2 - Pedia Bioethical Issues Iii - Qol

Bioethical Guidelines and
Issues in Pediatrics III

Melchor Victor G. Frias, IV, MD, FPPS, MScCE
Guidelines and Issues in Pediatrics
General Objectives

At the end of the course, the student must
have acquired the knowledge of the specific
bioethical principles/guidelines/issues and
apply these in concrete cases in pediatrics.

Guidelines and Issues in Pediatrics
Objectives
At the end of the session, the student is able to:

Determine the duty to preserve the life of a
defective newborn,
Present the considerations and guidelines
regarding impaired newborns,
Justify the continuation or withdrawal of
treatment when parents request it,
Evaluate Quality of Life in Pediatrics.
Impaired Newborns:
Guidelines on To Treat or Not
To Treat
Impaired Newborns
Modern Medical Technology
- may be life saving
- may present ethical dilemmas
- may be risky and costly
Impaired Newborns
Modern Medical Technology:
Generates issues that cause agony and
disagreements among:
physicians/pediatricians/neonatologists
medical staff
parents
ethicists

Impaired Newborns: Guidelines
In emergency situations, treat.
Emergency situation:

unanticipated and life threatening
lack of immediate treatment will increase
risk to health
treatment is needed to alleviate physical
pain or discomfort
Time is important. When there has been
no opportunity to assess the infant and
resuscitation will sustain life, treat.
In general, NICU policy is posited on a
presumption in favor of treating infants

The burden of proof is on the proponent
of not treating.
An advantage of viewing the immediate
treatment of newborns as emergency
is that emergency treatment is always
acceptable, even without parental
consent.
Immediate treatment can buy time to
clarify diagnosis and prognosis, and to
inform and consult with parents.
Impaired Newborns:
Guidelines on Initiating versus
Withdrawing Treatment
Initiating versus withdrawing treatment
It used to be thought that initiating
treatment meant a commitment to
continued treatment.

physicians were too cautious in using
artificial life support
Initiating versus withdrawing treatment
Psychological difference

Moral difference
Clearly futile treatment is not morally
required.
If medical care is clearly beneficial, the
infant should always be treated. But if
treatment will be clearly futile or will only
prolong dying, it is justified to withhold it.
required.
Treatment is futile in terms of the
infants survival.

The medical condition of the infant
should be the sole criterion for with-
holding treatment.
required.
Treatment is also futile if the infant has
some physical impairment incompatible
with life which is uncorrectable.
If treatment is not medically indicated
there is no moral obligation to treat.
Treatment is not medically indicated
if the pediatrician/physician, according
to reasonable medical judgment,
determines that any of these conditions
exists:

1. The infant is chronically and
irreversibly comatose.
Treatment is not medically indicated

2. Treatment would merely prolong dying.
3. Treatment would not be effective in
correcting all of the life threatening
conditions.
4. Treatment would be futile in terms of
physical survival.
5. Treatment would be virtually futile and
inhumane.
If treatment is not medically indicated
there is no moral obligation to treat.
In general, there is no obligation to
treat on the remote chance of success,
especially when the treatment would
produce severe and prolonged
suffering.
Medically indicated treatment may not
be withheld.
Medically indicated treatment: whatever
is likely to be effective in ameliorating or
correcting all life threatening conditions.
Medically indicated treatment may not
be withheld.
If it is uncertain that medical care will be
beneficial, treatment is not necessarily
required.

If treatment is withheld, the infants
disability should not be the basis of
withholding treatment.
In cases of disagreements or
uncertainty about whether or not
treatment is required, a Bioethics
Committee should be consulted.
Withholding/withdrawing life sustaining
treatment
The attending physician (AP) should
assume the primary responsibility for
coordinating communication among
those involved in considering to limit
or withdraw therapy.
treatment
The AP or family may initiate the
discussion and decide concerning
withholding or withdrawing life
support measures in the presence
of the following:

1. Patients condition is terminal and
death is imminent

2. Patient is irreversibly comatose or in
persistent vegetative state and there is
no hope for improvement.

3. The burden of treatment far outweighs
the benefit.
treatment
Every surrogate/family is obliged to use
proportionate means to preserve the
childs health.

A surrogate may decide to forego
disproportionate means of preserving
life.

treatment
In children, life support measures may
be necessary to permit full evaluation
of the patients condition. These inter-
ventions should not be withheld during
evaluation.
treatment
The free and informed consent made by
a surrogate/family concerning the use or
withdrawal of life sustaining procedures
should always be respected and complied
with unless contrary to the childs best
interest and/or Catholic moral teaching.
treatment
No patient should be discharged against
medical advice without the initiation of
discussions with the surrogate/family and
appropriate review by the medical team.
Impaired Newborns:
Issues
Impaired Newborns: Issues
May treatment be withheld if parents
request it?
No, if it clearly benefits the infant/child
and there is no clear indication of futility.
Yes, if it is clearly futile.
Should treatment be continued when
parents request it, even if the medical
staff consider it futile?

No, when it causes more significant
suffering to the infant/child and it is
already futile.
Should treatment be continued when
parents request it, even if the medical
staff consider it futile?

Yes, if it is for the sake of the parents.
Yes, if it is for organ donation.
May futile treatment be continued for
the purpose of future knowledge?
For better care for premature & impaired
infants boundaries between treatment
and research become blurred.
Non-therapeutic research on infants &
children is never morally required.
Are food, water, and palliative care
always required?
Depending on the clinical circumstances,
nutrition and hydration may be considered
medical treatment.
The child should not be made to suffer
needlessly.
Are food, water, and palliative care
always required?
Nutrition and hydration should be provided
to all patients. As long as this is of
sufficient benefit to outweigh the burdens
involved to the patient/family, medically
assisted nutrition and hydration should
also be given.
Are costs and use of resources relevant
factors in non-treatment decisions?
If treatment is virtually futile and prognosis
for a minimally good quality of life is very
poor, may end/withdraw treatment.
There is no set value on life or an upper
limit on expenditures for life-sustaining
treatment.
When is non-treatment generally
accepted?
The child is in a persistent vegetative
state and there is virtually no hope of
recovery
There is brain death.
Treatment is clearly futile.
Impaired Newborns
PHILIPPINE ETHICAL GUIDELINES IN THE
IMMEDIATE CARE OF EXTREMELY
PREMATURE AND EXTREMELY LOW
BIRTH WEIGHT NEONATES
Impaired Newborns
PREMATURE AND EXTREMELY LOW BIRTH
WEIGHT NEONATES
Good medical practice favors initiation of life
sustaining medical treatment until the clinical
situation is confirmed and ethical concerns, if
any, are clarified. If postnatal assessment
differs from antenatal assessment,
recommendations to parents may be changed
accordingly.
Impaired Newborns
WEIGHT NEONATES
Factors to consider in decision making are
fetal and immediate neonatal conditions,
including available resources.
Impaired Newborns
WEIGHT NEONATES
All decisions should be based on both parents
and the attending physicians assessment of
what is in the best interest of the neonate.
Parents involvement in decision making is
mandatory.
Impaired Newborns
WEIGHT NEONATES
In cases of conflict between the parents and
the attending physician, the decision must be
for the good of the newly born infant beginning
with the respect of his right to life. When the
concerned parties fail to reach a consensus,
the matter can be referred to the Hospital
Ethics Committee.
Impaired Newborns
WEIGHT NEONATES
GUIDELINES IN AGGRESSIVE CARE
Full resuscitative measures should be made available to
all live newly born. Non-initiation of resuscitation may be
considered, however, when such is deemed futile, as in:
1. presence of lethal anomalies or
2. birth weight less than or equal to 400 grams
and postnatal gestational assessment less
than 24 completed weeks.
Impaired Newborns
WEIGHT NEONATES
GUIDELINES IN AGGRESSIVE CARE
Resuscitation of newly born infants other than (1) and (2)
may be stopped after 15 minutes, when cardio-respiratory
function has not been restored.
Impaired Newborns
WEIGHT NEONATES
PALLIATIVE CARE
When the decision not to continue aggressive care is
reached, every effort must be made to offer comfort care
such as human contact, providing warmth, oxygen,
hygiene, fluids and nutrition. Adequate support for the
grieving process should be made available and
coordinated accordingly.
Issues in Pediatrics III
Issues in Quality of Life
Quality of Life
The experience of life as viewed by the
patient, ie, how the patient, not the
parents or health care providers,
perceives or evaluates his or her
existence
Quality of Life
Should quality of life ever be a
decisive reason for withdrawing life-
support therapy?
Quality of Life: Guidelines
Three situations where one can forgo
life-sustaining medical treatment:
There is brain death:

Even though heart-lung function can be
sustained artificially, where there is no
brain function, there is no life and that is
the end of treatment.
Clinical Criteria for Brain Death
Fixated pupils
Absent oculovestibular response
Absent corneal reflex
Apnea with PCO2>60mmHg
Isoelectric EEG and ECG
No behavioral or reflex response stimuli
that imply function above the level of the
foramen magnum

The child is in a persistent vegetative
state and there is virtually no hope of
recovery:

There is little if any controversy that it is
not required, legally and morally, to sustain
life functions for such a child.
Treatment is clearly futile:

It will be easier to justify non-treatment
when survival is unlikely than when
treatment is futile relative to improved
status.
Life-Sustaining Medical Treatment:
LSMT encompasses all interventions
that may prolong the life of patients.

- Ventilators or respirators, organ
transplantation, dialysis
- antibiotics, insulin, chemotherapy, nutrition
and hydration provided IV/by tube
Forgo
Refers to both stopping a treatment
already begun as well as not starting
a treatment
Quality of Life: Issues
Arguments against Quality Of Life
Human life is of unqualified value
To one life worth living and another not,
is to deny the essential equality of all
people, to discriminate against some,
and to devalue what is sacred.
Judging QOL implies valuing some
lives more than others, and this is
morally wrong because all human life
is equally valuable.

The value of life vs The value of human
life Biological life vs Biographical life
Judging QOL in the context of refusing
treatment implies that not all life is good
and that sometimes death may be better
than life.
*But this is not true, Life is always good
and death is always bad by comparison.
A rational person would always choose
life over death.
The slippery slope argument
*If we allow refusal of treatment for those
just above a vegetative state, it will be
easier to begin to allow less severe
stages
Arguments for Quality Of Life
Some lives are so unbearable that to
continue them is wrong in itself
Some recommend consideration of
quality of life, the best interest of the
infant, the interests of the family
members, and issues of futility.

Stevenson and Goldworth, 1998
Human life is sacred, but not an
absolute good.
Utilitarian argument: Cure oriented
medical treatment may be w/drawn if
and when the patient and family
determine that the burdens of treatment
outweigh the possible benefits.
McCormick, 2006
Best interests standard is based on
quality of life considerations and the
childs potential for human relationships.
*For infants, a patient-centered quality of
life approach based on the potential for
human relationship associated with the
infants medical condition
McCormick, 2006
Quality of Life
Conflicts and Issues
Refer to the Hospital Bioethics Committee
Issues in Quality of Life

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Bioethical Guidelines and

Issues in Pediatrics III

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