Life is full of decisions. For most us that means weighing options and
making a choice that best fits with our values and the ‘facts’ related to the
decision. Facts and values are in many
respects analogous to our heart and mind or ‘what we want’ versus ‘what we
know.’ The less we know before making a
decision the greater the chance we will make a choice that is not consistent
with the facts, our values or both.
Medical decisions are no different than any other kind of decision. Accessing medical facts relevant to a medical
decision, however, can be difficult.
Likewise understanding our values can be unclear for health states we
cannot realistically imagine. Physicians
are the primary conduits of medical information for most patients facing a
medical decision. Curiously physicians
are also important in helping a patient sort out their values. Informed consent is that process whereby a
physician imparts medical facts and clarifies a patient values.
Informed consent is a modern
feature of western medicine. The
philosophical underpinnings of informed consent are diverse. Clearly the principle of autonomy comes to
mind but beneficence and justice are also important. More broadly understood, informed consent
draws from deontological ethics wherein physician duties to patients and
society are recognized. Simplistically
informed consent reduces to disclosure, competency and choice. Physicians as purveyors of health information
have a duty to disclose to those in their care the health information necessary
to ensure the patient makes an informed choice.
From an ethical perspective, competency is that state wherein the
patient understands and can manipulate the disclosed health information so as
to make a choice that reflects the facts of the decision and how those facts
are personally valued. Reflecting on
these elements should give us all pause.
While informed consent law and litigation has focused on what is to be
disclosed, the ethical principles upheld in informed consent are better
captured by what the patient comprehends since this is the basis upon which
choice is made. Informed consent,
therefore, is not about dumping voluminous information on the patient and
letting them sort it out.
Among members of the Navajo Nation
it is a common belief that to speak ill of something increases the likelihood
of that adverse event happening. In the
context of informed consent this can mean to disclose treatment risks will provoke
these events to occur. This is an
example of the tension between disclosure and competency. Members of the Navajo Nation have declined clearly
beneficial treatments because the informed consent disclosure was seen to
induce the uncommon adverse events associated with the treatment. If autonomy were the only principle honored
in informed consent then disclosure of risks in this context would undermine
beneficence. Do such situations then
warrant paternalism? No. What should be understood is the complex and
inexorably time-consuming process of understanding the context of a disease in
the life of an individual and how treatment decisions are made within that
context.
Physicians often manage illnesses more so than disease. The distinction
being drawn here is that a disease references the medical facts present in a
given person but an illness considers how those fact manifest in a given persons life. Consider two women who
void 15 times a day. One woman is a
rural mail carrier who comes from a very traditional American home. The other woman is an immigrant office
worker. Access to a bathroom is vastly
different between these two women. The
cultural expectations of adult life are also different. These differences will very likely impact
which of these two women will present for treatment for what is precisely the
same biomedical facts. Acknowledging the
distinction being made here highlights again the need to understand the
patient’s illness when rendering an informed consent. The biomedical facts of a disease will not
necessarily precipitate the necessary disclosure to ensure a patient is
competent to make an informed choice regarding treatment.
There are many books and articles written on the topic of informed consent.
The topic can become overwhelming to consider and many of the issues
alluded to above cannot be made formulaic yet this can be the impression of
informed consent for many clinicians; just get the patient to sign the informed
consent form. Physicians have an ethical
duty to construct the decisional environment necessary to allow a patient an
informed choice. This process is
inevitably imperfect. This process
should inevitably call on the clinician to know treatment specifics and the patient to whom these specifics
will be disclosed. This process is a
disposition for ethical care that honors the best traditions of medicine.
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