NOTE: The following was posted an December 12, 1995 on the Bioethics Discussion List. With the author's opening disclaimer, the protocol is reprinted here. Though not unique to pediatrics, the thoughtfulness of this author's approach has merits for all ages.

BPM
_________________________________
There has been surprising number of requests to use the previously
sent protocol in teaching housestaff. I have expanded the previous
brief missive to make it more useful to that purpose.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
I hope this is helpful. With regard to the requests to use this
material.

1. The author undersigned hereby relinquishes all claim to this
material in any literal, complete, partial conceptual, allegorical,
metaphorical, or amended forms.

2. Those who respect the author will enforce his wish that the very
idea of a copyright for this protocol is hereby vaporized, extinquished,
and consigned to the hell designed for human genome patent attorneys.

3. I furthermore relinquish claims to a portion of any patient care
revenues that might be billed in implementing this protocol or the savings
of any managed care corporation that uses this as a practice guideline.

4. This is a complex technical and interpersonal practice guideline. I am
not responsible for the consequences of others who try this.

This disclaimer submitted under the Alan Meisel doctrine of e-mail
liability.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++


This protocol directly applies to unconscious persons who are definitely
dependent on a ventilator and pressors. I use it for persons with CNS
catastrophes with herniation, ARDS with or without septic shock, etc. With
the addition of sedation and provision for additional patient consultation,
it can apply to situations where the patient is conscious. It can also be
modified to cover patients who are expected to have extended survival after
extubation but die in the hospital.

Here is a story.

Several years ago, Tim Crimmins and I wrote a policy for ambulance
personnel to accept do-not intubate and DNR orders for ambulance
personnel. The DNR part was well accepted in our community. There was
reluctance to accept the DNI part, becuase the ambulance and ER people
regarded airway management, including intubation, as palliative or as
life-saving with no disability and so rejected the "consent" to the DNI
order. This resulted in a large number of people coming to the hospital
with DNI orders who were intubated in the field or in the ER. Many of
these intubations were inappropriate and the refusal had been worked out
before hand. The facility, in response to this, developed considerable
experience in extubating patients soon after admission. I have used this
in my own practice that involves a number of older persons and ethics
consults.

Let me give you an example,

A young man with AIDS has been estranged from his family because of his
sexual orientation. His disease progresses and over the phone, a
reconciliation is made and his family agrees to come to the city to meet
after several years. He has a very clear plan for terminal care that is
discussed with his partner, that includes no use of life support.

The day his family are coming to the city, he develops a CNS catastrophe
that proceeds from a headache to a herniation. He is intubated in the ER
and sent to the ICU just as his family arrive in town, go to his apartment
and find the note that the partner has left directing them to the hospital.

The parents are distressed and the mother is distraught but there is an
interesting and rapid rapport that develops between the partner and the
parents, particularly the mother--all of whom evidently love this dying
man. A discussion is held and all agree and assert that this patient would
not want to be supported in this manner. About an hour and half after the
parents arrive at the hospital, after the facts are explained several times
and agreement is reached the decision is made to discontinue the life
support.

1. All monitors in the room were shut off. This includes IVs,
oximeters, pulse, pressure, respiration etc. I suggest that the
physician supervise personally as there are an incredible number of
machines in an ICU room-- all of which are designed to communicate that
something is wrong by making screeching noises that are unsettling or
disturbing. It is very difficult to turn off all alarms. Some respirator
alarms can not be shut off-- as the patient approaches a physiologic
condition at which these alarms are triggered, the physician or a medical
student or nurse should be stationed at the machine to override the alarm.

2. Equipment that restricted access to his hands (hands are for holding,
not for restraint) was removed. This includes, IVs, mitts, bedrails,
etc. A space for family access at the bed was made available.

3. Needlessly disfiguring or encumbering, or room-crowding devices were
removed. This include NG tubes that are not needed. I remove NG tubes
before family come into the room because they are long, slimy, messy, and
disgusting looking as they come out and are not a form of immediate life
support and so can be withdrawn without consequence. I also remove bulky
devices that are not needed like warming or cooling devices since it makes
more room for family to move around the bed, decreases the number of hoses,
noise, and colored lights. The bedside should not look like a war--remove
betadine soaked sheets etc.

3. Family were invited in the room to be with the patient.

4. With quiet orders personally directed by me as the attending physician
in the room; pressors were turned off and IVs were set to TKO. IV access
is maintained for palliative meds.

5. I asked the nurse to give me a syringe of a sedating drug like valium
or ativan to have IN HAND in case of distressing tachypnea in front
of family. I told the family that tachypnea or periodic breathing can
occur and can be managed.

6. The respirator was set to FIO2 of 20% and the patient is observed for
signs of respiratory distress. If the scene is comfortable, the
endotracheal tube is either removed or there is a brief trial of no assist
before the endotracheal tube is removed. In this case, there was no
tachypnea.

7. I removed the ET tube under a clean towel without asking the family to
leave the room. Tip: have one person manage silencing and turning
off the ventilator. I put a clean towel over the ET tube so it is
concealed, once the cuff is deflated, the tube can be removed and kept
covered with the towel which also gets most of the secretions that come up
with the tube. The family is behind me because I withdraw from the
bed first with the towel and tube and the family can now come forward to a
loved one whose face is now entirely de-equipmentized (NG and ET gone). A
nurse the opposite side of the head of the bed has a damp washcloth
and oral suction catheter. The family and the nurse had tissues for
extra secretions and for tears (It amazes me how often physicians or
nurses do not anticipate the need for tissues and so make getting them a
production as if tears are a surprising sign of lack of control).
The family wiped his face. Death followed 15 minutes later. The mother
held her son's hand and cried and assured him that grandma would welcome
him on the other side.

8. The housestaff are individually debriefed within 24 hours to talk about
their feelings to this event. One intern clearly amazed said that he
had not seen anybody do this before and that it drove home the humanness of
death like nothing that had happened in his career. Family will be numb.
The had, and research shows they need, a written piece of paper with the
physicians name on it for questions.

9. Citing Tolle, at attending rounds, the second year resident and I sent
a bereavement card to the partner and to the parents. These cards have an
enormous impact on loved ones.

My goal is for a scene that is controlled, the patient is accessible, the
hands are for holding, and the face is not disfigured by technology at the
end of life.

Peace,


Steve Miles. M.D.
Center for Biomedical Ethics
University of Minnesota
2221 University Avenue, Suite 110
Minneapolis, MN 55414
miles001@maroon.tc.umn.edu
phone 612 626 9756
fax 612 626 9786

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