BWH Clinical Ethics Case Review
Why Do We Still Need Stories?
In 1985, Robert and Esther Wiese established an endowment at BWH to enable an annual lecture in clinical ethics and medical humanities. Over the last three decades, the Wiese Lecture Series has sponsored many prominent and influential speakers and is an important component of the Brigham’s ethics education program. Each year the BWH Clinical Ethics Case Review will devote an issue to the Wiese Lecture; readers are also invited to view a video of the lecture.
This year’s Wiese Lecture: “Why Do We Still Need Stories?” featured Martha Montello, PhD, an ethicist at Harvard Medical School who is one of the scholarswho developed a narrative approach to clinical ethics. Dr. Montello spoke about the importance of patient and family stories in shaping moral choices at critical junctures in patient care. Although typically used in the process of an ethics consultation, methods for making sense of stories are recommended for any clinician who helps patients and families move forward through the challenges of illness. Except as otherwise cited, this article is drawn from Dr. Montello’s lecture.
“What Are You Going Through and How Did You Get Here?”
In narrative ethics, these are the central questions. Unlike the common “principlist” approach, which focuses on applying four principles – autonomy, justice, beneficence and nonmaleficence – to ethical dilemmas, a narrative approach gives priority to questions about how the stakeholders came to be in the moral predicament they find themselves in now, and how they hope to move on from there. “Understanding the how, we … explore with them the best way to move forward” (Montello 2014).
Consider the case of a successful professional who suffered a devastating brain injury from an accident. After undergoing several surgeries, he improved beyond expectation but still had significant physical and cognitive disabilities from which he was unlikely to recover. The patient now needed a shunt to drain fluid from his brain. The patient’s wife, who was his designated health care agent, refused to consent to this life-saving procedure. The neurosurgeon strongly felt that he couldn’t let the patient down after coming so far and called for an ethics consultation.
How did the wife come to be in this quandary? What did it mean to her? To reach an understanding of another person’s moral reality, we need a method for discerning what matters most to that person. Narrative ethics employs three instruments to that end: mattering maps, narrative competence and moral imagination.
As defined by Rebecca Goldstein in her novel “The Mind Body Problem”, a mattering map is “a projection of its inhabitants’ perceptions … [of] what matters to [them], what matters overwhelmingly” (Montello 2014). It identifies the people, places and events that have been most influential in shaping their lives. As we listen to stories of patients and families, we help them define the contours of their personal mattering map and their location on it vis-à-vis these important characters and landmarks.
The second instrument, narrative competence, helps us to perceive the topography of another person’s mattering map. Narrative competence is the ability to discern the key elements of a story: voice, character, plot and resolution. As readers of good books, we’ve all developed skills in this regard, which we can draw on in our capacity as listeners as well.
Starting with voice, we ask, “Who is telling the story?” bearing in mind that that there’s no such thing as a reliable narrator. Each of us sees the world through the lens of our own personal biases; often, it takes multiple points of view to arrive at a full enough picture of the truth to grasp what’s going on.
Turning to character, we inquire, “Who is at the center of the story … and who might be missing?” remembering that the central character of the story is not always the patient in the bed or the loudest voice in the room. Characters that are missing can also play an influential role by their absence.
For plot, we recognize that stories create expectations as they go. One thing happens because of another: “the tick of a clock generates the expectation of a tock” (Montello 2014). Plot is about the surprises that interrupt the tick-tock sequence — a serious illness or loss that ruptures a life story. In working with patients around moral decisions, we often recognize the need to restore the integrity of their life stories. Frequently, this requires that we help to revise them, taking into account the plot twists of unexpected loss or illness.
Our aim is to “move fluidly among these first three elements … guided by an effort to grasp and interpret the stories being told, moving after a time into the fourth element: resolution” (Montello 2014). Resolving a moral dilemma is different from solving it. It is more akin to the meaning in music: progressing from dissonance to a consonance. We hope that we can help move the patient or family forward, through the current tragedy or crisis, in the short time we have with them.
The final instrument, moral imagination, is cultivated through the act of listening. Listening to a person is an active process in the same way that reading a good book is: we are transported into another world and given access to an unfamiliar reality. In the words of F. Scott Fitzgerald, we gain “privileged glimpses of the human heart” (Montello 2014). It is through these glimpses that we come to understand what matters most to another person.
In the case described above, Dr. Montello sat down with the wife and asked what she was going through. The wife told the story of the advance directive she and the patient had recently written together. The document made it very clear that the patient wouldn’t want to be kept alive in the circumstances he now faced. Being able to function in the world as he always had and being the person he had always been were of vital importance.
Other questions followed, all with the goal of understanding what mattered most to her. How might your relationships change? How might you be affected? How do you want this to go? What emerged was a story about complex relational choices. In addition to being a wife who had made a promise, she was also the mother of two young children and the in-law of a close-knit family that was now breaking apart over her decision. The meeting adjourned without the wife saying what she was going to do.
Months later, Dr. Montello received a call from the patient’s wife, who wanted to let her know what had happened. Although it could have gone otherwise, she had consented to the shunt. The patient had made a slow and partial recovery.
He was starting to read and walk again, and hoped to go back to work one day. He was getting better, but would never be who he once was.
Dr. Montello asked how the wife felt now. “I’ve never had anyone listen like you did, and that changed everything,” she said.
Supporting Literature and Media Montello, M. “Narrative Ethics,”Narrative Ethics: The Role of Stories in Bioethics, special report, Hastings Center Report. 2014:44(1); S2-S6.
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