SAFEGUARDS
FOR MAKING
LIFE-ENDING
DECISIONS
FOR
CHILDREN
SYNOPSIS:
Unfortunately some babies are born with terminal
conditions:
Even with the best medical care they will not survive.
Older children suffer diseases and injuries that will lead to death.
Because children cannot make their own medical decisions,
there must be procedures in place to make medical choices for them.
OUTLINE:
1. GRONINGEN PROTOCOL
2. BABIES BORN WITHOUT BRAINS
3. WHO ARE THE PRIMARY DECISION-MAKERS?
4. FIFTEEN SAFEGUARDS FOR CHILDREN
5. TOO MANY SAFEGUARDS?
SAFEGUARDS
FOR MAKING
LIFE-ENDING
DECISIONS
FOR
CHILDREN
by
James Leonard Park
In those parts of the world with the most advance
medical care,
defective new-borns are now less common than ever
because it is possible to detect many abnormalities before birth.
When a fetus has zero chance of surviving,
everyone usually agrees that ending the pregnancy is the best choice.
Nevertheless, in a small percentage of pregnancies
taken to term
the baby has abnormalities so grave there is no chance
of survival.
When the doctors cannot save the baby,
with the consent of the parents,
no treatments are provided and the newborn soon dies.
Older children die as the result
of diseases and accidents.
Sometimes life-ending decisions also must be made for them.
When children cannot understand their medical condition
nor evaluate the possible courses of treatment,
their parents must
decide for them.
Common sense usually governs life-ending
decisions for children.
But it might we wise to create careful systems
for making medical decision for patients too young
to make their own life-or-death choices.
1.
GRONINGEN PROTOCOL
The best-developed of these early attempts
to regularize life-ending decisions for children
is the Groningen Protocol, developed by doctors in the Netherlands.
An article appeared in 2005 in the New England Journal of
Medicine:
"The Groningen Protocol—Euthanasia
in Severely Ill Newborns"
by Eduard Verhagen, MD, JD & Pieter J.J. Sauer, MD, PhD:
http://www.nejm.org/doi/full/10.1056/NEJMp058026 .
They suggest five basic criteria for terminating
the life of a newborn:
1. The diagnosis and
prognosis must be certain.
A few days of examination and tests by specialists
will establish exactly what medical problems this baby has.
Based on the ever-growing medical literature,
the doctors can define and describe the medical problems
and project the most likely outcomes of particular treatments.
The Groningen Protocol covers only well-understood medical
conditions.
2. The baby must have hopeless
and unbearable
suffering.
Mild and treatable problems would not qualify for the
Groningen
Protocol.
3. Medical
consultation must take place.
No single doctor or close-knit team of doctors should decide.
Rather, outside medical experts in the disease or condition of the
infant
must be asked for their professional opinions and recommendations,
based on their actual examination of the patient
and all relevant test-results and treatments already tried.
At least one doctor who approves the life-ending decision
must not be involved
in the medical care of the infant.
4. The parents must
give their consent to the termination of
life,
after they have evaluated all relevant information and recommendations.
When possible, the parents should also be given ample opportunity
to digest the medical facts and recommendations
and to ask any further questions that occur to them.
5. The method of
choosing death should be
the most appropriate for this
particular dying infant.
Acceptable medical standards should be observed.
Quite frequently, merely turning off the life-supports
will result in the immediate death of the infant.
If there might be additional suffering caused by that method of
dying,
any such suffering can be prevented by appropriate medical means.
After the infant has died in fulfillment of the
above safeguards,
the doctors report everything to the local medical examiner.
Legal authorities can make certain that this death was correctly
chosen.
As of the date of this article, no prosecutions have resulted.
And ever-improving pre-natal screening
has led to more abortions of defective fetuses,
thereby decreasing the need for decisions about hopeless
newborns.
In Holland, all relevant groups of doctors endorse
this protocol
for making explicit life-ending decisions for infants
who have unbearable suffering
and/or who would have a short
life of very low
quality.
2.
BABIES BORN WITHOUT BRAINS
Some babies are born without the upper portions of
their brains.
They will never have a single conscious feeling or thought.
They are born permanently
unconscious, born into perpetual sleep.
With appropriate life-supports,
these little bodies can be kept alive for a few days.
And sometimes the other organs are completely normal.
This makes them ideal organ-donors
for other infants with serious birth-defects.
Occasionally the mother (or other family member)
wants to keep the baby 'alive' as long as possible,
even tho it will never become a full person.
In such cases, the doctors might have to prove to legal authorities
that further medical treatment and life-support would be futile.
A court-order might be needed to disconnect useless life-supports.
3. WHO ARE THE PRIMARY
DECISION-MAKERS?
Normally the logical persons to make medical
decisions for any infant
would be the parents
of the new baby.
And almost all laws relating to medical care for infants
either assume or enshrine this principle: The parents decide.
Only in cases where the parents are asking for
impossible results
do the powers of the doctors overrule the wishes of the
parents.
Each legal system on Earth has some way of dealing with
possible conflicts between the high hopes of parents
and the medical realities of a hopeless infant.
Parental consent must be obtained for any medical
procedure,
including withdrawing all life-sustaining equipment and medications.
However, when the parents and doctors have different views,
the safeguards included in the rest of this chapter
offer possible methods to resolve opposing choices.
4.
FIFTEEN SAFEGUARDS FOR CHILDREN
Because this book—How
to Die: Safeguards for
Life-Ending Decisions—
intends to cover all possible end-of-life situations
—including
children who are dying—
most
of the same safeguards can also be used for children.
The most obvious exceptions would be all safeguards
that call for meaningful and wise input from the patient.
Especially young children will not be asked to choose life or death.
But whenever children have some level of understanding,
they should be involved in the process of making medical decisions
in whatever degree is possible,
given their intellectual and emotional development.
Here are the selected safeguards we might use
for making life-ending decisions for children.
Each is linked to the complete (general) explanation on the Internet:
A. ADVANCE
DIRECTIVE
FOR MEDICAL CARE
Obviously
young children will not have created Advance
Directives.
But in complicated situations requiring several
medical decisions,
it might we wise for the parents to explain their own medical
ethics
as applied to the child who is receiving medical care.
This might be especially important
if the parents have different views on medical care
than might be expected of standard medical institutions
and of generic doctors who treat sick children.
B. REQUESTS
FOR
DEATH FROM THE
PATIENT
Only when the child can grasp the difference
between life and death
would any requests for death from this small patient be relevant.
And even if the child says he or she wants to die,
any such requests should be filtered by the parents.
Does this child have momentary and unreasonable wishes to be dead?
The real power to make medical decisions resides with the parents.
C.
PSYCHOLOGICAL
CONSULTANT
EVALUATES
THE
PATIENT'S ABILITY TO MAKE MEDICAL DECISIONS
Whenever there might be uncertainty
about who is best qualified to make medical decisions,
then a professional psychological consultant
might be asked for a professional opinion:
Is this child mature enough
to understand the medical options?
Can this child form a wise end-of-life plan for himself or herself?
Is the child being manipulated
in any direction
by the expressed or imagined wishes of any other people involved?
Is this child depressed by the situation to such a degree
that he or she should not be trusted to make final medical decisions?
This neutral professional can advise about
how the patent's 'views' should be taken into account
by the legal decision-makers—the
parents or guardians.
D.
PHYSICIAN'S
STATEMENT
OF CONDITION AND PROGNOSIS
The background medical facts and options for
treatment
must be provided by the physician caring for this
child-patient.
Let this professional
recommendation
be put into writing,
so that it can be shared with everyone who has a legitimate right
to be involved in the possible life-ending decisions for this child.
The doctor should explain in terms laypersons can understand
exactly what is wrong with this child-patient
and what remaining treatment-options are possible.
When a teen-age patient is on the verge of medical capacity,
there should be written authorization about medical information:
Exactly who will get
the doctors' statements, etc.?
E. INDEPENDENT
PHYSICIAN REVIEWS THE CONDITION AND PROGNOSIS
Especially when the patient's life is being considered,
it would be wise to seek a
second professional opinion
about the medical condition of the patient
and the likely results of various treatments that might still be tried.
Sometimes a fresh set of eyes and an uncluttered mind
might recommend some approaches not considered by the first doctor.
In very complex cases, even more specialists might be engaged.
Let all professionals consulted put their recommendations into writing.
F. CERTIFICATION
OF TERMINAL ILLNESS OR INCURABLE CONDITION
In order to make the written record even more
complete and explicit,
if the patient is definitely on a pathway towards death,
the fact that the patient
cannot be cured should be stated explicitly.
There might be differences in professional opinion about this matter.
If so, let those questions and challenges also be expressed
in ways that everyone involved can understand.
Those professionals who express doubts about a terminal prognosis
might be asked to explain what new developments
would cause them to change their recommendations.
G.
PALLIATIVE
CARE
TRIAL
Especially when it is uncertain how the
patient might respond,
an actual trial of symptom-control would be relevant.
Can the patient's condition be made tolerable enough
to reconsider any earlier life-ending
inclination?
And if controlling symptoms does not make
the patient's life tolerable,
this will be one additional piece of information
supporting the decision to choose death now rather than death later.
K.
REQUESTS
FOR
DEATH
FROM THE PROXIES
Precisely because the patient is a minor,
the proxies (usually the parents) have the legal, official power to
decide.
They will normally consult as much as possible with the patient
---especially when considering any life-ending decisions.
So it might be wise to wait until the patient is receptive
before opening any options that will lead towards death.
Once all the factors have been taken into account,
the legal proxies for the patient should put their request into
writing.
They can show their full grasp of the situation
by explaining in their own words
what they understand the medical situation to be
and why they have selected specific methods of managing dying.
L.
ENROLLMENT
IN A
HOSPITAL OR HOSPICE
The full medical record will show just how many days
the patient
has been cared for in some medical institution.
Everyone closely involved already knows this,
but the complete death-planning record should explicitly show
that this proposed death was not chosen casually:
This patient received such and such medical care and treatment
before the proxies decided that the patient's life was over.
M.
STATEMENTS
FROM
HOSPITAL OR HOSPICE STAFF MEMBERS
The written record could
include the personal statements
of staff persons who cared for the patient at the end of his or her
life.
Sometimes distant detractors claim that a certain patient
might have been rushed
into death prematurely.
The collected statements of hospital or hospice staff and volunteers
should reassure any distant doubters that this death
(even tho the patient was a minor) was nevertheless wisely chosen
after all the most appropriate safeguards were fulfilled.
O.
A
MEMBER
OF THE
CLERGY
APPROVES
OR
QUESTIONS CHOOSING DEATH
Especially when we are considering the deaths of
children,
where there is always some possibility of parents giving up too soon,
the professional written opinion of a member of the clergy
should go a long way toward reassuring everyone
that this child's death was wisely chosen.
Q. AN
INSTITUTIONAL
ETHICS COMMITTEE
REVIEWS
THE
PLANS FOR DEATH
Others who are not as emotionally involved in the
life of this child
would include an ethics committee of the institution
that is caring for this patient, who is obviously extremely vulnerable.
These doctors, nurses, lawyers, & ethicists have reviewed other
cases
where meaningful choices must be made at the end of life.
Even tho they do not usually deal with life-ending decisions for
children,
they have the necessary perspective that will allow them to make
wise and dispassionate recommendations.
And distant doubters should be more assured if they know
that this life-ending decision was reviewed by several
professionals
who know how to examine the pros and cons of life-ending decisions.
R. STATEMENTS
FROM
ADVOCATES FOR
DISADVANTAGED GROUPS
IF
INVITED BY
THE PATIENT AND/OR THE PROXIES
In
cases that might become controversial,
the patient and/or the proxies might ask for written opinions
from child-protection agencies or consultants.
In order to prevent inappropriate medical decisions
being made for minors who cannot protect themselves,
an agency or consultant having experience with such cases
might be asked to review the plans for death
and issue a written opinion.
Of course, it would be useless to consult someone
whose automatic response is always "no".
If the advocate for children believes
that it never right
to make any life-ending decision,
then such a consultation would be completely useless.
But some child-advocates are able to recognize
hopeless medical situations where innocent children are dying.
If a child-protection agency
agrees with the life-ending decisions,
who has any reasonable right to raise objections?
S. REVIEW
BY THE
PROSECUTOR (OR OTHER LAWYER)
BEFORE
THE DEATH
TAKES PLACE
If
anyone believes that some laws might be violated
in making a life-ending decision for this child,
then the complete death-planning record can be shared
(in advance of the planned death) with the public prosecutor.
At first this will seem a very unusual request.
But if there is even a remote possibility that this prosecutor
might open a file concerning this death,
then it makes much more sense to raise the legal doubts
before the child's death than
afterwards.
If the public official responsible for bringing any
criminal changes
agrees in advance that this life-ending decision violates no laws,
then everyone can proceed without worrying about prosecution.
And if anyone has distorted the written record to
cover up a crime,
that can still be prosecuted later.
U.
WAITING
PERIODS FOR REFLECTION
In every life-ending decision, it is always
appropriate
to take time-out to reflect on the decision soon to be implemented.
What is the condition of the child-patient?
What treatments have already been tried?
What other treatments might be appropriate?
Would it be appropriate to give a few additional days
to review all the facts, professional recommendations,
& the life-ending decision that seems to be emerging?
5. TOO MANY SAFEGUARDS?
After
reading thru the fifteen safeguards discussed above,
we might have a feeling of over-kill.
But it is better to be too
careful than too
careless.
Especially when we are considering the deaths of defenseless children,
the views of lots of other
people besides the parents and the doctors
should be carefully considered.
When the public first hears about ending the lives of children,
the overwhelming first response is likely to be "NO!"
But when everyone discovers that the most careful safeguards
have been employed especially because child-patients
cannot protect themselves,
they might be more inclined to think that it is possible
to make reasonable life-ending decisions
for children who will otherwise suffer meaninglessly and later die.
Later
the summary for Part Five of How
to Die will be added here.
The current version is appended to Chapter
51.
AUTHOR:
James Leonard Park is an independent philosopher
and advocate of safeguards for all end-of-life decisions.
He is the founder of a website called
Safeguards for Life-Ending Decisions:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/SG.html
Much more about him will be found on his personal
website,
James
Leonard Park—Free
Library.
The above discussion of making life-ending decisions
even for children
is Chapter 52 of How
to Die:
Safeguards for Life-Ending Decisions:
"Safeguards for Making Life-Ending Decisions for Children".
Created
April 22, 2014; Revised 6-4-2014; 6-19-2014; 8-2-2014;
1-28-2015;
4-29-2015; 7-11-2015; 6-8-2016; 9-22-2016; 7-8-2017; 3-20-2018;
10-12-2019; 6-27-2020;
Further Reading:
Books on Helping Patients to Die
Books
Supporting
the Right-to-Die
Books
Opposing
the Right-to-Die