“Our Family Secrets” Exposed — The Ethics of Whistleblowing

This week the Annals of Internal Medicine published an article so controversial they felt the need to publish an accompanying editorial, explaining their decision to publish the anonymous article.

The article, “Our Family Secrets” describes two experiences where a health care provider has acted inappropriately while patients were under anesthesia. The editorial describes the acts with poignant alarm: “The first incident reeked of misogyny and disrespect—the second reeked of all that plus heavy overtones of sexual assault and racism.”

Few things are as disturbing as the knowledge that things like this happen, perhaps more than we’re comfortable admitting, even if this is an extreme example. Treating patients with respect is a core value of health care, but “although we wish it were otherwise, most physicians at some point find themselves in the midst of situations where a colleague acts in a manner that is disrespectful to a patient.”

What is the right way to respond to this kind of behavior? What if the person acting inappropriately is your superior? Do you confront them immediately, as the anesthesiologist did? Do you report to their superiors? Do you try to ignore it? Do you join in, begrudgingly or otherwise? Do you write an essay for all the world to see?

While the actions of the individuals in the article are a topic for a lengthy discussion, the author’s decision to write the story, and the Annals of Internal Medicine‘s decision to publish it are an interesting conundrum altogether. The author ends his essay with, “I know this is my silence to break,” but is whistleblowing in this fashion the right way to handle these shameful secrets? It places serious negative connotations on the health care profession, including many innocent, respectful people. It might deter people from seeking the help they need, or make them wary of fully trusting or disclosing to their physicians or nurses. It could cause serious, palpable harm. The editorial discloses, “We all agreed that the piece was disgusting and scandalous and could damage the profession’s reputation. Some believed that this was reason not to publish the story. Others believed that it was precisely why we should publish it.”

In the end, they decided they would publish the story, but only anonymously. They decided that if this article gives just one person the courage to stand up to inappropriate behavior, then it is worth the backlash and potential harm. The editorial ends with this powerful statement, which I hope all will take to heart:

“We hope that medical educators and others will use this essay as a jumping-off point for discussions that explore the reasons why physicians sometimes behave badly and brainstorm strategies for handling these ugly situations in real time. By shining a light on this dark side of the profession, we emphasize to physicians young and old that this behavior is unacceptable—we should not only refrain from personally acting in such a manner but also call out our colleagues who do. We all need the strength to act like the anesthesiologist in this story and call our colleagues ‘assholes’ when that label is appropriate. We owe it to ourselves, to our profession, and especially to our patients.”

While we need to be careful about making sensitive information public, especially through mass media, the author of the article and the staff of the Annals of Internal Medicine do an eloquent job of handling a delicate situation with the grace, humility, and candor that necessitate discussion, change, and with any hope, healing and forgiveness.

The Hippocratic Oath and #TransHealthFail

Earlier this month, the Twittersphere erupted with a new hashtag that quickly reached trending status: #transhealthfail

Transgender people are sharing their negative experiences with health care using this hashtag. The experiences range from health care providers suggesting their patients get help elsewhere, even if their problems weren’t related to their sexuality, to blatantly making unprofessional comments about their sexual identity, even going so far as to call transgenderism “disgusting.”

These kinds of comments and experience are extremely common for transgendered people in their daily lives, and their experiences in health care are, unfortunately, not an exception to this rule. Physicians take the Hippocratic Oath, which includes a commitment to treat all people with respect and dignity. A common, modern version of this oath includes the phrase: “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.”

This phrase suggests several important things:

1. Physicians have a special responsibility in our society, which should not be taken lightly. Philosopher John Rawls believes that a “persons’ moral and/or political obligations are dependent upon a contract or agreement among them to form the society in which they live.” Under this kind of theory, physicians need to act in such a way that is befitting to a person entrusted with a position of power over vulnerable people in need of their expertise.

2. Patients, regardless of whether or not you agree with their lifestyle or decision, are a physician’s fellow human beings. This means they are due the same respect and care that one would expect to receive for his- or herself.

3. Physicians have an obligation to all people. Those sound of mind and body, the infirm; rich, poor; young, old, and everything in between. Physicians must treat all people with respect, dignity, and care, regardless of the circumstances.

Health care workers are human, and therefore will make mistakes from time to time. However, they must make a conscious effort to educate themselves when it becomes apparent that there is a need. This is one of those times.

The Personhood Problem

This week, a New York judge dismissed a case seeking to free and grant personhood to two chimpanzees being used in studies by Stoney Brook University. Manhattan Supreme Court Justice Barbara Jaffe issued a thirty-three page document outlining the reasoning behind her decision. A higher court had ruled on a similar case last year, so she was bound to follow suite.

The Nonhuman Rights Project, who sought to free these chimps, made arguments for personhood based on their powers of cognition and “their similarity to humans in DNA composition, communication, and self-awareness.”

There is more at stake with these kinds of decision than the rights of nonhuman animals, however. The kinds of arguments used to grant personhood to nonhuman animals also run the risk of questioning and potentially even removing the status of personhood from some humans. If we are to follow these kinds of criterion for personhood, we risk alienating young children, the elderly, and the disabled from having personhood.

Animal rights and pro-choice activists often have a similar list of qualifications for personhood that, either intentionally or unintentionally, exclude some people from personhood. In her famous argument against granting personhood to fetuses, Marry Anne Warren cites five necessary conditions for personhood:

1. Consciousness

2. Reasoning

3. Self-Motivated Activity

4. The Capacity to Communicate

5. Self-Awareness

If a being fails to meet any of one these criteria, Warren argues, that being is not a person. While her argument was designed to prove that a fetus is not a person, it is also strikingly similar to the arguments used by the Nonhuman Rights Project. Additionally, if this logic is followed, not only are some animals persons, but some humans are not persons, and these groups are already the most vulnerable in our society, especially the elderly and the disabled.

As much as I sympathize for animals used in research and kept in poor conditions, I have a responsibility as a Christian to “Learn to do right; seek justice. Defend the oppressed. Take up the cause of the fatherless; plead the case of the widow,” (Isaiah 1:17 ESV).

How can I address injustices toward animals without promoting logic that excludes some people from personhood? Is it possible to balance these two causes, or must one fall in favour of the other?

Is Change in Abortion Legislation on the Rise?

The New York Times published an article last week about possible new legislation regarding abortion standards in the United States.

The House of Representatives voted 242-184 to ban most abortions after 20 weeks. The current Supreme Court ruling on fetal viability is currently 22-24 weeks after fertilization. While it is likely that this particular bill will be shot down in the Senate, it is nevertheless an important step in the conversation about abortion.

Two quotes from the article most accurately depict the ongoing struggle between those in favor of and against abortion:

 

  • “‘No matter how it is shouted down, or what distortions, deceptive what-ifs, distractions, diversions, gotchas, twisting of words, changing the subject or blatant falsehoods the abortion industry hurls at this bill and its supporters,’ said Representative Trent Franks, the Arizona Republican who introduced the measure, ‘this bill is a deeply sincere effort, beginning at their sixth month of pregnancy, to protect both mothers and their pain-capable unborn babies from the atrocity of late-term abortion on demand.'”

 

  • “‘Every woman has a constitutional right to make health care choices in the manner she sees fit, and everyone in America should see this cynical attempt to seize control from women for what it is,’ Ms. DeGette and Ms. Slaughter said in a statement on Tuesday.”

 

Notice that each quote of value-laden terminology—the first focuses on the fetus’s ability to feel pain, even going so far as to call the fetus a baby. The second quote, on the other hand, focuses on women’s rights and the notion of patriarchal control and manipulation. While there is still this much difficulty in establishing language that doesn’t automatically estrange one side or the other, it is unlikely that any real change in legislation is possible.

I do, however, find it encouraging that these difficulties have not rendered the issue moot and caused it fade from view. When an issue seems as insurmountable as this one, the easy thing would be to do one’s best to ignore it, but the only way for progress to become feasible is to continue in open discourse.

The Importance of Advance Directives and Power of Attorneys

This week I had the privilege of job shadowing in the clinical ethics department at a hospital here in Illinois. In clinical ethics, it is impossible to know exactly what your days will look like in advance, since your schedule depends on the varying needs of others in your workplace. There may be several days in a row where no requests for consults come in, or you may have three come in at a time! Luckily for me, there was a steady stream of consult requests this week.

There are multiple reasons someone could request a consult: withholding or withdrawing treatment, informed consent issues, disagreement among families, etc. But this week the majority of cases had to do with decision-making. If a patient lacks decision making capacity, the health care power of attorney is asked to make decisions on the patient’s behalf. Unfortunately, most people do not have a power of attorney or advance directive, so this leaves clinicians with the duty of identifying a surrogate decision-maker, which can be difficult, especially if a decision needs to be made in an emergency.

This is why it is important to have conversations about what you would want if something were to happen. It doesn’t matter how old you are, appointing a power of attorney or making an advance directive is a wise idea. You never know when something could happen. Karen Quinlan was only 21 when she collapsed and lapsed into a persistent vegetative state. There was a huge uproar when her parents requested that she be taken off of the ventilator.

Advance directives are a general outline of a patient’s wishes if he or she is unable to make decisions for one reason or another. The cases I saw this week were not particularly groundbreaking or difficult on the academic side of things. Rather, they were difficult primarily because the family and friends were completely unprepared to make important decisions, they didn’t know what decisions they should make, or there was disagreement about what the patient would want. These cases could have been avoided or at least made a lot less difficult if the patients had an advance directive stating their wishes for treatment. Additionally, if the patients had named a power of attorney, it would eliminate or lessen conflicts about who the final decision-maker is.

Many hospitals offer counseling and will help walk you through the process of creating an advance directive and appointing a power of attorney. It is never too early to have the conversation about what you would want in case of something unexpected. And it is always possible to alter your decisions later, so there is nothing to lose.

 

Abortion and Children’s Books

This week a friend of mine posted a link on Facebook which might be the most disturbing thing I’ve ever seen on the social media site: an article regarding a children’s book about abortion. The book itself, called “Sister Apple, Sister Pig,” can be found online here.

I find it difficult to even know where to begin this post. While the book does not outright say that abortion is a good thing, it seems to promote the idea that abortion is no big deal. The child in the book is attempting to understand what it means that you had a sister who was aborted before he was born. He has questions, but ultimately decided his sister is a “happy ghost.” He treats her as an invisible friend and his parents are content to let him do so.

What is most disturbing about this book is that it is not satirical in the least and is aimed directly toward children. It is propaganda that seeks to indoctrinate children on a complex issue. While it can be argued that parenting is essentially all indoctrination and that this book is no more akin to brainwashing than the Bible, it should still give people of all walks of life pause because it is making a serious statement about the value of human life.

There are something things that are (generally) harmless to teach children, regardless of their veracity: the existence of Santa Claus or the Tooth Fairy, that all dogs go to heaven, or that yelling is a bad thing. I believe that this book, however, crosses a line because the implications of its teaching could have serious negative repercussions. What do you think? Is it dangerous or prudent to expose children to this kind of book?

 

Call to Action: Quality of Life

Earlier this month BBC News reported on Chris Graham, a 39-year-old man with early onset Alzheimer’s disease, an extremely rare gene mutation, which killed Chris’ father at 42-years-old. Graham, has a newborn son, to whom he may have passed on the gene mutation, but Graham remains hopeful, saying, “If we can put a man on the Moon then surely we can find a cure for Alzheimer’s?” This story is both heartbreaking and inspiring.

It reminds me of another tragic case of Alzheimer’s in 2012. Charles Snelling, having made a pact with his wife, who had the disease, killed his wife and then himself. Snelling’s wife, Adrienne, no longer wanted to live once the disease progressed to a point where she couldn’t live life as she had known it. In the medical community, the term “quality of life” would come to mind. Throughout the world, there is a widely held notion that life is no longer worth living at a certain point. This can be seen clearly in the recent case of Brittany Maynard, a 29-year-old with terminal cancer, who chose to end her life via physician-assisted suicide last year.

For every tragic story like this that makes it into the public eye, there are dozens more people suffering in silence, unknown to the masses. No one likes to talk about something so difficult, so utterly impossible to explain. But instead of ignoring things like Alzheimer’s and those who suffer from it, the medical community has a duty to raise awareness and promote conversation about the idea of “quality of life” decision-making.

Physician-assisted suicide is becoming more and more acceptable, now being legal in several states. It is our responsibility to challenge the status quo and fight for the idea that life is valuable, regardless of its perceived quality. We must love and honor life in all its forms, yet do it in a way that doesn’t result in vitalism.

This is an extremely difficult road to walk, but it is a road we cannot afford to ignore. What do you think are the best ways to approach this topic with sensitivity and grace while upholding the importance of the imago-dei in all humans?

Feminism and Egg Donation

Two weeks ago, I wrote about the troubling lack of informed consent for egg donation. Many women are completely unaware of the risks and side effects of the procedure. But what seems to be the bigger, underlying problem is that there is a lack of regulation for and research about egg donation.

The lack of regulation for egg donation is alarming on multiple levels. On one hand, it runs along a thin line between altruistic endeavor and sale of a human being. Additionally, it allows for the exploitation of women in need. In fact, women in third world  and developing countries are especially susceptible to this kind of exploitation. Much of egg donation has been outsourced to foreign countries where things can be done cheaper, not very different from the trend seen in modern industry. Firstthings.com calls egg harvesting, “the newest form of human trafficking.”

While Europe has responded to these ethical concerns with the “European Parliament Resolution on the Trade in Human Egg Cells”, America is notably lacking any kind of regulation at all. Despite being one of the wealthiest and most well educated countries in the world, the United States has shown a complete disregard for an issue that is an affront to its ethos. As Clark and Lahl write in their article, “Egg Donors and Human Trafficking”,

“Vulnerable young women, trusting the medical establishment with their well-being, are being heavily recruited by means of deceptive advertisements and coerced with large sums of money in relation to their social-economic status. “

How can Americans fight for feminism and equal rights when we don’t hold institutions that exploit women accountable? How can we truly progress if we don’t recognize our failures and do what it takes to correct them? We can use the hashtag #HeForShe all we want, but until we take a stand for those who are most at risk, we will not truly be a society that stands for truth, justice, and liberty for all.

Autonomy and Autism

In 2000, the United States declared that the measles virus had been eradicated. Yet, within the first week of 2015, there were approximately 121 cases reported in 17 different states. This trend is closely linked to parents choosing not to vaccinate their children.

Anti-vaxxers have many reasons for choosing not to vaccinate their children, especially the high prices of vaccines and the potential health and safety hazards for children. In 1998 Dr. Andrew Wakefield published a study claiming that childhood vaccinations may cause autism. Even though his study was discovered to be fraudulent and unethical, and his license revoked, many people still believe that there is a link between the two.

Those who are pro-vaccination claim that those without vaccinations put the rest of the population at risk, especially children who are too young to receive vaccinations themselves. Those against vaccinations claim that it is their right to choose.

Yet there is more at stake here than an outbreak of measles or a single person’s autonomy. Anti-vaxxers, often unknowingly, promote the idea that it is better to get sick and possibly die than to have autism. In a recent open-letter blog, Sarah Kurchak writes,

“No matter what other lofty ideas of toxins and vaccine-related injury anti-vaxxers try to float around in their defense, that’s really what all of this is about: we’re facing a massive public health crisis because a disturbing number of people believe that autism is worse than illness or death.”

The measles virus can be deadly. Autism can be difficult. Yet in a world that increasingly values function over everything else, we need to be careful what kind of messages we promote. Christians especially must stand for those who are already at risk or undermined in this world. As James 1:27 says, “Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world” (ESV). In the wake of another autonomy war, we must not forget those who will be caught in the crossfire. We must not forget that they are people made in God’s image, and are as worthy of love and protection as everyone else.