Professional Guidelines for Limitation of LSMT in the United States There have been efforts over the past 15 years to de
Posted: Sun Apr 17, 2022 3:34 pm
Professional Guidelines for Limitation of LSMT in the
United States
There have been efforts over the past 15 years to develop a
professional consensus on the limitation or withdrawal of LSMT from
ELBW infants. Various committees within AAP have published
guidelines for limiting life-sustaining treatments for
newborns.
A group of prominent North American neonatologists,
pediatricians, and intensive care physicians convened to review
questions regarding the withdrawal of treatment for ELBW infants.
The results of their discussions were published in 1994. The
consensus of the group included the statement that “in order for
parents to choose to forgo life sustaining treatment on their
child’s behalf, survival does not have to be impossible or
unprecedented—it only has to be very unlikely.” They acknowledge
the uncertainties of prognosis, while emphasizing the importance of
shared decision making between families and medical professionals.
The group also discussed end-of-life decisions for chronically ill
infants and concluded that a shared approach to decision making,
with consideration of the child’s suffering, the effects on the
family, and the long-term prognosis, is the best course of action
(8).
In 1994, the AAP Committee on Bioethics
published Guidelines on Forgoing Life-Sustaining Medical
Treatment. The general principles recommended were as follows:
a presumption in favor of treatment, the patient or surrogate’s
right to decide and be informed, the patient or surrogate’s right
to refuse treatment, the fact that decisions to forgo treatment are
limited to the specific treatment in question (not necessarily to
all treatments), the preservation of respect for the patient,
physicians’ obligations to arrange for the care of their patient if
they do not wish to participate in limiting LSMT, and the
presumption against judicial involvement unless there are
irresolvable disputes. The committee advocates the best-interests
standard as a guideline for decision making for neonates. The
document also emphasizes the importance of physician documentation
in cases of limitation of LSMT (57).
A year later, the AAP Committee on Fetus and Newborn published
“The Initiation or Withdrawal of Treatment for High-Risk Newborns.”
That document recommended the approach of the individualized
prognostic strategy: providing care at an appropriate level at the
time of initiation of care with constant reevaluation of the infant
and dynamic decision making. Parents are to be informed and
involved in decision making that could affect the infant’s outcome.
One physician should act as the spokesperson for the medical team.
Treatments should be discontinued when “the condition is
incompatible with life or when the treatment is judged to be
futile” (9).
In 1996, the AAP Committee on Bioethics
published Ethics and the Care of Critically Ill Infants
and Children. The committee expressed concerns that the Baby
Doe regulations had caused physicians to overuse LSMT. However, the
committee suggested that the language used in the regulations “may
permit more physician discretion than some realize.” The committee
recommended parental involvement in decision making with
physicians, using the principles of informed parental permission,
and opposed clinical decision making on the basis of resource
limitation (58).
The Concept of Futility in the Care of Extremely Ill
Infants
Although much has been written about the concept of futility,
there is a lack of agreement on its definition and of its utility
as a concept. Within the realm of neonatal care, the concept has
been invoked in cases both of extreme prematurity and of severe
congenital anomalies that are incompatible with survival.
Futility arguments have been invoked when the health care team
disagrees with parents regarding the provision of life-sustaining
treatments to critically ill or severely neurologically impaired
infants. Futility has been conceptualized in several ways,
including physiological, or quantitative, futility; qualitative
futility; resource-centered futility; professional integrity-based
futility; and patient-centered, or goal-driven, futility (68). All
but (probably) the concept of physiological futility are determined
by the beliefs and values of the individuals involved in decision
making. In a review article on decision making in extreme
prematurity, Campbell and Fleischman assert that “although the
concept of physiological futility provides a nearly value-free
understanding of futility, it is not helpful in providing guidance
about treatment decisions for infants for whom the level of benefit
of the treatment and the overall prognosis is uncertain (69).
Bioethicists Veatch and Spicer contend that care is labeled
futile “either because the care produces no demonstrable effect at
a chosen level of probability, or because, even though it produces
an effect, that effect is believed by the speaker to be of no net
benefit” (70). Some authors have suggested that the concept of
futility should be considered only in relation to specific
treatment goals (68).
The paradigm case for futility conflicts for infants was the
case of Baby K, an anencephalic infant born in Virginia in 1992.
Although she was not a preterm infant, court rulings in her case
could potentially be applied to decisions regarding the
resuscitation of infants at the margins of viability or the
continuation of life-sustaining treatment for neurologically
devastated infants.
Although mechanical ventilation was not the standard of care for
anencephalic infants, Baby K’s mother insisted that she be
ventilated after birth. Over the ensuing 2 years, the infant
intermittently received mechanical ventilation for subsequent
episodes of respiratory distress. The treating hospi tal went to
court to have a guardian appointed and to obtain a declaratory
motion to allow the provision of palliative care for the infant.
The district court ruled that the hospital was required to continue
to provide emergency treatment for respiratory distress under the
Emergency Medical Treatment and Labor Act (EMTALA). In an appeal,
the hospital argued that ventilating an anencephalic infant was not
within normal standards of care, but the appeals court ruled that
the hospital was required to provide care because the emergency
condition was not anencephaly but respiratory distress. The court
did, however, acknowledge that the EMTALA laws were not designed
for application to this type of case. Court records document that
the infant’s mother objected to the limitation of treatment on
religious grounds (71, 72). At least one author argues that
parental religious beliefs should be respected in treatment
decisions. Post is concerned that religious freedom and the free
exercise clause of the First Amendment are at stake when religious
concerns are ignored or trivialized during decision making
(72).
Veatch and Spicer consider the physician’s role limited in
determining what treatments are futile. They define the problematic
cases as ones in which the treatment has an effect, but it is an
effect that clinicians believe has no benefit. They argue that in
such cases, it is incorrect to refer to futility on medical
grounds. The authors also maintain that in cases in which futility
is considered, if the patient is competent or has clearly expressed
wishes to have the treatment in question, he or she should receive
the treatment, on the basis that the beliefs and the values of the
patient or surrogate should take precedence. If the patient is
incompetent and the treatment produces harm or pain for the
patient, the clinician should seek to override the surrogate
decision maker. If the patient is incompetent and the treatment is
not injurious, there is no moral reason to override the surrogate.
The only exceptions are in the case of compromising the clinician’s
professional integrity or unjustly using society’s resources. The
authors believe that the values of the patient or surrogate should
take precedence, because clinicians’ expertise is limited to
medical knowledge and skills, not value judgments (70).
Whether aggressive treatment of an ELBW infant is futile has
remained difficult to determine, as accurate predictors of survival
have remained elusive. Some researchers have raised the concern
that a by-product of improved care and survival of ELBW infants is
that the LOS for nonsurvivors has significantly increased. In a
retrospective examination of ELBW (birth weight of <1,000 grams)
infant survival at the University of Chicago during the 1990s, the
median LOS for nonsurvivors rose steadily from 2 days in 1991 to 10
days in 2001. The authors conclude that the NICU “trial of therapy”
for ELBW infants now takes much longer than it has in the past, and
asking parents to “hold their breath” for 2 to 3 days to await
better prognostic news is no longer feasible (51).
f. Professional Guidelines for Limitation of LSMT in the United
States Explain current guidelines as outlined by the American
Academy of Pediatrics
g. Pain Management and Palliative Care at the End of Life
Discuss pain management and palliative care as it relates to
newborns
h. The Concept of Futility in the Care of Extremely Ill Infants
Describe the concept of futility in the care of extremely ill
infants When are life-sustaining measures considered futile?
i. How do financial, social and educational costs play a role in
the resuscitation of ELBW infants?
United States
There have been efforts over the past 15 years to develop a
professional consensus on the limitation or withdrawal of LSMT from
ELBW infants. Various committees within AAP have published
guidelines for limiting life-sustaining treatments for
newborns.
A group of prominent North American neonatologists,
pediatricians, and intensive care physicians convened to review
questions regarding the withdrawal of treatment for ELBW infants.
The results of their discussions were published in 1994. The
consensus of the group included the statement that “in order for
parents to choose to forgo life sustaining treatment on their
child’s behalf, survival does not have to be impossible or
unprecedented—it only has to be very unlikely.” They acknowledge
the uncertainties of prognosis, while emphasizing the importance of
shared decision making between families and medical professionals.
The group also discussed end-of-life decisions for chronically ill
infants and concluded that a shared approach to decision making,
with consideration of the child’s suffering, the effects on the
family, and the long-term prognosis, is the best course of action
(8).
In 1994, the AAP Committee on Bioethics
published Guidelines on Forgoing Life-Sustaining Medical
Treatment. The general principles recommended were as follows:
a presumption in favor of treatment, the patient or surrogate’s
right to decide and be informed, the patient or surrogate’s right
to refuse treatment, the fact that decisions to forgo treatment are
limited to the specific treatment in question (not necessarily to
all treatments), the preservation of respect for the patient,
physicians’ obligations to arrange for the care of their patient if
they do not wish to participate in limiting LSMT, and the
presumption against judicial involvement unless there are
irresolvable disputes. The committee advocates the best-interests
standard as a guideline for decision making for neonates. The
document also emphasizes the importance of physician documentation
in cases of limitation of LSMT (57).
A year later, the AAP Committee on Fetus and Newborn published
“The Initiation or Withdrawal of Treatment for High-Risk Newborns.”
That document recommended the approach of the individualized
prognostic strategy: providing care at an appropriate level at the
time of initiation of care with constant reevaluation of the infant
and dynamic decision making. Parents are to be informed and
involved in decision making that could affect the infant’s outcome.
One physician should act as the spokesperson for the medical team.
Treatments should be discontinued when “the condition is
incompatible with life or when the treatment is judged to be
futile” (9).
In 1996, the AAP Committee on Bioethics
published Ethics and the Care of Critically Ill Infants
and Children. The committee expressed concerns that the Baby
Doe regulations had caused physicians to overuse LSMT. However, the
committee suggested that the language used in the regulations “may
permit more physician discretion than some realize.” The committee
recommended parental involvement in decision making with
physicians, using the principles of informed parental permission,
and opposed clinical decision making on the basis of resource
limitation (58).
The Concept of Futility in the Care of Extremely Ill
Infants
Although much has been written about the concept of futility,
there is a lack of agreement on its definition and of its utility
as a concept. Within the realm of neonatal care, the concept has
been invoked in cases both of extreme prematurity and of severe
congenital anomalies that are incompatible with survival.
Futility arguments have been invoked when the health care team
disagrees with parents regarding the provision of life-sustaining
treatments to critically ill or severely neurologically impaired
infants. Futility has been conceptualized in several ways,
including physiological, or quantitative, futility; qualitative
futility; resource-centered futility; professional integrity-based
futility; and patient-centered, or goal-driven, futility (68). All
but (probably) the concept of physiological futility are determined
by the beliefs and values of the individuals involved in decision
making. In a review article on decision making in extreme
prematurity, Campbell and Fleischman assert that “although the
concept of physiological futility provides a nearly value-free
understanding of futility, it is not helpful in providing guidance
about treatment decisions for infants for whom the level of benefit
of the treatment and the overall prognosis is uncertain (69).
Bioethicists Veatch and Spicer contend that care is labeled
futile “either because the care produces no demonstrable effect at
a chosen level of probability, or because, even though it produces
an effect, that effect is believed by the speaker to be of no net
benefit” (70). Some authors have suggested that the concept of
futility should be considered only in relation to specific
treatment goals (68).
The paradigm case for futility conflicts for infants was the
case of Baby K, an anencephalic infant born in Virginia in 1992.
Although she was not a preterm infant, court rulings in her case
could potentially be applied to decisions regarding the
resuscitation of infants at the margins of viability or the
continuation of life-sustaining treatment for neurologically
devastated infants.
Although mechanical ventilation was not the standard of care for
anencephalic infants, Baby K’s mother insisted that she be
ventilated after birth. Over the ensuing 2 years, the infant
intermittently received mechanical ventilation for subsequent
episodes of respiratory distress. The treating hospi tal went to
court to have a guardian appointed and to obtain a declaratory
motion to allow the provision of palliative care for the infant.
The district court ruled that the hospital was required to continue
to provide emergency treatment for respiratory distress under the
Emergency Medical Treatment and Labor Act (EMTALA). In an appeal,
the hospital argued that ventilating an anencephalic infant was not
within normal standards of care, but the appeals court ruled that
the hospital was required to provide care because the emergency
condition was not anencephaly but respiratory distress. The court
did, however, acknowledge that the EMTALA laws were not designed
for application to this type of case. Court records document that
the infant’s mother objected to the limitation of treatment on
religious grounds (71, 72). At least one author argues that
parental religious beliefs should be respected in treatment
decisions. Post is concerned that religious freedom and the free
exercise clause of the First Amendment are at stake when religious
concerns are ignored or trivialized during decision making
(72).
Veatch and Spicer consider the physician’s role limited in
determining what treatments are futile. They define the problematic
cases as ones in which the treatment has an effect, but it is an
effect that clinicians believe has no benefit. They argue that in
such cases, it is incorrect to refer to futility on medical
grounds. The authors also maintain that in cases in which futility
is considered, if the patient is competent or has clearly expressed
wishes to have the treatment in question, he or she should receive
the treatment, on the basis that the beliefs and the values of the
patient or surrogate should take precedence. If the patient is
incompetent and the treatment produces harm or pain for the
patient, the clinician should seek to override the surrogate
decision maker. If the patient is incompetent and the treatment is
not injurious, there is no moral reason to override the surrogate.
The only exceptions are in the case of compromising the clinician’s
professional integrity or unjustly using society’s resources. The
authors believe that the values of the patient or surrogate should
take precedence, because clinicians’ expertise is limited to
medical knowledge and skills, not value judgments (70).
Whether aggressive treatment of an ELBW infant is futile has
remained difficult to determine, as accurate predictors of survival
have remained elusive. Some researchers have raised the concern
that a by-product of improved care and survival of ELBW infants is
that the LOS for nonsurvivors has significantly increased. In a
retrospective examination of ELBW (birth weight of <1,000 grams)
infant survival at the University of Chicago during the 1990s, the
median LOS for nonsurvivors rose steadily from 2 days in 1991 to 10
days in 2001. The authors conclude that the NICU “trial of therapy”
for ELBW infants now takes much longer than it has in the past, and
asking parents to “hold their breath” for 2 to 3 days to await
better prognostic news is no longer feasible (51).
f. Professional Guidelines for Limitation of LSMT in the United
States Explain current guidelines as outlined by the American
Academy of Pediatrics
g. Pain Management and Palliative Care at the End of Life
Discuss pain management and palliative care as it relates to
newborns
h. The Concept of Futility in the Care of Extremely Ill Infants
Describe the concept of futility in the care of extremely ill
infants When are life-sustaining measures considered futile?
i. How do financial, social and educational costs play a role in
the resuscitation of ELBW infants?