from Margaret Mohrmann
A pediatrician talks about a young boy with sickle cell disease

The story that I thought of to tell was about a patient I had in the pediatric intensive care unit. He was a six-year-old boy with sickle cell disease who was sent to us with what sure sounded like sepsis, and when he got to us, certainly was. He was in septic shock – he was really quite ill.

 

 Mohrmann Tells Her Story [4:32m]: Play Now | Play in Popup | Download

And we noticed from the beginning that his hands and feet were turning purple. We worked on him mightily, and he stayed pretty much comatose for the first three or four days that he was in the ICU. And during this time it became clearer and clearer that no matter what we were doing that he was going to lose his hands and feet; they were becoming increasingly black as purpura fulmanans was fulminating. And so we brought in all sorts of consultants who would stand over his bed and talk about what the best thing to do for this was, first of all trying to prevent him from losing them, and secondly when it was clear that he was going to, how to manage that part of the issue.

Then one morning, his mother was sitting by his bedside, and he awoke from his coma and was sort of, maybe a little bit like you see on soap operas when somebody has been in a coma and flutters their eyes, and then their eyes pop open. But he didn’t do any of that. His eyes popped open, he looked at his mother, and he said “Ma, they’re gonna cut off my hands”.

And actually I was there, and the resident was standing there with me, and we both looked at each other in horror because we had been talking so freely over his bedside without any sort of recognition that he would, he would know this. But the wonderful thing about this story is not only that I’ve learned to be very circumspect around comatose children, and so did the resident, I’m sure, but the way his mother handled it. Her ability to respond to him in such a positive way. She said, “Well, you’ve been really sick and your hands and feet suffered probably more than anything else, and they may have to do that, but they’ll give you new ones.” And he said, “Oh, okay.” The resident and I left the bedside with tears in our eyes.

This is a really special boy – he did end up losing his hands and feet – we saved his life though and saved his brain. He was still a normal kid, he just didn’t have hands and feet. He came back into the hospital the next time on the orthopedic service to have the initial procedures done to prepare him for prostheses. He was a brilliant six year old, excited about being there, couldn’t wait to get his new feet; he was going to have something done on one of his arms to split the radius and ulna and make it in like a pincer thing – and then going to have an artificial hand on the other side.

And this little boy had always wanted a keyboard, he wanted to play music, so his parents had gotten him a keyboard. He’s sitting up in the bed, this six year old, with a keyboard in his lap and these stumps of arms, playing music he had composed. And saying how good he felt, how excited he was about starting school that September. And the resident who had been with me when he woke up came back to see him, too, and we just marveled at the resilience of a six-year old who was just going get on with being a kid who didn’t have hands and feet. He was a remarkable child, and he taught us all not only about being careful what you say around comatose people, but he also taught us a whole lot about resilience.

 An attending talks about caring for a difficult patient

Mrs. M is 56 year old “problem patient.”  She is on chronic anxiolytics for anxiety and panic attacks, and she always calls early needing more than prescribed, either saying she has had more stress, or they were stolen, or fell in the toilet, etc.  Despite always needing more clonazepam, she rarely keeps her regular appointments with the resident who is her PCP.  About a month ago she paged him, saying she was having difficulty swallowing, especially solid food.  He tried to get her to come in for an appointment, but she resisted.  He agreed to order a barium swallow and then to see her, but the initial appointment for the test was scheduled in almost a month.  When she called back in a week saying she was having more difficulty swallowing, the resident called radiology and was able to move the test up. 

On the day of the test, the resident was called by the radiologist who said the patient had a 7 cm mass constricting her esophagus suggestive of esophageal cancer.  They recommended a CT scan.  The resident called the patient to say she needed another test, and several days later the CT confirmed a mass in the esophagus, but no obvious local invasion or adenopathy.  An EGD was then quickly obtained, and biopsy of the mass did show she had an squamous cell carcinoma.  Through all of this, the patient still hadn’t been seen at UMA, but she was calling the resident and his firm nurse at least daily.  After the procedure, he had no clinic time to go over the diagnosis with the patient, so she was scheduled to see me instead.  On the morning of her appointment, she called once again to cancel, saying she had no transportation, but she wanted to know the results of the biopsy.

The resident, the firm nurse and I discussed this, and decided it would be best for the resident to call her and give her the results over the phone.  She had already had breast cancer successfully treated with surgery so she knew something about what to expect.  When he called her, he said she took the news well, and indicated she had support at home and wasn’t feeling depressed.  She said she would keep an appointment with me in two days to discuss her diagnosis in more detail.  In the interim, her firm nurse called the surgeon’s office to find out what other tests he would want, and arranged an appointment in 6 days.  Before that, she scheduled both the PET scan and endoscopic ultrasound he wanted. 

When I saw her two days later, she was quite calm.  She said her family was taking it very hard, and she needed to be strong for them.  She was very thankful that she could get the other tests she needed and see the surgeon within a few days.  She was still having trouble eating solids, but was eating pudding and five or six cans of Ensure a day.  She didn’t need more anxiety medicine or anything for pain. 

She had her tests and saw the surgeon, who recommended chemotherapy and radiation followed by surgery as her cancer appeared localized.  Before the diagnosis, she called one of her providers at least daily.  After the diagnosis, no one heard from her.  When we realized she wasn’t calling, the firm nurse called her.  She e-mailed us the outcome. The patient said she was ok.  Her family had bought her a new dress and her sister had taken her to get her fingernails and toenails done.  The nurse told her not to milk this for too much.  They both had a good laugh.

This episode struck me because of the way that the resident, the firm nurse and I were able to work together in a tough situation, with a patient with a potentially fatal condition who wasn’t making it easy for us.  The resident took the lead when he could, I was able to help out, and the firm nurse made sure everything got done and held it all together.  The patient wound up getting a barium swallow, CT scan, EGD, EUS a PET scan and saw a surgeon in two weeks, all as an outpatient.  That’s quite remarkable in our system, and is the way things are supposed to work, but it wouldn’t have happened without us working as a team, and especially without the firm nurse knowing how to get things done.  The resident did a good job of directing things and being willing to give the diagnosis under less than ideal circumstances, and he was also willing to appropriately let others help him.  My role was mostly as a facilitator, supporting the resident and the firm nurse and filling in when I needed to.  The biggest surprise for all of us was the patient, who has demonstrated amazing resilience and courage.  She still has a very difficult and uncertain future ahead, but I feel much better about our ability to provide her excellent care, and her ability to participate positively in her own care, than I did a month ago.

 A medicine attending writes about a patient from Cincinnati & a resident from urology

I don’t ward attend as much as I’d like (hard to leave my clinic unattended), but over the Christmas holiday clinic slows down enough and the ward attending schedule is desperate enough, that I often cover a general medicine service. 

Last year we had a patient transferred from West Virginia in respiratory failure.  He was from Cincinnati and did not know a soul in Charlottesville.  After a few days in the MICU he came to us on antibiotics for community acquired pneumonia, on anticoagulants for a new pulmonary embolism, on high flow oxygen, and with a right renal mass that looked bad.  Mostly he complained he was hungry.  We decided he needed a vena cava filter, a chest tube for a large para-pneumonic effusion, and a nephrectomy.  He got the filter, refused the chest tube, refused surgery because it couldn’t be scheduled for weeks, and by the way, he lived in Cincinnati. 

We decided to drain his chest ourselves.  In my time, in the days of the giants, medical residents did the thoracentesis at the bedside, using percussion and auscultation to localize the fluid.  Fluid is dull to percussion, but so is the liver, so is the spleen, and so we tried to give the hemi-diaphragm plenty of space.  And there we were, a 14 gauge catheter in the patient’s chest, and 100 cc’s at a time we proceeded to remove two liters of sero-sanguinous fluid.  I was in no rush.  The patient was not going anywhere. The resident was a captive audience.  He and I took turns at the syringe, and the three of us had time to talk.  I was curious why the patient was in West Virginia. 

Turns out a woman was involved.  Turns out alcohol was involved.  Turns out poor judgment was involved.  We are all human, and there are many ways to end up with a large pleural effusion.  Discharge planning should begin the day of admission.  The patient’s plan was to drive to Cincinnati and get himself admitted for nephrectomy through an ER.  We reviewed his plan.  I reminded the patient that his car was in Cincinnati, that he shouldn’t be driving, that he might need some oxygen for the trip, and that his wife, given the circumstance of his absence, was not inclined to either take him home or drive him home.  Maybe his sister would fetch him.  By that point we had surpassed our pleural fluid goal.  The patient tolerated the procedure well, but complained he was hungry.

The urology resident spoke to her attending, and the attending had a colleague in Cincinnati.  Suddenly we had a plan.  The next day the patient’s room air O2 sats were above 90%.  I encouraged him to get out of bed and start exploring the grounds of his new home, UVA Hospital.  I gave him some money to go the gift shop to buy a candy bar.  On rounds the next morning he had six dollar’s worth of candy on his bedside table-my dollar plus the resident’s five.  His sister was there too, looking like a big sister.

The patient returned to Cincinnati.  I returned to clinic.  The resident went into his subspecialty.  This Christmas I am on the wards again.

A pediatrician writes about a remarkable resident and family-centered care

The KCRC prides itself on providing family-centered care from the housekeepers to the pediatric attendings. Families participate in all the interdisciplinary team meetings and share in making clinical decisions. Families serve on the KCRC Advisory Board and search committees. And the KCRC values each patient and his or her ability to make functional and developmental progress at their own rate. Insurance payment for inpatient head injury rehabilitation is based completely on the established metrics of cognitive and physical recovery from trauma or disease. The KCRC staff champion all the children, infant to adolescent, especially the most disabled. Well, usually, that is….

This six-month old baby, a former 28-week premie, was making no progress and had made no changes since she had been transferred from the NICU three months earlier. Not even a reflexive suck or doll’s eye opening. No change in her vital signs. Not even diurnal variation in her body temperature which remained rock solid at 94 degrees even with swaddling. No response to cuddling in the rocking chair or lullabies from the nurses. One of the parents called the nurses’ station regularly every afternoon to inquire about her progress, but they had long stopped visiting. There were no wrist rattles or pretty pink onesies hanging on her crib.

The family wasn’t ready to take her home with their other three healthy children and they weren’t agreeable to her transfer to a nursing home. The doctors, the nurses, the social workers, the finance officers, the Clinical Ethics Team, their family doc and the local public health nurse had all tried unsuccessfully to reason with the family. The lullabies gradually stopped, the pediatric team skipped that crib on morning rounds and the chart notes became more about the responsibilities of the institution than the rights of the patient. A Medicaid nursing home bed was identified in Richmond and transportation for a safe transfer was arranged with one of the KCRC nurses in company. A final summit with the family was planned on a Saturday morning……who on the team had the best rapport or the most power? Who would sit in the family lounge over coffee and deliver the absolutely final eviction notice? There were no volunteers.

I was the inpatient attending outlining the tasks for the weekend, including the parent conference scheduled on Saturday morning. I had assumed that I would end up doing the dreaded duty. But no, my intern, Dr. H., suggested that she thought she would like to try…she had answered the phone yesterday at the nurses’ station when the mother called in and she had given the 24-hour update to the mother. It felt like a connection to Dr. H. I acquiesced but felt a little guilty in doing so, And so it was that I dawdled in the house staff office, waiting to be called for the inevitable rescue of my first-year resident. And here she was at my elbow…

“We need a priest….right now,” she said to me.

“What for….? I can probably get the hospital chaplain on call to come in,” I replied, more than a little nonplused by the urgency of the conversation and the unexpected call for clergy on a Saturday morning.

“No, no!” she insisted. “We need an honest-to-God Catholic priest…right now, before they change their minds.”

“Okay, okay, but what’s happening about the transfer? Shall I call the ambulance service?” I pressed. “What’s going on in there? Shall I come in with you?”

She shook her head and rushed to say: “No, no.” Her words erupted: “I introduced myself and sat down. And right away …when I asked about the baby’s first name… you know how you’re always supposed to call the baby by her name when you deliver bad news? I think you taught me that even… the mother started sobbing and I got her a Kleenex, you know, I had the box right next to me just like I was supposed to….well, I put my arm around the mother’s shoulders and patted away and she just kept sobbing…then the father explained that their baby didn’t have a name, probably not even a soul …because she had been too sick in the NICU to be baptized, and then the chaplain was a Unitarian and now she would end up in limbo if she went out in the winter air to get to the ambulance… and then out on the highway to Richmond there might be an accident ….she’s so little and the traffic is so fast on route 64.” She took a quick breath and kept going. ” SO, I need a Catholic priest right now… and the baby’s name will be Mary Beth, and then the baptized baby Mary Beth can go live at the nursing home in Richmond… then, if anything happens to her, she will go straight, absolutely straight without questions asked, to heaven… and then, the parents can go back to church again, to Saturday night confession again and take communion at Sunday mass with all their neighbors…. It’s okay, honest, we just need a Catholic priest right now.”

And so I called St. Thomas right around the corner from the KCRC. We had a priest in no time. No one seemed too concerned that his Saturday morning attire featured sandals, jeans and a clerical collar under a sweat shirt. Dr. H. and the nurse stood in as godmothers. The baby was duly baptized “Mary Beth in the name of the Father and the Son and the Holy Ghost. ”

The Pediatric faculty and residents at Monday’s morning report were stunned when Dr. H. reported the successful transfer of Mary Beth, the hugs from these most difficult parents and the general disbelief of the KCRC staff. Dr. H. was recognized at the formal Rotunda dinner the following June as the most family-centered resident in Pediatrics. And the staff and faculty at the KCRC reflected once again that family-centered care is redefined by each family and not by the staff.. Isn’t it grand to have all those idealistic students and residents around to teach when we wise ones lose our way?

An attending talks about empathizing with a resident and her patient

One of our residents was presenting a patient to me in clinic, and she was clearly distraught or disgusted or upset. Her patient had come from far away, was on a long list of medications, was on disability, and had a lot of complaints which had been worked up with no results. The resident felt overwhelmed by this patient, that she wouldn’t be able to meet the patient’s needs, that there were no concrete answers in any of the records that we had, and that it was kind of a fool’s errand and she wasn’t going to accomplish anything.

She was frustrated and downhearted, and so I listened to her story and empathized with her some. I said, “These are very difficult patients when it seems like we can’t meet their needs, or there is no real good explanation for their symptoms. You don’t know what to do, and sometimes there is a lot of suffering in these patients and sometimes these patients have been abused.” And I talked about the case, “Did you ask about abuse? When I go in there I’ll ask the patient about abuse.” And so we went in, and we spoke to the patient and listened to some of the complaints. I asked the woman whether there had ever been any abuse, and she said, “Yes, my mother died, my single mother died when I was very young. As a ten-year old or eleven- year old, I was really with my aunt and uncle. And my aunt would chase me around with a fire poker and try to hit me, and my uncle was trying to sexually abuse me.”

We didn’t do a lot of counseling on that. We just talked about how terrible and how damaging that must have been, and we talked a little bit more to the patient. We just made some very sympathetic, not trying to cure or correct, statements. The patient seemed genuinely pleased that these doctors cared about her and wanted to hear about her and know about her.

I talked about it with the resident afterwards. I think the point I made to her was just that by knowing the patient’s history, it’s not like we solved her problem, but it gives us empathy with that patient. The reason why some patients are difficult or have pain that doesn’t have a biomedical explanation is related to what has happened to them. Knowing their stories gives us the ability to sympathize and empathize and treat them kindly which, I think, is a lot of why they are here.

One of the things over the years that I have been interested in is doctor-patient relationships. But I’ve come from sort of being a zealot – “You have to do this with the patients” – to realizing that the residents are every bit in need of empathy and sympathy as the patients are. I think that what helped this to be a teaching experience was that I wasn’t judgmental of the resident; instead, I sympathized with her in how difficult it is to be in that situation. Also maybe that helped her to have some empathy for the patient which would, I would like to say, result in good care.

A nursing school faculty member talks about a graduate seminar

One experience that stands out is when I co-taught a graduate psych seminar with a psychologist. We started teaching this small group in 1996, neither one of us really knew each other, so we had to have a lot of trust in order to figure out how to co-teach as well as how to work well together for the students. It just became a real positive time in my week, and I think she has said the same thing, that we both really looked forward to Thursdays because it was a day when we were not only teaching the students but we were also trying to model to the students what it was like to be in a collaborative relationship.

We would start each class with a co-round. It was a 3-hour class with about six or seven students, and we would spend the first hour going around the room and doing a check-in period. She and I both participated, but we were able to model how much to disclose, boundary issues, a relevant thing to bring to the group in terms of peer supervision.

I come at this from a nursing perspective with a psych/mental health specialty. What was also neat about the experience is that although we came from different disciplines, we really showed a lot of respect for each other’s discipline so that when a student would bring up something that had more to do with nursing care, she would answer. But then she would say, “Well, Sarah has an idea about that.” And if it had something to do with brain anatomy or physiology, I would say what I thought, and then I would say, “But I know that she has a different take on that, and she might be able to talk a little more about the limbic system and how it affects behavior.”

We didn’t think about this, it just naturally occurred that we were modeling collaborative teamwork in this group. And we got to know the students really well because of the processes that we used, and we also got to know each other really well.

The other part about this that was special was the environment. Because I had just been selected to live in one of the Pavilions up on the lawn, and we said, “Hey, we have enough chairs, we have sofas…” So we met there, and we’d have my golden retriever on the floor wagging his tail, wanting to be loved. And we had really ratty old sofas – they were like something you would find at the Salvation Army – and people would come in and you had to be comfortable because there were these thick sofas with pillows and blankets.

It was in a beautiful setting, and people looked forward to coming just because they got to walk through the garden to get to class. Sometimes at the health system I’m a little isolated from the academical village and once a week, it brought me to thinking, “This is really the ideal, to be teaching a seminar in a room that’s like a coffee shop.” And I think that changed the whole dynamic because we could have had the same people sitting in this sterile, bright room, and I don’t think we would have gotten the same outcome. People felt comfortable talking about difficult psychiatric cases. We needed a private environment; we didn’t necessarily need all this academic stuff. We needed more something that would simulate a psychotherapist’s office.

When I had to start teaching this seminar by myself, I grieved for that a little bit, and I thought, “Oh, I’m missing something.” And I also wasn’t teaching in the Pavilion anymore. Well, what I did was, the next semester I had seven students, and I taught it in a small room, and I brought in lighting that was low lighting; we were able to turn off the fluorescent lights and have low lighting.

I did some other creative things, like we’d start out each session with either a guided imagery, or some kind of relaxation or deep breathing for the entire class. It sounds a little touchy-feely, I know. But at the same time, when we looked at the Standards of Care for the psych mental practice, relaxation was in there 27 times in a 14-page document. And so I thought, “What better way to teach that than to say,

A firm director writes about the growth of a resident

One of my greatest graduate medical education pleasures is watching new M.D.s evolve into physicians. Few faculty members enjoy the same broad vantage point that firm directors hold. The 3 year window during which we supervise, precept, and mentor residents with their continuity patients allows us to see them uniquely. We see them as they tentatively struggle to find the correct forms on the first day in ambulatory clinic, and later as they gain a confidence among their colleagues marking a successful transition to second year. We see them as they sort themselves into generalists and all variety of sub-specialists. We see them finally as they complete their residencies and commence the job of directing their own education. When I first set out to write about a success in graduate medical education, I was thinking of something I witnessed in a specific resident….. Retrospectively, witnessing her transition may be much more generalizable.

My resident arrived from a prestigious medical school full of optimism that science and study and diligence were master for any problem that an ambulatory clinic patient could present her. She dressed sharply, had a shiny stethoscope, and quick answers in her assessment and plan….. but was surprised by the subtleties as they unfolded in the first patient we shared. She clung to a naive optimism. A little more study and diligence would prevail. When a non-English speaking patient had difficulty in registration, she took him there herself and translated. When he had trouble getting a prescription, she picked it up at the pharmacy and shipped it to him.

Several months into internship she received a page from one of her newly assigned clinic patients. The woman was in pain. The pain was unbearable. She had no medication. No clinic appointments were available during the harried resident’s ICU rotation. Other doctors were not helping. The husband was outraged. The young resident prescribed medication over the phone in escalating doses while scrambling to find a way for the patient to be seen by anyone to initiate a comprehensive pain management strategy. With the patient’s calls spinning out of control, and frustrated by a system that seemed to make it impossible for her to meet the desperate patient’s needs, the resident paged me for help. I suggested that she gather a little background and, indeed, the patient was using multiple physicians and pharmacies. The betrayed resident lashed back at her manipulator. This was a bad patient. All symptoms were contrived. All problems were obstructionist. Any maneuvering by the patient was threatening. She lapsed into a self righteous and na