Tag Archives: ethics

Altered perspectives

One of the arguments Arthur W. Frank makes in his book The Wounded Storyteller–and in his subsequent books about “illness narrative”–is that there’s a compelling ethics for medical diagnosticians and caregivers involved in just listening to the other person’s story. The difficulty emerges when the storyteller cannot put his or her story into words or lacks enough objective distance from the illness to narrate the kind of story that others are expecting.

When people’s circumstances push into the chaos realm, they’re in the midst, overwhelmed; few of them can construct a cogent and concise narrative. In their pain, in their grief, everything seems equal–no beginning, no end, all middle.

The listener expects: a beginning. a middle. an end.

The listener expects: chronology. a goal. a desired outcome.

If the listener’s job means determining a course of healing, the listener requires history, onset, comparisons. Truly good diagnosticians therefore need more than sleuthing skills, experience, and education. They need to listen well in the midst of the storyteller’s chaos; Frank calls this listening with.

That often means taking a deep breath and endeavoring to change perspective.

~

[Which, by the way, is excellent practice for poets.]

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Himalayas: view from a high lake plateau (Snow Lion tours)

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Himalayas from satellite: a fractal view

~
We cannot climb into an airplane and get an overview of a human being’s situation. Nor can we get into another person’s thought processes to determine what’s going on. Listening without rushing the person, without offering advice, without finishing the sentences with what we expect to hear–that’s a hard task.

In a previous post, I tried to replicate what it was I could hear when someone I cared for experienced cognitive damage.

It was very, very difficult to listen. For me, heart-breaking because of my previous understanding of who the person was. It was only in her final days that I started to realize I’d needed to change in my relationship with her in order to get some idea of what she wanted to say. And it was too late, really.

~

As another Best Beloved is now experiencing significant cognitive changes, I want to do better. I need to acknowledge the chaos narrative, the interruptions, the lacunae in the person’s story. It’s important that I develop a new perspective on what a conversation entails, too; my expectations surrounding a conversation no longer hold, and both of us will get frustrated if we stick to former habits.

If sometimes a visit feels a bit like the Mad Hatter’s tea party, so be it. There’s a story in that, after all, thanks to Charles Lutwidge Dodgson.

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Tenniel’s sketch for Alice’s Adventures in Wonderland

And, just as an aerial view of the Himalayas alters the perspective of what the mountains are and how they appear, an altered perspective of a loved one keeps the person, as a human being still in the world (no matter how changed), in view. True, perhaps with changed patterns and unexpected gaps that we who love them may grieve the loss of. The conversations may be interrupted and chaotic, or full of long pauses and grasping for words and concepts. It is just a different kind of human communication.

Not what I expect, but what I am given. I’m trying to listen with, before it is too late.

Listen better

Arthur W. Frank’s The Wounded Storyteller, which I’m currently reading, deals with medical ethics, personal narrative, illness, and the community (all of us, really) who may need care, give care, and/or who realize there is a socio-emotional impact when friends, coworkers, and family members become ill and thus require care. A sociologist by training, Frank examines illness stories as testimonies that point to a social ethic and asks all of us both to tell more when we experience pain and to listen better when others are telling us about their experiences of illness.

“Tell me about your despair, yours, and I will tell you mine.”

—Mary Oliver, from “Wild Geese”

At first this idea sounds unpleasant–one thinks of the stereotype of tedious conversations among the elderly about various surgeries and too-intimate revelations about prostates, livers, stomachs, and bowels (my dad calls these monologues “organ recitals”). That response–evasion, withdrawal, revulsion–is exactly what Frank seeks to change.

But then I consider the way I have heard stories of illness experience from hospice patients. How varied they can be. Some fragmented, some specific, some pious, some stoic, some anxious. And some that are beautiful. These stories aren’t just for (about) the person who has undergone the suffering. They are also for me, the listener. “When any person recovers his voice,” says Frank, “many people begin to speak through that story.”

He later writes:

One of our most difficult duties as human beings is to listen to the voices of those who suffer. The voices of the ill are easy to ignore, because these voices are often faltering in tone and mixed in message, particularly in their spoken form before some editor has rendered them fit for reading by the healthy. These voices bespeak conditions of embodiment that most of us would rather forget our own vulnerability to. Listening is hard, but it is a fundamental moral act…in listening for the other, we listen for ourselves. The moment of witness in the story crystallizes a mutuality of need, when each is for the other.

He would like to see an ethics among medical people and caregivers that dictates not just a compassion for the lot of the ill person but a perspective that the person, as a person, is not diminished by the fact of illness–not made into data, case study, or even into patient or client, any of which reduces the person to a body containing disease or disability. He argues for a full embodiment of pain in narrative as well as in physiology, for only with and through storytelling can we begin to experience the perspective of the other.

I am not very far into the book yet, but I’m finding the concepts relevant to my current life circumstances. I know how deeply I treasure a good listener. So working on listening better, myself, offers more people the chance to recover their voices, to speak through story.

Science & philosophy

The small, religiously-affiliated university at which I work graduates, percentage-wise, a large number of baccalaureates in the sciences although it offers a liberal arts-based core curriculum. How does that affect what coursework students must do? For starters, two Theology courses and one Philosophy course are required for graduation.

Three critical-thinking method, scholarly courses ought not to be more than a student in the sciences–or any other discipline–can handle; but I hear a bit of resentment among the undergrads. They question the necessity of abstract ethics classwork, wondering how such material will be applicable to a fast-paced, technologically-advanced, science-oriented career or life. Philosophy doesn’t seem to be a skill set to them.

SocratesWhile I fundamentally disagree, I take their point. With so much new information coming at them, info-savvy young people might well feel skeptical about what they can gain from reading texts by Plato, Aristotle, Augustine, or Aquinas.

Philosophy has been around for millennia, though; empirical science as we know it–with electron microscopes, satellite-mounted telescopes, petri dishes and x-rays–is brand-spanking new by comparison. The techniques we use today seem concrete and tool-like rather than theoretical; yet as every real scientist knows, the only way developments occur is through hypothesis–theory–claim–assertion–question–pushing the envelope of the known.

Which is what philosophers have been doing for thousands of years.

The budding scientists and medical-studies researchers I encounter seldom realize that without philosophy, science would not exist. Philosophers asked the “why” questions, came up with theories and categories, tried to see into a future that might someday have the technology to confirm or refute the theories they came to solely through human observation and deduction. Problem-solving skills. They were the scientists of their day, and the methods of thinking they came up with are those that contemporary scientists in all disciplines continue to employ.

http://www.isys.ucl.ac.be/descartes/images/Descartes.gif Descartes

Descartes, 1640s

A wonderful book on the way philosophy developed into biology (to take just one of the scientific disciplines) is Marjorie Grene and David Depew’s The Philosophy of Biology: An Episodic History.

The authors–a philosophy professor and a rhetoric professor–provide a history lesson in science, taking us by steps and by leaps into the development of a scientific (empirical) skill set as derived from insightful cognitive understandings of those Dead White Guys on whose thinking Western philosophy is based.

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Darwin’s finches, 1840s

Now, I am not an advocate for a strict return to the Western Civ canon; I think university education should diversify into exploring (and questioning) other modes of cognition, culture, and philosophical approaches. Yet it seems to me imperative that students continue to study, and learn to value, the history of human thought. You can be a nurse without a thorough background in Aristotle’s categorical concepts; you can learn the drill about washing hands, donning gloves, and inserting catheters–all practical, concrete skills. You can understand the rationale for all of those skills; that’s true, and practical.

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Cajal’s drawing of a pyramidal neural cell, 1913

Nurses today, however, should have the thinking skills to solve unexpected problems rapidly and rationally, which is how things play out “in real life,” to deduce that something’s going wrong even when the readouts look stable, to recognize that the hurried intern added an extra zero to the number of milligrams of medicine prescribed. They need enough background in the history of medical care-giving to question a doctor or administrator when the ethics of a patient’s care seem to be at risk. These problem-solving skills are not only crucial, they are philosophically-based.

~

 

I will dismount from my high horse now. With all the disorienting information being bombarded at me these days, I need a poem to reorient myself. Here’s one by Mary Oliver.

Snowy Egret (by Mary Oliver)

A late summer night and the snowy egret
has come again to the shallows in front of my house

as he has for forty years.
Don’t think he is a casual part of my life,

that white stroke in the dark.

==

We shake with joy, we shake with grief.
What a time they have, these two
housed as they are in the same body.

 

The ethicist & the healer

The “Morbid Book Group” recently read John Lantos’ book on ethical issues in Neonatal Intensive Care Units (NICUs), The Lazarus Case. As one of our members is a pediatric physician, one is a NICU nurse, another a hospital social worker, and another a former obstetrics nurse–we had quite a bit at stake when discussing this book, and quite a few different perspectives. Add to the mix my armchair-philosopher and educator point of view and all the questions a non-medical person has to ask to clarify the issues, and we spent the evening in lively and often challenging discussion.

Lantos tells his readers that medical ethics questions are not really answerable. They depend too much on cases, contexts, and–whether we like it or not–economic situations. An example: Until third-party payer systems are dismantled or significantly changed, confirms the doctor in our book group, NICUs will continue to be profit centers in addition to places where terrifyingly premature babies are saved, or not saved, not so much by technology as by individual circumstance over which doctors and nurses have less control than the parents of these neonatal patients may think.

The NICU nurse told us that Lantos’ book made her question her vocation. One of his observations is that NICUs have become the profit-hub of many hospitals in the USA; then, he asks tough ethical questions about “viability” and “pain and suffering.” The nurse says she sees these babies suffering and feels that too often, the suffering is prolonged when the baby is clearly unlikely to survive–prolonged because the parents cannot let go and the technology promises miracles that only occasionally occur. The doctor in our group gave us her point of view, which many of us found a bit too “scientific”–but that’s how doctors are trained, as she reminded us, while acknowledging heartily that doctors need more real-life experience in compassion, listening, and psychology than they receive in med school or as interns.

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These are the sorts of circumstances that lead us to philosophy. Lantos writes: “Moral reflection begins with a particular type of suffering,” when we are faced not with abstract ethical dilemmas but genuine, frightening, life-altering situations. Lantos argues that doctors must not be “passive vessels” dispensing adrenaline, oxygen, delivering technology to a human being whose individuality the physician may not even notice in those crucial moments. He does not deny that there is value in the dissociated emergency response protocol, when the doctor’s training takes over and pulls the person acting away from emotion.

There is a “but,” however. Lantos says there are times when the healer is the medicine, when trust in the doctor, and the doctor’s willingness to take time to listen to the  patient, can “create a moral framework for dealing with the limitations of being human, of getting sick, suffering, weakening, dying,” when it is understood that the patient might die while under the healer’s compassionate care, and there need be no blame.

How do we get our society there?

“We make changes in medicine the way we make changes anywhere,” says our book-group doctor. “All of you are asking me very hard questions. I don’t have answers to all of them, and you may not agree with my answers or my rationale. And that’s great! Medicine needs to be challenged. There is no way for the medical industry–and it is an industry–to grow in a more positive way if patients and their families, ethicists, and even the damned lawyers remind us that behind the technology is always, always, a singular human being…it ain’t just a science. It’s an art.”

Doctors do need to be educated in the humanities, we agreed, and to spend more time learning about culture and psychology through experiences that develop compassion. Patients need to learn to ask more specifically for that kind of response, and to let hospital administrators understand how often it is lacking. Most of all, we need not to shy from asking the Hard Questions, those life-and-death ethics questions. Not for the sake of answers, but for the sake of discourse and understanding.

If you want a breezy article about how to go about the process of talking about what we fear and wonder at, here’s an article from HuffPost. A reply to Lantos’ critique of NICUs from Jonathan Muraskas and Kayhan Parsi is here.