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.]

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Can Safety, Freedom And Rationing Co-Exist For The Elderly?

by Susan Mathews, Bioethics Program Alumna (2014)

In a recent op-ed article, Dr. Ezekiel Emanuel, former Special Advisor for Health Policy to the Obama Administration, stated that he did not want to live beyond the age of 75. At that point, his productive life would be over and he become a burden rather than a benefit to his family, his friends and his country.

Whether or not you agree with Dr. Emanuel’s provocative statement, he raised an important point in his article: in order to contain health care costs, Americans will have to make difficult decisions about rationing of medical care. This is particularly true of end-of-life care for the elderly, which is a significant contributor to medical spending in the United States.

The problem will only become more acute in the coming years. The 65 and over population is projected to grow from 13 percent of the population today to 20 percent by the year 2030. In that same period, the population of the “old-old” (85+) will quadruple as the large baby boomer cohort reaches these advanced ages.

So as explicit rationing of medical care becomes a reality, how can costs be managed while still respecting the rights and safety of the elderly?

To read more, click here.

[This post is a summary of an article published on Life Matters Media on January 16, 2015. 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.]

 

The Case of Cassandra C: Finding Clarity and Responsibility as a Mom and a Bioethicist

by Amy Bloom, Bioethics Program faculty

I have been reading the latest news regarding Cassandra C., the teen with Hodgkin’s lymphoma who refused treatment but was forced into receiving it by a Connecticut Supreme Court ruling. As a mother and a bioethicist, these are the times when reconciling my personal opinions with my professional experience can be most challenging. Many of my “mom” friends were shocked and horrified by the image of a young woman being restrained to a bed, forced to undergo treatment. They had visions of a screaming pained girl, a mother helpless to save her child, and “big brother” dispensing poison to an innocent girl whirled through our collective mind.

From an ethics standpoint, it is generally wrong to force medical treatment on anyone, particularly when there are cultural and religious factors to be taken into consideration.  I am reminded of cases involving Christian Scientists who believe that any “traditional” medical intervention is contrary to their cultural and religious views.  Oftentimes, in cases involving a seriously ill child, parental rights are legally overruled and children are “forced” into treatment. Sometimes, the state may assume its parens patriae rights and substitute its own control over children when the natural parents appear unable or unwilling to meet their responsibilities, or when the child poses a problem for the community. Further still, the state can mandate treatment in order to assure proper care, as established by Jacobson v. Massachusetts in which the US Supreme Court upheld compulsory vaccination laws.

So, on the one hand we argue it is unethical to force treatment. On the other hand, we do sometimes make the decision to mandate care, particularly when children are involved. The question becomes: how does one manage the rights of children and of parents, while also maintaining the responsibility of the state to protect children?

First, we must consider what is in the “best interest” of the patient while still considering individual choice. Such cases are clearer when an outcome like death is imminent.  The case of the 29-year-old young woman with terminal brain cancer who refused treatment and moved to Oregon to end her life is a good example.  Most ethicists supported her decision, although there were some who disagreed with “ending one’s life” so directly.  In her case, this was a quality of life issue. Treatment provided no long-term benefit. It only prolonged her pain and suffering while delaying the inevitable. From a legal perspective, she was also an adult and capable of making her own decisions.

Cassandra’s case is different. Chemotherapy has a very good chance (~85%) of curing her. I personally struggle to understand how, when faced with these scientific facts, she chose to refuse care. I am troubled by the daughter’s decision-making process, and I wonder about the relationship between the mother and daughter. Some of the words and the reactions make me wonder what, in fact, the young woman believes to be true. As far as I can tell, there were no religious or cultural beliefs behind her renouncing medical care.  Seeing chemotherapy as “poison” is a bit odd, truthfully, and her claim to be “ready to die at 17” is even more disturbing, especially given that there is treatment available.

My ‘gut’ tells me that there is something askew in Cassandra’s belief system. The things she claimed to fear as a result of chemotherapy – loss of fertility, side effects to other organs – may not happen. Moreover, if she’s dead then these are no longer an issue. These side effects are also manageable. She can prevent a potential loss of fertility by freezing some eggs. The emotional and psychological effects of chemotherapy can similarly be managed with proper medical and palliative care.

Some bioethicists have suggested this was a missed opportunity for an ethics consultation. I agree, and then some. This was not just a missed opportunity for an ethics consultation, this was a missed opportunity for education, communication, support and compassion. This was a missed opportunity to reach out, inform, and support a teen navigating the difficulty of deciding how to treat a life-threatening illness. This was a missed opportunity to understand how she came to the notion that “chemo is poison” or that “being ready to die at 17” is something worth talking about.

For argument’s sake, let’s assume Cassandra made her decision to refuse treatment with all the facts.  Let’s assume that the medical providers explained all the details to Cassandra and she still chose to renounce care. We then have to ask about Cassandra’s mother, the woman who is still legally responsible for her care.  Why would she not choose the treatment most likely to cure her daughter? Some claim Cassandra’s mother showed great bravery, love and compassion in standing by her daughter’s decision to refuse care. I struggle with this. I feel that a mother’s responsibility is to advocate for the best care for her child. Unlike the 29-year old with terminal brain cancer, this treatment will save Cassandra’s life.

This case has caused me to reflect on the implications of a government that mandates the care I give (or choose not to give) to my child, under the assumption that I am of sound mind and can make proper choices about my child’s health.  I trust science, and I trust myself to be a critical thinker.  I believe that there are certain health care issues that should be mandated – vaccinations, for one – because the science is clear (and the information against it is completely faulty and warped by media sensations like Jenny McCarthy). I also believe that I have a moral responsibility to take care of my community, and that includes my child. Sometimes that will require me to do things that are uncomfortable, against my nature, and that may even cause my daughter pain, but it is still the right thing to do. Not for me, but for her.

So, in this case, I come back to a single question: Why?  If I could understand why Cassandra chose to forego chemotherapy, and if I could believe that her mother was thinking “in the best interest” of her child, then I would be more comfortable with the decision to refuse care. Until then, I hope that Cassandra lives a long and healthy life. I also hope that Cassandra, her mother, the medical establishment, and the bioethics community continue to have this conversation because our work here is certainly far from complete.

[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.]

(Golden) Global Change and LGBT Rights

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

I make it a tradition to watch televised awards shows like the Oscars, Emmys, and Grammys. This is not because I particularly care about the entertainment industry, but primarily because I enjoy providing a running commentary of snarky comments about the various nominee’s clothes, styling and speeches on Facebook and other social media outlets.

Obviously, then, I watched the Golden Globe awards ceremony this past Sunday. Awarded annually by the Hollywood Foreign Press Association, the Golden Globes honor excellence in both television and film, and are often seen as a precursor to (and predictor of) the Emmys and the Oscars.

I usually don’t pay much attention to the actual awards themselves, but I was pleasantly surprised when this year’s ceremony became (in part) a celebration of the lesbian, gay, bisexual and transgender (LGBT) community. For example, the television drama The Normal Heart, adapted from the Larry Kramer play of the same name, received three nominations, including a nod for Best Miniseries or Television Film. Openly gay actor Matt Bomer won for his supporting role in that film, which depicts the early days of the HIV/AIDS epidemic in New York City.

More importantly, the television series TransParent, which follows the lives of a Los Angeles family after the patriarch comes out a transgendered, won Best TV Comedy. Jeffrey Tambor also won Best Actor for his role as Maura Pfefferman, a retired professor of political science who begins to transition from male to female.

In his acceptance speech, Mr. Tambor dedicated his remarks to the transgender community, saying: “Thank you for your courage, thank you for your inspiration, thank you for your patience and thank you for letting us be a part of the change.” This was quite an improvement from last year’s ceremony, when both Michael Douglas and Jared Leto managed to offend the entire LGBT community with speeches that mocked the very characters they were honored for playing: a gay man and a transgender woman, respectively.

Given this, I can’t really blame the Hollywood press for crowing that this year’s Golden Globes were “a watershed moment” for LGBT rights. In fact, it has been a watershed year for the LGBT community.

With the recent federal court rulings in Florida and South Dakota, for example, the number of states in which same-sex couples are able to marry has more than doubled. Over 70% of Americans now live in a marriage equality state. New state laws and local ordinances have also been passed that recognize the rights and dignity of LGBT people, including legislation that makes it easier for transgender people born in New York City to correct their birth certificates.

But it far too early, as many in the press have done, to suggest that the fight for LGBT equality is complete. Golden Globe co-host Tina Fey joked that the movie Selma, nominated for Best Motion Picture, is “about the civil rights movement, which totally worked and now everything’s fine.” She could have made the same joke about TransParent, The Normal Heart, and LGBT rights.

Anti-LGBT organizations like the Family Research Council, Focus on the Family, and the National Organization for Marriage are continuing their efforts to prevent or repeal legislation that protect all people regardless of sex, race, ethnicity, sexual orientation, or gender identity. They are often successful in their efforts, as seen by the recent vote by the residents of Fayetteville, Arkansas, to repeal an anti-discrimination ordinance.

Various state representatives and federal legislators are also supporting so-called ‘religious liberty’ bills, which would allow public businesses to refuse goods and services to LGBT individuals. Republicans in the US House of Representatives continue to block a vote on the Employment Non-Discrimination Act, which would prohibit employers from discriminating against workers on the basis of sexual orientation or gender identity.

Pervasive stigmatization and marginalization of the LGBT community continues, even in Hollywood. The cable network TLC, once known as The Learning Channel but now home to highbrow shows like Here Comes Honey Boo Boo, recently debuted a series called My Husband’s Not Gay. This reality series follows the lives of several men who admit they are sexually attracted to other men but who refuse to identify as gay or bisexual. Most of these men are married to women, despite their sexual orientation, presenting the idea that suppressing same-sex attraction is somehow healthy or achievable. Such shows do little but support outdated stereotypes that sexual orientation or gender identity is a choice, and that LGBT individuals can be “cured” through reparative therapy.

Small wonder then that hate crimes and violence against LGBT individuals is still common. In fact, it is on the rise. It should also come as no surprise that a significant percentage of LGBT individuals attempt to take their own lives. Many are successful in this attempt, including Leelah Alcorn, a transgendered Ohio teenager who threw herself in front of a tractor-trailer last week. In her suicide note she wrote, “Please don’t be sad, it’s for the better. The life I would’ve lived isn’t worth living in … because I’m transgender.” But Leelah was wrong. Her life was worth living in.

Despite increasing visibility and recent accolades, there is still a long way to go before the LGBT community achieves equality, regardless of what recent headlines in the Hollywood press might lead you to believe. We owe it to Leelah and others like her.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 15, 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.]

A Cold Day’s Concern About a Warming Planet

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

My husband and I usually spend both Thanksgiving and Christmas at my in-laws’ house in Western New York, located about 30 minutes outside of Buffalo. This year was no exception.

What was different this year was the unusual weather. The Thanksgiving holiday was a white one, with sub-freezing temperatures and lots of snow on the ground. In fact, at that time the Buffalo area was still recovering from one of the worst storms in recent history, with some areas receiving over 8 feet of lake-effect snow in the two weeks prior.

By contrast, the Christmas holiday was a green one, with temperatures in the mid-fifteens and not a flake of snow to be seen. We did, however, experience high winds that knocked over trees and toppled power lines. My grandfather-in-law was nearly killed when he struck a downed telephone poles while driving home late on Christmas Eve.

It’s tempting to chalk up these weird weather patterns to global climate change. According to the vast majority of climate scientists (over 97% of them, to be precise), we can expect to see increasing temperatures, changing rain and snowfall patterns, and more extreme weather events like droughts, floods and blizzards over the coming years. These changes are the result of increasing levels of carbon dioxide and other greenhouse gases in our atmosphere, largely as a result of industrial activity.

Despite concerted campaigns by business groups, right-wing pundits, and conservative politicians to discredit the theory — and despite the fact that much of the US is currently shivering under abnormally cold weather — I do believe that climate change is real. I believe it is happening. I think we are already seeing the effects, even if we cannot ascribe singular weather events like the Buffalo blizzard to greenhouse gases in the air.

But I am a public health expert, not a meteorologist. What concerns me the most about global climate change is the effect it will have on patterns of disease and illness, both here in the United States and overseas.

The health-related impact of climate change is most directly observed during extreme weather events, such as increased mortality among the elderly and those who work outdoors during heat waves. But the long-term effects of climate change on public health are much more insidious, particularly the impact on the spread of infectious diseases.

We know, for example, that infectious diseases like cholera and cryptosporidiosis show seasonal patterns. Until recently, the Americas had been free of the deadly diarrheal disease cholera for more than 100 years. When that water-borne illness re-emerged in Central and South America in 1991, it coincided with a periodic weather event (El Niño) that resulted in much warmer than normal coastal waters. Vibrio, the bacterium that causes cholera, was able to proliferate in these unusually warm waters, setting the stage for increased exposure and transmission to humans.

Cholera is now re-established in the Americas, with outbreaks linked to weather events like El Niño. Unfortunately for those countries affected, over the last several decades the number of El Niño events increased, and studies of historical data show the recent variation is likely linked to global warming.

The spread of other illnesses is also climate sensitive, including the spread of vector-borne diseases like Lyme disease, West Nile Virus, malaria, and dengue fever. Several of these are already present in this country. For instance, Lyme disease is the most common vector-borne disease in the US, with the costs of medical treatment and lost productivity alone estimated to exceed $3.2 billion a year.

Other diseases that haven’t been seen in the US for centuries are likely to regain a foothold as the climate changes, particularly as increased temperatures and altered rainfall patterns allow the mosquitoes that carry malaria, dengue and other deadly or debilitating illnesses to thrive in American cities. I know this personally, as a recent business trip to Grenada left me suffering from the high fever and severe joint pain associated with the newly emergent disease known as chikungunya.

Global climate change seems to be an unfortunate reality, with the effects increasingly seen through changes in rain and snowfall patterns, decreases in crop yields, and extreme weather events like heat waves, cold snaps, droughts and floods. While the impact on human health has been limited to date, we can expect to see increasing morbidity and mortality as water-based illnesses and insect-borne diseases become more common.

All we can do now is try to mitigate the effects, through personal behaviors and public policies that reduce the amount of greenhouse gases produced. The more the planet warms, the more likely we will have devastating floods, disastrous droughts and deadly outbreaks of infectious disease. Sadly, in an era of $2.50-per-gallon gas and economic struggle, neither we nor our political leaders seem willing to make the hard choices necessary to limit the rate and magnitude climate change.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 1, 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.]