what-when-how
In Depth Tutorials and Information
professional interactions, requires a description of
the medical facts surrounding the procedures, the
risks and benefits therein and the likely outcomes -
acknowledging the uncertainties that are entailed.
Moreover, a shared assessment should focus not just on
the medical facts but the values, feelings and motiva-
tions of the clinician and patient.
due or owed to persons. Based upon the principle of jus-
tice, the concern for patients living with chronic condi-
tions without a cure, like OI, is that they may have access
to medical care yet receive less comprehensive treatment
than others. It is important to recognize that some insur-
ers and providers fail to treat disabled patients equitably
when compared to patients not perceived to be disabled.
For example, clinicians may be hesitant to offer reason-
able treatment options to Maria for her infant with type
II OI, evaluate a newly approved treatment for David,
provide obstetrical care to Leah or explore different alter-
natives to treat Dan's pain because these are difficult
challenges.
OI patients are sometimes dependent on others
and are vulnerable. The temptation in medical deci-
sion-making is to assess their quality of life as poor.
Moreover, clinicians may underestimate the joys and
overemphasize the suffering of those living with OI. As
a result, care may be provided to OI patients unfairly
based on the clinician's value judgments about their
quality of life.
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The ethical obligation is to reconcile
differences on what constitutes quality of life for the
patient and provide treatments that contribute to his or
her overall well-being.
Balancing Autonomy and Beneficence
In both
Case 3 and Case 4
, the challenge is to balance
the principle of autonomy with the principle of benefi-
cence. The need to balance these principles occurs fre-
quently in health care. Ethical theory describes core
values and principles that cannot be ranked; one prin-
ciple does not trump the others. The ethical obligation is
to weigh or balance the principles based on the unique
situation under discussion as a foundation for coming
to the best course of action with the patient. The ques-
tion then becomes discerning when potential harm to
the patient tips the balance to favor non-maleficence
over autonomy, or when does a marginal chance for
beneficence suffice to accept the choice of an invasive
procedure? For example, the physician in
Case 4
must
ultimately decide if the potential for harm to Dan from
the surgery outweighs his request for a surgical means
to address his hip pain. When the risk is moderate to
serious and the indications are less than clear, as in
Cases 3 and Case 4
, it is critical to assure that the patient
is integral to the decision by utilizing the shared deci-
sion-making approach.
The obligation of the clinician is to make recom-
mendations based upon the patient's best interest,
acknowledging the power accorded to him/her as the
professional with expertise in the patient-doctor rela-
tionship. It is also important to be humble about pre-
dictions of outcome, and acknowledge the uncertainty
often involved in uncommon decisions like these. One
suggestion is to structure the conversation to include the
best that the surgery can hope to offer, but also to help
patients think through what will happen if “the worst”
happens. Especially as the potential for more serious
harm increases, a clinician is obligated to minimize harm
to the patient, even when the competent patient provides
informed consent and understands the consequences of
the decision and continues to seek a questionable medi-
cal procedure.
Eugenics
Eugenics is formally defined as a state policy aimed
at improving the genetic makeup of the human species
through selective breeding. The twentieth century wit-
nessed the eugenics movement in America as well as the
atrocities of the Nazi regime, which are stunning examples
of how genetic information can be used to discriminate
against targeted groups in a society who are considered
less desirable or contemptible. In contemporary times,
eugenic practices may result from autonomous choices
on the part of some individuals, employers, professionals
or from insurers refusing to cover individuals who have
disorders that entail life-long and costly care. Currently,
the Genetic Information Nondiscrimination Act of 2008
strives to protect Americans against discrimination based
on genetic information regarding health insurance and
employment. There is still some evidence of eugenic prac-
tices by insurers,
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and other unjust practices that block
persons with disabilities from fair access to goods and
services.
Genetic technology, if abused, could result in dis-
crimination against individuals with chronic or dis-
abling genetic disorders based upon fear, quality of life
assumptions or cost-benefit analyses. The most com-
mon concern regarding the potential for eugenics in
genetic medicine and society is in the area of prenatal
screening. Screening is possible for an ever-growing
number of fetal disorders through a noninvasive blood
Justice
In addition to the principle of respect for autonomy,
Cases 3 and Case 4
raise the issue of the ethical principle
of justice or fairness. Justice requires the provision of that
which is fair, equitable and appropriate in light of what is
