Should Medical Staff ‘Google’ Patients?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

 

by Brandon Hamm, Bioethics Program Alum (MSBioethics 2012)

On several occasions, a new admission or psychiatric consultation has been accompanied by patient information that was “googled” by nursing or consulting practitioners. On some occasions, the ‘googled’ information has admittedly been helpful for refining diagnosis and management. On other occasions, it has seemed unnecessary for patient care. HIPPA does not protect information publicly available on the internet, but is it ethical for medical staff to “google” their patients?

The first time that I personally ran into this issue was during a psychiatric consultation requested for suspected factitious disorder (patient attempting to deceive by producing/providing false symptoms). The patient presented as a new patient (to our geography and institution) with shortness of breath and chest pain. After an extensive workup, the medical team was puzzled that the patient’s symptoms did not match his objectively normal physiology. The clinical next-steps under consideration were invasive. The medical team was not yet able to obtain previous records from outside hospitals and the patient declined consent for collateral information. So the team “googled” the patient. We found a forum accusing the patient of inducing arrhythmias for medical attention and regularly committing social/financial frauds. Later, records were later obtained from an outside hospital that revealed a history of hospital-hopping and recurrent malingering /factitious behavior resulting in medically unnecessary procedures.

In this case, the “googled” information decelerated the invasive (significant risks) trajectory of the patient’s care. This also facilitated better management of the building conflict between the patient and the frustrated medical team. In this case, “googling” produced beneficent, or at least non-maleficent results. And these would be the typical justifications for “googling” a patient, but it is much harder to claim that it respected patient autonomy. Perhaps more importantly, I worry about what impact “googling” has on trust in the patient-physician relationship.

Despite public attention from Haider Warraich’s New York Times article “When Doctors ‘Google’ Their Patients”, the ethics of “googling” patients has received scant attention in bioethics literature. What consensus there is deems as unethical “googling” for non-clinical purposes. When “googling” is used as a clinical tool, there remains some disagreement. Volpe et al (2013) argue that “googling” patients is bad practice because it encourages providers to withdraw from patient relationships, can damage trust, and invades patient privacy. George et al (2013) point out searching is legal and not considered a breach of privacy for employers screening applicants. Consequently, this group proposes that, at times, it is irresponsible not to “google” patients when traditional information sources (patient, patient medical record, previous providers) are exhausted or unavailable. Various commenters (Krischner et al, 2011) point out, however, that information obtained on the internet is of variable accuracy, and using it will consistently break trust and rapport when disclosed to the patient.

“Googling” for patient information is somewhat different in psychiatry than it may be in other areas of medical practice. A patient’s social circumstances, criminal history, attunement with reality, and even provision of truthful information are clinically pertinent for psychiatrists to perform accurate diagnosis and management. Since this information (with variable accuracy) may be readily available on the internet, temptation to “google” patients may be strongest for psychiatrists. A patient’s posted suicidal thoughts or homicidal threats are clearly of clinical significance. And these may not be available in the normal course of care. For example, patients with acute paranoid psychosis are often very protective of even the most basic personal information. Moreover, concerns about compromising patient trust may be blunted in psychiatry—psychiatrists are accustomed to damaging rapport when admitting patients involuntarily who are a significant danger to self or others.

Along with others, I believe that practitioners should never “google” for clinically irrelevant patient information. While it may be acceptable to “google” new colleagues and new friends, the relationship with a patient should be understood differently. “

Googling” for clinically relevant information should only be undertaken after a clear articulation of the reasons for “googling” and the necessity of the information that is being sought. Clinical information should ideally be obtained from the patient, medical records, previous providers, and patient- permitted others. In cases when these resources are exhausted /unobtainable, and significant patient benefit/harm is at stake, practitioners should only look to information obtained from the internet as a last resort. Some guidelines for psychiatrists were proposed by Clinton et al (2010). Specifically, these guidelines encourage the psychiatrist to consider his or her clinical intention, the potential for trust impairment, possibly obtaining consent for the search, and the impact of revealing obtained information to the patient or in documentation.

What we don’t have here is a clear algorithm for determining when it’s okay to “google” a patient and when it’s not. And so I wonder what you’re experiences have been and when you think it’s appropriate.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

The Carter v. Canada Conundrum: Next Steps for Implementing Physician Aid-in-Dying in Canada

by Sally Bean and Maxwell Smith (Bioethics Program Alum, 2010)

We applaud the February 6, 2015 Supreme Court of Canada’s (SCC) unanimous ruling in Carter v. Canada (Attorney General), 2015 SCC 5. The Court found the criminal prohibition of assisted death to be in violation of section 7 of the Canadian Charter of Rights and Freedoms, which guarantees the right to life, liberty and security of the person. The ruling has been suspended for 12 months to enable time for a Parliamentary response. In the wake of this landmark ruling, we identify and briefly discuss three issues that require serious attention prior to the implementation of Physician Aid-in-Dying (PAD) in Canada.

The legal prohibition on assisted dying in Canada dates back 22 years to the SCC’s 1993 ruling in Rodriguez v. British Columbia (Attorney General). In a 5-4 decision, the majority of the Court held that, although prohibiting aiding and abetting a person in committing suicide (section 241(b) of the Criminal Code) did deprive a patient (Rodriguez) of her security of person under section 7 of the Canadian Charter of Rights and Freedoms, this violation was justifiable because the infringement was in accordance with “the principles of fundamental justice.”

Reflecting a changing legal and moral landscape, the Carter v. Canada SCC ruling again addressed Criminal Code section 241(b), in addition to section 14 (prohibiting persons from consenting to death being inflicted on them). Specifically, the ruling held that these sections of the Criminal Code are void if they prohibit PAD for a competent adult who “(1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease, or disability) that causes enduring physical or psychological suffering that is intolerable to the individual in the circumstances of his or her condition.”

Competent Adults

The SCC Carter ruling will now require subsequent legislation or regulations to delineate who counts as a competent adult. Like most jurisdictions that permit PAD, the ruling limited it to competent adults. Importantly, this may preclude patients suffering from advanced dementia or other diseases that render a person incapable of making their own treatment decisions. The legal standing of an advance directive authorizing PAD, made while an individual possesses decision-making capacity, remains to be seen and warrants further consideration.

Some Canadian jurisdictions, such as Ontario, do not have a legal age of consent for healthcare treatment decisions. Rather, under Ontario’s Health Care Consent Act, decision-making capacity is based on an individual’s ability to both understand the relevant information and appreciate the reasonably foreseeable consequences of the decision. Therefore, in jurisdictions without an age of consent for treatment, the Carter ruling could potentially require clarification if a determination of being an “adult” is based on the legal age of majority as determined by each province or territory (and is either 18 or 19 years of age across Canada), or if it is based on a capacity to make treatment decisions.

PAD Application beyond Terminally Ill Patients

The SCC left open the possibility that PAD should not be confined only to the terminally ill but also “persons with a grievous and irremediable medical condition that causes enduring physical or psychological suffering.” As Sean Philpott-Jones notes, “[b]y including references to disability and psychological suffering, the Court potentially opened the doors not only to those with terminal illnesses, but also those with chronic but not life threatening illness or disabilities, as well as those suffering from mental illness.” Further thought will have to be given to how we determine that a person’s condition is in fact “grievous and irremediable.” For example, will someone with treatment resistant depression be required to have attempted all reasonable treatment options, regardless of associated side effects?

Physician Conscientious Objection

The ruling also broaches the issue of which physicians will provide PAD. Just one month before the ruling, a member survey by the Canadian Society of Palliative Care Physicians found that 74% of its members reported they would not provide PAD. Similarly, a member survey conducted by the Canadian Medical Association indicated that more than one-quarter would be willing to provide PAD. Jurisdictions with PAD legislation, such as Oregon’s Death with Dignity Act, recognize that physicians have the ability to conscientiously object to participating in PAD. As a harbinger to the Carter ruling, in August 2014, the Canadian Medical Association softened its stance on PAD and in a released statement noted that the CMA “supports the right of all physicians, within the bounds of existing legislation, to follow their conscience when deciding to provide medical aid in dying.” Before PAD is implemented in Canada the issue of who will provide assistance in dying must be addressed at the very least to avoid inequities in access.

Now that the ruling has been handed down, the more difficult task of defining the legal and ethical parameters of who can consent to PAD and what obligations physicians have to honor such requests must begin.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

V-Ticket to Ride

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

I haven’t been to Disneyland since my senior year in high school, and I’ve actually never visited one of the Disney World resorts. Frankly, I never really cared for the noise, the crowds and the artificiality of the Disney parks. The fact that one of these amusement parks is now the center of an infectious disease outbreak makes my aversion even more intense.

Public health officials in California recently confirmed that an outbreak of measles in that state has been linked to the Disneyland theme park in Anaheim. Over 90 new cases of measles have been reported in California and seven neighboring states during the past two weeks, with over 50 of those cases originating in the Magic Kingdom. Most of those cases occurred among unvaccinated kids.

To put this outbreak into context, consider that in 2000 the US Centers for Disease Control and Prevention (CDC) declared that measles had been eliminated from the United States due to vaccination programs and a strong system for detecting, reporting and responding to outbreaks. Only 37 confirmed cases of measles were reported that year, all of which were imported from other countries.

What a difference 15 years can make. In 2014, the United States experienced a record number of measles cases. 644 cases of measles were reported to the CDC, more than the total number of cases in the previous four years combined. If this year’s Disney outbreak is any predicator, we are likely to surpass the 2014 record.

The disease itself is still largely imported from overseas, but it spreads like wildfire among unvaccinated Americans. This is because measles is one of the most infectious diseases known to man. On average, a person with measles spreads it to 18 other people. By contrast, a person with Ebola (the deadly disease that caused widespread panic last year) is only likely to transmit that virus to one or two others, and only in places that lack a robust public health system. An outbreak of Ebola in the US is highly unlikely, whereas measles outbreaks will probably become commonplace.

The anti-vaccination movement is solely to blame for the re-emergence of measles as a public health threat. The easiest way to prevent the spread of measles is vaccination. If 95% of the people in a community are vaccinated against measles, outbreaks cannot occur. Unfortunately, rates of vaccination have fallen to their lowest levels since the start of widespread measles immunization programs in 1963. For example, over 40% of kindergarteners in Orange County, home to Disneyland and epicenter of the current outbreak, are not vaccinated against measles.

Those opposed to vaccination, including such public health luminaries as disgraced British researcher Andrew Wakefield and former Playboy Playmate Jenny McCarthy, have successfully convinced a large swath of the American public that vaccines are dangerous. Despite scientific evidence to the contrary, claims have been made that vaccines cause autism, cancer, asthma, allergies, and a host of other acute and chronic ailments. These so-called “anti-vax” claims have been largely accepted by a gullible populace. According to a recent survey, barely 51 percent of Americans believe that vaccines are safe and effective. About the same number of people also believe in astrology, creationism and ghosts.

Since the Disneyland outbreak began, a number of prominent anti-vaxxers have also argued publicly (including on the CBS Evening News) that measles is not a disease to be feared. Nothing could be further from the truth. Measles is a dangerous and deadly illness. Before the first effective vaccine was developed, approximately 4 million Americans contracted measles each year. Of those, 3 in 10 developed complications like pneumonia. Nearly 50,000 people were hospitalized, 1,000 were permanently disabled due to measles encephalitis, and 500 died.

When confronted with the lack of compelling data to support their claims, anti-vaccination activists often fall back on the most American of arguments: individual freedom and personal liberty. Specifically, many anti-vaxxers believe that the government cannot tell them what they should or should not put into their (or their child’s) body. But this position has limits, particularly when individual actions jeopardize the lives of others.

That is exactly the case here. When someone refuses to vaccinate themself or their kids, they put others at risk, including children who are too young to be vaccinated or elderly whose resistance to measles and other preventable diseases has waned.

It’s time for clinicians, public officials, and politicians to take a stand on vaccination, and take a stand against the claim that personal liberty trumps public safety. Pediatricians and other physicians should refuse to accept new patients who chose not to immunize themselves or their children. School officials should no longer allow unvaccinated children to attend public schools, except in rare cases where vaccination is contraindicated medically. Finally, local, state and national politicians should no longer make it easy for parents to obtain philosophical or “personal belief” exemptions from vaccination requirements and other public health statutes.

If you don’t like vaccines and refuse to get immunized, that is your right. But you shouldn’t expect to line up for Space Mountain or the Pirates of the Caribbean with the rest of us.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 29, 2015, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

It’s the Little Things That Matter

by Courtney Jarboe, Bioethics Program Student

“It’s not good news.“

In a small exam room, we heard these words as my sister’s tears began to fall. No one wants to hear that you have breast cancer. Beyond the discussions of treatment options, however, there are a number of issues that clinicians need to consider. The following are recommendations based on my personal experience with my sister’s diagnosis.

1. A Folder

At the test result meeting, my sister received several medical record documents, along with various resources, pamphlets, journals, and business cards. However, there was no folder to house all of this. As we approached the close of the appointment, juggling the paperwork I ended up having to ask the physician assistant for a folder. Why is this a problem? First, these are important documents. The documents should be kept organized and together in one place. Keeping things together was not necessarily on the top of my sister’s list. By simply providing a folder, the clinicians would decrease the likelihood of her losing important information.

More important, most of the pamphlets and resources had ‘Breast Cancer this… Breast Cancer that…” on the covers. Often this was in big, bold headers.  What if she isn’t ready to brand herself in pink moments after receiving such devastating news? Does she want everyone in the waiting room to know her diagnosis as she walks out of the clinic? Does she want have her children come across these items accidentally before she is ready to share? By keeping these items in a folder, this gave my sister at least some degree of privacy about her results and diagnosis.

2. Appointments and referrals

 In my sister’s situation, she was told she that may want to meet with an oncologist, who was resident at the hospital. She was told that it would be easy to set the appointment, but to do this my sister would need to go back to the registration desk. Easy, right? Not necessarily. For a woman who just received such devastating news, setting up something as simple as an appointment may not be all that easy. Her schedule was the last thing on her mind, let alone how she was going to ‘fit’ cancer into it.

It wasn’t as easy as the clinician claimed.  My sister went to the registration desk and the staff member was apparently new. After much back and forth, my sister finally said (loudly, for everyone to hear) I have cancer.

Rather than send the newly diagnosed cancer patient up front to schedule these appointments, process these transactions in the exam room out of the public eye (and certainly not with a new staff member). Even though physician assistant or clinical might not have access to the scheduling system, couldn’t they quietly work that out with the registration staff and then circle back to the patient? During my sister’s result meeting the physician’s assistant stepped out of the room while the surgeon discussed her options for surgical procedures. During that time, they could have worked out the other details for the next appointment. Perhaps they could have gotten a list three of available times from the registration desk and circled back after the surgeon’s conversation.

3. Bras

After surgery my sister was in a predicament. One would think that it would be common sense to say hey, after surgery, your typical bra isn’t going to be useful or practical. However, she only received the usual wound care information sheet, not information about which bras are best following a lumpectomy. Give women a heads up. There are more important things to spend energy on than trying to find a bra.

Perhaps these recommendations are already in place in other hospitals and clinics, but my sister’s experience wasn’t as smooth as it could have been. Attention to the little things could go a long way to alleviate some of the unnecessary burdens that in my sister faced. More so, a woman’s trust and confidence in the healthcare community can be found even in the little things.

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

Striking the Balance Between Population Guidelines and Patient Primacy

by Susan Mathews, Bioethics Program Alumna (2014)

Breast cancer is the second leading cause of cancer death among North American women. Although routine mammography decreases the risk of death by about 15 percent, research on the effectiveness of wide-scale screening programs shows that 2,500 people would need to be screened to prevent one cancer death among women ages 40-49. Given this, the US Preventive Services Task Force (USPSTF) updated its population guidelines in 2009 to advise against routine screening mammography for women under 50.

These new recommendations were met with controversy and confusion, with many questioned the ability of “experts” to weigh potential benefits and harms of screening for individuals.

But how should population data like this, along with other epidemiologic, social, psychological and economic factors, be considered in medical decision-making?

To read more, click here.

[This post is a summary of an article published on Life Matters Media on November 25, 2014. The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

When Doctors Disagree: Parental Rights and Disputed Pediatric Diagnoses

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

What happens when doctors disagree on a pediatric diagnosis? What are the parents’ rights in a diagnosis dispute? Do they have any?

Many readers will be familiar with the story of Justina Pelletier, a 15 year old Connecticut girl diagnosed with Mitochondrial Disease by Dr. Mark Korson at Tuft’s Medical Center . In February of 2013 Justina developed the flu, Dr. Korson suggested that the family take Justina to Boston Children’s Hospital (BCH) to see her gastroenterologist who had recently moved to BCH.

When the family arrived at BCH they were told they would not be allowed to see the gastroenterologist, the staff at BCH quickly changed Justina’s diagnosis from Mitochondrial Disease to Somatoform Disorder, a psychological condition that manifests in physical symptoms. They stopped all of her medications and moved her to the psychiatric ward of the hospital. When the parents objected and said they were going to return their daughter to her doctors at Tufts the hospital made allegations of medical child abuse and the Massachusetts Department of Children and Families (DCF) took temporary custody of Justina. The parents have been fighting to regain custody ever since.

The theme of the many, many court dates has been postponement, but a decision was finally made last week. Judge Johnston granted “permanent” custody to DCF. This ruling cannot be reviewed by the court for 6 months, the judge backdated the decision to December, so the family’s next court date is May 25^th, 2014.

In January, Justina was moved to a non-medical psychiatric facility. The average stay at this facility is 2 weeks or less, she has now been there over 2 months. Her family feels that this is a dangerous environment for Justina. According to her father, Lou Pelletier, before developing the flu last year his daughter was a typical active teenager, she handled her chronic illness well and enjoyed activities such as figure skating. By the time she was moved to this non-medical facility in January 2014, she was confined to a wheelchair barely able to walk.

The family’s position is that Boston Children’s Hospital and Massachusetts DCF have kidnapped their daughter and are neglecting her medical needs to a point that her life is in imminent danger.

Lou Pelletier has been on a media campaign to raise awareness of his daughter’s condition and situation. The family’s last big media appearance was on the Dr. Phil show about two weeks ago. The episode was well done and featured opinions from many experts on custody battles. The overarching theme was that any custody case involving the state should focus on creating a safe environment at home so the child could return to the family. This is done through investigation of the home and family life, counseling, education, etc. basically whatever is necessary to reunite the child with his/her family. According to the Pelletier family no investigation has been done and they do not feel that Massachusetts DCF has any intention of working to return custody of their daughter.

The trouble with this story is that we only have the Pelletier family’s side, DCF has remained extremely tight lipped, making very few statements regarding the case, none that have been particularly informative or helpful. From all appearances the family is calm, together, medically literate, and rational. I recognize that their side of the story is certainly biased and we must keep that in mind, however with the silence from DCF, lack of criminal charges toward the parents, and drastic difference in this girl through photos from this year and last, the family’s story appears to be credible.

A few weeks ago Judge Johnston ruled that Justina’s medical care be transferred from Boston’s Children’s Hospital back to Tufts. This was considered a win for Justina’s family, and the parent’s called to help facilitate Justina’s appointment with Dr. Korson. Massachusetts DCF refused to take Justina to Tufts prior to this most recent decision, it remains to be seen what they will do now that they have been granted custody.

One of the things I fail to understand in this case is how BCH could override the diagnosis from Tufts and because they make a new diagnosis have grounds to remove this child from the custody of her parents. What are a parent’s rights in healthcare situations? Do they have the right to decide: who treats their child, which doctors to trust, or whether to seek a second opinion?

A key player in the new diagnosis of Somatoform Disorder was Simona Bujoreanu, PhD. Somatoform Disorder takes a very long time to diagnose, before a diagnosis can be confirmed the physician must rule out any possible medical cause. Physicians at Boston Children’s Hospital allegedly diagnosed Justina with Somatoform disorder in just 12 hours.

I think it is important to focus on Dr. Bujoreanu because of an article she wrote a few years ago. The article is titled: “Approach to Psychosomatic Illness in Adolescents.” Dr. Bujoreanu claims in this article that “20-50% of all patients complaining of physical symptoms can be categorized as having medically unexplained symptoms.” As the article goes on she seems to claim that psychosomatic diagnoses are a catch-all for these patients with symptoms that cannot be immediately medically explained. She makes broad strokes about what can be considered psychosomatic and does not focus on how time consuming a diagnosis like this should be. She talked about how families may react badly to a psychosomatic diagnosis, but did not stress how careful a psychologist should be in making the diagnosis.

In Justina’s case her physical symptoms had been explained by a diagnosis of Mitochondrial Disorder, the doctors at Boston Children’s Hospital simply rejected this diagnosis. I think doctors need to be extremely careful when countering the diagnosis of another physician and if the new diagnosis is psychosomatic even more time and evidence will be needed.

The decision of the judge this week was very disappointing. The family has been investigated by Connecticut Department of Children and Families and nothing was found. Connecticut Department of Children and Families has repeatedly turned down a transfer of Justina to their custody, presumably because they have previously cleared this family. I also feel very strongly that before a child is placed in “permanent” foster care against the express wishes of the family, some sort of criminal charges should need to be filed against the parents. I am frankly appalled that something like this could happen in America.

Parents should be allowed to disagree with a diagnosis and to have their child treated by the medical professional of their choice. If the child is in danger of abuse or neglect by a family member criminal charges should be filed along with the request for custody by the hospital or state. I am a very strong advocate for parental rights, and believe that excepting extreme cases custody of and decisions for children should remain with the parents. Parents need to have defined rights in medical situations, perhaps this case can motivate us to more plainly secure parental rights when a child is ill. I have said it before, but will stress it again, I am shocked and saddened that removal of a child from her family like this does not have to be associated with criminal charges against the parents.

I have so much to say about this case and I am sure I have not typed my last on this story. I was glad to hear that the family plans to continue the fight at the appellate court level. I will be following this closely as it develops, I hope you will as well. More to come …

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on March 31, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Doctor Knows Best?

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

At one time or another we have all said something we regret. For Christina Schumacher that “something” happened last summer. Christina was in the midst of separating from her husband, claiming reasons of domestic abuse. At the time, she told her sister that if anything ever happened to her children she would kill herself. Christina and her husband had a 17 year old daughter and a 14 year old son.

On December 18th Christina’s estranged husband and their 14 year old son were found dead in an apartment. Dad had strangled his son and then hung himself.

The next day Christina went to her regularly scheduled appointment with her psychologist. Her doctor had decided, before she arrived, that she should check herself into the hospital psych ward and had the police ready and waiting in case Christina disagreed.

She didn’t agree, she wanted to be with her 17 year old daughter through their grief. This however, was not an option and she was taken to Fletcher Allen Health Care where she remained for the next 5½ weeks.

Christina was released, by order of a judge, about a week ago. The judge stated that he saw no legal reason she should have been committed or should remain in the hospital and ordered her immediate release.

Christina’s story raises some questions about the doctor/patient relationship in a mental health setting. What rights do psych patients have? How can we best assess their capability to make decisions? What is the line where involuntary commitment becomes necessary?

I understand the concern the psychologist must have felt, and how difficult it must be to determine if a patient needs to be committed. What if Christina had been unstable and harmed herself or her daughter? I am sure the doctor felt there was enough information from their past meetings to warrant the decision of commitment.

However, we never really know how we will react to tragedy. We often say things like: “I could NEVER do that.” Or “I would flip out if that were me.” I am no stranger to this kind of thinking, before my dad ended up in the hospital last fall my internal monologue was: “I wouldn’t be calm talking about taking someone off of a ventilator…especially someone I loved…I would be a puddle…there wouldn’t be enough tissue in the world…” Yet, there I was, in the exact situation I most feared, calm, collected, and making the tough decisions with tissue to spare. 

What we say we will do and what we do are often worlds apart. Christina’s psychologist would have been wise to keep this in mind during her appointment that December day.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on February 2, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

My L.A. Times Op-Ed: In Defense of the Evidence-Based Nudge

by Michelle Meyer, Bioethics Program Faculty

The op-ed, which appeared a couple of days ago, is online here. It’s co-authored with Christopher Chabris (who happens to be my husband). Here—where I’m writing only for myself—I thought I’d say a bit about what motivated us and elaborate on a few points whose force may have been blunted by the process of condensing our thougts into our allottted 1,000 words.

The news hook for the article was an August memo leaked to Fox News in which the Obama administration announced that it is looking to hire behavioral scientists to help shape policy. Notwithstanding that the explicit model for this initiative is the U.K.’s “Behavioral Insights Team,” formed in 2010 by Conservative Prime Minister David Cameron, in the U.S., some on the right went completely off the rails about the Obama announcement.

A typical reaction was from Fox News’s Monica Crowley, who described the initiative as “really frightening,” “insane,” “outrageous,” “unconstitutional,” “an Orwellian horror show”—and all of the aforementioned mostly because, so far as I can tell, she believes that nudges constitute a form of “psychological warfare” akin to “what our military does to our enemies.” There are certainly legitimate criticisms of nudges to be made by both the right and the left, but that they are a form of Communist mind control is not among them. (For starters, even if nudges did rely on something like subliminal messages, those messages have been shown to have no effect on consumer behavior, much to the chagrin of marketers.)

The impetus for our piece, then, was to disabuse the Crowleys of the world (or at least that portion of them who are open to persuasion on this matter) of that notion, and then to offer some affirmative reasons why conservatives and libertarians should embrace the nudge (its preservation of all options in the choice set; its ability to incentivize personal responsibility; its efficiency), especially relative to its often perfectly viable alternative: the shove. (To that end, the piece was originally intended for a periodical with a right-of-center audience but wound up in the L.A. Times, where some of it may admittedly amount to preaching to the choir.)

In making our case…

…we tried to avoid overselling nudges, as some others who have defended Obama’s nudge unit have done, including the administration itself. The memo recruiting behavioral scientists says, for instance, that its nudges are designed to “help people to achieve their goals.” But not everything that has been characterized (perhaps wrongly) as a “nudge” aims primarily at helping the nudgee act in her own best interests, as seen by the nudgee’s own—or even the nudger’s—lights. Our example, touted as a nudge by David Brooks, is an opt-out default rule for organ donation. I myself am in favor of organ donation opt-out defaults, but falsely characterizing such defaults as libertarian paternalism can only play into the right’s paranoia about nudges and thereby undermine the whole effort. Better simply to acknowledge that arranging the choice architecture in this way promotes the state’s values, while noting that elections have consequences, and in urging its citizens to act in ways the state deems good, nudges should be preferable to shoves.

Even where a nudge does aim to make it easier for nudgees to act in ways that reflect the nudgee’s own good, as she herself sees it, no nudge policy will in fact have that effect on everyone, since we all have different visions of the good and find ourselves in different circumstances. As I’ve argued elsewhere (in the context of risk-benefit analysis by IRBs), central planners (1) cannot possibly know every individual citizen’s preferences and, in any event, (2) cannot enact a single policy that caters to those preferences, since human beings happily tend to be rather diverse. So it’s disingenuous to pitch nudges as helping everyone achieve their goals; they can’t, and they don’t. But when a central planner has to make some decision—someone, whether it’s the government or your boss, has to set the default for retirement savings plans on behalf of many diverse people, not all of whom, it must be conceded, decline to save out of irrationality—nudges (1) preserve the idiosyncratic citizen’s ability to make a different choice and (2) sensibly set the default to what the government has good reason to believe will serve most people.

We also try to highlight some advantages of nudges that have been given short shrift. For instance, Crowley is apparently alarmed by the fact that the government will be “experimenting” on citizens. (For her, as for so many others, the word “experimentation” seems to conjure images of vivisection, Frankenstein’s monster, and the like.) In our piece, we argue, to the contrary, that regulation is most appropriate only if it has first been tested on citizens in randomized, controlled trials (RCTs). Regulations have costs, and we ought to have some evidence that they will yield benefits that justify those costs. This is true even of nudges: what for the individual citizen is a gentle nudge will often be a very big, very expensive shove for business.

But on this score, nudges are at a considerable advantage over other forms of regulation. One time-honored way of the government incentivizing citizens to do what they want, for instance, is to amend the tax code. Before implementing them across the nation, could the government test proposed changes to the tax code to ensure that they have the intended effects on behavior? Maybe. But dealing with multiple versions of the tax code would be administratively difficult and would likely raise several legal (e.g., equal protection) objections. Because nudges by definition neither mandate nor forbid any choice, nor do they significantly alter the economic incentives to choose among options, they can more easily, ethically, and legally be subject to randomized experiments to test their efficacy. The Obama administration suggests that its Nudge Unit will only implement empirically tested nudges. But, as we discuss, the costly Obamacare rule requiring chain restaurants to display calories counts was not tested in advance, and evidence for its efficacy in reducing caloric intake is inconclusive, at best.

Our take-away, then, is that nudges have the potential to serve ends that people across the ideological spectrum should embrace. At the same time, we critique the administration for a somewhat wavering fidelity to best practices in imposing new regulations. In short, we say that nudges are good, especially compared to the alternatives, but only if they’re done right.

[This blog posting originally appeared on The Faculty Lounge. The contents of this blog are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Hunger Games: Guantanamo Bay

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Guantanamo Bay is back in the news.  It seems that several of the inmates are currently participating in a hunger strike that began in February of this year.  It was started to draw attention to the camp and make a political statement that it should be closed as President Obama promised it would be during his 2008 campaign.

The hunger strike started with just a few prisoners and has expanded to over 100 of the 166 detainees.  About 45 of them have lost a significant amount of weight and require forced feeding to keep them alive.

So, what does “forced feeding” entail exactly?  Twice each day the prisoner is restrained at the hands, feet, and head, in a chair, a feeding tube is inserted into the stomach though the nose, and a protein shake (Ensure, or the like) fed to the prisoner through this tube.  The process can take up to 2 hours per person, per feeding.  With 45 people on feedings, each twice a day, this is no small operation for the Guantanamo Bay medical staff.

Some activist groups consider the forced feedings to be torture.  To back up their claim they look to the world of medical ethics.  The World Medical Association and American Medical Association, among other organizations, accept that patients have the right to refuse life sustaining treatment, including tube feedings.  This has been established through cases like that of Terri Schiavo, the Florida woman in a vegetative state whose story made headline news in the early 2000s.

Reprieve, a human rights group, recently released a video of Hip-hop artist/actor, Yasiin Bey (also known as Mos Def) undergoing the same forced feeding procedure that is happening in Guantanamo Bay.  In the video, Mr. Bey is unable to complete the procedure and it is stopped before the tube is even completely lowered into his stomach.  For much of the 4 minute video he is seen screaming and crying in an orange jumpsuit while being restrained in a chair, with people in white lab coats attempting to place the tube in his nose.  He continues to scream and struggle, until an off screen voice tells them to stop the procedure.

The video was made to illustrate the painful nature of the forced feeding procedure; the group considers the procedure a form of torture and has openly called for the feedings to be stopped.  The tag on the Reprieve website is, “Reprieve delivers justice and saves lives, from death row to Guantanamo Bay.”   Given their current argument about the forced feedings I find this tag line to be ironic.

It seems Reprieve has missed a major memo, so let me break it down here:

If we stop the forced feedings and the prisoners still refuse nourishment, they WILL die!

So, the question becomes: can you live with that?

If you will please look to the left of our military you will see a rock and to the right a hard place…now choose.

The military defends their decision to pursue the forced feedings saying they don’t allow suicide by any other means, so they choose not to allow it in the form of starvation.  I understand their position and that they are trying to prevent the loss of life.

My personal feelings however, are against the forced feedings.  Not because they are torturous or painful, though I’m sure the procedure is less than pleasant.  I am against them because I think our military and our country are being manipulated by the prisoners at Guantanamo Bay.  They stop eating and what has been the American reaction?

• The New York Times printed an editorial about the horrors of Guantanamo Bay in a prisoner’s own words.
• We discuss how the forced feedings could interfere with Ramadan, therefore violating the prisoners’ right to freedom of religion.  (Side note: The feedings are currently being performed at night to respect the religious traditions of the prisoners.)
• Human rights activist groups, like Reprieve, take up the cause and renew the fight for the camp to be closed.

I don’t think the men of Guantanamo Bay actually want to die the miserable death of starvation, but rather they have found a captive audience for this new game of theirs.  If the feedings continue the hunger strike will never end.  The only way I can see to convince the men to start eating again is to let them see their decisions play out in some of their comrades.

I understand that my opinion is probably not a popular one, I don’t even like it myself to be honest, but what choice do we have?  Many will certainly say, “Close Guantanamo Bay…there is your choice.”  To them I say:

Whether you choose to believe it or not, there is a reason these men are being held in Guantanamo Bay and a reason that our current President, like the last one, has not closed the facility.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on July 15, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Unintended Consequences: Obstruction of Patient Choice

by Sue Dessayer Porter, Bioethics Program Alumna (MSBioethics 2011)

Oregon was the first state to legalize aid-in-dying. Since 1998 it has implemented “Death With Dignity (DWD),” which allows eligible terminally ill people to end their lives peacefully with a legal prescription.

Contrary to fears asserted by the opposition, there has been neither a slippery slope, nor granny panels, nor hordes of people clamoring to Oregon in order to die. With fifteen years experience, DWD has demonstrated successfully that cautious adherence to the law provides safe choice and dignity at the end-of-life.

But in spite of this flawless record, there is increasing obstruction against choosing this autonomous and personal end-of-life option. The problem? As Catholic hospitals merge with financially imperiled medical centers or acquire independent medical practices, they are instituting religious policies which prohibit doctors from any participation with DWD. This restriction applies to all doctors, not only Catholics. Therefore, a Jewish physician treating a Protestant patient is dictated by Catholic doctrine. – Doctors are not even allowed to have a conversation with their patients about DWD, so the “duty to refer” to another physician is not even a consideration.

An unintended consequence? Section 127.885 (5) (a) of Oregon’s DWD Act allows a health care provider to prohibit another health care provider from participating in DWD (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx). This was a compromise incorporated into the law in order to appease the opposition and move the law forward. But in retrospect, lawmakers in the early 1990’s could not have predicted the merger activity by Catholic hospitals twenty years into the future. The state of medical economics has changed so dramatically in the last two decades, that private practitioners cannot sustain on their own; for survival, they are bought by medical centers. Therefore, doctors who previously supported patients through DWD can no longer do so. Washington state voted DWD into law in 2008 and is facing the same obstacles.

Catholic health care leaders claim to be in a savior mode, in that if it were not for them, many communities would be bereft of medical care. They state that they are “driven by a mission to serve the underserved” and profess a commitment to help every human being (http://www.nytimes.com/2013/05/13/us/hospital-mergers-in-northwest-).” This is a guise of altruism, as patients requiring end-of-life choices are being denied lawful alternatives. This pervasive barrier to aid-in-dying is affecting ever-increasing numbers of qualified terminally ill patients who try to avail themselves of DWD. Because their state voted DWD into law, residents of Oregon and Washington reasonably assume that their doctor-patient relationship entitles them access to aid-in-dying. Although this is a credible expectation, it is proving to be false too frequently.

Doctors are individually protected by conscience clauses to deny services that are in conflict with their personal beliefs. Alternatively, as long as freedom of choice is protected for doctors who do not want to participate in specific procedures, the same principle of choice should be guaranteed for doctors who do choose to offer what they consider responsible, ethical and dutiful medical care. And logically, a patient should be assured their right to self-determination.

Medical beneficence should be defined by the doctor and patient, not dictated by the religious views of a separate entity which controls with economic power.

[The contents of this blog are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]