Leaven #12

“It was my worst experience in seventeen years as a physician.”

So began the physician with whom I worked most closely the nine years before coming to Barnes-Jewish. His story needs to be read aloud to engage fully the force and meaning.

“I was awakened in the middle of the night by a partner in his second year of practice. He called from labor and delivery for help with an ultrasound. He was having a hard time locating the fetal anatomy. When I entered labor and delivery, I was immediately struck by a horribly offensive odor.

The patient was twenty-four years old and pregnant for the seventh time. Estimated gestational age – twenty-two weeks. She had experienced four spontaneous abortions and two cesarean deliveries. She was an IV drug abuser. She smoked at least two packs of cigarettes each day. She had been treated for a sexually transmitted disease early in the pregnancy. Her membranes had ruptured three days earlier. She had developed fever, abdominal pain, and bleeding. When she finally made it to the hospital, she had a temperature of 102.7.

My partner could not by ultrasound find any sign of amniotic fluid, identify any landmarks, or even find the fetus. I repeated the ultrasound with similar results. I then performed a vaginal exam. The odor was terrible. Once I inserted the speculum, the patient spontaneously passed fetal parts – an arm . . . a shoulder . . . attached ribs . . . the spinal column. Additional fetal parts were visible at the cervix. We placed a subclavian catheter to secure IV access, gave her three different antibiotics, and took her to the OR for a uterine evacuation. She lost two liters of blood. She became hypotensive, requiring IV neosynephrine and IV pitocin. My partner placed an arterial line to monitor her blood pressure. I removed the remains of the fetus piece by piece . . . bone by bone. The patient was then taken to the ICU on medication to support her blood pressure.”

Such experiences account for the ‘war’ vocabulary so deeply rooted in our professional discourse. Listen for it – e.g., “dodged a bullet” . . . “in the trenches” . . . “call the troops” . . . “began the day ready for battle” . . . “brought out the big guns (drugs)” . . . “a casualty” . . . “how many hits (admissions)?” . . . “captain of the ship” . . . “the front lines” . . . .

In a ‘war’ story, the storyteller is the main character; the experience, precarious. ‘War’ stories can be cathartic, reinforce confidence, bring relief, build camaraderie. I suspect most of us have told ‘war’ stories to/with peers in a heroic (Rambo?) tone to gain/hold a place at the table or to compete in ‘one up-manship’ entertainment. But experiences such as septic abortion cases wound us . . . reveal our vulnerabilities. We recount such experiences slowly, quietly, humbly. And we return respectful attention to the patient.

What story would you choose if you were asked to tell your worst professional experience? How would you tell the story? To whom would you (not) tell the story?

Think about it. Perhaps talk to a coworker.

Leaven #11

6:00 AM Monday May 21

My youngest daughter graduates from high school this afternoon.

She is like a plant with roots that need room to grow. I know. She is ready. I am trying to block the impulse to slip last-minute advice to her. I am trying to look ahead beside her. I am trying to stand in the wings away from her. I want to imagine her future. But my mind’s eye quietly keeps turning my attention to the special experiences over the past 18 years that still seem so near . . . so fresh.

One memory I thought might be leavening. I was sitting in a New England pub with a delightful British ambiance, thinking about her on the eve of her thirteenth birthday. I knew she would soon be having experiences, facing challenges, making decisions, discovering opportunities, . . . -- all out of my sight.

Before it was too late . . . before my hand had slipped out of hers, I wanted to share with her one more time my vision of a life well lived. So I wrote this bit of verse for her as a gift.

To live life well

Your cup, drink completely

Your faith, test existentially

Your love, release freely

Your joy, reveal tastefully

Your vision, pursue boldly

Your lifestyle, simplify radically

Your family, shelter vigilantly

Your friend, stand with unconditionally

Your neighbor, meet respectfully

Your vocation, embrace cheerfully

Your darkness, enter courageously

Your fears, confront vigorously

Your disappointments, weather patiently

Your wounds, tend silently

Your failures, see honestly

Your integrity, grip firmly

Your gifts, develop humbly

Your victories, celebrate gratefully

Your insights, remember clearly

Your path, mark carefully

Leaven #10

“Lady, you come here! You come here right now!”

Very early one morning, my artist friend – in his pajamas and robe – let his black Labrador Retriever Lady outside through the front door. He was standing on the front porch when he saw Lady bounding away from the house toward the street. He began shouting over and over – “Lady, you come here! You come here right now!” Then he noticed on the street in front of his house a woman out for an early morning walk. His commands brought her to an abrupt stop. She starred at him. Then she turned and fled. My friend did not recognize her. He had no chance then or later to correct her interpretation.

My artist friend and the frightened woman surely told this story from very different perspectives, in very different tones, with very different meanings. I suspect the same is often true when patients and their caregivers talk separately about the encounters they share.

For more than 25 years, it has been my privilege to be with medical teams as they care for their patients and when they reflect on their patient experiences. I listen carefully when they narrate their patient experiences as stories. Often enough hints filter into formal case reports/discussions that I can imagine how the stories would be told. Listen for such hints this week. The full stories are told elsewhere – e.g., call rooms, cafeterias, break rooms, off-campus gathering places, national meetings, dinner tables, . . . .

The stories caregivers tell about their patient experiences can easily be categorized into story types. The following story (in which I am the narrator) about a patient encounter where I worked prior to coming to Barnes-Jewish can be told in several different ways. Read the story aloud. Experiment with different styles, emphases, moods. Imagine different hearers. What story types do your oral interpretations suggest as ways to complete the sentence – “That’s a(n) _________________ story”?

It was a busy Wednesday afternoon in one of our three clinics in the rural/poor Appalachia community where I worked before coming to Barnes-Jewish. The patient – a ‘work in’ not seen before in our practice -- was in her late-20s, had four children, was now 32-weeks pregnant, had received no prenatal care. When the physician to whom she was assigned discovered the fetus was smaller than expected, he asked our senior physician David to do an ultrasound. The patient was sitting on the edge of the exam table when David and his nurse entered the room. They assisted the patient into a supine position, covering her with a sheet up to her blouse. The nurse turned down the light. As David began raising the patient’s blouse for the exam, she said barely above a whisper, “I have a lot of scars.” His first thought . . . surgery . . . perhaps a previous c-section. Once he saw the scars, he thought . . . accident . . . perhaps a burn. He asked, “In a car accident or . . .?” She interrupted and, as she starred at the wall, said quietly, “My mother set me on fire when I was three.” David had no response. It turned out the baby was fine. But what about the mother? When David and I later reflected on the case, he explained to me, “Her life is so far removed from my range of experiences. I did not know how to respond. She would never be free of this childhood experience, these scars. If my mother had . . .” His voice trailed off. At the next OB peer review meeting a few weeks later, the physician who first saw the patient could not remember her. And David acknowledged his recollection of the patient would have blurred/faded quickly if we had not paused to capture the basics of the story for a series of narratives we were composing at the time.

Think about it. Perhaps talk to a coworker.

David McRay, MD, and his family will have given 19 years of service to this rural/poor Appalachia community when they depart next year for David to design a training program for residents based on this experience and to be more directly involved in international medical relief efforts.

Leaven #9

“He’ll make a good story”.

The attending’s observation claimed my attention in two ways. First – “He’ll make a good story”.

Notice how often we use the word ‘good’. ‘Good’ is frequently part of the etiquette as we pass each other – “Good morning” . . . “Have a good day” . . . “Have a good one”. ‘Good’ is also heard in conversations about our work – “Last night was a good night” . . . “Good job” . . . “We’re a good team” . . . “That’s a good patient mix” . . . “She’s a good candidate”.

When I hear ‘good’, I find myself wondering about the criteria. When appropriate, I ask – “What do you mean by ‘good’?”

What do we reveal about our values, our priorities, our goals when we call a day, a shift, an action, an experience, a position, a colleague, a candidate, a patient ‘good’? How often do our criteria include the ethical dimensions of patient care – e.g., trust, respect, honesty, gentleness, privacy, fairness, empathy, advocacy, integrity, . . .

Second – “He’ll make a good story”.

It seemed obvious the attending did not mean a good case presentation. A good case presentation is organized, concise, informative, orderly, clear, objective. A good case presentation maintains format, gives “just the facts”, highlights relevant details, does not wander, clarifies “the big issue/s”, leads to “the plan for today”. A good case presentation answers the question – “What do I/we need to know?” You learn quickly (sometimes painfully) – “If your summary takes more than one breath, it’s too long”.

A good story has plot, angle of vision, suspense, theme, humor, texture, memorable characters, feeling, rhythm, place. A good story entertains, educates, preserves, tantalizes. A good story ‘draws you in’, stirs the imagination, has punch, calls for a verdict. A good story is hard to forget.

Patients are stories. They rarely come to us with good case presentations in hand. They, their families, their friends draw our attention to what is unique, special, more about them – e.g, “She was a nurse for forty years” . . . “He was only fifteen” . . . “She’s a classy lady” . . . We become part of their stories – most of us behind the scenes, some of us as named characters.

Patient stories have to be reduced to a series of case presentations and notes in a chart. We select a few patient encounters to tell as stories from our perspective. Which ones? why? to whom? when? where? how?

Think about it. Perhaps talk to a co-worker.

Leaven #8

What experiences have unparalleled (incomparable) value for you?

One clue would be to recall times when you have called an experience “eye opening”.

Pause with the ‘eye opening’ image. Eyes can be naively closed . . . closed in slumber . . . closed in meditation . . . clenched shut. Eyes can be closed by ignorance . . . by prejudice . . . by pain . . . by ideology . . . by selfishness . . . by fatigue . . . by fear. Eyes can be opened by education . . . by travel . . . by the unknown in ‘for better or worse’ . . . by deep friendship . . . by severe accident/illness . . . by awe.

Is an ‘eye opening’ experience a ‘life changing’ experience? Usually not. Why? Why do so many ‘eye opening’ experiences fade away? Not enough time . . . Not enough energy . . . Inadequate processing skills . . . The discomfort . . . Pressing obligations . . . Old friends who cannot understand . . . Disturbing self-examination . . . The necessary investment in similar/new experiences . . . The uncertainty . . . The loneliness . . . The risks . . . The silence.

It remains an experience of unparalleled (incomparable) value that we have learned to see for once the great events of world history from below – through the perspective of the barred (put out, cut out, blocked), the suspects, the badly treated, the powerless, the oppressed (restrained), the scoffed (derided, mocked), in short the perspective of those who suffer. (It is) only in this time when neither bitterness nor envy (jealousy) has cauterized (corroded, gnawed away) the heart that we see with new eyes great and small, fortunate and unfortunate, strong and weak; that our view of greatness, humaneness, justice, and compassion has become clearer, more free, more incorruptible (not subject to bribes); indeed, (that we see) that personal suffering is a more suitable (qualified) key (code, cipher), a more fruitful principle, than is personal good fortune for exploring the world by observation and action.

The person who penned this value statement was born into upper-class privilege. His cultural refinement and public service were taken for granted. Previous generations of his family had made significant contributions in academics, politics, church life, the military, and music. When totalitarian darkness descended on his country, he and several others in his family resisted. He forsook escape. He shared fully in his fellow conspirators’ resolve to oppose a devastating head of state. He maintained his cover and theirs in prison. He let go ideas that had collapsed under the weight of horrific evil and human suffering. He sketched in isolation the electric new ways he had begun to see. He hung from the gallows in honorable defeat, his integrity intact.

Participation in patient care places us uniquely near vulnerable individuals in pain. Their demographics vary. They have at least one thing in common. Their stories are broken. They reveal their brokenness to us. What value do we assign the experience of being near them? Are we learning to see ‘from below’? to see through the perspective of those who suffer? Can we? Dare we?

Think about it. Perhaps talk to a co-worker.

________________________

Dietrich Bonhoeffer (1906-45) wrote the reflection about seeing ‘from below’ as he prepared an essay in December 1942 for his parents, his siblings (and their children), his closest friend (Eberhard Bethge), and his fellow covert resisters imbedded in a branch of the German counterintelligence. I have been privileged to have the assistance of my close friend Renate Bethge -- Eberhard’s wife and Dietrich’s niece -- as I revised and finalized my translation of Dietrich’s reflection on seeing ‘from below’ and his December 1942 essay. Words/phrases in parentheses offer additional nuances, add implied ideas, or indicate alternative translations.

Leaven #7

“It remains an experience of unparalleled (incomparable) value that . . .”

So begins a proposition in the history of ideas that is pivotal for my life. It has been 30+ years since I came across this proposition in a graduate course reading assignment. I still feel the full/penetrating force of the phrase -- ‘unparalleled (incomparable) value’.

Very early we begin the lifelong exercise of clarifying, testing, revising how/where we assign value. Our values serve as a prism through which we interpret information before making decisions. Some values are personal preferences we can forego with minimal disturbance. However, we regard certain relationships, experiences, circumstances, objects, and ideas to be of such importance that we are prepared to suffer great loss rather than to violate them.

The key to maintaining integrity? A trustworthy set of unparalleled values. The key to having diverse and enriching experiences/relationships? Assigning unparalleled value only where we must. Staying in this tension strengthens our capacity to tolerate ‘value dissonance’ as we seek to live well together.

Our values lead us to judgments about what ought or ought not to be done. We can usually act upon our values without much conflict. Still, we do find ourselves fairly often in situations that require a collective judgment by a number of individuals with competing values. In order to avoid harmful abuse of power, a reflective approach to decision-making -- i.e., ethics -- is necessary.

Ethics has to do with the determination of what ought to be done in a given situation, all things considered. Some differences in judgment can be traced to variations in reasoning patterns. For instance, you may be very logical, deductive, abstract. I may be more intuitive, pragmatic, affective. Other differences in judgment can be traced to variations in what we take into consideration and the value we assign to what we take into consideration.

Before a thorough analysis of possible decisions can be undertaken, the participants drawn together in the decision-making situation must respect each other enough to listen carefully in order to recognize and understand their differences. An ethical dilemma arises when compelling value-driven justifications exist for two or more conflicting courses of action. On initial examination, the justifications for the conflicting courses of action may be equally compelling.

Ethics, as a discipline within medicine, involves three steps. First, a framework is established for identifying and analyzing the differing core values. Second, a determination is made as to whose interests should be treated as most critical in the situation. Third, a course of action is adopted that promotes those interests with the least imposition of compromise or harm for those affected by the decision.

To what (or whom) do you assign ‘unparalleled (incomparable) value’?

Think about it. Perhaps talk to a co-worker.

Leaven #6

To be relieved from a deception . . . to be relieved from a misapprehension of the true state of affairs . . . to be relieved from a faulty perception of an external object . . . to be relieved from a figment of the imagination – what word/s did these definitions bring to mind?

I heard guesses this week I have heard every time I have used this didactic riddle – e.g., to understand or see clearly, . . . to be enlightened, educated, rescued from naiveté, . . . to have elucidated, explained, illuminated, . . . to have one’s eyes opened.

The answer (which I have yet to hear) : to be disillusioned.

Surprised? No doubt, because we invariably use the word ‘disillusioned’ with a burdened meaning – i.e., to be utterly deflated, crushed, disappointed, discouraged. Listen to these samples from my conversations with medical students and physicians over the past 25 years. They speak for many of us -- non-physicians as well as physicians. Do you identify?

An anxious junior pre-med student disclosed: “I have shadowed a number of physicians – private and academic – this past year and did not find one physician I would like to be around.”

A frustrated medical student, near the end of her first year, recalled: “We had the ‘keep your balance, protect your relationships’ orientation talk from the dean on Day One. And one of the medical school’s ethicists reminded us the same day to ‘nurture your interior life’. Day Two blew by all that. After the first round of tests, reality set in. Getting decent grades means 80-100 hours of study every week. What’s left for relationships? or for my ‘interior life’? The grades for my first set of tests reassured me. I can do this. But at what price? I guess the dean and the ethicist will recycle their platitudes to the next class of new students. Where is the dean? Where are the ethicists? Obviously not near enough to our experience to speak with understanding and integrity. I feel betrayed.”

A third-year medical student speaking with her attending early in her oncology ro

A weary second-year resident, during a lunch conversation, admitted: “By the third year of medical school, I realized being a physician is not what I had envisioned. Being with patients and making a difference in their lives 90% of the time would be great. Even 70%. But 40% or less? I feel stuck. What else can I do? It’s hard to quit after having invested so many years. I am not in medicine for the money. There are much faster and easier ways to that goal. My college friends are making buckets full of money while I am sacrificing my 20s and amassing an enormous debt. I am frightened by the ways I have changed. Fatigue has darkened my mood and shaken my plans. My family/friends do not understand how tired I am. Will these changes reverse after residency?”

A physician in her late-40s reflected: “I remember quite clearly my first day in medical school. The dean did not mince his words. ‘Medicine must be your husband, your wife, your children, your family, your life. If you cannot make this commitment, get out now.’ I fought to keep hold of the grand ideas that brought me into medicine. I fought against the dean’s angle on medicine. And twenty-five years later, I am disillusioned about my profession, burned out, cynical. The medical school, residency, and practice settings have worn me down.”

Such grim dispositions are too widespread among us to be ignored.

To be disillusioned is to be moved closer to the realities we face, a painful but inevitable/necessary experience for maturing into a professional. However, to be disillusioned is also to suffer a devastating blow to motivation, purpose, courage, resiliency. How we respond to both consequences of being disillusioned feeds deeply into how invested we remain in the ethical dimensions of patient care.

Think about it. Perhaps talk to a co-worker.

Leaven #5

“I am not important enough to his career for him to have time for dinner with me.”

I heard this sobering assessment a dozen years ago. It still echoes in my mind.

I knew it had been two years since my department chairperson had seen his friend. They had become close while both were junior faculty members at a prestigious medical school. My chairperson had created his friend’s first opportunities to advance. Now a national meeting in our city would give them a cherished opportunity to refresh their friendship. Or so I thought. Instead, his friend’s focus on prized seats at dinner tables with those who could open new professional doors for him left poignant signs the core of their friendship had become (or had all along been?) shallow/inauthentic.

I remember imagining my disappointed chairperson – after having been brushed aside by his friend -- recasting his recollection of the conversations and experiences they had shared. I remember wondering if his friend and everyone else around the dinner tables where he was maneuvering to be invited understood the score. I remember doubting that genuine discourse would occur around those tables.

Are you familiar with Trina Paulus’ tale about two caterpillars -- Stripe and Yellow – in Hope for the Flowers (1972)? This children’s story has a challenging twist for adults. Stripe does what he sees all caterpillars doing. As soon as he is able, he crawls with mounting excitement to the nearest caterpillar pillar. These pillars tower into the clouds in every direction as far as Stripe can see. The objective – make it to the top of one of these pillars. The method – climb or be climbed. The rationale – no one knows or takes time to think about it. Stripe quickly gets used to pushing and being pushed, to kicking and being kicked, to stepping on and being stepped on. Part way up the caterpillar pillar, he begins to wonder what is at the top. He crawls over a yellow caterpillar. Their eyes meet. They begin to talk as they continue to climb. The more they talk, the less single-minded Stripe and Yellow become. Stripe wonders to himself, “How can I step on someone I’ve just talked to?” He avoids Yellow as much as possible as they climb, but one day she is blocking his only way up. “I guess it’s you or me”, he says and steps squarely on her head. The way Yellow looks at him makes Stripe feel awful – “Can getting to the top be worth that?” He crawls off Yellow and whispers, “I’m sorry”. They decide to crawl down the pillar together – a hard but necessary decision in the search for another way of being.

When their eyes met and they began to talk, Stripe and Yellow experienced respect. The word respect shares a Latin root (i.e., specere which mean ‘to look’) with a number of words we hear/use every day – e.g., spectacles, spectator, spectacle, spectacular, speculum, speculate, suspect, aspect, circumspect, prospective, . . . . To respect someone is to look back or look again with genuine interest. To respect someone is to value the more we did not experience at first glance. Respect diminishes violence, prejudice, exploitation, selfishness, abuse. Respect expands community.

Look at today’s ‘to do’ list. We all have goals, objectives, assignments, pending evaluations. When did we last treat such as more important than respecting those around us? What if our eyes had met their eyes? When is it ethically justified to disrespect others?

Think about it. Perhaps talk to a co-worker.

And what was happening at the top of the caterpillar pillars? Cycle after cycle of desperate/frightened caterpillars clutching their positions until eventually the upward thrust from the caterpillars nearing the top shoved them off/over the side.

Leaven #4

‘Encounter’ -- one of those everyday words in medicine.

To ‘encounter’ is to come upon another face to face, often unexpectedly. To encounter is to meet another suddenly, even violently. Each day is a series of encounters – turning a hallway corner, crossing a lane of traffic, reaching for an object, finding a place in line, looking up from a table, chasing a prize, competing for a position, . . . Encounters reveal the set of values and the sense of purpose out of which we each decide how to proceed.

The most efficient schema I have found in the history of ideas for framing what is at stake in every encounter is the ‘I-It’ and ‘I-Thou’ schema put forward by the highly respected philosopher, Martin Buber (1878-1965). Born in Vienna and raised by his grandparents, Buber studied philosophy and the history of art at the Universities of Vienna, Berlin, Leipzig, and Zurich. Buber’s classic I and Thou was published in 1923, the year he accepted the chair of Jewish History of Religion and Ethics at Frankfurt University. Buber lost that post soon after Hitler came to power in 1933. By 1938 he had been completely silenced by the Nazis and had reluctantly emigrated to Jerusalem where he accepted the position of Professor of Social Philosophy at Hebrew University. He worked tirelessly to life’s end for a peaceful solution to Israeli-Palestinian relations. Buber’s core proposition is found in two linked statements:

“I-Thou” can only be uttered with the whole of our being;
“I-It” can never be uttered with the whole of our being.

How might Buber’s core proposition be transposed into healthcare terms? I think it would be:

“I-Thou” is only defining for caregivers who are centered by a grand humanizing idea;
“I-It” is never defining for caregivers who are centered by a grand humanizing idea.

To treat someone as a ‘Thou’ is to be gentle, subjective, freeing, reciprocal, engaged, artistic, holistic, attentive, reconciling, patient, modest, trusting, graceful. In short, to be treated as a ‘Thou’ is to be respected.

To treat someone as an ‘It’ is to be scientific, objective, detached. Or to treat someone as an ‘It’ is to be rough, indifferent, curt, suspicious, selfish, alienating, dehumanizing. This distinction reaches into the ethical complexity of patient encounters and coworker encounters in a large teaching hospital.

Excellent care of patients is scientific, grounded in research results. Statistical associations and concentration on damaged/diseased body parts objectify the patient. Differential diagnoses reflect plausible cause-and-effect explanations. The patient’s immediate problem receives more attention than does the patient’s larger story. The medical team must be sufficiently detached to achieve aequanimitas or balance.

However, at some point, ‘I-It’ encounters and ‘I-Thou’ encounters become mutually exclusive in the care of patients. Only by keeping the ‘aim eye’ fixed on patients as individuals worthy of respect, compassion, and fairness can we avoid the indifference that degrades patient encounters into self-serving alienation . . . the indifference that leaves patients bruised, manipulated, exploited.

Think about it. Perhaps talk to a co-worker.

Leaven #3

It is simple enough to say, “I am for justice”. I have yet to come across someone who says, “I am for injustice”. It is much more complicated to be just. One reason -- the sacrifices and the risks. Another reason – the damaging consequences when a single definition for determining what is ‘just’ is applied.

Prior to coming to Barnes-Jewish this past January, I worked for nine years as a member of the executive leadership team for a non-profit community health center in a rural East Tennessee Appalachia service area burdened by generations of poverty. We took seriously our mission statement’s resolve to deliver comprehensive primary medical care “in a fair and gentle manner”. During one of our strategic planning sessions, I called attention to the fact that we had employed several different ways to determine what is fair. Can you see them imbedded in these decisions?

Our seven family physicians all received the same compensation (other than small additional stipends for the three physicians who did surgical obstetrics). There were no productivity incentives.

Fairness is: _________________________________________________________________

Our clinical and administrative support staff members were compensated as near to ‘market’ as possible, with the distance from ‘market’ increasing across the compensation spectrum to the physicians (whose compensation was @80% of ‘market’ for community health center physicians).

Fairness is: _________________________________________________________________

Bonuses for non-physician employees were the same amount for all, whereas bonuses for physicians were calculated using an equation that took tenure into consideration.

Fairness is: _________________________________________________________________

We were committed to delivering the same quality of care to all patients.

Fairness is: _________________________________________________________________

We gave disproportionate attention to the health care needs of our most disadvantaged patients.

Fairness is: _________________________________________________________________

As a community health center, we made decisions about the utilization of human and capital resources based on ‘public health’ funding priorities.

Fairness is: _________________________________________________________________

We exempted physicians from covering Saturday AM clinics; mid-level providers, from call.

Fairness is: __________________________________________ _______________________

Is it legitimate to use different interpretations of fairness within the same community of individuals? If so, what integrates their experience together as ‘fair’? Should fairness be identified by such results as harmony, balance, reciprocity? Are ‘treating equals equally’ and ‘treating unequals with disproportionate regard for the less powerful’ the anchors for fairness? If so, can complacency (or resignation) about inequalities be overcome? What (in)equalities by/at birth matter re fairness? Should the interests, rights, and/or liberties of a few ever be sacrificed (as distinguished from being voluntarily surrendered) for the interests, rights, and/or liberties of the many? How far beyond the delineated community of individuals should consequences be tracked in assessing the fairness of decisions? How should deliberations about a fair distribution of benefits and advantages be affected by an organization’s being ‘not-for-profit’? What does having policies/procedures to handle grievances imply?

Think about it. Perhaps talk to a co-worker.

Leaven #2

“I think troubling experiences with end-of-life care drew several of us to the ethics committee.”

This explanation – which I have heard several times during my first few weeks – brings to mind a six-week graduate seminar I was teaching years ago about the history of philosophical and religious attempts to make sense of human suffering. A few days into the seminar, one of the students received a painfully honest letter from his wife, an intensive care nurse. She insisted we not allow the raw realities of human suffering so often experienced at life’s end to fade into abstraction. I still have a copy of the letter --

. . . Work has been very difficult lately. Sometimes I could just scream! I think I would feel better if I could. People are so sick. They have no quality left to their lives at all, but yet we keep them alive – prolong their dying time. It’s awful! I’m actually taking care of rotting bodies. It is amazing what the human body can endure and end up looking like and still exist.

I was helping another nurse this evening clean her patient. This lady is 79-years-old, has terminal cancer, and has requested to have the right to die. Since her doctor felt she could possibly live another two years, he ordered everything possible to be done to keep her alive. This we did. One week later, this woman is still with us, literally rotting away on a respirator. Upon entering her room this evening, I could not believe what I saw. She was swollen so much that her skin was literally tearing everywhere we touched her – it had no more room to swell, so it started expanding by ripping open. If I did not know who she was, I would not have recognized her tonight. She knows nothing as far as we can tell, at least I pray she doesn’t.

Anyway, while Ann and I were cleaning this lady, I was actually becoming nauseated by the smell coming from her body. As she turned her to one side, I heard Ann give a yell. She let the patient drop back on the bed. Ann kept saying “oooh, oooh” as she stepped away from the bed. I didn’t know what was going on. Then I saw the patient’s side and part of her back. Ann, by turning the patient, had literally ripped this woman’s skin from her back and side. Needless to say, my nausea increased. All I wanted to do was walk out of the room, find her doctor, and beat on him awhile. But I didn’t do that. Instead, I turned the patient again and finished cleaning her. Soon after this, she died and I was actually glad! Relieved! I stayed nauseated for quite some time after that, but am feeling better now.

The other patients we have are not much better than the old lady. They are all dying. We have a 40-year-old patient who has some kind of rare brain tumor. We put her on a respirator this evening. The cancer has left her terminal, but we still put her on a respirator. Can you believe it! Instead of letting her die quickly, we are going to prolong her death. I can’t stand it. These patients request to die and we say no. They have no rights. I can’t accept this. I won’t accept this.

Don’t you ever let anyone torture me by keeping me alive when I have no quality left. I’m not concerned with quantity of life. I’m only concerned with quality. These patients have no quality, only a matter of time.

I still feel her grip, her urgency, her disgust, her challenge, her fear. The ‘ethical dimensions of patient care’ are ultimately about the integrity and the core values upon which healthcare professionals and their support staffs assist patients -– including patients in nauseating conditions -- as they strive to begin life with hope, live life with joy, and end life with a measure of self-respect.

Think about it. Perhaps talk to a co-worker.

Leaven #1

"We get no points for doing this". Several members of the BJH ethics committee have made sure I understand. Why then do individuals do more in their work than that for which they are evaluated or compensated? Why do they volunteer? What sustains them? Let me tell you a story about one of my very special friends - Sheldon Korones, MD.

The occasion was the 1978 dinner honoring Shelly with the Mid-South Hadassah Humanitarian Award. After completing his pediatrics residency in 1954 at Boston General Hospital, Shelly and his wife moved to Memphis where he joined a medical school friend in a private pediatric practice. He spent his mornings in the inner-city Charity Hospital; his afternoons in his outlying private ("carriage") practice. His morning patients (babies burdened by profound socio-economic disadvantages) were dying in infancy at more than twice the rate of his afternoon patients (babies born to privileged families). Memphians remained entrenched in discrimination and in injustices when Shelly made the decision in 1967 to leave his private practice in order to devote himself completely to his Charity Hospital patients.

Shelly announced 1 July 1968--only a few weeks after Martin Luther King, Jr., had been murdered-- his intention to create at Memphis's Charity Hospital an intensive care unit for critically ill newborns. A physician with an uneasy conscience who dared to dream. A city polarized and embarrassed. A medical school and city hospital with neither plan nor funds for newborn intensive care. Skeptical local philanthropists with whom Shelly shared his vision in vain. And yet three years later-- with the support of the local media, a persistent reporter, some diligent nurses, an encouraging Pediatrics Department chair, a strategically placed Children's Bureau official in Washington, a courageous rabbi, a few faithful friends, and an unwavering family--The Newborn Center had been established.

The dinner's emcee asked Shelly to explain what had motivated him to leave a lucrative private practice and what had sustained him as he faced barrier after barrier. Shelly's answer- "My grandfather's toes." After an effective pause, he then took the audience back to 1930 on New York City's Lower East Side.

Six-year-old Shelly is nestled in front of a Fada Radio, listening attentively to the day's episodes of Jack Amstrong. His stubble-bearded grandfather Nachman - who had fled with his family Czarist Russia in 1901 -- locks the dark green doors of his nearby blacksmith shop. Walking around the corner, he climbs a flight of steps to the landing of their modest five-room tenement home. Young Shelly eagerly meets his grandfather in front of the dining room buffet. With unequal strides, they make their way to the living room where Nachman settles into his chair. The stocky lad begins his nightly ritual. Pulling off the heavy work boots and socks, Shelly runs his fingers over each foot's single chunk of nailless flesh that had once been separate toes and pleads with his grandfather to repeat yet again the painful memories always just a thought away. Conversing in Yiddish, Shelly and his grandfather reenact an old Russian proverb that a child's education begins with his grandfather's education. "Papa, tell me again what happened to your toes."

Nachman's thoughts drift back to 1880s Czarist Russia, to the peasant village of Mogilyov. Jewish parents in the hundreds of villages like Mogilyov stopped at nothing to keep their boys from being snatched by the marauding Cossacks who enforced the Czar's harsh conscription laws. Conscription for Jewish boys meant more than military service. It meant being brutally stripped of their identity in far away military schools. They were severely beaten, forced to violate dietary traditions, and even denied food. "My son, Cossacks chased me. I hid in the forest for a long time. My toes froze off in my shoes."

What is your story? What caused you to find room for 'the ethics committee' in an already crowded schedule without compromising the quality of your assigned work? What sustains you?

Think about it. Perhaps talk to a co-worker.