what-when-how
In Depth Tutorials and Information
physicians.
40
While the physician provides expertise
about a patient's disease and the chances that a given
intervention may help or harm the patient, the family
brings an understanding of their values and priorities
and relationships that are an important part of real life
decision-making. This is particularly important for treat-
ments that have significant potential for harm and ques-
tionable or variable benefits.
The current standard for health care decision-making
promotes a model that is neither a strict physician-
directed nor patient-autonomy approach. Instead, cur-
rent standards recommend a shared decision-making
model that emphasizes collaboration between patients
and clinicians, or “meeting in the middle,”
41
with move-
ment back towards the important contribution of phy-
sician expertise.
42
In a shared decision-making model,
the role of the clinician is to communicate the benefits
and risks of treatment and/or continuing treatment in
understandable language, and estimate the tipping point
where the potential risks supersede the benefits. The
shared decision-making model encourages conversation
that ensures that the patient's voice is heard, and can also
include family members and other health care profes-
sionals on the team.
The shared decision-making model is widely sup-
ported as an ethical obligation by professional societies
and evidence-based medical and ethical literature.
43-45
There are a number of models describing the clinician-
physician relationship in the literature.
46-48
For our
purposes in this chapter, we will utilize Kon's shared
decision-making continuum as a basis for discussion
of
Case 2
. Kon describes a continuum of five possible
approaches for deciding, depending on the specifics:
neutral. That said, even seemingly value neutral deci-
sions can take on significant meaning for the patient that
may not be apparent initially, indicating that physicians
should always remain open to discussion. On the other
side of Kon's continuum, “patient or parent autonomy”
is usually emphasized in end-of-life decisions when
there are several reasonable options from which to
choose. Nonetheless, in end-of-life decisions there are
cases in which a patient or parent requests that the phy-
sician take the lead in a shared process.
Significant decisions that involve added levels of
uncertainty or contention, as in
Case 2
, should be situ-
ated in the center of Kon's spectrum. Such cases usually
include some aspects of each of the types of patient-
physician interactions, but should be anchored on the
family's values and the patient's best interest. Informed
persons of good will (doctors and families/patients)
may differ regarding the interpretation of the perti-
nent medical information as well as the relevant val-
ues, resulting in divergent evaluation of benefits and
burdens in any given case. Difficult treatment decisions
involve value-centered choices and may change when
the decisions involve new information, uncertain or
unknown outcomes, and/or high impact for the patient
and family.
49
How should the clinician react in
Case 2
when the
patient disagrees with the medical assessment and plan?
Initially, the parties involved may identify the problem
as misunderstanding, incompetence, unreasonable-
ness, unwillingness to listen, injustice, etc. When the
disagreements preclude further discussion, an ethics
consultation or care conference may be helpful. Ethics
consultations commonly deal with issues of patient
autonomy, communication disagreements and conflict
resolution, which is a primary goal of ethics consulta-
tion.
50
Included among the skills that an ethics con-
sult involves are: reframing the problem, lowering the
“heat” of the disagreement, refocusing patient and pro-
viders on the goals of care, summarizing for the patient
the differences in perspective and recommendations,
and others. In a safe and neutral environment, patients
and providers can often begin to identify the actual
sources of the conflict via a respectful process of listen-
ing to all perspectives and jointly developing a reason-
able course of action.
51
Sometimes all options fail and the patient-provider
conflict is irresolvable. The patient/family does not have
a monopoly on autonomy. The physician is required
to spend significant energy to explain the reasoning
behind the medically reasonable option and encourage
an open exchange about the process. If second opin-
ions and ethics consultation do not facilitate a way for-
ward, a physician may rarely need to choose to step
aside from the treatment relationship and transfer the
care of the patient to another appropriate provider. In
●
Patient- or agent-driven (patient autonomy): clinician
presents all options and the patient makes the
decision as to the course of care.
●
Physician recommendation: clinician presents all
options and recommends a course of action based
upon the patient's values rather than his/her own.
●
Equal partners: patient and clinician work together
to reach a mutual decision; patient values guide the
decision-making.
●
Informed nondissent: clinician determines the best
course of care based upon the patient's values and
informs the patient. The patient agrees or vetoes the
decision.
●
Physician-driven: clinician independently makes the
decision about the course of action; this applies only
to those decisions that are value neutral.
While the “equal partner” decision-making approach
is held as ideal, professionals in actual situations will
use different approaches for different types of decisions.
According to Kon, physicians should only make unilat-
eral “physician-driven” decisions when these are value
