July 2016 Newsletter Article

Ethics Essay Contest at Ethics SIG

Announcement: Ethics Essay Contest at Ethics SIG

Dear Pediatric Residents and Fellows of all Subspecialties in Pediatrics,

We are pleased to announce the sixth APA Ethics Special Interest Group (SIG) Essay Contest.

The contest is open to all pediatric residents and pediatric subspecialty fellows (including pediatric surgical fellows). Essays should focus on the ethical issues that residents and fellows face while caring for patients. Topics may include but not limited to personal narratives of ethical dilemmas faced in training or practice or scholarly presentations of issues related to organizational, interprofessional or global health ethics.

Essays should be between 800 to 1600 words. Essays longer than 1700 words will be disqualified without review. Essays must be original and unpublished works. If multiple authors, the award will be shared. All co-authors should provide demographic information (training status) and role in manuscript preparation.

Two awards will be offered. Awards can only be used as travel awards to attend the PAS meeting.

1st Place - $200
2nd Place - $100

The winning essays will be read at the PAS meeting in San Francisco and will be published in APA website as part of Ethics SIG newsletter in July 2017. If the resident or fellow will be attending PAS in San Francisco they may present their paper themselves.

Deadline: March 10, 2017
Submit essays to:

We wish you all the best in your writings in ethics!
Zeynep Salih, M.D., MA
Indiana University School of Medicine
Riley Hospital for Children

Adrian Lavery, MD, MPH
Loma Linda University
Children's Hospital

Winning Essays for Ethics SIG Ethics Essay contest-2016

First prize winner: "End of Life Care Before Birth"
Phoebe Danziger, MD
House Officer-I
Department of Pediatrics & Communicable Diseases
University of Michigan C.S. Mott Children's Hospital

End of Life Care Before Birth

On the last day of my third year of medical school, I learned that my pregnancy was complicated by an obstructive uropathy. I was 19 weeks pregnant, and we chose to terminate the pregnancy, an experience I have written about previously. My husband and I considered the fetus our baby, our son-to-be, and we experienced our decision to end his life in utero as the most profound medical and parenting decision we had ever made.

Now, as a pediatrician-in-training and the mother of three healthy daughters, I think frequently about our son, and the decision we made. With every child on the inpatient census with posterior urethral valves; with every well-child exam I schedule for my daughters; with every elevator ride I share with expectant parents who solemnly exit on the floor that houses the hospital's fetal diagnostic center, I think of our baby. I think of what color his fuzzy, sweet-smelling hair would have been, and how old he would be if he had survived. I think about how his brief existence is shaping me as a pediatrician, and I wonder if I would even be on this clinical path at all, a path already challenging enough with a young daughter, if we had continued the pregnancy. I wonder if we made the right decision for our baby and for our family.

The issues surrounding fetal anomalies and pregnancy termination are currently being debated with urgency and vigor on a national level. Ohio is poised to become the second state in the nation to ban abortion when Down Syndrome has been diagnosed prenatally, following North Dakota, which prohibits termination of any pregnancy with a "genetic abnormality" or "a potential for a genetic abnormality." Legislation has been introduced across the country prohibiting termination prior to 20 weeks gestation, often without exception for fetal anomalies. In many states, terminations can now be funded only with private insurance and if an "abortion rider" has been purchased in advance.

As advances in perinatology and neonatology expand the boundaries of what is possible in the perinatal period, the ethical questions that arise continue to elicit passionate, often diametrically opposed opinions. How do we define the ethical use of assisted reproductive technologies and prenatal diagnostic techniques? What is the role of pregnancy termination for fetal anomalies in medicine and in society? What is the scope of "end-of-life" decision-making in the perinatal period? What are the roles and obligations of physicians, and pediatricians in particular?

A paradigm shift is needed in order to forge a more sustainable and ethical approach to these complex and multifaceted issues. First, I propose that the distinctions often used as ethical and practical guideposts in the perinatal period - viability and pre-viability, fetus and neonate - be deemphasized in the setting of fetal anomalies. These distinctions are intuitive, morally rooted, and frequently helpful, but a dogmatic reliance on such dichotomies contributes to suffering and inequality.

Second, the concept of "best interest" in these cases must be explicitly broadened to incorporate the significance of the fetus's mother, family, and larger community. Third, the tension between the existence of certain perinatal interventions and decisions to use, forego, or withdraw them must be more transparently addressed. Finally, pregnancy termination must be recognized as falling within the scope of end-of-life decision-making and palliative care for some families, while acknowledging that this raises difficult questions about the roles and obligations of physicians.

Perinatal policy and practice focus strongly on the concept of viability, the potential to survive outside of the uterus. While there is robust discussion of certain ethical issues related to viability, such as decision-making at the margin of gestational viability, what is less explicitly discussed is the utility of the concept at all in the context of fetal anomalies. For fetuses with severe anomalies, extensive medical intervention may be required to allow for survival outside of the uterus. The use of such interventions, and the associated risks and benefits, carry different meanings and implications for families. Some treatments utilized in the perinatal period, such as neonatal dialysis, fall into a gray zone regarding when they are appropriate or obligatory to offer, and when they may be ethically declined. Thus, when survival may depend on extensive medical intervention with an uncertain risk-benefit profile, the concept of viability is only marginally useful.

From a practical standpoint, when pregnancy termination is restricted beginning at 20 weeks gestation or "viability," this is precisely the point at which many major anomalies are being diagnosed, as professional guidelines recommend a fetal anatomic survey at 18 to 20 weeks gestation. Families may be forced to make extremely high-stakes decisions under severe time pressure, with incomplete information. Delaying a decision in order to observe more of a condition's natural progression, to pursue further testing, or simply to reflect, may result in a drastic reduction in available choices. There is also the potential for significant socioeconomic and educational disparities, as individuals with lower health literacy may not comprehend the potential significance of obtaining timely prenatal diagnostic testing, and families may not have the resources to travel in a timely manner to obtain the desired medical care.

Just as viability is viewed as a critical turning point, a firm distinction is drawn between the fetus and the neonate. As a society we generally afford increasing recognition of personhood and rights with advancing gestational age and with birth, an approach that is overall reasonable and principled. A more humanistic and less mechanical perspective, however, suggests that while a neonate may technically be physically independent, the infant may be considered inextricably intertwined with its mother, its family, its community, and its culture in many ways. This is especially salient when considering a neonate with severe anomalies, whose survival depends on replacing the prenatal physiological dependence on its mother with the postnatal reliance on intensive medical care.

Continuing a pregnancy complicated by severe anomalies can have significant physical, psychological, and socioeconomic effects on mothers and families. In addition to concerns about the primary experience of their child, families may have concerns about the non-trivial risks associated with pregnancy and delivery, the emotional impact of continuing a pregnancy with a severely ill fetus, the psychological impact on siblings, logistical and financial details related to the need for intensive medical care at a tertiary care center, and the overall wellbeing of the family. Different families prioritize these factors differently, but the reality is that these perinatal decisions do not occur in a moral vacuum. For some families, the "best interest" of the fetus rightfully includes careful consideration of the best interest of the mother and the family.

Perinatal hospice and adoption are sometimes proposed as more just alternatives to pregnancy termination, often with reference to beliefs about fetal capacity for pain, establishment of personhood, and societal discrimination against disability. Conversely, many arguments in favor of more liberal abortion policy deemphasize the perceived humanity of the fetus. What all of these arguments miss, however, is that for many families, the humanity of the fetus with severe anomalies is a primary motivating factor in considering or choosing termination. For these families, termination is not a choice that reflects a devaluing of the fetus, or a disavowal of the worth or humanity of individuals with medical disabilities or differences. Instead, it is a decision that represents a complex calculus about how to most humanely consider and balance consideration for the fetus with considerations about other members of the family. Advocating for compulsory pregnancy continuation is based on a belief that life and survival must be valued above all else, a belief that is not universally shared and that strips parents of the autonomy to make medical decisions for their fetus based on their careful determination of the best interest of their fetus and their family.

Some point to the fundamental difference between withdrawing or withholding life-prolonging care, versus pregnancy termination as an active procedure intended to cause fetal demise. The accusation of "playing God" is sometimes leveraged. The provision of intensive perinatal care is not a passive act either, however, and in that sense attempting extensive intervention could also be considered "playing God." The potential pain and suffering associated with life-prolonging medical interventions is not incontrovertibly more noble or just than the potential pain and suffering associated with termination.

For some families, utilizing available medical options is a meaningful and valid choice. Life-prolonging interventions may allow a family to gain more information through a trial of therapy, to prevent complicated grief about "giving up without trying," or to shape the quantity and quality of their time with their child. A recent study by Annie Janvier and colleagues of families of children with trisomy 13 and 18 concluded that many families find deep meaning and satisfaction in pursuing certain life-prolonging measures. This is an important challenge to traditional paternalistic assumptions that there are some lives that are "not worth living." However, there is a risk of idealizing and glorifying such decisions, thereby perpetuating deeply entrenched forms of sexism and discrimination, as the meaning, satisfaction, or stress derived from such situations may be vastly different for a single mother with limited resources and secular beliefs, as compared to a religious, financially comfortable two-parent household with a mother who does not work outside the home.

What, then, is the role of the pediatrician in all of this? Reasonable individuals, physicians and non-physicians alike, possess vastly different opinions about fetal anomalies and pregnancy termination, opinions rooted in different ideas of compassion and justice. At times, the primary role of the physician may not be to heal, or save, or fix, but rather to help families navigate these murky and painful boundaries. We made the decision for our son to live and die knowing only the warmth and safety of my body; for us, it was the most right and just decision in a situation that was impossibly wrong. As physicians, we must vehemently defend the rights of families to make their own decisions; to define what constitutes the "best interest" of their own fetus and family; and to guide, in concert with the medical team, the meaningful use of medical intervention, whether life-prolonging or life-ending.

Second prize winner: "The Starfish Problem"
Bryan Sisk, MD
Pediatrics Resident, PL3
St. Louis Children's Hospital

The Starfish Problem

"Me duele los riñones," said the weathered old woman. Her face winced with deep lines as she pointed her thumb toward her lower back where she believed her kidneys were. She was the first patient of the day in the small Andean village, and a long line of dusty patients was already growing outside. "Aquí?" I asked as I palpated up and down her spine. She winced again as I pressed the muscles in her lower back. The diagnosis was lumbago, lower back pain, likely due to overuse and lack of stretching. Over the month of our medical mission trip, this was the most common complaint from patients. As a medical student at the time, I had memorized the spiel from my attending physician, even with my limited Spanish vocabulary. Avoid carrying heavy bags on your back. Bend with your knees, not at the waist. Stretch in the mornings and in the evenings. I showed her some exercises and asked her to practice with me. She suspiciously sat with me on the floor and twisted and turned. When we were done, I handed her a baggy of ibuprofen tablets and sent her on her way. She smiled at me as she slung a heavy burlap sack over her shoulder and walked off. I signaled for the next patient to come. It was a middle aged man with a sun-hardened face. He walked with his right hand pressed against his back, wincing as he slumped into the plastic chair across from me. "Los riñones?" I asked as I readied my next baggy of ibuprofen.

We had spent the past month visiting different villages throughout the Sacred Valley of the Peruvian Andes on a short-term medical mission, setting up makeshift clinics in whatever space was available. We had used churches, single-room school houses, even tents. Each morning, we woke before dawn, carried supplies to the bus station and caravanned to a different town. The roads were narrow and winding, offering beautiful views of the valley just beyond the thousand foot drop-offs. There were no guard rails or emergency vehicles. There was only worry and prayer.

As the day progressed, patients continued to cycle through our clinic, with diagnoses ranging from respiratory infections to arthritis to probable heart failure. One patient presented with craniofacial abnormalities and obvious developmental delays. I thought the diagnosis was untreated congenital hypothyroidism, but the parents were concerned that she was a machu, the spawn of a demon that secretly impregnated the mother while she was sleeping.

The last patient of the day was a six-year-old boy brought in by his mother for a checkup. He walked in barefoot, leaving footprints in the grime that had accumulated on the cement floor. His belly was slightly distended and he looked anxious. The mother spoke quickly and softly, but I was able to snatch the words gusano and las heces, worms in his stool. I listened to his chest, pressed on his belly and gave his mother a baggy of vitamins, anti-parasitic medicine and a toothbrush. A few minutes later as I helped to pack up our supplies, I saw the boy outside waving his toothbrush around like a sword and running it through the dirt. I wondered what would happen to these people once the baggies ran empty the next month.

With the last of the supplies packed securely in the rear of the bus, we started our three-hour-ride back to the hotel. I watched out the window as our patients from earlier in the day returned to their normal lives. Entire families worked in the fields, their eyes squinted against the sunlight and gritty wind. A man was driving a wooden plow behind two oxen. An old woman was whipping a bull that was a full foot taller than her with a long switch. One old man, probably in his seventies, was carrying a bushel of green wheat fresh from the ground on his shoulders. The bus curved around the mountainside and the town disappeared, like we had never been there. I was left wondering if we had done any good, if our efforts were worth it, or worse if we had actually caused more harm than good.

As I watched the town fade from view, an old parable came to mind. There was a beach littered with starfish that had been stranded by the receding tide. A young boy was running up and down the beach, scooping up starfish and throwing them back to the water. An old man watching called out to the boy. Why are you wasting your energy? There are too many. You can't save them. The young boy paused and stared at the old man, holding a starfish to the sky. At least I can save this one. And he tossed the starfish back to the ocean. When I had first heard this story, I thought assuredly the young boy was right. You have to keep hope in the face adversity, and you have to strive to help those in need. Lately, I had begun to wonder if the old man had a point. Or perhaps another character was needed in the story, someone to stop and ask why the starfish were being beached in the first place.

There was also a more modern and worrisome starfish problem that came to mind. In the recent past, the Great Barrier Reef off the coast of Australia was being threatened by hordes of hungry starfish that had an appetite for corals. Some well-meaning fishermen netted masses of starfish and cut them in half, trying to thin the herd. They dumped the buckets of mangled starfish back into the sea and rinsed the blood from their hands, feeling a sense of accomplishment. Little did they know that this species was able to regenerate lost limbs and each half turned into a new, whole starfish. After significant effort, they had doubled the severity of the problem. The harder they worked, the worse things got. I began to wonder if our efforts were multiplying our problems. Were there dangers of prescribing medications without any plan for follow-up? Was our medical advice incompatible with their necessary lifestyle? Did our actions undermine the authority of the local physicians who would remain after we left? Did our mere presence place a greater strain on their limited resources?

While there has been extensive debate regarding the ethics of international clinical research, discussion on the ethics of international medical volunteerism has been sparse.1-3 This disparity may be due in part to the belief that medical mission work is intrinsically altruistic and therefore intrinsically ethical.4 Unfortunately, this viewpoint does not encourage the critical ethical appraisal of short-term medical mission trips. Nor does it encourage forethought to ensure that short-term missions are not "self-serving... ineffective... or costly."4 As international health grows in popularity, short-term work is being further incorporated into all levels of medical education. Assuredly, the experiences that trainees gain from these trips will bolster their understanding of disparity in the world, and will hopefully help them to pass on the flame of altruism to their colleagues back home. However, the question remains as to whether the benefits of these trips outweigh the risks, and who is the primary beneficiary, the trainee or the patient. For example, some have questioned the ethics of medical trainees treating vulnerable populations, especially in areas beyond their expertise.5 Others have pointed to the potential lack of sustainability of changes after the mission workers leave, and question whether resources could be better utilized to foster lasting change.6 Perhaps rather than spending money on airfare, room and board for a volunteer, the money could be used to improve water sanitation efforts or could support the local physician who provides a lasting presence in the community.

As a medical trainee, it is tempting to sign up for a short-term medical mission with the assumption that our participation is inherently a good thing. We want to get our hands dirty in the gritty reality of disparity around the world. We want to be great physicians and to do great things. However, as in other parts of medical training, we ought to turn a critical eye to the risks and benefits of these interventions. Ill-conceived missions can lead to real harms: the child who becomes ill after eating an entire baggy of gummy vitamins, thinking they were candy; the post-operative patient who has insufficient follow-up for a complication; the local physician whose patients prefer to be seen by the foreign doctors. Good intentions are not enough to ensure good outcomes.

Certainly, there are some short-term medical missions that are well-structured and part of a greater plan that can lead to positive changes, but just as assuredly there are poorly organized, poorly conceived trips that harm the very people they are trying to help. As such, there are several important questions that ought to be asked prior to planning and implementing these trips. Was the mission planned in collaboration with the community being served? Will our presence help the community, or will it place an undue burden on already scarce local resources? Will any changes be sustainable after we leave? How will we know if we are helping or hurting? Is this primarily for us or for them?7 Although this conversation has begun to smolder in the literature, it must become louder and more inclusive in order to ensure the realization of our good intentions. Careful ethical scrutiny in the planning and implementation of short-term medical missions can help to ensure that our efforts are not for nothing. It is one thing to throw a few starfish back to the sea. It is quite another to impart real and lasting change.

  • Levine C. Placebos and HIV. Lessons learned. Hastings Cent Rep. 1998;28(6):43-48.
  • Crigger BJ, National Bioethics Advisory Commission. National Bioethics Advisory Commission Report: Ethical and policy issues in international research. IRB. 2001;23(4):9-12.
  • Crump JA, Sugarman J. Ethical considerations for short-term experiences by trainees in global health. Jama J Am Med Assoc. 2008;300(12):1456-1458. doi:10.1001/jama.300.12.1456.
  • DeCamp M. Ethical review of global short-term medical volunteerism. Hec Forum Interdiscip J Hosp Ethical Leg Issues. 2011;23(2):91-103. doi:10.1007/s10730-011-9152-y.
  • Langowski MK, Iltis AS. Global health needs and the short-term medical volunteer: ethical considerations. Hec Forum Interdiscip J Hosp Ethical Leg Issues. 2011;23(2):71-78. doi:10.1007/s10730-011-9158-5.
  • DeCamp M. Scrutinizing global short-term medical outreach. Hastings Cent Rep. 2007;37(6):21-23.
  • Suchdev P, Ahrens K, Click E, Macklin L, Evangelista D, Graham E. A model for sustainable short-term international medical trips. Ambul Pediatr Off J Ambul Pediatr Assoc. 2007;7(4):317-320. doi:10.1016/j.ambp.2007.04.003.

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