what-when-how
In Depth Tutorials and Information
regarding aggressive, supportive or palliative care
should always be made in a shared and supportive envi-
ronment. Unfortunately, this is not always the case. Some
neonatologists report that they do what they feel is most
appropriate and do not always respect parental requests
in the context of uncertainty, even when those requests
are valid medical options.
35
For this reason, it is preferable to discuss a care plan
prior to delivery that focuses on beneficence and the
best interest of the infant. The prenatal plan should opti-
mally include a “wait and see” approach to decision-
making, since an infant's condition after birth can be
vastly different from what was predicted prenatally.
Ethical concerns surface when even the best prenatal
care plan collapses after birth because the infant's condi-
tion is different from what was predicted. For example,
an infant who was expected to live hours or days may
live weeks or months.
36
Therefore, choices regarding
feeding, intravenous fluids and medications are opti-
mally made longitudinally, with branch points along the
way that provide opportunities to reassess the care plan
based upon new information. It is important to note that
a choice to offer some level of aggressive support for a
period of time until the medical condition can be more
thoroughly assessed does not predetermine that level of
support will continue indefinitely. A longitudinal plan
admittedly may be difficult on staff and families. Time-
limited aggressive treatments and a later decrease in
level of interventions may feel less comfortable than a
more straightforward and consistent care plan. This dis-
comfort can occur even when the goals of a time-limited
approach are as simple as gathering additional medical
information and/or allowing the family to spend time
with their infant who may likely not survive.
In contrast, a family could decide prior to or follow-
ing birth to forego aggressive treatment if the burdens of
treatment outweigh the benefit for the infant.
19
Palliative
care is an ethical option for cases involving severe
anomalies.
37
If palliative care or another care plan is cho-
sen, the obligation for a clinician and a pregnant woman
is to make care decisions based upon the best interest
of the infant.
21
The practical use of the “best interest”
standard requires that the decision-makers use the best
available information to choose the option for care.
38
Applied to
Case 1
, an intervention is medically and
ethically indicated following the best interest standard
when the benefits outweigh the suffering for the infant.
ETHICA
L ISSUES: SEVERE OI, PED
IATRIC
Moderately severe OI (types III-VIII) is character-
ized by evidence of connective tissue malfunction; its
clinical presentation is extremely heterogeneous and
can include varying levels of severity of: fractures,
reduced bone mass, short stature, skeletal deformities,
blue sclerae, dentinogenesis imperfecta, joint laxity and
adult onset deafness. The stated objective in the treat-
ment of patients with moderately severe OI is to provide
the best long-term function and autonomy possible in
order to foster relative independence and promote social
integration.
39
Case 2
exemplifies a parent-physician disagreement
based upon different understandings of medical indica-
tions: the drug seems no longer to be effective, there is a
question of an unfavorable risk versus benefit ratio and
continued use of the drug may preclude the potential
benefit of intermittent use in the future. In similar and
closely related cases, parents could demand a new drug
that is controversial or under a research protocol and
whose effect in children is unknown or not currently
completely understood. An important task in
Case 2
is
to address ethical questions which include: How should
the clinician treat a request that he/she thinks is likely
unreasonable? What is the role of David's mother in her
son's medical care? What is David's role in decision-
making as he grows older?
Shared Decision-Making Continuum
The process for decision-making within the clinician-
patient relationship has changed dramatically over
recent decades and continues to evolve. In the early
to mid-twentieth century health care decision-making
relied on a paternalistic model that gave physicians
authority to determine the course of care for their
patients. The end of the twentieth century witnessed
a pendulum swing to an autonomy model that placed
patients in control of their own health care decisions.
In reality, neither model worked well for patients or
CASE 2
David is 5 years old with moderately severe OI and
his mother is pushing for further treatment with pami-
dronate even though a significant fracture rate contin-
ues. The clinician explains that the treatment effect is
likely lost given David's continued fractures, and the
side effects of continued treatment may be harmful.
Nevertheless, David's mother views pamidronate as a
panacea that will provide significant benefit and she is
demanding the continuation of treatment.
