The Case of George: DNR for an Adult with Down Syndrome

CASE STUDY: WHAT SHOULD WE DO?

BIOETHICS FORUM, SUMMER 1999
BY ROSEMARY FLANIGAN

George is a twenty-three-year-old young man with Down's syndrome.

Until three years ago, he lived at home with his parents and had a part-time job washing dishes at a
restaurant. When George turned twenty, he and his parents decided that living in a group home would
be a good experience for him and he entered into his new life enthusiastically. George and his parents
have a good relationship and they have always encouraged him to be prudently independent. George
has often brought his good friend, Stan, home for supper. They both live at the home for
developmentally disabled young men, and his parents are happy that he has found a friend.

But one Saturday, George and Stan were waiting for a bus and in the course of some horseplay, Stan
accidentally pushed George too hard and he fell in front of the bus. He suffers from severe brain injury,
has no swallowing reflex and has had a feeding tube placed. A year has passed. The parents visit George
each day at the rehabilitation hospital but he has shown no signs of consciousness. Stan is devastated by
George's condition and the parents permit him to visit once a week, although the young man would
prefer to be there every day.

The doctor has requested a Do Not Resuscitate Order for George and the parents have signed it
although they are not legally declared his guardians. But now they are talking to the doctor about
removing the feeding tube. It is not instrumental in restoring him to any quality of life and they realize
that it would be better that George simply be allowed to die.

George and his parents live in a state that requires "clear and convincing evidence" for
withholding/withdrawing nutrition and hydration, and they are feeling hard pressed to provide such
evidence. They have not talked with George about dying; in the beginning, it was not relevant; now they
wish they had helped him make his advance directive. Even if they have themselves declared his
guardian they live in a state that does not permit guardians to withhold or withdraw life-sustaining
treatment.

They ask you for advice.

Questions

 The conflict in this case is between law and ethics. Address first what is the ethical thing to do
here.

 Is it ethically appropriate to remove the feeding tube? What is your argument?

  Should the parents ask Stan and the other boys at the group home if George has ever expressed
an opinion on the subject of end-of-life?

 Is the ideal here that the parents use a substituted judgment or a best interest judgment?

(Substituted judgment is one in which the surrogate or proxy decision maker can speak the judgments
previously articulated by the patient; best interest judgment is one in which decision makers do not
know the patient's wishes but choose to do what reasonable people would decide under like
circumstance or in similar positions.)

 Distinguish between competency and decisional capacity. Even if George has been declared
incompetent, could he still have decisional capacity to make out an advance directive?

 What kind of ethical reasoning are you using-virtue, principles, consequences?

 If the Disabled Advisory Group for Brain Injury protests your position, can you defend it?

MUST PRESENT AN ARGUMENT ON THE ETHICS OF THE CASE ASSIGNED BASED ON THE BENEFITS TO
BE ACQUIRED.

Some Rubric (1)

Some Rubric (1)

Criteria Ratings Pts

This criterion
is linked to a
Learning
10.0 pts 6.0 pts 2.0 pts
OutcomeClear Exceeds At Standard Below Standard
explanation of Standard Shows adequate Shows little
key strategic Shows superior knowledge of understanding of
issues knowledge of the issues, key the issues, key
10.0 pt
• The the issues, key problems, and problems, and the
problems, and the company’s company’s present s
problems, the company’s present situation situation and
scope, and present situation and strategic strategic issues.
seriousness and strategic issues.
was clearly issues.
identified in
the
 Some Rubric (1)

Criteria Ratings Pts

discussions.
• There was a
well focused
diagnosis of
strategic
issues and key
problems that
demonstrated
a good grasp
of the present
situation and
strategic
issues.
• Did not
waste space
summarizing
information
already found
in the case.
 Some Rubric (1)

Criteria Ratings Pts

This criterion
is linked to a
Learning
OutcomeProp
er
organization,
professional
5.0 pts 3.0 pts 1.0 pts
writing, and Exceeds At Standard Below Standard
logical flow of Standard Key points were Key points were
analysis. Key points were partially poorly identified
• Logically clearly identified identified and and supported
organized, key and supported supported with a with a well
with a well well thought out thought out
points, key thought out rationale based rationale based on
arguments rationale based on applying applying specific
easily on applying specific concepts concepts or
identified. specific concepts or analytical analytical
5.0 pts
• Key points or analytical frameworks to frameworks to the
frameworks to the data data provided in
were the data provided in the the case.
supported with provided in the case. Adequate Grammar,
a well thought case. Excellent grammar, spelling,
out rationale grammar, spelling, punctuation,
• Proper spelling, punctuation, professional
punctuation, professional writing, and
grammar, professional writing, and syntax needs
spelling, writing, and syntax significant
punctuation, syntax improvement
3rd person
objective view,
professional
writing, and
syntax.

Total Points: 15.0