At times during the practice of Pediatrics, clinicians must make difficult ethical and moral decisions to serve the best interest of their patients. The scenarios described below are real cases, address ethical issues unique to pediatric patients and give students the chance to develop practical approaches to these problems. A model case has been included as a rough guide for the amount of detail you should include when analyzing the ethics cases. Please note that you can also find the cases, model case and references on our website: http://www.washington.edu/medicine/pediatrics/students/overview. We have also included a list of online resources to introduce you to broader materials available in pediatric bioethics.
Your bioethical learning objective can be met by a group discussion of the cases during one of your inpatient Thursday morning lectures. Be prepared to discuss the following for each case, as everyone is expected to participate: The ethical issues raised by each case; How you would weigh the various sides of the conflicts/view the different arguments; How you would develop a plan to resolve the problem and the ethical conflicts; Which basic ethical principles would guide your plans.
You are a primary care physician who is assuming the care of a family. Upon review of the past medical history of the 1-year-old daughter, you find that she has had no immunizations although she received several well child examinations with their homeopathic caregiver. Her current medications include Chinese herbal supplements and the family follows a vegan diet. You ask the parents why your patient hasn’t received immunizations and they state, "We don’t believe in immunizations".
A 14 year-old boy is admitted to the Hematology-Oncology ward with acute lymphoblastic leukemia. He presented to the Emergency Department with pallor and dizziness and was found to have a hematocrit of 14.9%. The oncologist would like to start best available chemotherapy immediately, but the patient and his legal guardians (aunt and uncle) have made it clear both verbally and in writing that, as Jehovah’s Witnesses, they will refuse all blood products. His chemotherapy is myeloablative and will cause a further decline in his hematocrit. There is virtually a 100% chance of death with this leukemia if it is not treated and an approximately 75% chance of survival with best available chemotherapy.
Case 3 (Optional):
A 7-week old previously healthy full term Hmong female infant presents to your clinic with 24 hours of fever, mild cough, nasal congestion and irritability. Mom measured an axillary temperature of 104.5 degrees Fahrenheit this morning. On physical exam, you find the infant sleeping comfortably in no acute distress in her mother’s arms but who begins to whimper when you try to move her. Overall, her exam is non-focal with a full but soft anterior fontanelle. Initial labs show a normal white blood cell count but with a left shift, a negative urinalysis, and an elevated C-reactive protein. Mom declines any further work-up—including a lumbar puncture—saying she is “against any more invasive tests”.
Parental rights to guide care
Child Abuse reporting
Care of Adolescent Patients
Emancipated Minor, Mature Minor status
Informed Consent, Parental Permission, Child Assent
*You should arrive at the Ethics Lecture prepared to discuss both cases.
Resources in Pediatric Bioethics
Most of the questions posed by these cases are addressed in the following resources:
University of Washington School of Medicine
National Resources in Pediatric Bioethics:
Classic Textbooks on Ethical Reasoning and Pediatrics:
Jonsen, AR, Siegler, M and WJ Winslade. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 4th Ed. McGraw-Hill, San Francisco, 1998.
General Pediatric Textbook (Nelson’s, Rudolph’s etc.): Ethics in pediatric medicine
Beauchamp TL and Childress JF, Principles of Biomedical Ethics: Fifth Edition, Oxford University Press, 2001.
Lainie Friedman Ross, Children, Families, and Health Care Decision-Making, Oxford, 1998.
The parents of a 4-month-old child with bacterial meningitis refuse admission to the hospital for intravenous antibiotics. They plan to go home and pray with their congregation for the child’s health.
This case illustrates two major ethical dilemmas including: 1) religious/cultural differences between parents and physician; and 2) the right of the parents to guide the medical therapy of children. The other major element that is important in this case is providing adequate informed consent to parents.
It is generally accepted that parents who are competent (in the legal sense) have the responsibility for the well-being of their children, but parental discretion is not absolute. It is usually accepted that the best interests of the child sets the limits of parental decision making. Thus, parents have the right to direct the medical care of their children, as long as their actions do not pose a serious risk to the life and health of the child. It is also recognized that society as a whole (and the physician) has an interest in the welfare of children. Therefore, the medical indications for instituting therapy or with drawing therapy help determine some of the limits of parental decision-making. In this case, the medical and scientific evidence supporting the benefits of antibiotic therapy is clear and the results of with holding antibiotic therapy would result in harm (possibly death) to the child.
Religious freedom and tolerance for other cultures form the basis of our society, and respect for cultural and religious diversity is a highly valued trait. However, while respect for the beliefs of others may form a basis for a productive physician-patient relationship and ultimately serve the best interests of the child, at times the specific beliefs of the parents may harm the child. Again, the value of parents exercising their right to religious and cultural freedom must be weighed again the best interest of the child. "Parents are free to make martyrs of themselves, they are not free to make martyrs of their children" (Prince v Massachusetts, 1944). However, physicians must be wary when limiting parental rights because of differences in cultural/religious beliefs. Not all medical practices are firmly supported by scientific data. Physician bias as well as specific medical practices must be considered when weighing the next course of action.
Finally, one of the major responsibilities of the physician is illustrated in this case—the importance of informed consent. When making therapeutic recommendations to patients and parents, the physician has the responsibility to 1) explain the nature of the intervention, 2) explain the risks and benefits of the therapy proposed, 3) explain the risks and benefits of alternative therapies, including no therapy 4) answer any questions the patient/parent may have and 5) gauge the understanding of the consenting parties. The physician should then give a professional opinion about the alternatives and make a recommendation based on the best clinical judgment. The physician must also make reasonable efforts to insure comprehension by the consenting parties. This case illustrates the importance of careful discussion of each of the elements of the etiology, prognosis and therapeutic options for the child. Such a discussion may reveal specific concerns, misunderstandings or beliefs that can be addressed, thus reaching a mutually acceptable solution to the problem.
In this case, I would listen to the reasons the parents give for refusing therapy. I would then carefully explain the pathogenesis of the child’s illness, the expected outcomes with and without therapy and the possible long term sequelae should the child survive either with or without therapy. I would clearly state that I respect their rights as parents to guide most medical decisions and reaffirm their motivation is to care for their child. However, after confirming that they understand the nature of the illness and the outcome with and without therapy, I would tell them that I am also obligated to provide the best possible care for their child, in this case antibiotics in the hospital. I would explain that I will have to override their decision and admit the child for antibiotics, using a court order if necessary. I would also explain that this is not an arbitrary decision, but based on unequivocal scientific data. I would attempt to deliver this message in an unbiased manner and strongly encourage them to continue to add all other methods of healing they see as appropriate.
By pursuing this plan of action, I would affirm my commitment to respecting cultural differences, serve the patient’s best interests-both medically and socially, by maintaining open communication with the parents and attempt to foster an appropriate physician-patient relationship by adequately informing the parents about all the treatment options. The ethical principles of beneficence, respect for autonomy and nonmaleficence guide these actions.