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Case Study

You are a manager of the Child Specialty Clinics at a major University Hospital Center.You are also a member of the Ethics Committee.  Today is your monthly EthicsCommittee Meeting. The Committee consists of the Committee Chair, a recordingSecretary, an ICU doctor, three nurses, a social worker, a Nurse Practitioner, the CNO, theChief Medical O�cer, the Chaplain, a public member, a nurse from the pediatric ICU, anda doctor from the Pediatric ICU. 

After gathering lunch, reading and approving the minutes of last month’s meeting, theChairman states that there is an urgent case to discuss.  

There is a situation in the Neonatal Intensive Care Unit (NICU).  A Baby Bundle was bornyesterday with anencephaly.  Because he had trouble breathing, he was placed on aventilator and is in the NICU. 

For our public member I will explain: Anencephaly in this child is a congenital neuraltube defect where a major portion of his brain, skull, and scalp are missing.  The brainstem is the only part of the brain that is present. The brain stem supports the autonomicfunctions and re�ex actions, but he remains permanently unconscious because he lackshis cerebrum.  The cerebrum is important because it sets us apart as humans.  Not only

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is the cerebrum the largest part of the brain in humans, but cerebrum also enablesspeech, thinking and reasoning, judgment, problem-solving, emotions, and learning.  Italso serves to initiate and coordinate movements and initiate movement.  Anencephalyis always fatal.  The children almost always die within a few days, although there havebeen a very few exceptions.  Parents of children with anencephaly are often approachedby the transplant team to donate various organs from their child.   

Thus, Baby Bundle has no cognitive abilities or awareness, and cannot hear or see orotherwise interact with his environment. Baby Bundle’s brain stem supports hisautonomic and re�ex actions, but he is permanently unconscious because he lacks acerebrum.  The issue we are looking at today is the father wants to terminate BabyBundle’s treatment. 

The mother wants to continue medical treatment.  The doctors have informed theparents of the dismal future for the child and advise termination of treatment.  Thenurses feel that the child feels pain and is suffering when they suction his ventilator tubeand take blood work.  Mr. and Mrs. Bundle have been married for 5 years and this is their�rst child.  Mr. Bundle is an accountant and Mrs. Bundle works for NASA but is now onmaternity leave for 6 months.

QUESTIONS TO CONSIDER

MEDICAL INDICATIONS

What is the patient’s medical problem? History? Diagnosis?Prognosis?

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PATIENT PREFERENCE

What has the patient expressed about preferences for treatment (e.g.advanced directives)?

Has the patient been informed of the bene�ts and risks, understood andgiven consent?

Is the patient mentally capable and legally competent? What is evidenceof incapacity?

If incapacitated, who is appropriate surrogate? Is surrogate usingappropriate standards? 

In sum, is the patient’s right to choose being respected to every extentpossible in ethics and law?

QUALITY OF LIFE

What are the prospects, with or without treatment, for a return to thepatient’s normal life?

Are there biases that might prejudice the provider’s evaluation of thepatient’s quality of life?

What physical, mental, and social de�cits is the patient likely toexperience if treatment succeeds?

Is the patient’s present or future condition such that continued life mightbe judged undesirable by them?

Is there any plan and rationale to forgo treatment?

What plans are there for comfort and palliative care?

CONTEXTUAL FEATURES

Are there family issues that might in�uence treatment decisions?

Are there provider (physicians and nurses) issues that might in�uencetreatment decisions?

Are there �nancial and economic factors?

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Are there religious, cultural factors?

Is there any justi�cation to breach con�dentiality?

Are there any problems of allocation of resources?

What are legal implications of treatment decisions?

Is clinical research or teaching involved?

Any provider or institutional con�ict of interest?