Contemporary Pediatrics asked pediatrics and ethics experts to candidly weigh in on some of the foremost moral and ethical issues confronting pediatricians and pediatric healthcare providers today.
Gary Freed, MD, MPH
Bernard A Cohen, MD
Geoffrey Miller, MD, MPhil, MA, MBCHB, FRCP, FRACP
Steven M Selbst, MD
Laura A Miller-Smith, MD
Pat F Bass III, MD, MS, MPH
Andrew J Schuman, MD, FAAP
Michael S Jellinek, MD
Donna Hallas, PhD, RN, PPCNP-BC, CPNP, PMHS, FAANP
What ethical dilemmas keep you up at night?
For this inaugural issue addressing ethics in pediatric medical care, Contemporary Pediatrics asked pediatrics and ethics experts to candidly weigh in on some of the foremost moral and ethical issues confronting pediatricians and pediatric healthcare providers today. Here are their thoughts on these sensitive topics. We welcome your thoughts as well. Write to us at email@example.com.
Gary L Freed, MD, MPH
THE DILEMMA: Racial, ethnic, and economic health outcome disparities among US children
I think the biggest ethical issue for pediatricians today is the racial, ethnic, and economic disparities in pediatric outcomes for health and healthcare in the United States.
There is lots of research that minority and disadvantaged children have worse outcomes in many different arenas, including infant mortality, the care of some chronic illnesses, and a variety of other conditions. We also know that low-income children do worse in many aspects of healthcare than higher-income children. This could be related to opportunities for utilization of healthcare services, the environment in which children are raised (which may include exposure to violence, toxic substances, and so on), and more.
All those factors impact our ability to create the next generation of healthy persons in our country.
We have an ethical responsibility to try and ensure that children have the greatest opportunity to have successful childhoods and become healthy adults. We know right now in our country that not all children have that same opportunity. It’s really a matter of working to try and eliminate the social and economic disparities that we know already exist.
Bernard A Cohen, MD
THE DILEMMA: Out-of-control drug pricing for commonly prescribed medications
In the last decade or so, prices for medications that I commonly prescribe-many of which have been out for 20 or 30 years and are generics-have exploded. Sometimes, these are commonly used drugs for treatment of general skin conditions. I’ve talked with pediatricians who are experiencing the same issue for medications they prescribe.
Examples in pediatric dermatology are oral erythromycin and topical agents, such as clobetasol, a class-1 high-potency topical steroid.
The ethical dilemma is real in terms of getting patients proper care when the prescription agents that we’re writing for have become prohibitively expensive. Outrageously expensive.
THE DILEMMA: Disagreements among patients, families, and pediatricians on diagnoses, treatments
It can be dicey when we make a diagnosis and recommend treatment, and a parent doesn’t buy into the idea. It gets even more complicated when we have a teenager-a minor-who is cognizant of what’s going on and may feel very differently than the parent about the diagnosis and treatment.
That’s an ethical dilemma because we want to treat the child.
Scenarios range from patients with life-threatening disorders to recommendations regarding immunizations.
One of the goals of the American Academy of Pediatrics (AAP), which we all support very strongly, is the immunization issue and immunizing kids based on recommendations. Having parents who for some reason do not want their otherwise healthy children immunized, even though we expect those children to have appropriate responses to immunizations, is a real dilemma.
There’s disagreement about whether pediatricians should continue to treat children whose parents disagree with guideline-based recommended treatment. I think sometimes that pediatricians can protect patients more if they maintain relationships with these families and continue to care for those children. However, I think it’s also important to make it clear that we don’t buy into the idea that immunization is dangerous and inappropriate in an otherwise healthy child, and that not immunizing the patient poses a significant risk to the child.
THE DILEMMA: Prior authorization
We’re spending more and more time working on prior authorizations for what should be considered to be medically appropriate procedures, and there’s no question that along the way withholding intervention can result in significant morbidity.
Geoffrey Miller, MD, MPhil, MA, MBCHB, FRCP, FRACP
THE DILEMMA: Ethics of death by neurological criteria
Some background on the case to which Dr. Miller refers: Jahi McMath was 13 years old in December 2013 when she was declared brain dead after complications from tonsil-removing surgery performed at a children’s hospital in Oakland, California.
A California coroner issued Jahi’s death certificate the following month, but Jahi’s family saw life in the child, who continued to breathe and whose heart continued to beat with the help of a ventilator. The courts in California agreed that the family could transfer Jahi to New Jersey, where one is allowed not to follow the death by neurological criteria.1
Pediatric neurologist D. Alan Shewmon, MD, was among those who believed Jahi wasn’t in fact brain dead. Video documentation helped to demonstrate that Jahi was capable of following some commands and was minimally conscious.2,3
Jahi died by cardiovascular criteria in a New Jersey hospital in June 2018 and was put to rest. Dr. Miller describes the ethical dilemma next.
When somebody is declared brain dead, the artificial respiration is removed and then they can have organ transplant. If death by neurological criteria is put into doubt, this puts a heavy strain on intensive care units that would have to wait for the heart to stop, and it may not stop for years. It also would put a strain on organ donation for children.
There were videos of Jahi responding to commands. There was a recent conference at Harvard where these videos were shown. When you see these, they are very compelling. This was not an accidental movement or automatic reflex.
The ethical point of this is that the whole strength of death by neurological criteria is based on irreversibility. Once you remove that confidence in irreversibility-irreversibility particularly related to consciousness-then you put the whole concept of death by neurological criteria to doubt. If you put that concept in doubt, then you put an added strain on the intensive care units and, of course, organ donation.
1. Schmidt S. Jahi McMath, the Calif. girl in life-support controversy, is now dead. Washington Post (online). June 29, 2018. Available at: https://www.washingtonpost.com/news/morning-mix/wp/2018/06/29/jahimcmath-the-calif-girl-declared-brain-dead-4-years-ago-is-taken-offlifesupport/?noredirect=on&utm_term=.c3bb1ed5378d. Accessed March 14, 2019.
2. Lewis A. Reconciling the case of Jahi McMath. Neurocrit Care. 2018;29(1):20-22. Available at: https://link.springer.com/article/10.1007%2Fs12028-018-0561-5. Accessed March 14, 2019.
3. Shewmon, DA. Truly reconciling the case of Jahi McMath. Neurocrit Care. 2018;29(2):165-170. Available at: https://link.springer.com/article/10.1007%2Fs12028-018-0593-x. Accessed March 14, 2019.
4. Cleveland Clinic Health System. Death by neurological criteria policy. In: RI 116-Death by neurological criteria policy-CCHS. Published May 28, 2016. Revised May 23, 2013.
Steven M Selbst, MD
THE DILEMMA: Disclosing medical errors
Physicians make errors all the time and don’t necessarily disclose them to families. We weren’t trained to do that.
Disclosing medical errors continues to be an ethical dilemma for us, but we are making progress. We’re starting to include that training in residencies and even at some medical schools.
Many hospitals now have a “blameless” environment where people are encouraged to disclose errors. In my hospital, it is a policy that we should disclose an error to a family, but not all hospitals have an environment where the physician is encouraged to disclose an error. If physicians feel they are going to be punished for making mistakes, they’re more likely to hide errors.
I think we still have an environment in which it’s uncomfortable for doctors to disclose errors because they worry what’s going to happen to them as a result.
Disclosing errors is important for many reasons. It helps maintain relationships of trust with families. They’re not going to trust us if they find out that we didn’t disclose an error. Whereas some might be afraid that being honest about an error will lead to malpractice lawsuits, studies show we’re more likely to be sued if we don’t disclose the error and the family finds out a different way.
EDITORS’ NOTE: Dr Selbst wrote about this topic in his article “The difficult duty of disclosing medical errors,” published in Contemporary Pediatrics, June 1, 2003. Available at: https://www.contemporarypediatrics.com/pediatrics/difficult-duty-disclosing-medical-errors
THE DILEMMA: Who should do a procedure on a child?
An ethical dilemma that I struggle with working in the pediatric emergency department (ED) is who should do a procedure on a child?
We’re in a teaching environment, but is it ethical to allow residents or even students to do a procedure on a child, such as a spinal tap or lumbar puncture, when we know that the experienced attending could probably do it faster and maybe more accurately?
This is something that all physicians who are in academic medicine or teaching struggle with. We do want to allow the trainee to get experience and to learn how to do the procedure. You can’t become experienced unless at some point you’re inexperienced and you perform a procedure under supervision.
We’re torn between our role as a teacher and our role and obligation to the patient.
My opinion is that it’s ethical to allow the trainee to do the procedure under supervision. I think the trainee has some responsibility. The trainee has to read about the procedure and know the risks and benefits of the procedure. Ideally, the trainee should practice the procedure first on a manikin in simulation and come to the procedure somewhat prepared to do it for the first time.
The teacher has an obligation to be there with the trainee to directly supervise and to step in if it looks like the patient really is suffering or the trainee is too anxious or having great difficulty. The supervisor, again, has to allow the trainee to try and maybe to miss once or twice, but after that the supervisor or attending doctor has to be willing to step in and take over to get the procedure done.
Some parents say they only want attending doctors to do procedures, but we have a different role when we’re teaching students and residents.
The tough part is explaining this to parents. We explain to them that this is a teaching hospital, and we do need to train. That is our obligation-to train the resident or student-but we reassure [parents] that we will do everything we can to minimize the pain and inconvenience for the patient, and that we will definitely step in if it looks like things are not going well.
THE DILEMMA: What to do about patients and families who abuse providers
At our hospital, we have had (on rare occasions) patients and families mistreat physicians, trainees, and nurses. They may be verbally abusive or very rarely physically abusive. Sometimes, they’re physically threatening to the physician and trainee.
The ethical question becomes: Are we obligated to take care of the patient and the family in those situations?
We do have an obligation, I think, to the child. The child is not usually the one who is doing the abuse; it’s the parent. We don’t want the child to suffer, but we believe that a parent does not have the right to abuse a physician or nurse verbally or physically and that the hospital should protect the staff from families like that while we’re trying to help the child.
If the hospital does not protect the team, ethically, I think it is reasonable to sign off on the case or tell the family that they need to go elsewhere for care. We have suggested this action very infrequently at our hospital and our ethics team felt this was appropriate.
Laura A Miller-Smith, MD
THE DILEMMA: The importance of recommendations in shared decision-making
Recent decades have seen an erosion of physician authority, with increasing value placed on patient autonomy in medical decision-making. The consequence of this movement is a growing discomfort among pediatricians in making specific therapeutic recommendations. A current challenge for pediatricians is ensuring their knowledge and expertise remain a respected part of decision-making.
Authority may be defined as the power to make decisions and enforce obedience, consistent with the concept of paternalism. Unfettered paternalism was standard medical practice for much of history. It is now rejected with increased societal value placed on personal autonomy. However, authority may also refer to the ability to influence others because of one’s recognized knowledge. This is the meaning that physicians must embrace. We should utilize our garnered expertise to help guide parents toward decisions that serve the best interest of their child.
Shared decision-making (SDM) brings a balance to all voices and is accepted as the preferred method of physician-patient/family communication, but it is only “shared” if physicians are an active participant in the deliberations. Parents are surrogates who are expected to apply their family’s cultural values and religious beliefs. Physicians are surrogates as well, applying our medical knowledge to guide decisions for patients. Shared decision-making has been defined as “a collaborative process that allows patients, their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patients’ values, goals, and preferences.”1 We are responsible for providing the best scientific evidence for this process. We are responsible for making recommendations.
I am increasingly aware of scenarios wherein the physician has abdicated [his/her] duty to make a recommendation. It is easy to slide into the role of offering “menu items” and deferring to parents; it takes moral courage to make a strong recommendation. Indeed, it can be argued that it is our ethical duty to use our expertise and knowledge (or authority) to help guide decision-making. Moynihan and colleagues state that failure to provide a recommendation undermines autonomy by preventing surrogates from making an informed decision and places undue burden on families.2 Pediatricians have the responsibility of learning communication skills that allow them to provide recommendations during SDM, avoiding manipulation but allowing all parties to collaborate toward an optimal outcome. Learning these communication skills takes effort and practice but will improve our service to patients and their families.
1. Kon AA, Davidson JE, Morrison W, et al; American College of Critical Care Medicine; American Thoracic Society. Shared decision-making in ICUs: an American College of Critical Care Medicine and American Thoracic Society policy statement. Crit Care Med. 2016;44(1):188-201.
2. Moynihan KM, Jansen MA, Liaw SN, Alexander PMA, Truog RD. An ethical claim for providing medical recommendations in pediatric intensive care. Pediatr Crit Care Med. 2018;19(8):e433-e437.
Pat F Bass III, MD, MS, MPH
THE DILEMMA: Physician burnout and well-being
Changes in our health systems, payment structures, and the practice of medicine have made significant impacts on our personal lives, professional lives, and well-being. Given that burnout negatively impacts patient care, learning environments, personal health, and interpersonal relationships, we have an ethical responsibility to address it in our practices and health systems. I believe how we begin to address the epidemic of physician burnout will be a major challenge for the remainder of my career.
Whereas work-related stress leading to emotional exhaustion, cynicism, depersonalization, a decreased perception of personal efficacy, and decreased effectiveness has a tremendous impact on individual physicians, the downstream effect on our patients, colleagues, and systems can be exponential.
On a personal level, burnout is associated with failed relationships, depression, substance abuse, and even suicidal ideation. On a professional level, burnout is associated with job dissatisfaction, increased job turnover, increased medical errors, negative attitudes toward patients, and patient dissatisfaction.
Individually, and as part of systems, we need to institute preventive programs that identify, impact, and mitigate the factors that lead to burnout.
Given the evidence that burnout can begin early in training and occur throughout a career, our efforts need to target our colleagues beginning in medical school and continuing through our practice lifetime. The impacts and factors surrounding burnout are different through the many challenging transitions of a career, especially residency and early career. Failing to address issues of burnout early in a career allows the issues to fester and persist into practice. Failing to address issues of burnout once in practice can lead to the aforementioned complications and allows those symptoms and feelings to spread. Practices and health systems are beginning to take steps such as appointing chief wellness officers and wellness committees and implementing programs. Given the relationship between the negative impact of physician wellness on quality of care, it is important for health systems to address this issue.
However, “wellness” is not a magic pill that can be prescribed to a physician. Rather, it requires “lifestyle changes” for both the individual and health systems. Individual physicians and health systems will need to invest time, money, and resources. Both will need to commit to improving “wellness” over the long term.
Although the evidence base for physician wellness programs is evolving, it is clear such programs are needed and must be comprehensive and systematic, targeting domains that impact burnout: efficiency of practice, a culture of wellness, and personal resilience. We need to ensure that our organizations and individuals are moving toward a practice environment that better supports and enhances physician wellness.
1. Medscape National Physician Burnout and Depression Report 2018. Available at: https://www.medscape.com/slideshow/2018-lifestyle-burnout-depression-6009235 - 1. Accessed March 20, 2019.
Andrew J Schuman, MD, FAAP
THE DILEMMA: Too much regulation; too little control
In my view, it is an ethical priority that we reduce the control that insurance companies, pharmaceutical companies, and the government have over our healthcare system! Decades ago, in simpler times, parents paid their office bill at the time of service and if they had insurance, they would submit a copy of their superbill for reimbursement. Most medications were affordable, and we knew very little of the concept of prior authorizations, managed care, or claim denials. We also wrote very brief and often legible notes in our paper charts.
In today’s world, pediatricians and staff wrestle with requests for prior authorizations, challenge denied claims, prescribe lower-cost medications, and push buttons in electronic health records (EHRs) to justify charges (Contemporary Pediatrics, August 1, 2017).1 As a consequence, physicians are overwhelmed and either retire early or adopt alternative models of healthcare delivery.
The transformation of our healthcare system has been in part due to the greed of hospital systems, as well as physicians and pharmaceutical companies. Over the years, our national healthcare costs have risen astronomically, from a meager $75 billion in 1970 to over $3.5 trillion in 2017, according to the Kaiser Family Foundation!
In an attempt to control and reduce healthcare costs, the government has repeatedly stepped in to regulate medical services. In addition, insurance companies control what services we can provide as they hold the purse strings. As a consequence, what used to be an effective and kind healthcare system has become so mired in a muck of regulations and cost control that we find it difficult to do what we do. These days, many patients with high-deductible, commercial health insurance think twice before seeking medical care, and primary care physicians are poorly reimbursed for providing services to those patients who have government insurance.
There may be some light at the end of the tunnel, because physicians and patients are desperate for an ethical healthcare system, one free of impediments to care. At the state level, physicians are pushing for reform via legislative mandates that limit control of insurance companies. We have already seen state laws limiting maintenance of certification requirements and facilitating access and payment for telehealth services.
In order to become “pretty good pediatricians”2 (see Contemporary Pediatrics, January 1, 2019), we need to push for reforms that will limit the control of insurance companies and reduce the cost of medications. Perhaps, one day soon, our healthcare system will be healthy once again.
1. Schuman AJ. Restore “honest” medicine. Contemp Pediatr. 2017;34(8):40-42. Available at: https://www.contemporarypediatrics.com/modern-medicine-feature-articles/restore-honest-medicine. Accessed March 14, 2019.
2. Schuman AJ. How to get from PCP to “PGP.” Contemp Pediatr. 2019;36(1):47-48. Available at: https://www.contemporarypediatrics.com/pediatric-practice-improvement/how-get-pcp-pgp. Accessed March 14, 2019.
Michael S Jellinek, MD
THE DILEMMA: Maintaining confidentiality when treating teenagers
Confidentiality when treating adolescents is one of the most difficult ethical territories in pediatric primary care.
Although state laws vary by age and selected circumstance (such as treating sexually transmitted diseases), parents have broad rights to access their teenager’s medical record and ask their pediatrician almost any question about their child’s visit.
Pediatricians know that to provide comprehensive, high-quality care to a teenager, honesty and trust are essential. Some pediatricians try to manage this delicate ethical area by letting parents know what to expect and the practice’s policies well before their patient is a teenager. The pediatrician will begin to ask parents to leave the exam room for part or most of the visit. They will let parents know, sometimes in a written contract, that they will discuss sensitive, age-appropriate topics that are part of optimizing their child’s health, including substance use, use of technology, sexuality, emotional stress, depression, risk-taking behavior, and more.
Asking about sensitive areas almost immediately raises these questions: “What will you tell my parents?” “What will go into the record?” “What is the adolescent’s right to privacy?”
This is a grey, multifactorial area until reaching the age of 18 years or being emancipated. Age 13 is different from age 17. One 16-year-old can be very different from another in terms of maturity, social circumstances, and experiences. How risky is the behavior? Mild with limited substance experimentation? Moderate in terms of sexual activity? High with heavy alcohol use and driving? Should parental history or likely reaction impact the pediatrician’s decision about confidentiality? What if the parents are especially strict or punitive? What if there is a family history of alcoholism and the private information concerns a young teenager getting drunk?
My experience as a psychiatrist tells me pediatricians face emotional factors as well. Keeping information confidential from parents often evokes anxiety. Is the teenager being completely honest with me or is the risk higher than presented? Should I tell? Am I accepting too much responsibility? Will the parents be angry with me if they find out? Is the gain in trust and communication sufficiently beneficial to outweigh the risk?
Inevitably, personal questions come to mind. What if I were the parent and the information was about my teenager? What private experiences did I have as a teenager? Did I trust my pediatrician?
As with most ethical dilemmas, there are no easy judgments. Parental preparation and practice policies will help. When facing a difficult choice, try not to worry alone. Talk to a respected colleague. Recognize there is some risk, some gain, and some ambiguity.
Donna Hallas, PhD, RN, PPCNP-BC, CPNP, PMHS, FAANP
THE DILEMMA: Pediatric research and medication safety
In the United States, I believe, and the literature supports, that we have major ethical issues specific to the pediatric population surrounding research in medication safety, efficacy, and prescribing practices. In addition, there are significant ethical issues related to medication administration with parents who object to, resist, or refuse medications shown to be beneficial for the health and well-being of their infants/children/adolescents.
It was only in recent years that the National Institutes of Health (NIH)1 required drug companies to include children in drug testing trials to determine the safety, effectiveness, benefits, and short-term outcomes for administering specific medications to children. Prior to that time, only adults were included in clinical trials, and dosing for children was estimated based on adult data. Informed consent and assent are important considerations when including children/adolescents in clinical trials.
1. Podany AT. Ethical considerations in pediatric research. In: Research and Study Designs in Pediatrics. PedSAP 2017 Book 1. Available at: https://www.accp.com/docs/bookstore/pedsap/ped2017b1_sample.pdf. Accessed March 14, 2019.