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 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 , Washington , Oregon , and Vermont ) 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.
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.
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.
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 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.
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.
Two weeks ago, I had the opportunity to travel to Havana, Cuba and speak with people interested in the topic of bioethics. Los Pinos Nuevos, a Protestant denomination with over 400 churches throughout the country, invited my wife and me to participate in discussions on bioethics over three days with up to twenty people involved in the educational activities of the denomination. I have been a hospital chaplain for the past seven years and have participated in bioethics from that perspective—usually in the role of supporting patients and families during very difficult times. I was very interested to hear a different culture’s perspective on these crucial matters.
This was my first time in Cuba and so I didn’t know what to expect. I tried very hard to avoid the image of the ugly American telling another culture, “Our way is the best way.” The images of Havana and its people are still in my mind—a city and people both vibrant and colorful. What I found was a group of very bright people, educated and professional, and very engaged in the topic of bioethics. Their questions reflected our shared humanity—questions about suffering and pain, issues related to the beginning of life as well as to the end of life.
Because this was only an introductory visit, I gave no formal lectures. However, with a big assist from my wife Elizabeth and her translation ability, I was able to share some important information on the image of God from John Kilner’s, Dignity and Destiny: Humanity in the Image of God. It stimulated a great deal of discussion and was very well received. For the believer, understanding that someone has the image of God influences the way we provide treatment. It gives us the opportunity not only to treat their body, but also to provide support to their spirit.
We look forward to the opportunity to return to Cuba in the not too distant future. For me, the conversation has just begun.