Identify the major stakeholders in the case. Identify the ultimate decisions makers (e.g., medical team, parents, etc.) in the case. Explain Baby Bundles rights in this case. Describe

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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 Ethics Committee Meeting. The Committee consists of the Committee Chair, a recording Secretary, an ICU doctor, three nurses, a social worker, a Nurse Practitioner, the CNO, the Chief Medical O�cer, the Chaplain, a public member, a nurse from the pediatric ICU, and a doctor from the Pediatric ICU. 

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

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

For our public member I will explain: Anencephaly in this child is a congenital neural tube defect where a major portion of his brain, skull, and scalp are missing.  The brain stem is the only part of the brain that is present. The brain stem supports the autonomic functions and re�ex actions, but he remains permanently unconscious because he lacks his 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 enables speech, thinking and reasoning, judgment, problem-solving, emotions, and learning.  It also serves to initiate and coordinate movements and initiate movement.  Anencephaly is always fatal.  The children almost always die within a few days, although there have been a very few exceptions.  Parents of children with anencephaly are often approached by the transplant team to donate various organs from their child.   

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

The mother wants to continue medical treatment.  The doctors have informed the parents of the dismal future for the child and advise termination of treatment.  The nurses feel that the child feels pain and is suffering when they suction his ventilator tube and 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 on maternity 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 and given consent?

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

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

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

QUALITY OF LIFE

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

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

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

Is the patient’s present or future condition such that continued life might be 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�uence treatment 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?

Ethical Decision Models & Problem-Solving Methodologies

7 Step Guide

Moral Model

State the problem (specific thought or feeling that prompts you to feel uncomfortable). 

Check facts (consider all points of view). 

Identify relevant factors (people involved, laws, personal codes of conduct, etc.). 

Develop a list of options (consider a variety of decisions or solutions). 

Test the options. 

Make a choice. 

Review previous steps (consider how you could avoid having to make this decision in the future). 

Massage the dilemma

Outline the options

Resolve the dilemma

Act by applying

Look back and evaluate entire process

Harm test: Does this option do less harm than the alternatives? 

Publicity test: Would I want my choice of this option published in the newspaper?   Would I want my grandmother to know? 

Defensibility test: Could I defend this choice of option before a committee of peers, or a Congressional Committee without appearing self-serving? 

Reversibility test: Would I still think this choice of option was good if it were applied to me instead of others especially if some of the effects are adverse? 

Colleague test: What might my profession's governing board or ethics committee say about this option? 

Organization test: What does my organization's ethics officer or legal counsel say about this? 

Virtue test: Would a virtuous person do this? What kind of person does this? What kind of person would I become if I did this kind of thing all the time? 

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