1. Challenges in pediatric ethics in China:
A clinician’s observation
Li Yun1 Tang Luosheng1
Kasidet Manakongtreecheep2 Kaveh Khoshnood2 David Hersh3
1 Dept. Ophthalmology, the 2nd Xiangya Hospital of CSU
2 Yale University, School of Public Health
3 Yale University, School of Medicine

2. Conflict of Interest declaration: None

3. Case 1

4. • 4 y/o boy, retained intraorbital metallic mercury via a
broken thermometer tip – 21 days
• Increased urine mercury level with symptoms
• Patient’s parents very upset & uncompliant

5. Two Main Difficulties：
Conservative？ Surgery？
Chronic accumulation of
mercury can cause damage in:
nervous system
renal system
cutaneous……
1. High risk of failure/incomplete removal
a. mercury dispersion b. gravitous
c. tissue trapping d. unable to find b/c
2. High risk of complication
a. ptosis b. limited upgaze c. Optic nerve injury risk
3. May cause elevated mercury absorption
4. No previous reference
How to make an ethical decisions in agreement？
1、Clinical： treatment options
2、Ethics：communication

6. Pre-op
• Inform：1. Current status
2. All possible choices
3. Our recommended plan
• Communicate：
– our care about the patient
– parent’s awareness, anticipation, priority
– establish mutual trust and cooperation
• Discuss：
– Shared decision making
– Deliberative/Collaborative model

7. Operation：multidisciplinary collaboration
• Broken thermometer tip is taken out by location and marking on DSA table
• Homemade modified aspirator to suck out mercury beads(~0.75g in total)

8. Post-op
pre-op post-op

9. Discussion: Patient Communication
• Hayes-Bautista Doctor-Patient Model:
– Reaction of patients based on feelings rather than facts.
• Davis:
– Negative tension in the social-emotional area negatively influence
patients’ compliance.
• Korsch: For mothers of patients in pediatrics:
– Positive emotional attitude of the doctor lead to better compliance.
– Negative feelings from both sides lead to less compliance.
– Compliance increased when the doctor gave the mother more
information.
– Compliance decreased when doctor only asked for information.

10. Discussion: Communication with children
• The pediatric surgeon–patient relationship: sensitive approach
based on a child‘s cognitive and developmental abilities.
– Rackley and Bostwick’s Model: “child receives the first
acknowledgment and communication from the physician, follow by
having the child as a central role in the interactions with the surgeon”
– McGraw: Honesty and developmentally appropriate language reduce
postoperative stress
– Levetown: Preschoolers understand social and emotional cues

11. Discussion: Decision making
• Emmanuel: Models of Medical Decision-Making
1. Paternalistic Model – typical until about 40 years ago
2. Deliberative/Collaborative Model – Shared decision making
3. Informative/Comsumerist Model – Patient full rights in
decision making
4. Interpretive Model
• Resolution：ethical practice & communications

12. The Four Topic Chart
Medical indications Preference of Patients
1. Patient’s medical problem?
2. Goal of treatment?
3. In what circumstances are medical treatment not
4. Success probability of treatment options
5. How can this patient be benefited by medical care and how
can harm be avoided?
1. Has the patient been informed, understood the information, and
given consent？
2. Is the patient mentally capable & legally competent?
3. What the preference about treatment?
4. If incapacitated, who is the appropriate surrogate to make
decisions? What standard should govern?
5. Is the patient unwilling or unable to cooperate? why?
Quality of Life（QoL） Contextual Features
1. what are the prospects, w/ or w/o treatment, for a return
to normal life?
2. Are there bias that might prejudice the evaluation of
patient’s QoL?
3. Do QoL raises questions that contribute to change of
treatment plan?
4. On what grounds can anyone judge the undesirable QoL
effect for incapable patient?
1. professional, interprofessional or business interests that might
create COI in the clinical treatment
2. Parties other than clinician and patient
3. Problem of allocation of resources
4. Religious factors/legal issues
5. Limits of confidentiality by legitimate interests
6. Consideration of clinical research/medical education
7. Consideration of public health and safty
Clinical ethics reasoning chart

13. Real life in China
• Is the patient/parents mentally capable & legally competent?
– United States: states’ Parens Patriae power
– China?
• When is the patient capable of partial autonomy in decision making
(predinisone case)?
– United States: 18 years with exception in emergency
– Some states more exceptions – pregnant, a parent, STIs, alcohol/drug abuse
– Several states has “minor treatment statute”
– China?
• Partial autonomy: Assent given by the minor.
1. A developmentally appropriate explanation of the medical condition and the treatment
2. an assessment of the minor’s understanding of the information and how his or her decision
was made, and
3. an expression of the minor’s willingness or unwillingness to allow treatment.

14. Real life in China
• Has the patient/parents understood the information？
• Informed consent
• In the USA:
1. an understandable explanation of the condition, the recommended treatment,
the risks and benefits of the proposed treatment, and any alternatives;
2. an assessment of the person’s understanding of the information provided;
3. an assessment of the competence of the minor or surrogate to make medical
decisions; and
4. assurance that the patient or surrogate has the ability to choose freely
between alternatives without coercion.
• In China?

15. Real life in China
• What should we do when parent’s decision doesn’t stand for
the beneficence of the Child?
– United States MedicAid insurance cover most of the cost but
Medicare users also faces financial problems.
– In China, commercial insurance but only cover 20% of the cost,
parents when they know there’s little prognosis will go back home –
what should the doctors do in this case?
– United States: Parens Patriae - but who will pay?
– Emergency Medical Treatment & Labor Act (EMTALA) - access to
emergency services regardless of ability to pay.
– China?

16. Case 2
• A 6 y/o girl was referred after diagnosed as enophthalmitis
and given antibiotics injection in local hospital and suffered a
sudden loss of vision
• After cataract removal and vitrectomy, her fundus appears to
be resembles gentamycin induced toxicity
• Local hospital said that they had injected vancomycin+amikacin
（10 times the proper dosage）
• What should we do?

17. • What is a medical error?
– Grober & Bohnen: “an act of omission or commission in planning or
execution that contributes or could contribute to an unintended
result, also known as an adverse outcome.”
• Unpreventable adverse events (complications) vs medical error.
• Error: Negligence vs honest mistakes
• Negligent actions：preventable, harmful errors that fall below
the standard expected of a reasonably careful and
knowledgeable practitioner acting in a similar situation.
Discussion: Disclosure of Errors

18. Discussion: Disclosure of Errors
• How often does error happen? (more than we thought)
– USA: nearly 700 deaths a day — about 9.5 percent of all deaths.
– Adverse outcomes among hospitalized patients
• Australia – 16.6% (Wilson et al., 1995),
• Canada – 7.5% (Baker et al., 2004),
• New Zealand – 11.2% (Davis et al., 2002),
• United Kingdom – 10.8% (Vincent et al., 2001)
– Error about 1/3 to ½ of all these incidences
• Things to ponder before disclosure
• Effective disclosure of error
– Mazor: full disclosure have positive effect

19. Effective way of error disclosure:
1. Information
– An explicit statement that an error occurred
– A description of what happened
– Information about what it means for the patient’s health
– An explanation of why the error occurred
– Plans for how recurrences will be prevented
2. Emotional support
– Clear and empathic language
– A sincere apology for the error
– Recognition of the emotional response (e.g., anger, sadness, mistrust)
3. Follow-up plans
– A description of the investigation under way
– Detailed plans for the next meeting and information to expect then

20. Real life in China
• Very low rate of disclosure of error
–Reflected in USA as well.
–Kaiser Foundation: Less than half of error is disclosed
–Reasons for not disclosing:
• Concern about triggering litigation, assumption that patient
would not want to know, belief that the patient would not
understand
• Pressured by hospital risk manager to not disclose.

21. Real life in China
• In China: professional issues of loyalty, fidelity and trust
• Sometimes it’s hard to clarify the facts
• Chinese physicians work under violence threat

22. Thanks for listening！
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23. Reference
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