Imagine cases like the following:
Worried about liability for assault, a doctor calls
the ethicist after a patient refuses to allow removal
of a Foley.
A patient-appointed surrogate refuses a safe
discharge to SNF, while the patient’s estranged
daughter agrees with the care team’s discharge
plan.
Members of the care team experience moral distress
as a patient in a long recovery from brain surgery
undergoes painful multi-hour dressing changes
without a prognosis of clear benefit.
Cases like these frustrate everyone involved,
not because they indicate complicated ethical
dilemmas, but because they center on conflicts
between plans of action that are mutually
unintelligible to each of the parties involved.
In the first case, for example, the medical team
simply cannot understand why the patient
would compromise his safety by refusing the
removal of a source of infection when the
catheter is no longer providing medical benefit.
Likewise, it seems equally obvious to the
patient that removal is not worth considering.
The conflict prevents both the patient and the medical team from achieving their preferred
goals; and so their frustration mounts, their
appraisals of the other’s motives darken, and
their thoughts turn to litigation. What should
have been a routine interaction becomes a
threat to patient care and to the professional-patient alliance.
Rita Charon’s exploration of narrative
competence, combined with Gabriel Marcel’s
distinction between problems and mysteries,
offers a path out of this clinical dead end.
Together, Charon’s and Marcel’s insights
provide a fresh perspective for cases like these
and demonstrate how approaching care with
narrative skills can improve clinical outcomes at
the bedside.
In her landmark work Narrative Medicine,
Charon defines “narrative competence” as the
possession of “skills of recognizing, absorbing,
interpreting, and being moved by the stories
of illness.”1
Narrative competence, then, is
a multi-dimensional skill set and requires
the development of an array of cognitive
and emotional abilities. Charon’s reference
to interpretation is of particular importance
with respect to the frustrating cases we’re
considering. Including that skill within narrative competence suggests that our
attention to the stories of illness our patients
bring and enact is always a kind of seeing-as.
If Charon is right, how we see our patients
and interpret their suffering matters. We can
describe two opposed hermeneutical stances
with categories provided by the French
Catholic philosopher Gabriel Marcel. In several
of his texts, Marcel distinguishes between
problems and mysteries.2
Understanding that
distinction can help to clarify the demands of
narrative competence in patient encounters.
When I interpret a situation as a problem,
in Marcel’s term of art, I construe it as
fundamentally an object of manipulation.
It doesn’t directly involve me; I am not a
participant but an observer, even if one with
ambitions to change the situation for the
better. A problem can be solved with the right
resources and techniques. Anyone with the
requisite skill set should be able to address it
effectively. So, a problem calls for cleverness,
technical know-how, or expertise. If I am
confronted with a problem, I will focus my
response on answering how questions; that is
to say, I will concern myself with inquiring
into the most effective and efficient means for
manipulating the parts of the whole to obtain a
given, “successful” result.
If my computer crashes, for example, I find
myself confronting a problem. Though I
depend on the computer in numerous ways and
find my activity hindered when it fails, I have
not crashed with the computer. The problem
remains external to me, and I look for an
effective technique to manipulate hardware and
software to reverse the failure and prevent it
from recurring. If I can just learn how to wield the right method, I can control the situation
and remove the obstacles to my action.
But even in solving problems, method is rarely
enough. Complex problems in information
technology, plumbing, or car repair call for
sophisticated knowledge, trained perception,
and finely honed intuitions. Solving medical
problems is even more demanding, and
the technical skills that make it possible,
correspondingly admirable. Nevertheless,
the ability to solve medical problems is not
enough to empower practitioners of the art of
medicine to reach the ends of their practice by
their means alone. In the medical context, the
limitations of interpreting patient encounters
solely as technical problems become readily
apparent.
For example, a problem that cannot be solved
becomes fertile soil for the growth of cynicism.
The limits of my IT problem-solving abilities
make me much more cynical about computers
than my engineering-student son. This
phenomenon is sadly familiar to most of us
who work in health care. The patient whose
problems resist our best techniques is the
patient who is also most likely to become the
object of cynical and exasperated comments.
For such a patient, another hermeneutical
stance is necessary, and Marcel’s description
of mystery provides an apt alternative. When
I interpret a situation as a mystery, it doesn’t
manifest itself as an object of technical
manipulation. It cannot be held at a distance
because it evokes personal attitudes such as
wonder or hope. Consequently, it involves me
in a way that goes beyond an acquired skill
set, enlisting me as a participant rather than
a mere observer. Simone Weil’s reflections on the power of attention suggest another
way to characterize the hermeneutical stance
that correlates with mystery: to interpret a
situation as a mystery rather than a problem is
to respond to it with attentive presence before
attempting to solve it with technique.3
One’s own suffering is a clear case of a
phenomenon best approached as mystery. John
Donne, reflecting on his life-threatening illness,
wrote, “As sickness is the greatest misery, so
the greatest misery of sickness is solitude.”4
But isolation is not amenable to technique
or expertise; it invites one, not to cleverness,
but to hope—or despair. I cannot hold it
out at a distance, mastering it as an object of
observation or manipulation, and it makes me
long for the attentive presence of another.
The suffering of others calls for interpretation
as mystery as much as our own. Kenneth
Gallagher, commenting on Marcel, insists,
“only one who participates with me in my
suffering has the right to interpret it for me.”5
Those of us caring for patients cannot avoid
interpreting their suffering; so, if Charon and
Marcel are right, then we must earn that right
by finding a way to enter into their suffering.
The questions suggested when we take a
patient’s illness as a problem offers no path
to that goal, but rather sets the suffering at a
distance and attempts to control it by asking
how we can resolve it and what techniques
will allow us to do so. A hermeneutical stance
of mystery invites different sorts of questions.
For example, when faced with resistance to our
technical skills, the question why, asked with
openness and a wondering curiosity, brings
us into the complex of ends and purposes
that constitute the intelligibility of a human
life. Likewise, engaging such patients with the question what does it mean to you can manifest
the forms of attention and perception in which
the patients themselves become aware of their
suffering. We can then join them in their
vulnerability, their unwilling openness to a
world of pain and solitude.
Because it concerns human suffering, then,
narratively competent medicine must begin
with attentive presence to mystery; and those
acts of attention will often reveal problems
suitable for medical skills. Mystery does
not displace problems but contextualizes
them. Beginning with attentive presence to
a patient’s story of illness can bring to the
surface problems that medical skills can then
appropriately address. Or perhaps we might
better say that our problem-solving can, at its
best, become an instrument of our attentive
presence, rather than a replacement for it.
Ultimately, problems are solved for the sake of
entering into the mystery, which is why Our
Lord insisted on a personal encounter with the
woman who suffered from a hemorrhage, even
after she had already experienced the resolution
of her problem through the touch of his hem.6
We need both stances of problem and mystery
to serve our patients; but we must have them in
the right order.
A shift from prioritizing problem to
foregrounding mystery led to resolutions in
each of those frustrating cases which we began
with. In each case, attempts to move beyond
technical problem-solving to some participation
in the patient’s own encounter with suffering
brought to light the latent intelligibility in
otherwise frustrating forms of resistance that
had stymied technical problem-solving.
In the first case, pursuing those questions that can open to mystery revealed something new.
When the team finally asked why the patient
was refusing the removal of the Foley catheter,
they learned that what it meant to him diverged
decisively from what it meant to them. Rather
than focusing on the catheter as a dangerous
source of infection, the patient saw its removal
as a threat to his dignity and comfort, since he
could not effectively use a urinal. An offer of
absorbent undergarments resolved the stand-off.
Similarly, in the second case, deeper
conversation surfaced the surrogate’s picture
of the rejected discharge option—a picture
of his friend wasting away in a wheelchair in
some institutional hallway, with an afghan
blanket thrown over his knees. When the team
acknowledged the force of that framing and
provided the surrogate with another, more
accurate picture, a path opened for mutually
intelligible decision-making.
Finally, in the third case, the plastic surgeon
continued to cheerfully predict that success
was almost at hand, through surgery after
painful surgery and multi-hour wound changes
with heavy pain medication—for a patient
whose other comorbidities were themselves
significant. Empowering the patient’s family to
present their concerns frankly to the surgeon
helped him to re-direct his attention from the
technical problems of reconstructive surgery to
the patient’s and family’s hopes and fears. The
surgeon quickly saw that re-contextualizing
his technically proficient surgical problem-solving as an instrument for encountering the
mystery of the patient’s suffering—rather than
as the goal of the patient encounter—required
a re-evaluation of the treatment plan and a
transition for the patient to another level of
care.
In all these cases, then, narrative competence
at the bedside, understood as the ability
and disposition to ground interventions in
an attentive presence to the mystery of the
patient’s suffering, proved the key to achieving
the clinical outcomes most appropriate for the
patients. Renewed attention to developing the
skills of narrative competence promises, in
many situations, both to improve the care of
patients and to address some of the frustrations
of their caregivers.
RANDY COLTON, PHD, HEC-C
Director, Ethics
Mercy Northwest Arkansas
Rogers, Arkansas
ENDNOTES
- Rita Charon, Narrative Medicine: Honoring the Stories of
Illness (NY: Oxford University Press, 2006), 3.
- For one important example, among others, see Gabriel
Marcel, Being and Having, trans. Katharine Farrer
(Glasgow: The University Press, 1949; repr. Westminster,
Dacre Press), 116-121.
- See especially Simone Weil, Waiting for God, trans.
Emma Craufurd (NY: Harper and Row, 1973).
- John Donne, Devotions Upon Emergent Occasions and
Death’s Duel (NY: Random House, 1999), 26.
- Kenneth Gallagher, The Philosophy of Gabriel Marcel
(NY: Fordham University Press, 1962; repr. Barakaldo
Books, 2020), 64.
- Luke 8:40-48.