference underscores the great diversity within the field of bioethics. There were presentations on bioethics and global climate change, physician orders for life-sustaining treatment (aka POLST), developing functioning ethics committees, setting healthcare priorities, and medical futility. This, I thought, was a fairly wide-range of topics for a one-day gathering. Even so, the list of topics included in the field of bioethics could go on and on.

The diversity of topics within bioethics has a much greater impact than broadening its appeal. It reflects the interconnectedness of life. Bioethics is not limited to the decisions that are made in the ICU or the emergency room; it incorporates decisions that are made in the kitchen, in the grocery store, in the cafeteria line, as well as in the halls of government and in corporate executive suites. We serve our community well when we engage each other about these things and strive for the common good. Easier said than done, of course, but important nonetheless.

The NFL & Research Ethics

It’s not every day that research ethics makes it way to the front pages of the newspapers. Usually those issues are addressed in other, less prominent venues. But last week’s New York Times article by Alan Schwarz, Walt Bogdanich, and Jacqueline Williams, “N.F.L.’s Flawed Concussion Research and Ties to the Tobacco Industry,” continued the controversial concussion discussion by reporting that the multi-billion dollar league omitted “more than 100 diagnosed concussions . . . including some severe injuries to stars like quarterbacks Steve Young and Troy Aikman.” One critic formerly associated with the league is quoted as saying: “You’re not doing science here; you are putting forth some idea that you already have.” The N.F.L. concussion issue was brought to public attention through PBS’ Frontline  and more recently through the movie, Concussion.

The Times article notes the disagreement between what the league says now (“clubs were not required to submit their data and not every club did”) and what the league said at the time of its earlier studies: “It was understood that any player with a recognized symptom of head injury, no matter how minor, should be included in the study.” It calls into question what the league knew, when it knew it, and how that impacted the well-being of its players. Just a few weeks ago, the New York Times also published “The N.F.L.’s Tragic C.T.E. Roll Call,” a list of the some of the most notable cases of deceased players who were found to have C.T. E.

As a lifelong N.F.L. fan, I hope that league would do its part to ensure the safety of its players, whether symptoms occur during or after their playing days. As someone interested in bioethics in general, I hope that researchers would continue to use the best practices available to ensure that their data collection and results are unbiased. This is our responsibility to future generations.

Let’s Talk…

            My work as a hospital chaplain has brought me to the bedsides of many hurting people from all walks of life.  My belief that people are created in the image of God informs my approach and enables me to offer spiritual support to them.  As you might guess, sometimes hospital interactions are light-hearted; at other times they are much more serious.

            Recently I attended two seminars designed to help medical professionals think through the importance of having “the conversation” with patients and their families.  The conversation, of course, is about end-of-life issues.  It was pointed out that when speaking to patients, medical personnel often move straight from diagnosis to treatment options, without allotting time to gauge reaction.  By moving quickly to treatment options, difficult and uncomfortable questions are avoided.   Ultimately, this is neither efficient nor helpful.  People who are not allowed the opportunity to discuss their condition will be more likely to misunderstand their treatment options and possible outcomes.

            If we are to treat people with the respect they deserve, we must take time to listen to them.  This has been my experience has a hospital chaplain.  There have been occasions when some active, engaged listening has produced amazing and profound statements such as “I can’t die now because I want to take care of my children” or “I have lived a good life and am ready to die” or any number of other things.  Each reflects the patient’s values and ultimately helps the medical team address concerns much more effectively.

            We all know the grim truth:  we will all die one day, but seem horribly unwilling to talk about it.  Valuing human beings as human beings needs to be a central tenet of our ethical approach.  Christians might call this the ethic of love.  I believe it makes good ethical sense.

The Zika Virus — Bioethical Implications

The recent appearance of the Zika virus has justly concerned many. With scientists evaluating its relationship to microcephaly in newborns, important ethical issues arise. The Washington Post notes that the CDC has reported that in the United States two recently Zika infected women had abortions, two suffered miscarriages, two delivered healthy babies, another gave birth to a baby with serious birth effects, and two are still pregnant.

The ethical issue of Zika and abortion is raised in a recent op-ed in the Los Angeles Times. Professor Charles Camosy notes that the U.N. High Commission for Human Rights is pressuring Central and South American countries “to change laws that protect prenatal children from violence” even though the WHO has cautioned, “[N]o scientific evidence to date confirms a link between Zika virus and microcephaly.”

Camosy’s point is well worth considering. He challenges the attempts of organizations to “impose foreign moral and legal principles onto those who think differently” and wonders why there has been so little American reaction to this “neocolonialism.” His observation is chilling. Citing Indiana’s infamous compulsory sterilization law of 1909, he notes, “It may be that the eugenic impulse is so deeply embedded in U.S. culture that we don’t even recognize it.”

Undoubtedly, the Zika virus is scary, especially for pregnant women. But I wonder along with Camosy, why the first response by some is to discard the “most vulnerable among us.” Surely, there must be other ways help to those in need.

Bioethics & the 2016 Election

On this Presidents Day, the United States finds itself in the midst of a heated presidential campaign. Both major parties are holding state-by-state elections to identify who will be the candidates for the November election. There are lots of issues being discussed—taxes, national security, immigration, etc.—sometimes at a dizzying and confusing pace. One issue noticeably absent from the discussion: bioethics. Outside the predictable back and forth over abortion, not much mention has been made of bioethical issues. However, in a February 3 CNN Democratic Town Hall, a voter who identified himself as suffering from cancer asked Hillary Clinton an important bioethical question: “. . . I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and — their end of life with dignity” (http://www.cnn.com/2016/02/03/politics/democratic-town-hall-transcript/).

After thanking the questioner, Mrs. Clinton responded, “And I have to tell you, this is the first time I’ve been asked that question . . . [W]e need to have a conversation in our country.” I agree. Wouldn’t it be good to know where the candidates stand on this and other bioethical issues, or at least be able to describe how they would approach it? Unfortunately bioethical topics do not lend themselves to brief, canned responses or to 30-second attack ads. Yet physician assisted death will continue to be part of our bioethical discussion for the foreseeable future. I am glad Mrs. Clinton was asked this question. We can only hope that the other presidential candidates will face similar inquiries.