Paws and Talk About Cost

By Chelsea A. Jack

“The capacity for suffering and enjoying things is a prerequisite for having interests at all, a condition that must be satisfied before we can speak of interests in any meaningful way,” –Peter Singer

Singer has argued for the equitable and fair treatment of animals based on their ability to suffer in ways similar to humans. I wonder if, in some circumstances, ill pets are treated more humanely in times of crisis than their human counterparts.

Daniel Callahan, co-founder of The Hastings Center, has thoughtfully written on how Americans view cost as a morally acceptable factor in decision-making when it comes to the death of a pet, but not always the death of a human loved one.  Veterinary doctors are not only willing to explain a patient’s prognosis, but also the financial costs for a family choosing among various treatment options for their pet. The reason for this seems to be that conversations about end-of-life decision-making come more easily in the context of veterinary care than when the patient in question is a human loved one. Because medical doctors are often reluctant to talk about end-of-life care with their patients, conversations about the financial costs of such care do not occur either. This is not necessarily the case with veterinary care, where, if anything, vets go out of the way to prepare families for the likelihood of death – and its costs. With both human and non-human patients facing illness, the financial costs of care can be startling and deeply upsetting. Callahan has asked how medical doctors might deliver care options to patients in the way his family’s vet did: “beautifully integrat[ing] money, medical candor, and compassion.”

I found myself considering Callahan’s reflection on the death of his own Cavalier King Charles as I sat in the waiting room of the VCA Animal Specialty & Emergency Center in Wappingers Falls, New York a few weeks ago. In no more than three minutes, my beloved 8-month-old Boxer-Pit mix named Trapper – after MASH 4077’s Trapper John, MD – ventured away from me with another canine companion during a cookout with my neighbors. He played leap frog in-between cars speeding down a nearby highway. When I realized he was gone, I ran down to the road with an ominous feeling in my gut. After calling his name for a minute, an adrenaline-charged Trapper came bolting up from the highway and collapsed at my feet completely out of breath. He had deep abrasions along his front-left paw, which was visibly knotted, and, as the adrenaline wore off, he could barely stand, even though he remained stoically silent with his ears back and eyes locked to my face.

I broke every speed limit on the way to the emergency care center where Trapper went into shock and began convulsing. Exchanging worried glances, the nurses quickly carried him away from me into another room where they attempted to stabilize him.

Immediately, but kindly, a nurse presented me with a series of consent forms and unsettling numbers: Was I okay with paying $400-600 to stabilize Trapper? Did I want them to try and resuscitate Trapper if his heart stopped, even if it meant spending $500 on a procedure with a success rate around 17 percent? Did I consent to the three recommended x-rays of his front-left leg, chest, and hips, which would approach $400 – without factoring in the possibility of further x-rays later over the next 24 hours? There was a possibility that Trapper would pass away due to contusions in his lungs – did I want to keep him overnight for monitoring even if that was another $200? Did I want to see the credit plan offered for 12 months without interest for patients who cannot afford expensive high-quality care?

Throughout the whole nightmare, the doctors and nurses presented each decision-making scenario with at least two options: cost projections for the “ideal” treatment plan versus the “less-ideal” treatment plan. As I weighed these projections, I thought how the word “ideal” places a nontrivial degree of guilt onto the decision-maker who opts for the less-ideal options. It problematically values the more costly decision as morally preferable, even when this might not accurately reflect the moral landscape – marked by competing financial obligations – in which real-time decisions are made.

Individuals and families (more often than not) cannot isolate an immediate, short-term moral decision from the other long-term ones lingering in the background. For example, as I weighed the two treatment plans presented to me, I thought, “I have signed a lease committing me to pay $X/month. I love my apartment and cannot legally break this lease agreement, and I cannot emotionally or financially afford to forfeit my living situation even if it means that Trapper has to receive the 'less-ideal' treatment plan". As a recent post-grad, I weighed the costs of fulfilling one long-term goal (i.e. living happily in my new home) against the costs of fulfilling my obligations to care for Trapper as my pet who was facing a health crisis. Committed and interdependent moral agents are forced to make these kinds of decisions every day. In my case, it was productive to not only have Trapper’s physician initiate a conversation about our end-of-life preferences, but also address possible treatment options and possible costs. 

Miraculously, Trapper is expected to make a full recovery and came  home from the emergency care center after 24 hours of observation. I’ll borrow Callahan’s language to describe my own personal take-away from this ordeal: Trapper’s care team embodied those qualities that “we might hope for from a doctor for our care, but by no means yet reliably available” in the human medical context.

Chelsea is a Research Assistant at The Hastings Center. She graduated with highest distinction from the University of Virginia, where she received a B.A. in political and social thought and anthropology with a minor in bioethics. Her research interests include medical and legal anthropology, political and social theory, bioethics, and contemporary feminist thought. 

The Daniel Callahan Young Writer's Prize

Prize Summary 
This post is pleased to announce a new award, The Daniel Callahan Young Writer's Prize, sponsored by Daniel Callahan. Submissions will take the form of essays on a bioethics topic that are written as blog posts, designed for this blog, Bioethx Under 25. From all submissions, a group of finalists will be chosen and then an expert panel of bioethicists, including Daniel Callahan, will read the finalists' essays and award one prize amounting to $500. 

All submissions will be considered for publication on the blog and eligibility to be a finalist or receive the prize is dependent on willingness to edit and revise the essay for publication. Submissions will be judged anonymously. Please see guidelines below for further information. 

Prize Submission Guidelines

- Essays must be 500-1000 words and original submissions to Bioethx Under 25 i.e. never posted before on the blog. 

- Essays must conform to all other submission guidelines for the Bioethx Under 25 blog and thus, be clearly related to bioethics and be written in an accessible manner. Please refer to the blog's About Page for more information. 

- Essays will be accepted from September 10th, 2014 to November 15th, 2014. 

- Any writer who is also a student in high school, college, or a graduate program is eligible to submit. Any writer who is not a student is eligible so long as he/she has not completed a PhD and/or worked more than 5 years in the bioethics field with a terminal degree (e.g. JD or MD). So long as the other guidelines have been met there is no age limitation or requirement for submission. 

- Writers are not eligible if they currently or have previously worked full time for The Hastings Center or Daniel Callahan. Anyone affiliated with Bioethx Under 25 in an editing capacity is also ineligible. 

- To submit, please email bioethicsunder25@gmail.com with your essay attached in word format. In the body of the email please indicate that you are submitting for The Daniel Callahan Young Writers Prize and include your name, phone number, email address, current occupation and place of occupation (if a student, then your school, potential degree, and expected graduation year), and your highest degree attained with the school and year. 

- For any questions please email bioethicsunder25@gmail.com or comment below. 

About Daniel Callahan

Daniel Callahan is Senior Research Scholar and President Emeritus of The Hastings Center. He was its cofounder in 1969 and served as Director and President between 1969 and 1996.  Over the years his research and writing have covered a wide range of issues, from the beginning until the end of life. In recent years, he has focused his attention on ethics and health policy.

He has served as a Senior Lecturer at the Harvard Medical School and is now a Senior Scholar at Yale. He received his B.A. from Yale and a PhD in philosophy from Harvard. He has honorary degrees from the Charles University, Prague, the Czech Republic, the University of Colorado, Williams College, Oregon State University, the State University of New York and the University of Medicine and Dentistry of New Jersey.

Callahan is an elected member of the Institute of Medicine, National Academy of Sciences; a former member of the Director’s Advisory Committee, the Center for Disease Control and Prevention, and of the Advisory Council, Office of Scientific Responsibility, Department of Health and Human Services. He won the 1996 Freedom and Scientific Responsibility Award of the American Association for the Advancement of Science. He is the editor or author of 47 books. 

On the Matter of Life and Death

By Michael DiBello

The Death of Ivan Ilyich by Leo Tolstoy provides a chilling and sobering tale of death. Ivan Ilyich is caught up in the everyday routine of what most would consider a patently ordinary life. His main concerns are everyday problems and affairs. He holds an unreflective stance towards death, perceiving it as a simplistic event experienced by the other, not himself. Yet, that all changes when he begins to die. He grapples deeply with the meaning of life, suffering, and death. Questioning the core of his being, he starts to doubt how well he had actually lived his life and experiences an agonizing death.¹

For me, the novel raised several important questions, including: Can we truly live well and meaningfully without thoroughly reflecting on our own mortality? What, if anything, can be done to prevent deaths like Ivan Ilych's and other so called “bad deaths”?

People can live similar lives and die similar deaths. Nonetheless, just as every individual lives in a way fundamentally his own, everyone has a unique encounter with the specter of death. We can die quickly or slowly, painfully or painlessly, in denial or with acceptance, of old age or by accident, bitter or satisfied; the list of descriptions can go on and on.  Most people, when asked, could probably come up with an ideal conception of how they would like to go. While some undoubtedly experience a serene and graceful passing, surgeon Sherwin Nuland explains in How We Die that this is rare. Sadly, a norm for the end of life has become futile life support and unfamiliar doctors and nurses.² Perhaps educating ourselves on what we can more realistically expect to happen to us in the dying process can not only minimize physical suffering but also allow us to appreciate and reflect more deeply on what we distinguish as valuable and important in being a person. Indeed, what tortured Ivan Ilyich was that it was too late for he, himself, to think about what death really meant and hence, what life really meant.

How often do we really think of death in terms of ourselves? The philosopher Martin Heidegger was concerned that conceptualizations of death separate it from the self and are inauthentically placed in the public domain. He argued this was evident through linguistic expression that reduced death to an event that happened to “one” or “they”. As he says, “dying is not an event, it is a phenomenon that should be understood existentially… by its very essence, death is in every case mine, insofar that it ‘is’ at all.”³ Heidegger asks the question: Why is the concept of “dying” only utilized in the context of imminent death? In Being and Time he introduced “being towards death” as a philosophical idea.³ This means that dying is something happening all of the time to everybody, most importantly to oneself, not just to specific people at specific times.

Popular media and culture surrounding medicine play powerful roles in attitudes about death and dying. The latest reports about miracle drugs, while in some ways encouraging, may unconsciously cultivate unrealistic expectations about sustaining life when death is inevitable. These and other technological advances can give the illusion that dying is something we can control and have a choice in, or that the process can micromanaged. It is hard to deny that choice has become an integral part of the dying process in modern medical culture. A plethora of choice can foster hope for people in many medical situations. While hope can bring deliverance, false hope can bring suffering. Nuland explains that doctors (and the patients they influence) may tend to see death as something that must be conquered at all costs, as something for science to overcome. Unfortunately, he says the process devolves into a “puzzle” that must solved, far removed from real human emotions and needs.²

Ars moriendi, or the art of dying,² perhaps is the type of paradigm shift that is needed regarding mortality. Death should not be avoided at all costs, yet it should not always be readily accepted without medical intervention. It is an ambiguous, complex phenomenon that is not conducive to pure ideologies. Just as the artist does not look to science when he paints a canvas, one need not look to science to engage in an intensely personal experience. Doctors and other healthcare workers need not be the only “experts” on dying. Perhaps, ironically, grappling with the nature of mortality and what it entails can be healthy for an individual's sense of personhood. For example, upon learning he was terminally ill, Australian philosopher Julian Young was so inspired that he wrote three books in four years. A terminal patient describes a new-found vividness: “To live in the bright light of death is to live a life in which colors and sounds and smells are all more intense, in which smiles and laughs are irresistibly infectious, in which touches and hugs are warm and tender beyond belief…”.³

Henry David Thoreau may teach a further lesson on death and dying. A great thinker, social activist, and naturalist, he was clearly full of passion for the extraordinary life he lived. However, if we are to trust his comments in midst of a terminal disease, it is clear he gave quite a bit of consideration to his own mortality: “When I was a little boy I learned that I must die, and I set that down, so, of course, I am not disappointed now. Death is as near to me as it is to you”.³ 

1. Tolstoy, Leo, and Richard Pevear. The death of Ivan Ilyich and other stories. New York: Alfred A. Knopf, 2009. Print.

2. Nuland, Sherwin B.. How we die: reflections on life's final chapter. New York: A.A. Knopf :, 1994. Print.

3. Barry, Vincent E.. Philosophical thinking about death and dying. Belmont, CA: Thomson/Wadsworth, 2007. Print.

Mike graduated from Northeastern University in January 2014 with a major in biology and a minor in ethics. He is interested in a wide range of issues in bioethics and how they are applied in today's world.  

The Home in Nursing Homes

By: Rebecca Kaebnick

The sitting room, living area, and community space of the skilled nursing facility in my grandparents’ staged living community was often the hallway. There was a harshly-lit room with tables and a TV around the corner, and a cafeteria-like dining room down the hall. However, the aides tended to gather residents in the hallway, lined up in their wheelchairs in front of the nurses’ and aides’ station. The forbidding front of this station, a pedestal for charts and computers, was an impossible height for many of the wheelchair or walker-bound residents. Strung along this main hall and around some corners were the residents’ spaces, not quite oriented to watch the activity outside the windows, but not quite arranged to focus inward, on each other, either.

On paper, this wing had it all: compliance to health codes, caring nurses and aides, physical therapy. In fact, the facility was top-of-the line. But there was also an unsettled feeling that upset any possibility for a homey feel. Time moved bizarrely: residents sat silently in their rooms or in their wheelchairs in the hallway while the aides swept around and shifts turned over; the clock by the aides’ desk seemed to be counting down to many things and to nothing. When my family visited, we perched in odd places around my grandmother’s room, or gathered near the doorway. When we passed residents, we did not feel as if we were supposed to smile and greet them; one does not greet patients she passes in a hospital, and that’s what it felt like. This was a place where people were on their way to somewhere else; like a hospital, nurses and visitors and patients moved in and out, but these spaces were not a home.

Why are such facilities like this? If they were designed differently, could they feel different? While many of the residents living in this area need careful medical attention, this phase of life is not just about medical and physical care, and doesn’t always have to feel like a hospital.

There are some successful efforts to break the mold, mainly sprung from the culture change movement in the nineties to “deinstitutionalize” nursing homes. The Green House project, developed in the early 2000s, is a key example of an accessible and efficient elder care home that still manages to create a more hospitable environment. Green Homes look more like houses than institutions. They are set up like family residences too, with a living room containing a hearth, a dining table seating all 7-10 of the residents, and the appearance of few medical instruments and technology. Green Homes redesign personal and communal space to make residents feel they are living in a home, rather than a glorified hospital, and give nursing assistants the role of “universal workers” who do everything from dispensing medications to cooking dinner. They have more interaction with residents than do aides in traditional nursing homes, and reportedly increased job satisfaction. The new physical characteristics of the homes and different roles of the aides reconfigure interactions between residents and staff, between residents, and even between residents and their family, during visits.

Another inspiring nursing home is Beatitudes Campus in Phoenix, Arizona. In a New Yorker article published last May, “The Sense of an Ending,” Rebecca Mead describes efforts made to replicate the comfortable, residential feel like that of the Green Homes in a more traditional facility. Tena Alonzo, the Beatitudes director of education and research, adjusts details of a resident’s lifestyle in unconventional ways that can make the resident much more comfortable. For example, a resident’s bed is lowered when there is a higher risk of falling out during the night. The “neighborhood,” as the staff call the facility, is not run on strict schedules; individuals create their own timetables based on what works for them. Food is available around the clock. The layout of the space and interactions between residents and staff are influenced by the characteristics of dementia, not by what is the cheapest or easiest. Instead of a heavy metal door at the entrance of the facility, residents are more subtly reminded not to wander by a velvet rope, like that of a classy restaurant, and a large black carpet, which dementia patients don’t like to walk on because they might interpret it as a hole. Alonzo develops strategies like these to make residents comfortable in more respectful and logical ways than those of traditional nursing homes. She also wishes for the staff to be more understanding of the lifestyle and needs of their residents; she encourages the staff members to try acting as residents for a day, in situations that can be embarrassing or uncomfortable, such as wearing a diaper.  This is another take on the Green House “universal worker” idea, to create more equal and warm relationships between residents and their caretakers. Mead mentions several other establishments that apply concepts similar to Alonzo’s. Like Beatitudes, the Pioneer Network in Chicago attempts to satisfy residents without the heavy use of psychotropic medications. The Isabella Geriatric Center and the Cobble Hill Health Center, both in New York City, are working to integrate Alonzo’s ideas into their practices.

In a study  published in The American Geriatrics Society Rosalie A. Kane et al. assess the success of Green Houses, finding that “GH residents reported significantly higher satisfaction with the nursing home as a place to live than residents of the [comparison facilities].” These feelings of comfort and happiness go hand-in-hand with particular trends in emotional and physical health, such as depression and the loss of independence in a set of activities called Activities of Daily Living, which include eating and using the bathroom. Alonzo and her co-director, Long, found strong trends in weight-maintenance and even healthy weight gain among their residents, due to their adaptive, flexible eating and daily schedules. Pam Belluck, in her New York Times article “Giving Alzheimer’s Patients Their Way, Even Chocolate,” cites various studies showing that space, activities, and medication can be adapted to make a dementia patient more comfortable. Making the lights brighter can have a big effect. Prescribing medication specifically for pain instead of an antipsychotic for dementia can keep side effects under control. Alonzo’s tendency to allow residents comforting rituals, such as sucking on chocolate and playing with dolls, has scientific basis: habitual pleasurable activities have been proven to correlate to depression and decreased cognitive activity. Belluck mentions a University of Iowa study that found that although many dementia patients no longer have the strongest memories, a happy mood can persist hours after the activity ends.  Living in an environment that makes them happier has significant effects on many dimensions of the residents’ health, interpersonal relations, and can help them see themselves as people fit to live in a real home, even if it requires some new accommodations.

If my grandparents’ experience is typical, then it is difficult for the average elder care consumer to ascertain just how homelike the nursing facility is when looking at retirement communities.  Many attempt to channel cheerfulness and hospitality into their built environments by adding special features to their more independent-living wings— fire-lit libraries, easy-access greenhouses, and welcoming dining rooms. Yet it is just as important for the visitor to learn about the functional wings. Maybe consumers do not expect areas designated for increased medical attention to have the same atmosphere, or maybe these areas are just not fully presented to them. Do companies tend to push some aspects of the independent living options and downplay some of the dependent ones? When potential customers visit, they may be more focused on the near future, when they will be living in the apartments and visiting the dining rooms. It is hard to fully picture a time when one’s health may have changed enough to need around-the-clock care, but many will arrive at that point.

Welcoming and peaceful environments seem even more important in the wings where residents deal with more advanced conditions and illnesses. Many residents, like my grandmother, juggle health-related anxieties with the pressure of moving somewhere entirely unfamiliar. Much of the stress my grandmother experienced seemed to be derived from a feeling of displacement. She was always someone who took great pains to make her living space feel like hers, and in this wing she lost this capability. Green Houses and Beatitudes illustrate that it is possible to unite medical care to homeliness, even though a straightforward set-up following the lines of a hospital wing might seem more efficient. Green Houses are certifiedskilled nursing facilities, run by a dependable team of certified nursing assistants, and a “clinical support team” made up of professionals who supervise the medical experience of the residents. Half of the residents in the studied Green House were certified dementia patients, and InformeDesign, a research tool for design professionals, asserts in a short piece about Green Homes that this model could be applied to “even the most heavy-care facility.” Quality of care is not compromised in this environment; reports on the quality of care by the Green House residents overall were either at the same level or better at the Green Houses than at the comparison nursing facilities. At Beatitudes, the directors found that patients were happier months after their arrival, and sometimes were able to make health gains: one resident was able to stop taking insulin because she began eating so well. Beatitudes won an award from the American Association of Homes and Services for the Aging. These models have found ways to successfully integrate medical technology and accessibility into a warm environment.

The basic premise of the Green House project is to find a way to make living areas cohesive units in which the medical structure isn’t the dominant aesthetic factor, detracting from the quality of life of the residents. While it is unclear how affordable Green Houses are, and it is true that the movement is not big enough to be an option for everybody, the success of Beatitudes proves that the goals of the project can be successfully applied to traditional models that still make up the most common elder care options. Beatitudes’s innovations go farther than the built environment, to making the schedules and activities of the patients, and the responses of the staff to residents’ distress, more adaptive to the individual patients themselves. Learning this makes me optimistic and hopeful that this trend will grow. Thinking back to my grandparents’ situation, I can see that my grandmother would have been well suited to be cared for by a collection of staff who are not afraid to make unconventional changes to make a resident more comfortable. Green Homes and homes like Beatitudes take the time to organize themselves according to what they see helps their patients, not according to tradition. They create environments in which conversation between residents, and between residents and staff, is encouraged. Visitors can join the residents in these spaces, bringing in pieces of the outside world but at the same time integrating themselves into this life, at least for a day. The residents can feel like they belong there; they aren’t stored in their rooms or lined neatly in the hall. Instead they can congregate around a puzzle, meet with a friend, pick out a book for themselves. They don’t just stay here until the end—they live here, enjoying each moment with vigor.

Rebecca is a junior at Ithaca College where she is majoring in Sociology and minoring in Spanish, art, and honors. She is interested in issues relating to globalization and vulnerable populations.

Mill and Kant on Feeding Practices: The Case of Mrs. P

By: Samantha Page

In this piece, I apply John Stuart Mill’s “greatest happiness” principle and Emmanuel Kant’s framework emphasizing autonomy to a case study on the issue of feeding practices among dementia patients, especially those with no directly expressed wishes regarding their end of life care. Mrs. P, a patient with declining health due to old age and dementia of increasing severity, is no longer capable of feeding herself and her caregivers must implement either a “comfort feeding only” (CFO) practice or a feeding tube in order to provide her with adequate nutrition (Palecek 580). What complicates the situation further is that Mrs. P has not directly expressed her wishes regarding this scenario, via living will or a conversation with her health care proxy and husband, Mr. P (Palecek 582). Emphasizing both Mill’s value of pleasure over pain and Kant’s priority of preserving individual autonomy justifies a CFO practice as the best accommodation for the patient and her caregivers (Mill 6; Kant 39).

“Greatest happiness” principle. John Stuart Mill stresses the “promotion of pleasure and the prevention of pain” in the lives of human beings, which ultimately justifies prioritizing Mrs. P’s comfort through hand feeding above the physical health she might gain from tube feeding (Mill 10). Although Mrs. P does not recognize family and friends, she still finds comfort in their presence and touch. While Mill does not consider comfort one of the “higher pleasures,” and does categorize health that way, the significance of this distinction shifts relative to the circumstances of Mrs. P’s state (Mill 13). Mill’s recognition of health as a higher human pleasure is contingent on Mrs. P’s cognizance of her health, which no longer exists. Hand feeding also maximizes the comfort, and hence pleasure, of Mrs. P’s visitors and caretakers, because CFO is a much more tolerable practice to bear and implement compared to a mechanized feeding tube. The tube may also cause Mrs. P pain, as the history of the device shows that it can distress patients with dementia who sometimes wake up unaware of the placement of the device and attempt to remove it (American Geriatrics Society). Choosing CFO minimizes the suffering attributed to feeding tubes, while maximizing the comfort associated with hand feeding for all parties.

Autonomy. Emmanuel Kant’s emphasis on autonomy supports hand feeding because the definitive death that results from CFO involves less estimation of the patient’s ambiguous or altogether unknown wishes, and therefore is less compromising of her autonomy. Because Mrs. P’s wishes about end-of-life feeding practices were not explicitly stated, she has little direct autonomy over the situation at hand. In order to best preserve Kant’s prioritization of autonomy, Mrs. P’s caregivers should minimize the circumstances, like the one at hand, in which her wishes are unknown (Kant 39). With CFO, death coincides with the patient’s cessation of eating and resultant malnutrition, starvation, or other similar consequences, and thus is definitive. Comparatively, the constant nutritional intake of tube feeding prolongs patients’ lives indefinitely, risking an eventual coma or persistent vegetative state. Because Mrs. P’s wishes regarding end-of-life care in these circumstances are not necessarily known either, they would force caregivers to consider a new set of questions and to pursue further bioethical debates. This would again force an estimation of the patient’s wishes and may compromise her former autonomy, a risk that implementing CFO could avoid. Further debate about a patient’s wishes also intensifies the distress of family and caregivers involved, ultimately increasing the net pain.

The synthesis of Mill and Kant’s philosophies on a just life and treatment of a “rational being” shows that CFO is the feeding option best suited for Mrs. P because it will promote pleasure and minimize pain, as well protect the patient’s autonomy (Mill 10; Kant 38). If comparable cases were to arise, where notable comfort is gained from touch and there is little to no instruction regarding the situation at hand, CFO should also be implemented because it ensures similar benefits in similar instances. This reasoning suggests that CFO should become the standard care treatment from a “best interests” approach for all dementia patients who find comfort in touch. Fully examining a best interests approach begins a foray into a deeply complicated bioethical issue; however, this case can be generalized, and allows us to use an individual’s most basic sense of pleasure to help estimate what is ethically beneficial care to offer them when their wishes are unknown. 

Samantha Page is a first-year student at Smith College, where she was first introduced to the field of Bioethics. She is interested in studying American history and art history.

Works Cited

Kant, Immanuel. Grounding for the Metaphysics of Morals, with On a Supposed Right to Lie Because of Philanthropic Concerns. Translated by James W. Ellington. Third edition. Indianapolis: Hackett, 1993.

Mill, John Stuart. Utilitarianism. Kitchener, Ontario: Batoche Books, 2001. http://socserv.mcmaster.ca/econ/ugcm/3ll3/mill/utilitarianism.pdf.

“Older Adults with Advanced Dementia Who Can No Longer Feed Themselves Should Be Fed By Hand, Not Fitted With Feeding Tubes, American Geriatrics Society Confirms,” The American Geriatrics Society. September 17, 2013. http://www.americangeriatrics.org/press/news_press_releases/2013_press_release_archive/id:4639 

Palecek, Eric J., et al. “Comfort Feeding Only: A Proposal to Bring Clarity to Decision-Making Regarding     Difficulty with Eating for Persons with Advanced Dementia,” Journal of the American Geriatric Society 58 (2010), 580-84.

Thoughts on NUBC: Learning What It Means to "Do" Bioethics

By: Dr. Tiffany Cvrkel

A few weeks ago a group of my undergrad students and I returned from our very first National Undergraduate Bioethics Conference (NUBC). I thought I’d write down a few thoughts about our experiences, and (hopefully) make a case for why attending this conference is a uniquely worthwhile experience.

We have a pretty thriving group of undergraduate bioethicists at UCLA. Most are pre-med students who do independent research in bioethics as a compliment to their intensive lab work and hard science curriculum. They are a passionate (and inspiring!) bunch, and they are always looking for ways to connect with their peers at other institutions.

And that’s the story of how they – not me, their faculty mentor! – found out about NUBC. As they were browsing this “Bioethx Under 25” blog, they found a listing for a conference aimed especially at them. I got an email pitching a trip to Chicago.

It was fitting start. While faculty members are involved in the orchestration of NUBC, much of it is run by undergrads for undergrads. A few of my students decided to submit papers to the conference, and Jessica Kriksciun (one of our seniors) had her paper accepted. They also decided to form a Bioethics Bowl team and compete during the tournament. None of us had any idea what a “Bioethics Bowl” looked like, but it sounded like a decent way to spend a Saturday.

If you’ve never been to a NUBC before, you should know it is an odd marriage of two very different events. The first is the conference itself, run in a mostly traditional way -- paper presentations along with brief Q&As. The second is a tournament event called the “Bioethics Bowl,” where student teams compete by giving well developed/supported arguments and objections regarding bioethics cases. The team with the better arguments wins.

I’ll give you a few moments here to quip about competitive bioethics. Many of my colleagues found this whole set-up an endless source of hilarity. And to be honest, I was a little wary. Some of my colleagues were worried that this kind of thing just reinforces combative relationships between bioethicists – a problematic dynamic that already exists in some places of our discipline. It’s hard enough to work in a cross-discipline space. Shouldn’t we all be trying to get along, not score points against each other?

I had another, slightly different worry. When I paged through the cases that the Bioethics Bowl would be using, I noticed the “ripped from the headlines” format. But the fact that these are real cases involving real people adds an additional burden for our students. I am close with some of the ethicists who worked on one of the cases in this year’s packet. I saw first-hand the devastation and anguish that this case caused for everyone involved. I feared real people’s stories might be turned into nothing more than rhetoric-laden debate fodder, cheapened to score points.

I am not against debate as an intellectual exercise. I was on my school’s debate team as a student, and once upon a time, I coached it. But the goals of debate are not always to find the most subtle, respectful, and nuanced lines of reasoning. The people from these cases? They deserve nothing less.

And when the Bioethics Bowl came around, there was indeed some debate-style rhetoric and hyperbole. But happily, this was not the norm. Most of the teams we saw weren’t trying to be cut-throat in point scoring. They were trying to work through the issues in genuine and sincere ways. There was a lot of “we agree with our opponents on their position, but we’d like to raise an issue that might have been overlooked” kind of dialogue – the kind of dialogue that happens in professional ethics committee meetings. And with a few exceptions, my students left each round feeling like they both made new friends and got to practice articulating true, difficult positions.

But the Bioethics Bowl – by far – was not the highlight of the conference, which you would never know by looking at the attendance numbers. It quickly became clear that there are also two demographics at NUBC, the people who were there for the conference and the people who were there only for the Bioethics Bowl. And the vast majority of people fell into the second category.

This was such a shame. The conference part of the NUBC was amazing. Sitting around the breakfast table before a day of presentations, all of us huddled together, the following conversation happened. One of my students asked, “Um, Dr. Cvrkel? What kinds of questions should we ask the presenters? I’ve been to lots of conferences where I’m not really supposed to ask questions, and this is the first time I’ve been at a conference where I’m the intended audience! What does a good question look like?”

And that’s when we discussed the difference between being a student and being a colleague. We talked about the art of asking useful and supportive questions instead of “gotchas.” We talked about when follow-up questions are appropriate and when they’re not. We talked about how to approach someone to discuss related projects. We talked about how to do bioethics in the real world.

I teach two large lecture classes every quarter; that’s hundreds of students, multiple times a year. And while I try to teach each of my students some of the finer points of bioethics, the famous authors, the important arguments, I can never offer them the experience of doing bioethics with their peers. We always have a power differential in traditional learning environments, and this means students never get to practice wielding their knowledge as equals. But at NUBC, they present their ideas not as students looking for approval, but as scholars looking to advance an idea. And they sit in the audience not merely to learn, but to engage.

The NUBC has been the one environment where my students experienced what it is like to be bioethicists. And that’s not easy to teach. But of all the things I’ve tried to teach my students, I can’t think of any that are more valuable.

The folks at Loyola University of Chicago put on a wonderful conference, and though it was our first, it won’t be our last. We’ll be in Florida for NUBC 2015—you should join us.

Dr. Tiffany Cvrkel is a philosopher, bioethicist, and lecturer in UCLA’s Molecular, Cell, & Developmental Biology department. She is also the faculty adviser for UCLA’s Undergraduate Bioethics Club (aka: The Bioethics Brigade) and runs the UCLA Bioethics Lab, where students do advanced/independent bioethics research.

Timbre at Death: Fragments on End of Life Care

By: Mohini Banerjee

This post is a small collection of impressions and quotes, hopefully prompting us to ruminate and reflect on the end-of-life.

“Nothing that you do in science is guaranteed to result in benefits for mankind. Any discovery, I believe, is morally neutral and it can be turned wither to constructive ends or destructive ends. That’s not the fault of science.”—Arthur W. Galston Quoted in an obituary piece for the New York Times.

Last week I attended an informal lunch discussion around the circumstances of a “good” death. In full bioethics form, we discussed the voluntary stopping of eating and drinking and physician assisted suicide. However, within ten minutes the discussion turned to music—that is, what would you want to hear when you go? I’ve never considered that question. It seemed oddly specific, macabre, and perhaps a little too eager. The scholars I conversed with seemed more comfortable discussing various likes and dislikes (certainly no Vivaldi), and I suggested my own favorite, Holst’s “Jupiter”. We talked about music and how Pete Seeger died with his friends and family singing in his hospital room. Persons and lovely harmonies seemed to soothe the often painful experience of dying. Some around the table discussed personal experiences, family or others, and the decisions taken towards the end-- meant to provide for oneself, while trying hardest to protect ones left behind. Their understanding of loss was completely enveloped in an ethical discourse on agency and patients’ needs.

“In quixotically trying to conquer death doctors all too frequently do no good for their patients’ “ease” but at the same time they do harm instead by prolonging and even magnifying patients’ disease.” 

― Jack Kevorkian, Prescription: Medicide: The Goodness of Planned Death 

Which words we choose around hastening death are particularly important since “euthanasia”, “physician assisted suicide”, “death with dignity”, “aid in dying”, “suicide”, “voluntary stopping”, "palliation", and “no extraordinary measures” are only some of the terms that contain their own emotional valences and particular historical backgrounds. Often this language gets conflated, bringing about both confusion and some misunderstanding. Some, for instance, would object to my inclusion of a quote by Dr. Kevorkian given the potential harm in including his ideas into any “reasonable” discussion on aid in dying. I agree that the mistaken assumption that aid in dying means euthanasia is harmful to a movement towards choices at the end of life. However, if we’re considering values at the time of death then our discussion should consider the reasoning of those who advocate for marginal positions.

“With terminal illness, your fate is sealed. Morally, we’re more comfortable with a situation where you don’t cause death, but you hasten it. We think that’s a bright line.” –Arthur L. Caplan Quoted in “True Freedom” Time Magazine.   

As a society we may want to be thinking more about the music and people we want in the room than the particular medical intervention that would make us most comfortable. We may not want to think of this at all. A melody chosen in the midst of a hypothetical conversation only signals our hope for a certain mood, however distant and contrived. Death, on the other hand, is uncomfortable both in actuality and in how we refuse to acknowledge its reality. Discussing medical decision-making at the end forces a contemplation of physical and mental anguish, but considering our soundtrack does not. In that potential future we are free of pain. And, whatever fear of the unknown we began with is pacified. We simply surrender to the trumpets blaring, drowning out the likely beeping machines. 

Mohini graduated from Smith College in May 2013 and is a research assistant at The Hastings Center, an independent non-profit research institute in bioethics. She founded Bioethx Under 25 in January and acts as Editor in Chief. For interest in the blog please email her at bioethicsunder25@gmail.com.

Dead Women Are Not Incubators

By Naomi Scheinerman 

On November 26, 2013, Marlise Munoz suffered a pulmonary embolism – a blood clot in the lung – in her Fort Worth, Texas home. Her husband, Erick Munoz, a paramedic, found her on the kitchen floor where she had collapsed and lay unconscious for over an hour. He administered CPR and called an ambulance, which rushed her to John Peter Smith Hospital. The doctors put her on a ventilator and restored her heartbeat, but soon determined that she had suffered “irreversible cessation of all spontaneous brain function,” or brain death. Her husband requested that she be taken off the ventilator, but the doctors refused. Marlise was 14-weeks pregnant and the Texas Advance Directs Act stipulates, “A person may not withdraw or withhold life-sustaining treatment under this chapter from a pregnant patient.” Erick, Marlise’s parents, and several medical and legal experts agreed that the state law should not apply because the ventilator was not “life-sustaining” because brain death is a legally binding definition of death accepted by all 50 states. Finally, after weeks of appeal, on Friday, January 24, Tarrant County District Judge R.H. Wallace ordered the hospital to disconnect Munoz from her ventilator.

Now, why discuss brain death in a reproductive health column?

Here are some of the many questions one should ask about this case: what is the point of an advanced directive if state laws can override them? Can there be any exceptions to our understanding of brain death? Should it matter how long the woman has been pregnant? Does the mandate apply to all pregnant women, regardless of their neurologic condition? I would like to focus on the last question. The short answer is this case is not about defining death as brain death, it’s defining a fetus as a living human being. At the time that Marlise Munoz became brain dead, she was 14-weeks pregnant. Texas’s laws regarding abortions are (coincidentally?) some of the more restrictive in the United States.

In addition, there is a sad irony in this case: the law preserves fetal life to keep a dead woman hooked up to a ventilator at the expense of medical equipment. However, this only fosters a potential individual whose existence will be replete with suffering and sadness. Because Munoz’s fetus was without its mother’s properly circulating blood and therefore oxygen, doctors and lawyers speculated that there would be severe health ramifications. On January 22, Munoz’s lawyers declared the fetus “distinctly abnormal.” For example, gender can normally be determined between 18 and 20 weeks and at 22 weeks, Munoz’s fetus’s “lower extremities [were] deformed to the extent that the gender cannot be determined.” Texan law, as such, was serving to not only keep a dead woman on a ventilator, but to create a human being whose chance at a healthy happy life was completely lost as a result of the law that tried to insure its existence.

One may fairly ask: What if the woman entered persistent vegetative state and the fetus was 30 weeks? According to NPR, the “authors of the Texas Advance Directives Act intended to keep a pregnant woman who was in a persistent vegetative state on a ventilator until she could deliver.” Turns out the authors of the law never intended for the hospital to interpret keeping a dead woman “alive” in order to serve as an incubator for the fetus.

Naomi Scheinerman is a Research Assistant at The Hastings Center. She graduated Phi Beta Kappa, with high honors and in distinction from the University of Michigan in Ann Arbor, where she received bachelor’s degrees in philosophy, political science, and Hebrew and Jewish Cultural Studies. She contributes a bi-weekly column on reproductive health.