|
Site Map
Home
For new families
Hydranencephaly
Information
Our Rays of Sunshine
Resources in caring for a Child with Hydranencephaly
Physical Care of a Child
with Hydranencephaly
Health
Conditions
Prenatal
Diagnosis
For Grieving
Families
Difficult Times
Pt. 1: Taking Care of You
Difficult Times: Pt 2: What If?
About us
News
Contact a
Family
Book: Caring for Your
Child With Hydranencephaly
Hydranencephaly data base
Contact
Barb
Printed Materials
Fact Sheet
Fact Sheet Brochure
Frequently
Asked Questions
FAQ
Brochure # 1
FAQ
Brochure # 2
FAQ
Brochure # 3
FAQ
Brochure # 4
FAQ
Brochure # 5
FAQ
Brochure # 6
FAQ
Brochure # 7
Myths about Hydranencephaly
Myths Brochure
Dear Doctor Letter
| |
Sample
Advance Directives
Sample #1
Our DNR states. Dear Dr. (Dr.'s name)
(Your child's name) suffers from Hydranencephaly. His condition is thought to
be fatal, although the length of (child's name) life cannot be determined at
this time. With full awareness of (child's name) limited life expectancy his
parents have elected to continue to make his life as normal as possible at home.
Should (child's name) die at home, cardiopulmonary resuscitation should not be
attempted. Neither isi t necessary for his body to be taken to the hospital at
the time of death. The family resides at (your address).
For further information, please contact (your Dr.'s name at whatever hospital
location).
"My husband and I have both copies of the DNR order and we have the
choice to use it or now. The Drs have told us to use our discretion. Basically
if we choose to have (child's name) life saved, we obviously would determine it
on the situation. We have full control."
Sample #2
This is our government's advance directive form for children.
On the first page is name and personal info like that.
Then:
A. Cardiopulmonary Resuscitation (the instruction below applies only should the
child have or develop a terminal illness or be in a state of permanent
unconsciousness)
1. Do not resuscitate (no cardiac compressions, endotracheal intubation,
advanced airways management, etc)
2. Initiate basic and advanced cpr
3. No decision about resuscitation is made at this time.
If the Dr checks #1 then there is a signature at the bottom with a date when
this directive expires (it needs to be reviewed every 3 months I believe)
On page 2
B. Levels of intervention-in the event of an irreversible (irreversible is
underlined in the original) life threatening illness leading to imminent death
or of natural end of life, direction is given to provide the following:
(indicate 1):
Level 1: Do not transfer to Hospital (supportive care only (ie; nursing
care, pain and other symptom relief, oral nutrition and hydration, psychological
and spiritual support)
Level 2: Do not transfer to hospital Therapeutic measures and
supportive care without transfer to an acute care hospital (includes measures
from #1 as well as medications such as diuretics or antibiotics if indicated.)
No transfer to acute care hospital unless adequate comfort measures cannot be
provided.
Level 3: Transfer to acute care hospital if necessary but excluding
admission to an intensive care unit.
Level 4; transfer to acute care hospital with maximum therapeutic effort and
if necessary admission to the intensive care unit.
5. No decision about degree of intervention is made at this time.
C. Other specific health care instructions:
For Kayda when we realized her life would end in the near future we specified
the following:
1.All medications to be continued
2.Tube feedings as tolerated
3. Only cardiac arrest and respiratory arrest are not to be
treated-all other symptoms/conditions are to be treated aggressively.
4. Comfort is primary concern.
This form is what we filled out about 2 months before Kayda died. Prior to that
(the form wasn't developed until near the end of Kayda's life) the boxes
indicating maximum treatment would have been checked.
Another point of view
This is how one family describes their decision making process when it comes
to critical health care decisions for their child with Hydranencephaly. It is
written by the Grandmother.
"My daughter has been told - as everybody with an ear to listen "take
her home...she should die before the weekend is over!!" Well, for
Sarah we have a 'kind of' directive. We always take her to the same
hospital---Mercy Hospital of Pittsburgh. We know EVERYBODY on the peds
floor from Housekeeping to
The Head of Peds NICU. Dr. Howard, (he has put us all on a first name
basis since Sarah's first 'visit' to the NICU unit) knows our feelings and he
agrees with this....as long as 'we' are doing things FOR Sarah then ok! Once
we start doing things TO Sarah - well that's when we DRAW the line.
This does NOT mean Sarah doesn't go on a respirator - if she has pneumonia and
they need her to completely 'save her energy' to heal....they will put her on
the respirator. Then she does NOT have to concentrate on 'breathing'
&'getting better'. The breathing at that point is done FOR her!
|
