Leaven #22

“Who is missing?”

An empty chair at the table often calls attention to a late arrival or a ‘no show’. An empty chair at the table can be in the way or serve as a temporary shelf or be used by others gathered nearby or simply be a blank space.

An empty chair at the table can also function as a symbol waiting to bring to the table a reality otherwise overlooked or absent.

Many years ago, I began quietly testing the symbolic meaning/force of the empty chair often found at the tables –- tables for private or family gatherings as well as tables for professional gatherings -– at which I sit in conversation with others. How? By imagining who could be sitting in the empty chair. I then try to listen and speak at the table with them in mind.

Considered this way, an empty chair at the table brings to mind the many individuals -– some living, some deceased –- who have healed and enriched my life with their encouragement, their patience, their honesty, their counsel, their trust, their example. A spouse . . . a parent . . . a sibling . . . a grandparent . . . a teacher . . . a coach . . . a friend . . . a colleague . . . a caregiver . . . .

If we were to experiment a bit with speaking together as if one of the individuals who have given us so much and whose respect we cherish were sitting in the empty chair at the table, how would our table discourse be altered?

Considered this way, an empty chair at the table also brings to mind the many individuals – some near, many more at a distance -- whose life stories I know to be far more fragile than my own, whose life stories too often unfold only on the margins of my vision/attention. The barred . . . the badly treated . . . the disfigured . . . the powerless . . . the scoffed . . . the lonely . . . the forgotten . . . the ignored . . . the disgraced . . . .

If we were to experiment a bit with speaking together as if an individual for whom life is far more difficult than our own and toward whom we so easily show disrespect were sitting with us, how would our table discourse be altered?

Is it too much to suggest we try testing this empty chair symbolism at the tables where we sit together at work – at a cafeteria table? . . . at a conference table? . . . at a medical staff lounge table? . . . at a table for rounds? . . . at a break-room table? . . . at a café/restaurant table? . . . ?


Think about it. Perhaps talk to a coworker.

Leaven #21

We take exceptional care of people.

‘Exceptional’ – unusual . . . rare . . . far beyond ordinary . . . remarkable . . . noteworthy . . . excellent.

One way to measure truly exceptional patient care is to assess caregivers’ effort to relate to their patients as ‘people’. Listen closely to the words we use to identify/classify patients. Some words convey honor and respect. Others do not. Who/what pressures us toward diminishing language about patients?

Here are some suggestions/reminders for speaking with patients in ways that may advance our mission to ‘take exceptional care of people’. We could ask --

Where do you call ‘home’? Are there individuals to whom you feel especially close? Are you a member of any groups or organizations that have significantly influenced your beliefs and values, your hopes and dreams?

Has a particular religion influenced what you believe and value? (If so) what would you want us to know about your religious experience that would help us take better care of you? (If not) what would you want us to know about the source/s of your beliefs and values that would help us take better care of you?

What gives your life meaning and purpose? What effect do your beliefs and values have on how you view being sick? (or injured?) What effect is your illness (or injury) having on your attitude toward life? Do you have any special memories -- including painful ones -- that you think we should know about as we care for you?

Do you have family members or friends who are especially supportive at this time? Do they live near enough to be present while you are in the hospital? Would you like for us to meet them?

Are you concerned that being in the hospital will interfere with your ability to participate in any routines that are especially important to your well being? How can we help you continue these routines while you are in our care?

Do you feel encouraged? discouraged? Do you have specific hopes and goals that we should know about as we care for you? Would you want us to look for any special literature or other resources that might be encouraging to you while you are in the hospital?

Do you have any questions or concerns that may be keeping you from having confidence in those of us who are caring for you in the hospital? If so, please share them with one of us. Having your trust is critical to our efforts to care for you.

Patients who feel honored and respected as people are more likely to have (or recover) sufficient balance and focus to communicate well (which requires listening carefully, thinking courageously, and speaking clearly) and to participate appropriately in decisions about their care.

Perhaps only a photographer would see a provocative image in our routinely standing in the hospital’s elevators with our backs to the hospital’s mission statement (as well as vision statement and values statement) posted on the elevator’s back wall. Do we ever work with our backs to the mission to ‘take exceptional care of people’? What are the consequences for the ethical dimensions of care if we do?

Think about it. Perhaps talk to a coworker.

Leaven #20

“I’ve never seen such a diverse group at a ‘Brown Bag’ discussion!”

Several nodded agreement as we watched an overflow audience disperse a few minutes before 1:00 PM.

What drew to Steinberg Amphitheater Washington University physicians, residents, and medical students as well as Barnes-Jewish nurses, social workers, therapists, chaplains, managers, administrators, support staff members, et al? and also a noticeable number of guests -- parents, patients, teachers, advocates, et al? I suspect the diversity had to do with our shared stake in the intersection of three realities – i.e., teenage sexuality . . . human papillomaviruses . . . a new vaccine.

Try to recall or imagine the temporary sense of ‘community’ in the amphitheater. The ethics questions stirred by the new vaccine have public health as well as personal/private dimensions.

Entering the amphitheater, we quickly pushed past being a crowd -- pressing together . . . waiting patiently . . . limiting the refreshments we picked up . . . making room . . . noticing acquaintances . . . pointing out seats . . . chatting about why we had come. The session’s first question revealed more of our common ground –

“How many of us are here because we and/or individuals very dear to us are wrestling with decisions about the new vaccine?”

The show of hands indicated the subject we had gathered to discuss blurs the line that usually separates givers of care from receivers of care. Four panelists oriented us to (1) the demographic and clinical data that should anchor our decisions, (2) the central ethical issues associated with the new vaccine, (3) a cervical cancer patient’s counsel, and (4) a mother’s angst. As they spoke, it became apparent the desperately poor – those at greatest risk in our city and in developing countries -- were underrepresented . . . and no middle school or teenage girls – those recommended/targeted for the vaccine -- were present.

Several definitions of ethics can take you into reflection/discourse about ‘the ethical dimensions of patient care’. The Brown Bag discussion seemed implicitly based on this definition of ethics -- i.e., ethics has to do with determining what ought to be done, all things considered. Not surprisingly, the participants varied in what they took into consideration re the new vaccine and in the value they assigned what they took into consideration. During our short time together, we listened . . . commented . . . (re)shaped our views --

“The vaccine’s benefits seem obvious, but do we have sufficient information to assess the risks?”

“How do I relate statistics about teenage sexuality and HPV incidence to my child?”

“Will mandating the vaccine ironically result in widespread neglect of regular screening exams?”

“Is a middle school girl nearer a teenager or a young child re ‘informed consent’ for the vaccine?”

“The ads . . . – why should I trust drug companies that aim to make huge profits on the vaccine?”

A plurality told their hesitant neighbors in the amphitheater they would vote to mandate the vaccine for middle school girls. An impressive majority indicated a willingness to have their taxes raised if doing so would make the vaccine accessible to the desperately poor.

What ought to be done re the new vaccine – all things considered – as a pediatrician? a gynecologist? a teenager? a parent/guardian? a public health official? a legislator? a pharmaceutical representative for one of the companies marketing the vaccine? a . . . ?

Think about it. Perhaps talk to a coworker.

Leaven #19

“I’m completely burned out.”

‘Completely’ got my attention. Empty . . . spent . . . no longer with outstretched hands . . . -- this social worker had nothing left to give.

She was carrying a heavy case load of cocaine-abusing women who lived in the most violent section of Miami. They had been assigned to her after they were enrolled in a project federally funded to test a proposed way to assist such women break free from their destructive behavior.

The social worker was not alone. Just minutes into our first conversation, Emmalee -- an exceptional neonatologist who was the project’s principal investigator -- made it clear she was far beneath the glitter often associated with high-achieving academic physicians. She had neither time for nor interest in soft platitudes. She knew better and intended to determine quickly if I did.

“Dr. Brown, I am losing the vision for what we are doing. I am stumbling as a leader. My staff is floundering. I am exhausted. Can you make a difference?”

In the late-1980s and early in her career, Emmalee focused on the alarming number of babies being admitted to the NICU she attended who tested positive for cocaine. When discharged, their mothers took them home to an inner-city wasteland depressed by grinding poverty, organized around an illicit drug ‘industry’, devastated by sexually transmitted disease epidemics.

Fifteen months into the project’s five-year funding cycle, two medical school collaborators had abandoned Emmalee’s leadership team. Hurricane Andrew had slammed Miami, leaving the city in utter chaos and scattering the enrolled mothers. Turf battles with other researchers had intensified. Her original staff was turning over.

Working with Emmalee and her staff over the next several years as the project’s internal evaluator as well as ethics educator shook my foundations. Going to and being present with the 120 enrolled mothers who had been toughened by surviving such oppressive/threatening circumstances forced our biases/fears into the open and carried a real element of personal danger. We regrouped frequently to review each mother’s progress, to refresh our resolve, and to refocus our efforts around six mission/purpose questions – i.e., What sort of project are we? . . . What are our roles on the team? . . . For whom do we do what we do? . . . What values guide what we do? . . . What are our (and each mother’s) objectives? . . . How do we (and the mothers) define ‘progress’/‘success’?

Did you notice the ‘re-‘ words in that paragraph? Many more are imbedded in our discourse – e.g., revise . . . replenish . . . replete . . . recharge . . . rejuvenate . . . rekindle . . . remind . . . require . . . receive . . . reset . . . reverse . . . revitalize . . . reinvigorate . . . recalibrate . . . rehabilitate . . . restore . . . remember . . . recall . . . remake . . . return . . . retool . . . reconsider . . . renew . . . request . . . repeat . . . recreate . . . report . . . remain . . . repair . . . respect . . . .

Being ‘completely burned out’ is the devastating extremity of a protracted deterioration that requires radical (i.e., to the root) interventions if a caregiver has any chance to recover.

When we say or hear “I’m completely burned out”, we should listen to the tone – lament? frustration? anger? fatigue? defeat? . . .? -- and we should listen for the ‘re-‘ words. Recovery is still possible as long as we are using ‘re-‘ words.

Think about it. Perhaps talk to a coworker.

Leaven #18

“So what are your deliverables?”

I attended a Cardinals game several weeks ago with a new friend. He works in computer programming and software development. As we exited Busch Stadium, he asked -- "So what are your deliverables?"

The question caught me off guard. My mind was still on the game. I was not familiar with the word ‘deliverables’. I first linked his question to the pitchers’ 200+ ‘deliveries’ I had just witnessed. Then a phrase cluster began to form – “We deliver” . . . “the delivery truck” . . . “a well-delivered lecture” . . . “labor and delivery” . . . “delivering bad news” . . . My new friend wanted to know what I produce, what I contribute, what I complete where I work. Some of us can answer quickly, specifically, concretely. For others of us, our ‘deliverables’ are not so easily measured. We all begin each day intending to deliver.

I have attached what I hope in time will be considered a 'deliverable'! The diagram is still a work in progress. I would appreciate your testing it when you have the time to do so. Here is the story.

The impetus for the diagram came two months ago during our ethics consultation team's monthly continuing education discussion. We are using articles about ethical decision-making that have been published in the literature specific to various specialties (e.g., Ob/Gyn, Surgery, Internal Medicine, Emergency Medicine, Neurology, Psychiatry, Nursing, Social Work). The reading for the June meeting’s discussion was an American College of Obstetricians and Gynecologists article. Several of the ethics consultation team members expressed familiarity with the article’s 'principles of medical ethics' language (i.e., 'non-maleficence', 'beneficence', ‘patient autonomy’, ‘justice’), but a lack of familiarity with the article's opening references to 'virtue ethics', 'care ethics', 'feminist ethics', 'communitarian ethics', 'casuistic ethics'. All agreed with one member's observation -- "The article does not explain or demonstrate how such approaches integrate with or relate to the four principles of medical ethics."

I only had a sketchy hand-drawn draft of this diagram by the July meeting. Since then, I have discussed a more complete draft with many individuals and groups variously positioned in the hospital -- e.g., attendings, fellows, residents, medical students, researchers, nurses, social workers, physical therapists, patient care leaders, chaplains, interpreters, patient safety specialists, medical school instructors. The responses have been very helpful and encouraging. As you consider the diagram, I suggest you --

Think of situations in which you have used varying combinations of the identified reasoning patterns to make decisions. The diagram’s short explanations for the reasoning patterns open the complexities in the personal experiences we bring to our professional responsibilities.

See the ‘stretching/reaching toward’ image in the etymology of ‘intention’. The use of 'intention' has brought to the surface what may be widespread reservation about the word 'principle' (e.g., "the word 'principle' is cold, calculating, mathematical -- like a geometry axiom", "the word 'principle' is easy to stay detached from", "the word 'principle' is abstract").

Notice the focus on ‘patient/s’. Caregivers take into account their other patients as they attend to any one patient.

Remember the ‘professional’ and ‘code/s of ethics’ commitments you have made to/before the public as well as to/before your peers. These alignments function as filters/lenses that discipline us toward alignment with the intentions patients are invited to expect/trust when we care for them.

Perhaps this diagram will sharpen our insight into how well-intended individuals can disagree about what ought to be done and reinforce our ability to find the least bruising resolutions to the resulting conflicts.

Think about it. Maybe talk to a coworker.

Leaven #17

“My tears will cool me off.”

St. Louis. August. A couple of minutes before 11:00 AM. Cloudless sky. Slight breeze. Record heat.

I see her when I round the Center for Advanced Medicine on my way to the Ettrick Building across Forest Park Parkway for an 11:00 AM meeting. She looks to be in her early 30s . . . is casually dressed . . . is a bit overweight. She is sitting awkwardly at the corner where Euclid Avenue intersects Forest Park Parkway, looking anxiously across the parkway’s daunting ten lanes (including turn lanes). I wonder if she has fallen. As I approach, the lights change and the heavy/rushing traffic on Forest Park Parkway stops. I notice her struggling to stand. Remembering that pedestrians have been hit attempting to cross the parkway, I slow down to walk at her pace a step behind and to her side.

Her stiff/irregular walking motion is all too familiar. I ask her if I can help. “Yes, thank you,” she responds and steadies herself by holding to my arm. Sweat streaming down her face and neck soaks her shirt. As we slowly cross the parkway, she explains softly while concentrating on each step -- “I have MS . . . This heat is unbearable . . . I am having an exacerbation.” By the time we reach the opposite side of Forest Park Parkway, I have learned she has made it this morning to a clinic appointment at the hospital . . . she has been sent to another location for tests . . . she lives in an apartment a few blocks away . . . she needs to reach the bus stop a few feet past Euclid Avenue before the next bus arrives.

She slumps onto the grass behind the sidewalk in front of the bus stop. I sit beside her. Tears fill her eyes as she stares at the hospital and asks for one thing – “All I want is my life back”.

I listen. Though fatigued, she continues – “I see the way people look at me. I understand their suspicious tone. I don’t want to be on disability. I want my job back. The doctors keep telling me to ‘be patient, be careful’. I wish I had never learned to walk . . . to run . . . to write . . . to play.”

I tell her about the hospital’s spiritual care staff/service. I give her the name of the person who will answer when she calls . . . and I give her my name. I have her repeat twice the information I have written down for her. I ask, “Would you like for me to get you some ice water from the Bread Company (a short distance behind us).” She responds, “No. My tears will cool me off.”

The bus approaches. She struggles again to stand. She makes it to a seat. I watch the bus pull away as I walk to my meeting.

When do we (not) notice? When do we (not) stop? When do we (not) listen? When do we (not) help?

These revealing questions bring to mind a hallway comment I overheard a clearly disturbed/confused nurse make to the nurse with whom she was walking -- “The Good Samaritan story* is eating me alive!”

Think about it. Perhaps talk to a coworker.

* Whether familiar or not with its religious source, you likely know the gist of the story that has given us ‘Good Samaritan Laws’. A traveler is robbed and left on the side of a dangerous road badly injured. Two community leaders traveling separately on the same road see the injured man but hurry past him on the opposite side of the road. Then a third traveler – who belongs to a harshly treated ethnic minority – sees the injured man. Touched deeply by his plight, this third traveler administers first aid and then delivers him to safe shelter. The admonition at the story’s end – “Do what the third traveler did”. The story’s implication – “Do not do what the first two travelers did”. Thus the nurse’s angst. She confesses to her friend that a story to which she turns for guidance does not translate easily/obviously into the complexities of work . . . of life.

Leaven #16

“Code Blue in 126! Code Blue in 126!”

We hear calls for the code team many times every day. When did we last notice long enough to be reminded that a profound drama is unfolding somewhere in the hospital? When did we last pause long enough to recall our own experiences with such crises from the perspective of the patient? . . . or the family members and friends? . . . or the nurses, therapists, physicians who have been caring for the patient? . . . or the code team members?

“Code Blue in 126!” echoed through the hallways of the 54-bed community hospital that serves the rural/poor population living in the Appalachia region where I worked for the nine years prior to coming six months ago to Barnes-Jewish. Our physicians anchored the hospital’s medical staff. Listen as the physician with whom I worked most closely during those years tells the story --

I am making rounds at the hospital one morning when the overhead speakers blare out the alarm. Remembering our practice has a patient in room 126, I rush down the hall. Several anxious nurses have already gathered around the patient when the code team arrives. The patient is lying on the floor. She is not wearing a hospital gown. The patient in distress is one of our nursing assistants.

“She simply collapsed without warning!” Her co-workers do not know of any significant medical problems or recent symptoms. She is in cardiopulmonary arrest – no pulse, no respirations. The defibrillator monitor confirms the assessment. The code team responds quickly, professionally, and according to protocol. But we are not very hopeful. We know CPR and Advanced Cardiac Life Support are rarely successful. But this time is different. Chest compressions, assisted ventilation, IV medications, two shocks . . . and her heart begins beating normally. She regains consciousness.

While giving her time to stabilize in the ICU, we arrange for her to be flown by helicopter to the referral medical center sixty miles away where her critical coronary artery stenosis is diagnosed. They treat the blockage with angioplasty. She returns home and eventually to work at our hospital. Two years later, I beam from ear-to-ear as I have my picture made with her while holding her newborn grandson whom I have just delivered.

Every time I see her, I remember why I wanted to practice medicine.

“Why medicine?”

For more than twenty-five years, I have been asking this question in conversations with medical students, nursing students, social workers, chaplains, therapists, nurses, physicians, medical educators, support staff members, administrators, et al. With very few exceptions, I have heard – usually early in the conversation -- some variation on “to make a difference”.

The “Code Blue in 126!” story illustrates a cherished but too infrequent series of patient encounters – i.e., our ‘I made a difference’ stories.

Why do we tell these stories? to whom? where? How do we view/present the patients when we tell these stories?

Think about it. Perhaps talk to a coworker.

Leaven #15

“What has happened to me?”

A young physician – whose parents were activists for human rights both in their native India and in the United States -- asked this painful question a few weeks before completing her residency training in a Tennessee program. She was responding to one of several selections I had highlighted while reviewing the personal statements she and her fellow residents had written for their residency applications four years earlier.

“I am passionate about the socio-economic issues that contribute to suffering. . . . Inspired by Albert Schweitzer and by organizations such as Doctors Without Borders, I chose to study medicine. . . . My path as a physician will lead me to work with the underserved in this country and abroad. . . . My goal is to establish sister clinics here and in the developing world and to provide longitudinal care in an integrative fashion.”

As she read those thoughtful, expectant, energetic intentions on the screen in a “What’s ahead?” discussion a colleague and I were facilitating for the program’s senior residents, she softly commented with a slight gasp, “I think I said something like that in my personal statement.” The selection did in fact come from her personal statement. Her focus, however, quickly moved inward. She began to speak – softly, honestly, tearfully – to herself . . . and to her peers.

“Now where am I? I dream of taking care of rich patients, educated patients, compliant patients, healthy patients. What has happened to me?”

What explanation does your experience suggest?

Perhaps her intentions had been altered as she searched for relief from chronic fatigue. Perhaps her intentions had been eroded by too many disheartening confrontations with the gatekeepers empowered by ‘the system’ to decide what medical services will (not) be approved/compensated. Perhaps her intentions had been effaced by the very patients for whom she had envisioned medicine could make a difference.

Her intent to promote a patient’s interests/values seemed to be in tact. Her intent to respect a patient’s informed choice seemed to be in tact. However, she had lost touch – permanently? -- with her social conscience . . . with the association she had seen for so many years between medicine and social justice.

What do you think is ahead for young physicians represented by this resident? Who/where are they five years after residency? What types of practices do they join? What do they consider a ‘good patient mix’?

Nurse or social worker or therapist or physician or . . . -- what passion, what inspiration, what goal brought you into medicine? For what do you dream now?

Think about it. Perhaps talk to a coworker.

Leaven #14

“Entertainment, shock, distance”.

As on Jeopardy -- What question is being answered?

A clue – the physician with whom I worked most closely during the nine years before coming to Barnes-Jewish recalls vividly an experience as a 1^st-year resident on an ER rotation.

I round a hallway corner in the ER and find myself standing suddenly face to face with a physically imposing patient sitting on a gurney to which his wrists and ankles are chained. His steely glare does not arrest me. It is the bullet hole between his eyes. I learned later the bullet had hit him at an angle that allowed it to track along his skull under the skin to the back of his head.

Another clue – the physician* who created my first opportunities more than 25 years ago to shift from being a history professor to being an ethics educator in the medical education/practice sphere recalled vividly an experience as a 3^rd-year medical student on a Psychiatry rotation.

Tremendously thick glasses . . . barely five feet tall . . . obese . . . protruding front teeth . . . long matted hair . . . only blue swim trunks . . . -- this ER patient is shouting aimlessly, “Thou hast not known me, but thou mayest yet know I am the Christ!” He holds up his transistor radio and claims, “I have direct access to God”. I join my fellow medical students, the residents, and the nurses in chuckling about this character who is too comical to disturb us. It all seemed funny then.

48 hours later, I see him again -- sitting in a padded cubicle . . . banging his head against the wall . . . rolling his eyes . . . clawing at his face . . . jamming his fingers down his throat. When he sees me through a small window, he charges toward the door . . . his face twists with pain . . . his eyes glare at me . . . he screams profanities . . . he tries in vain to attack me. I now realize how quickly/easily my health could slip into his illness, my ‘normal’ could slip into his ‘abnormal’. I feel weak . . . nauseous . . . overpowered.

The question being answered -- “Why do we tell ‘You would not believe what I saw/heard’ stories?” (Yes, I know there are more colorful names for this story type!)

I have asked this question many times -- in private conversations with medical students . . . in didactic sessions with residents . . . in staff meetings with nurses and other medical team members . . . during national meeting presentations for medical educators. The answers I receive are without exception variations on “entertainment” or “shock” or “distance”.

How do we tell these stories? How do we view/present the patients when we tell these stories? Where do we tell these stories? to whom?

Think about it. Perhaps talk to a coworker.

*After finishing his commitment to the Navy, Tom Elkins (1949-98) began his academic career with the University of Tennessee Memphis Ob/Gyn Department. He subsequently led the benign gynecology division of the University of Michigan Ob/Gyn Department, chaired the Ob/Gyn Department at Louisiana State University New Orleans, and anchored the gynecologic surgery service for the Johns Hopkins University Ob/Gyn Department. From his medical school days until his premature death, Tom and his family sacrificially demonstrated a special empathy for women’s health needs in Ghana and Nigeria.

Leaven #13

“I need a friend”.

This opening appeal held my attention a decade ago as I read the letter I received from a dying cancer patient I had met a few days earlier at Charity Hospital in New Orleans. I had talked with her while observing our department’s residents as they spoke with the day’s patients being cared for by our gynecologic-oncology service.

She was 27 years old. She lived in a box.

For the previous 18 months, she had lived in a prison cell. But ‘box’ was a metaphor for her life experiences. Our physicians and nurses no doubt had made comments to/about her that had, without intending to harm her, once more stuffed her into some box -- the AIDS box . . . the ovarian cancer box . . . the drug-abuser box . . . the prostitute box . . . the criminal box.

As I read her letter a second time, I remember asking myself -- Who is this ‘I’ who needs a friend? Is her appeal for a friend genuine? What is she asking me to do? Will I look for a way to respond without running any risks? Can I be genuinely present with her?

No one would have known if I had simply discarded the letter. Instead, I risked reaching to this woman. I think my decision had primarily to do with the fact that I had never -- even in my darkest moments – felt stuffed by everyone around me into some ‘box’. Here is the letter I sent to her:

I am honored that you took seriously the invitation to contact me. Your letter arrived two days ago. I have read it several times. Yes, I remember our visit. But please do not let it bother you that our conversation is a bit blurry. You had a lot to think about.

As I tried to explain to you then, one thing I do is to help our physicians -- young and old -- and our patients understand each other very well when hard choices have to be made. I listened closely as you described to the physician and nurse your feelings and your views about your health care history.

As I have thought about our conversation and your letter, I have found myself wondering -- How did she first learn about her illnesses? How did she react to being told about her illnesses? Did anyone try to give her a medical explanation that she could understand? Who first used words like ‘AIDS’ or ‘cancer’? What does she think about when she hears these words? Is it difficult for her to explain to others who ask how she is doing?

You mentioned doing “a lot of soul-searching”. I would welcome the chance to hear from you about this experience.

Please do not feel pressured to comment if my questions make you feel uncomfortable. They are part of my response to your saying, “I need a friend”. If you mean “I need someone who will try to see that there is more to me than my mistakes and illnesses” or “I need someone who will not forget me”, then maybe I can be a friend.

I did not hear from her. She died several days later. I have not forgotten her.

Think about it. Perhaps talk to a coworker.

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.