Ethics Committee

Introduction

The APSA Ethics Committee will provide education for our colleagues and trainees on a variety of ethical issues in pediatric surgery practice.

The Ethics Committee provides education that is relevant to the active practice of pediatric surgery. We specifically aim to address issues that residents and fellows may find challenging as well as ethical issues that confront pediatric surgeons who have completed training. We provide resources for resolution of ethical dilemmas and a forum for discussion of particular cases.

A list of the current Ethics committee members can be found on the Ethics committee page on apsapedsurg.org.

see also the Pediatric Surgery Not a Textbook topic on Ethics

Ethics Position Statement

Vision Statement

Ethics is a dynamic and evolving normative science based in philosophy, spirituality, science and belief. The Ethics Committee will keep the APSA membership up to date regarding ethical challenges and management approaches pertaining to the care of pediatric patients as well as the ethical standards for pediatric surgical practice. The Committee has a role in the promotion of inclusion, equity, diversity and professionalism among the APSA members and leadership. This Committee contributes educational curricula and resources in clinical medical ethics for surgeons in training as well as for those in practice. The Committee will collaborate with other medical societies to promote equitable and ethical advocacy and healthcare policy for children. Collaboration with other APSA committees as well as with national and international organizations will provide opportunities to develop programs, guidelines, research, educational activities and wellness resources with a focus on ethics.

Mission Statement

The APSA Ethics Committee is committed to the fundamental principles of ethics in all aspects of pediatric surgical practice as well as among healthcare professionals. The committee is a resource for APSA members who are seeking ethics education, guidance for ethical challenges in patient management and a voice for the highest quality, equitable healthcare for children.

Videos

video link to the Ethics committee session for the APSA 2020 virtual meeting on Ethics in the COVID-19 Era

Ethical Topics in Pediatric Surgery

Conflict Resolutions/Refusal of Treatment

In the emergency department a child presents with hematuria and the examining physician feels a mass on the left side of the abdomen. An ultrasound reveals an eight by nine cm left renal mass with a small amount of free fluid in the abdomen. After much negotiation, the diagnosis of a probable Wilms tumor is confirmed by computerized tomography scan. The tumor shows recent evidence of intratumoral bleed but no rupture. There is no evidence of tumor in the left renal vein and there is no distal metastasis. You are called to see this child planning ot recommend nephrectomy but you learn from the emergency pediatrician that the mother who is accompanying the child is refusing any further treatment. Both parents are members of a community who believe that "God decides the faith of his children." The community does not believe in modern medicine - especially something as aggressive as surgery.

The mother wants to leave the emergency room stating that she needs to go home to take care of the other children. She will pray with her community for the tumor to resolve. You convince the mother to talk to you a little longer. You learn that she has four other children, aged one to nine years. She has also lost two pregnancies in the first trimester. They live in a community setting with their extended family. Her husband is a woodworker and she works in a bakery. The children are cared for at the community child care center during the day. All her children are otherwise healthy except for a few minor ailments. None of them have been immunized.

The community is led by an elected patriarch who makes all the important decisions for the community. There are no televisions or telephones in the community except for the phone at the patriarch’s house. Members of the community who do not follow the patriarch’s advice are ostracized by the community. George’s mother is obviously a loving one. She reassured George who is quite frightened by the emergency room setting. George is obviously very attached to his mother. Even though you have built a good rapport with George’s mother she is still adamant that she has to leave.

What should you do in this situation?

Who would you contact to help with the situation?

Should you allow George to go home?

What is in George’s best interest? (Explore the impact of your answer on George and his family in this context).

Should you recourse to Children’s Aid/Protection?

What are the criteria’s to call Children’s Aid/Protection in your state/province?

In your state/province have the courts ruled in favor of parent’s refusal of treatment on the basis of religious beliefs?

How can you resolve conflicts with families when involved in their care?

Who can help?

Relevant articles and resources

[1][2][3][4][5][6][7][8][9][10][11][12][13][14][15]

The Mature Minor

Cynthia is a 15-year old girl who has now been hospitalized for three weeks. She presented to the hospital with bleeding per rectum for two days. In the previous weeks, she had crampy postprandial abdominal pain and lost 15 pounds. She was admitted to the gastroenterology service who diagnosed fulminant ulcerative colitis. She has been started on high dose steroids, to which immunosuppressants were added, with no change in the bleeding. Over the last three weeks, Cynthia has received three transfusions of blood and her hemoglobin is now 6.5 gm/dl. The pediatricians have ordered another 15 ml/kg transfusion. You have been consulted for a subtotal colectomy and ileostomy. Cynthia was quite shocked by what she heard and after sobbing uncontrollably for an hour has decided quite adamantly that she will not have the surgery.

Talking with Cynthia, you learn that she is quite an active girl. She swims competitively at the national level and was an alternate for the Olympic team. Her specialty is the 100 meter backstroke. She also does the backstroke for the 400 medley. Cynthia was training four hours a day every day except Sunday until she was hospitalized. Cynthia also does some modeling. She has mostly worked at the local level, but she won a contest last September which gave her a photo shoot with a teen magazine. Since then she has had a few calls from bigger modeling agencies trying to recruit her. The modeling career was put on the back burner with the preparations for the Olympics.

Cynthia is quite upset with her appearance. The steroids have made her gain weight and she has started to get acne. She says she doesn’t recognize herself in the mirror. Her mother says that she noticed over the last few days that Cynthia is no longer interested in grooming herself. You spend a long time discussing the indications and the surgery itself including future J-Pouch and possible complications. After all the discussion, Cynthia still refuses surgery. The parents agree that surgery is what should be done.

Who should decide whether Cynthia will undergo the surgery or not?

What is the definition of the mature minor in your state/province?

What factors should be considered in the decision making and how should these factors be weighed (e.g. Cynthia’s age, maturity, understanding of the procedure and its consequences)

Should you delay surgery in an attempt to allow Cynthia some measure of autonomy?

Explore more fully the reasons for Cynthia’s refusal?

How could you assess Cynthia’s capacity?

Given concerns regarding the effects of steroids and signs of depression is Cynthia able to make an informed choice?

Should our criteria for competency be more or less stringent depending on the type of case?

Is there any reason not to respect the minor’s wishes?

Relevant articles and resources

[16][17][18][19][20][21][22][23][24][25][26][27][28]

Summary of Adolescent Consent Laws by State

Neonatal/end of life care

Caroline was born at 28 weeks gestational age to a 35-year old woman. Caroline is the result of in vitro fertilization after three unsuccessful attempts. Her birth weight was 1200 grams. The initial physical examination revealed a tiny female infant with marked bruising. She appeared blue and limp and was gasping for air. Initial resuscitation included endotracheal intubation, mechanical ventilation, volume transfusion and inotropic support to maintain adequate cardiorespiratory function.

Caroline was immediately admitted to the neonatal intensive care unit. Her primary diagnosis was respiratory distress syndrome. She required fairly high ventilator rates and pressures to maintain adequate oxygenation and ventilation. She required surgical ligation of the patent ductus arteriosus within the first week of life. Cranial ultrasounds performed at day three and 14 of life revealed the presence of bilateral Grade III intraventricular hemorrhages.

The parents were kept informed of their daughter’s progress throughout these first weeks of life. They were assured that important decisions would be made only when consensus was reached between them and the health care team. Both parents asked many questions about how the medical staff would know if their daughter was getting worse or perhaps even dying. On day 17 of life, Caroline started to have increasing residual of her nasogastric feeds. Her abdomen was distended and feeds were stopped.

Abdominal radiographs show diffuse pneumatosis and venous portal air and you are called to assess the baby. On physical exam, the baby is not active, the abdomen is red and diffusely tender. She is started back on pressors but her respiratory status is unchanged. You discuss the situation with the parents. You explain to them that you think Caroline needs an operation. She has necrotizing enterocolitis which is likely perforated. You are concerned it involves a long segment of her intestine. You are planning a bowel resection with a likely stoma. You discuss with them that if too much gut involved is removed, Caroline might suffer from short bowel syndrome. You explain to them about parenteral nutrition and its associated liver injury and the possibility of small bowel transplant but that most babies this size do not survive long enough to get an organ. Both parents are upset but understand the gravity of the situation. The mother can not think of her daughter dying. The father expresses that he doesn’t want his daughter to suffer as he thinks she has undergone quite a bit already. He states that he would want bowel resected only if there was a good chance that Caroline will not suffer from short gut syndrome. Hearing this the mother runs out of the room crying.

What would you do at this point? Who would you call upon to help at this point?

In the OR, you find that most of Caroline’s small bowel and proximal colon are dead except for 10 cm of proximal jejunum.

What would you do at this point?

What is in the best interest of the child? Should those override those of the mother?

How would you discuss the sanctity of life and quality of life in this case?

Are there lengths of viable/necrotic bowel that would make you feel that there is no ethical dilemma involved?

In the operating room, the baby becomes more unstable. You come out to talk to the parents about what you have found at laparotomy and ask the neonatologist to join you. You advise them that you think you should not proceed with resection and keep the baby comfortable as the disease is disseminated. Caroline’s father indicates that he is comfortable with the decision to withhold treatment; he feels that it is wrong to prolong his daughters suffering. In face, he said that he would have difficulty visiting his daughter if treatment was not withheld and she continued to suffer. Caroline’s mother remained adamant that life was important at all costs. She explained that this belief was rooted in her religious teaching and was not negotiable. She would not expand on the source or the nature of these beliefs.

What should the health care team do when parents disagree about holding/withdrawal of life sustaining treatment for their child? Is it morally acceptable to proceed with the consent of one parent?

Are there morally defensible limits to parental decision-making?

How should the health care team respond to the mother’s claim that her belief are rooted in her religious teaching when she will not (cannot) explain these beliefs? Would it matter if the mother’s beliefs were not rooted in religious teachings but simply were "her beliefs"?

Relevant articles and resources

[12][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46]

Surgical error

Simon, a 3-month old, presents to the emergency department with an incarcerated right inguinal hernia. Simon was born at term and the mother recently noticed an intermittent bulge in his right groin. His hernia is the size of a golf ball and tender. The skin is red. You are able to reduce it after sedation with difficulty. You explain the procedure to the parent and the risks of the surgery. At the time of surgery, the tissues are still very inflamed and after some dissection, you realize that the vas has been cut. You tag the two ends with nonabsorbable monofilament suture and complete the hernia repair.

What should you tell the parents postoperatively?

What are your institutional policies about medical/surgical error?

Five-year old Marcy is admitted with perforated appendicitis. She is worked up with an ultrasound and labs prior to surgery. The usual preoperative antibiotics are ordered. The open appendectomy is uneventful but on postoperative day two, Marcy starts complaining about increasing pain in her incision. After examination and work up, Marcy is found to have necrotizing fasciitis which needs immediate debridement in the operating room. You explain the situation to the parents who are quite upset. Marcy is left with a debridement wound measuring 5 x 3 cm. It will take a while for the wound to close. Marcy will most likely need more surgery for hernia repair and wound closure. Reviewing the chart, you notice that Marcy did not receive her preoperative antibiotics.

What would you divulge to the parents?

What would be your approach to minimize conflict in this situation as this is going to be a long admission? Who else would you get involved?

If the situation becomes conflictual with the parents, what would be your approach?

Discuss one conflictual relation with parents at your institution and how it was resolved.

Relevant articles and resources

[47][48][49][50][51][52][53][54][55]

Multiculturalism

Stanislav is an 18-month old boy who presents with two months of abdominal distension. On ultrasound he is found to have a large central lesion in his liver consistent with hepatoblastoma. On further work up he was found to have an alpha fetoprotein of 7500 ng/ml. Percutaneous biopsy confirms the diagnosis of hepatoblastoma fetal type. Computerized tomography reveals a 14 x 8 cm mass involving the confluence of the portal veins. The right and left hepatic veins are very close to the tumor and the middle vein is not seen. There is no evidence of metastasis. The tumor is felt to be unresectable. Stan is started on a regimen of chemotherapy which he is tolerating well. After four cycles of chemotherapy, his tumor has decreased in size but still abuts the portal and hepatic veins and he is referred for liver transplant.

You meet the child as the liver transplant surgeon. He is the youngest of four. The mother and father are quite informed as far as the hepatoblastoma is concerned. You give them information on liver transplantation including listing criteria, risk of surgery and long term outcome. The parents are not prepared to consider transplant. They want to try alternative therapies. The father explains to you that he sees living with a transplanted organ as a life long problem with too many complications. They would like to try herbal medications they have found on the internet. They want to combine Essiac and Yakolife alternative therapy with a strict diet of organic food, deep sea fish and fruit juices. They are confident that it will cure the tumor and avoid the need for transplantation. They are willing to reassess if the tumor starts growing on imaging or the αFP starts rising. They are from a Slavic country and are first generation immigrants to this country. They have two other children who are healthy and Stanislav looks like a very well cared for child. Father owns his own business and the mother stays home with the children. They have no family in Toronto. They have never missed a medical appointment and are very compliant with the therapy. When further questioned, the father tells you his family history of an uncle cured from metastatic disease without chemotherapy and a father who was the only one to come back from an ambush during the war. He feels in his heart that the impossible can happen and his family history proves it. He wants to try everything before "condemning" his son to a transplant.

What would you do at this point?

What do you think is in the best interest of this child?

How far do you think the medical team has to go in respecting cultural beliefs of a family?

Discuss pediatric surgery as a culture in itself. In the context of your pediatric surgery program, discuss the most frequently encounter multicultural issues.

Relevant articles and resources

[20][56][57][58][59]

Prenatal consultation

You are asked to see Karie in an antenatal consult. Karie is an 18-year old single mother who is 19 weeks pregnant. At an 18-week ultrasound, the female fetus was found to suffer from gastroschisis. There is a moderate amount of bowel exteriorized and there is no bowel dilatation. The amount of amniotic fluid is normal and the fetus has a normal biophysical profile. Karie is just finishing high school. She wants to go to university and become an engineer. She has been in a relationship on and off with her boyfriend for two years. He and her mother are here for the consultation. Karie lives at home with her two younger siblings and their parents. Both of her parents are working; father is an electrician and mother is a secretary. The pregnancy was not planned and with the news of the gastroschisis, Karie thinks she wants to terminate the pregnancy. She has agreed to meet with a pediatric surgeon to know more about this condition before she makes her final decision.

What would you tell her?

What are the important facts she needs to know to make an informed decision?

Who is your patient during this consultation?

Karie’s mother asks you if it was your child, what you would do. What would you answer?

Discuss the dilemma of caring for a mother as a pediatric surgeon. How do you reconcile your own beliefs and this young mother’s decision?

Relevant articles and resources

[43][60][61][62][63][64]

Child Abuse

Scott is a 10-year old boy who is brought to the emergency department because of fecal incontinence. He was first seen in the community hospital and then transferred to the pediatric hospital. According to his mother, Scott has been a well child until five days ago. He was playing in the backyard with his cousin. It was muddy outside after the rain the day before and when the boys came in their pants were soaked and dirty. Scott’s mother took their pants and threw them in the wash. The boys continued to play in their underwear in the basement. As they were pushing each other, Scott fell on a bottle of wine that was in a case. He felt immediate pain and when he got up there was some stool and blood on the bottle neck. His mother had a look and could see a little bit of blood at the anus but no skin injury. The pain lasted for 30 minutes and then subsided. He did not have any abdominal pain. Scott has had no fever and his appetite is normal. He is quite embarrassed as he is incontinent and soiling his underwear when he passes gas. There is a little bit of blood on the toilet paper when he passes stool.

What points in the history would make you suspicious of child abuse?

What other questions would you ask?

What could you do to verify the story?

What are the criteria in your jurisdiction to call Children’s Aid Society/Child protection Agency?

Do some role playing around telling the parents that you are getting Children’s Aid Society/ Child Protection Agency involved. Discuss the role of the pediatric surgeon in dealing with cases of child abuse (documentation, testifying, etc.).

Relevant articles and resources

[1][65][66][67][68][69][70][71][72]

AAP Health Initiative on Child Abuse & Neglect

American Academy of Child & Adolescent Psychiatry: Child Abuse Resource Center

American Professional Society on the Abuse of Children

Child Abuse Laws by State

Pediatric surgical research

You are a member of your hospital institutional review board and you are asked to review the attached protocol: "A multi-center, prospective randomized trial to evaluate routine use of a silastic spring-loaded silo for infants with gastroschisis."

Is there equipoise in this study question? ·

Please review the protocol according to the seven requirements described in Emanual’s article (value, scientific validity, fair subject selection, favorable risk-benefit ratio, independent review, informed consent, respect for potential and enrolled subjects).

Would you recommend approval of this study in your hospital?

Martha is a 10-year old with pectus excavatum and comes to you for repair. You are part of a multicenter trial comparing the Nuss procedure to the Ravitch procedure. You explain the study protocol to the parents. The study involves the usual preoperative tests but includes a pre- and postoperative computerized tomography scan and self-image questionnaires. Both parents have read the consent form carefully and are willing to enroll Martha in the study. They think it is a good educational experience for Martha, teaching her the value of altruism. The research nurse talks to Martha to get her assent. Martha is claustrophobic and afraid of the scanner. She was brought to the scanner a few years ago when she had abdominal pain to rule out appendicitis. She required sedation to complete the study. She refuses to be part of the study. The parents are trying to reason with her and are telling her that she will be helping others. Martha still refuses.

What should you do?

How important is assent in pediatric surgery research?

Relevant articles and resources

[73]

Fertility preservation articles

[74][75][76][77][78][79][80]

Resources

Ethics committee articles of interest

American Academy of Pediatrics (AAP) Committee on Bioethics Consensus Statements

AAP Bioethics Case-Based Teaching Guides

American Medical Association (AMA) Medical Ethics

AMA Journal of Ethics

American Society for Bioethics and Humanities

bioethics.net

Children’s Mercy Bioethics Center

Ethical Challenges in Short-Term Global Health Training

Ethical Issues in Surgical Care- American College of Surgeons Book and Course Link

The Hastings Center

The MacLean Center for Clinical Medical Ethics

NIH Research Ethics

University of Washington Department of Bioethics and Humanities

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Last updated: November 26, 2020