|Photo by John Carroll--Delmas, Port-au-Prince (April 13, 2014)|
Thursday, March 20, 2014
I have a bad feeling about Princess. I don’t think she will get heart surgery and I don’t think she will make it. And I really hope I am wrong.
With Princess we don’t have a medical diagnostic dilemma. We have a delivery dilemma.
The technology that exists to diagnose Princess is magical. Not too many years ago who would have thought bouncing sound waves off a 7.5 pound baby's heart could be done in Port-au-Prince, one of the most dilapidated cities on the face of the earth? And who would have thought that these sound wave images could be converted into a video that showed Princess’s tiny beating heart full of dark holes begging for repair.
And just as amazing who would have thought that this video could be "downloaded" to a little laptop computer and then "uploaded" with a wireless signal for the rest of the world to see? This just doesn’t seem possible.
With this technology cardiologists in four countries have now seen Princess’s echocardiogram and all agree she has a congenital heart defect called complete AV canal. And they all agree she needs surgery.
In the old days doctors were good with their ears diagnosing congenital heart disease. And a few could have accurately diagnosed babies like Princess without a sound wave test. But heart surgeons back then could not have stopped the baby's heart and repaired the heart because there was no good way to circulate blood. And at the baby's autopsy the surgeon would smoke his cigarette, shake his head, and stare at the hole in the heart that killed the baby. But today we have incredible bypass technology. A skilled surgeon and bypass team now connect the baby to bypass, stop the heart, fix the heart, restart the heart, and remove the baby from bypass.
All of this diagnostic and curative technology is available and being used everyday. We all know what is wrong with Princess and we know how to make her better.
But for Princess it might as well be 1950. We have diagnosed her but we have not agreed to do anything for her. The real challenge for Princess now will not be finding new technology or disseminating information about her. The challenge is to repair OUR hearts and deliver Princess the care she deserves.
John A. Carroll, MD
Sunday, March 16, 2014
Tuesday, March 04, 2014
Thursday, February 27, 2014
|Princess Buggie and Grandma--February 26, 2014|
(Photo by John Carroll)
I have done a History and Physical and have an up to date echocardiogram. (Princess has an AV Canal.)
John A. Carroll, MD
Tuesday, February 04, 2014
Rotchina, January 2014 (Photo by John Carroll)
In August 2000 I brought a nine month old baby girl named Rotchina to OSF-Children's Hosptial of Illinois (CHOI) in Peoria. Rotchina suffered from severe pulmonary valve stenosis. This means that she was born with a very small pulmonary valve which was restricting blood flow to her lungs.
An echocardiogram performed at OSF-CHOI in 2000 revealed a huge pressure gradient (174 mm hg) across a tiny pulmonic valve. (A normal pulmonary valve would have no gradient.) This meant that their was a huge block at the pulmonary valve as blood was rushing from her right ventricle through the tiny pulmonic valve on its way to her lungs. And her right ventricle was too big because it had been doing so much work to pump the blood through the small pulmonary valve.
In the Catheterization Lab at OSF the pediatric cardiologist and his excellent team at CHOI inserted a catheter into a major blood vessel in Rotchina's thigh and threaded the catheter up to her tight pulmonic valve. When it was determined the catheter was in the correct position, the cardiologist inflated a balloon at the end of the catheter and popped open her abnormal pulmonary valve. The valve area increased immediately which allowed much more blood to flow to her lungs with each heart beat.
The procedure was successful and Rotchina was released from the hospital the same day and went back to her host family in the Peoria area.
Rotchina stayed with this wonderful family until she was medically cleared and then we took her back to Port-au-Prince to be reunited with her mother.
Rotchina is now 14 years old. She and her mother survived the Haitian earthquake in 2010 which destroyed most of Port-au-Prince.
Recently I have been hearing that Rotchina has not been doing well. I called the CHOI cardiologist who opened her valve when she was a baby and described Rotchina’s situation now. He offered some thoughts but he sounded shaken to hear her name again. He wished me luck in finding care for Rotchina.
So I had another OSF cardiologist review a recent echocardiogram that Rotchina had in Haiti. The cardiologist noted that Rotchina now has severe pulmonary valve regurgitation which means that her pulmonic valve, which was tight when she was a baby, is now very leaky. And this cardiologist stated that she may need to have heart surgery to have a new pulmonary valve placed.
But how would I get this done at OSF which is where it should be done? For a decade OSF has denied all of my Haitian Hearts patients from ever returning to OSF. (The surgery that Rotchina may need is not done in Haiti.)
So over a month ago I asked another friend of mine and a long time friend of Keith Steffen, OSF-Saint Francis Medical Center's CEO, to call Keith and ask him to accept Rotchina back to OSF for a complete cardiac work up and surgery if needed.
I will spare you the morbid details but after weeks of faithful efforts by my friend with Keith Steffen and Margaret Gustafson, Executive Director of CHOI, OSF did not remove their embargo against Rotchina. It was a painful lesson for my friend and he saw up close and personal how OSF works for Haitians kids.
The other day in Haiti I examined both Daniel and Rotchina. She is now a tall 14 year old adolescent who is very pleasant and polite and she and her mother appeared fine. Her mother was carrying the original medical records from OSF-CHOI like they were treasured documents.
Rotchina’s mother states that Rotchina is a good student but does miss school due to health reasons. Her mother also reported that Rotchina is short of breath, has heart palpitations and chest pain. ( I hear these complaints almost everyday in Haiti. Sometimes they mean something significant and sometimes they don’t.)
Rotchina's physical exam revealed normal vital signs but she did have a loud murmur over her pulmonic area that sounded like her pulmonary valve is indeed leaky as the OSF cardiologist mentioned when we reviewed Rotchina’s echocardiogram in Peoria.
But as mentioned above, Rotchina is quite tall and I noticed she has long arms and skinny fingers. And she wears glasses. I asked myself if she has Marfan’s Syndrome.
Marfan’s is an inherited connective tissue disorder with many forms. Marfan’s can cause problems in multiple systems. Hearts can have leaky valves, arms can be long as can fingers, and there is high incidence of visual problems associated with Marfan’s.
Thus, Rotchina needs a work up, not only for her pulmonary valve to see if it needs to be replaced, but to determine if she has Marfan’s as well. If she becomes pregnant in the next few years and she DOES have Marfan’s, she could die in pregnancy. (Women with Marfan's can be high risk for rupturing their aorta during pregnancy and need to be monitored carefully.) But what do I tell Rotchina and her mother when she has NOT had a proper medical workup?
So Rotchina, like Daniel, is stuck in Haiti with nowhere to go. She needs to come to OSF so the physicians can work her up and treat as appropriate. The OSF Sisters first first mission value statement reads: "Personal worth and dignity of every person we serve regardless of race, color, religion and ability to pay." So I think this should cover Rotchina too.
"We are not likely to recognize the ravages of inequity because of our isolation from one another, but they are there." (Charles Blow, New York Times)
John A. Carroll, MD
Tuesday, January 28, 2014
(Daniel--January 2014, Photo by John Carroll)
Dangerous Corporate Medicine in Peoria
I am going to make a case that Peoria's OSF-Saint Francis Medical Center’s CEO Keith Steffen should be terminated from his position at OSF. In my opinion Keith should be removed by whoever in the huge OSF System has this responsibility. If it is the Sisters or one of the OSF Boards then they need to ‘throw him under the bus” on Glen Oak Avenue and be done with it. But I will also explain why this probably won’t happen. And at the end of this post I will have some personal requests and advice for Keith.
Peoria’s OSF-Saint Francis Medical Center has over six hundred beds. It is the fourth largest hospital in Illinois. The new Emergency Department and the new Children’s Hospital of Illinois were completed several years ago costing close to one-half billion dollars. It was Peoria’s largest building project ever. OSF has a medical staff of more than 800 physicians and is the second largest employer in Peoria. For the cost report period ending September 2011, OSF-Saint Francis Medical Center recorded $2.4 billion in gross charges and a net income of $52 million, according to American Hospital Directory.
This post is not a personal attack against Keith Steffen. I am simply stating why I do not think Keith should be in charge at OSF. And after you have read this entire post, starting with an unfortunate young man named Daniel, determine if you think people’s lives anywhere should be in Keith Steffen’s hands. Ask yourself if you think Keith is following the founding Sisters philosophy of respect for life.
Daniel is a 33 year old Haitian man who I brought to OSF in 2000 when he was nineteen years old. He was part of the Haitian Hearts Program. Daniel had suffered from rheumatic fever which destroyed his mitral valve and put him in congestive heart failure as a teenager in Haiti. After careful pre operative work up, Dr. Dale Geiss and his skilled cardiac team surgically replaced Daniel's diseased mitral valve with a tissue valve. Daniel recovered very well after surgery and even mowed his host family's yard in the Peoria area. And after he was medically cleared, Daniel returned to his family in Haiti. (Dr. Geiss performed all his medical care for Haitians free of charge. And Haitian Hearts donated over 1.1 million dollars to Children’s Hospital of Illinois for OSF's care of Haitian Hearts patients.)
A couple of days ago I visited Daniel in the slum where he lives in Port-au-Prince. The slum is named Drouillard and is filled with tens of thousands of other unfortunate souls. For the past five years Daniel has lived here with his five brothers and sisters. They share a tiny dark room on the second floor and look down on the confusing cement maze of corridors below. They have no running water and no electricity. And they have only one bed and Daniel gets it. The five others sleep on mats on the floor.
Daniel’s only sibling who has a job is a 36 year old sister who teaches at a nearby primary school. Her salary is meager at 80 US dollars per month and she supports all of the others with this income. The unemployment rate in Haiti is estimated to be 80 percent so Daniel and his siblings are not unusual.
During the last few months Daniel has become sick and can barely walk due to shortness of breath. He now props his head up on several cushions in order to sleep at night. He spends much of the day in bed in their room in Drouillard.
When I examined Daniel the other day another Haitian friend had to shine his cellphone flashlight on Daniel so I could see his eyes. He has a wise appearing face and his voice seemed strong. Daniel is the typical courageous Haitian warrior who continues to fight against incredible odds. However Daniel is very thin (one hundred pounds?) due to the catabolic stress that eats at him while his heart fails him. And while listening over his mitral valve I heard a raspy murmur indicating that it is dysfunctional and it is the culprit making Daniel very sick.
After my exam I asked Daniel if he had the strength to go downtown that day to have a formal echocardiogram. He said he would try and loaded his cachectic frame onto a filthy tap-tap amidst the dust and debris of Port-au-Prince.
The eighty dollar echocardiogram clearly showed that Daniel’s mitral valve area is scarred and tiny and allowing just a trickle of blood to enter his left ventricle. His ventricle is working well…it just doesn’t have enough blood to pump to the rest of his body. And because the blood cannot be pumped forward efficiently it backs up into his lungs making it very hard for Daniel to breathe.
Over the past 14 years this tissue valve that was implanted at OSF has saved his life. But now this same valve is killing him.
The fact that the valve has scarred down is not uncommon . What is uncommon is that Daniel is being denied repeat surgery. Daniel needs to have his bioprosthetic tissue valve replaced with a plastic and metal valve that will last indefinitely. It is OSF’s responsibility to accept Daniel back to allow a willing Dr. Geiss to perform this surgery.
For the past decade Keith and OSF have refused all of my Haitian Hearts patients that were operated at OSF from ever returning to OSF. Three of my Haitian patients in their early 20’s have now died because they did not have repeat heart surgery. However we have had the good fortune of having some of our Haitian Hearts patients operated elsewhere during the last ten years and their lives were saved. However, other medical centers and contacts that could operate Daniel now believe that Daniel is OSF’s responsibility and have already rejected him.
So what do I tell Daniel? That the OSF Sisters don’t turn any one away except Haitian Hearts patients including him? That OSF does not care if he lives or dies? What should I say to him?
And how will Daniel die? He will die slowly over a few months. His activity will continue to decrease. He will become more short of breath and begin to cough up blood. Daniel won’t have the strength to eat and he will become moribund. He will suffer from air hunger and won’t be offered any morphine to take the edge off because he won’t be in any hospital in Haiti. (And most hospitals for poor people in Haiti have no morphine in the first place.) Some day his eyes will roll back and he will suffocate and die in front of his horrified brothers and sisters. And when it is done, his brothers will carry his body to a local morgue. And when they scrounge up enough money from their slum neighbors, his brothers and sisters will have pauper’s funeral for Daniel and bury him in the Drouillard Cemetery across the dusty street from their slum.
This scenario of course does NOT need to be the way it plays out for Daniel. OSF and Keith could change the outcome if they wanted. Daniel’s life could definitely be saved if they act now.
But this does not seem to be happening. During the last few weeks I have had a friend of mine and a friend of Daniel’s talk to Keith about removing OSF's embargo against Daniel so as to allow Daniel to come back to OSF to be operated. Keith has not removed the OSF embargo against Daniel. I have been told to pursue other avenues for Daniel. But I have "pursued other anvenues" and they are leading nowhere for Daniel. He is not being accepted elsewhere. Sadly, Daniel is working on renewing his passport and calls me everyday here in Port-au-Prince. And when I see the call is from Daniel, I feel like vomiting.
How could the CEO of Peoria’s enormous Catholic medical center that says they turn no one away continue do this? I am still in total disbelief of this negligence even after seeing this happen for ten years. Sister Judith Ann, Chairperson of OSF Healthcare, typed me a letter last year and said that she puts her trust in the administrative team at OSF? Really?
So, dear reader, are you still with me?
This unfortunate scene that I described is typical of Corporate Medicine in Peoria and around the United States. Corporate Medicine is a new specialty but it is not primarily focused on the well being of the patient. It is focused on profit. In Peoria, Keith Steffen puts an interesting and unusual twist into the story with his weird antics and statements over the years, but other hospitals have bad administrators too. Non-caring administrators are ubiquitous. Corporate Medicine is one of the main reasons costs of health care have risen so much. We have too many administrators and too many of them are corrupt. They devalue the lives of people like Daniel. Our lives really mean nothing to them. People like Keith are divorced from direct involvement with patient care and don’t see the human side of medical care. Keith doesn't know Daniel and doesn't want to get to know him. Especially in Daniel’s slum.
What about the doctors who work for OSF? Can they be of some help? Probably not. Their paychecks are signed by OSF and they are always looking over their shoulder. They can be intimidated by administrators that visit their OSF offices. Keith told me that “fear amongst employees is a good thing”. Does that sound healthy to you?
And if Pope Francis walked into Keith’s office at OSF, do you think he would be pleased with OSF or Keith Steffen? The Pope would see Keith’s Bible on the nice table top but what would be missing would be the smell of sheep. Keith does not smell like a sheep because he is not working with the "common folk" enough. His feet are not dirty enough. He is not really doing what the Pope wants all of us to do.
Will anyone do anything about this? Probably not. The OSF Sisters bowed out years ago. The Peoria business and religious community will stick together and continue to give each other awards. And our priests will continue to give passionless and boring homilies at Mass to the anesthetized souls in front of them.
Keith and OSF are in a very bad spot here. It would be the right thing for OSF to get rid of Keith and reverse their discriminatory embargo against my Haitian patients. OSF needs to accept Daniel back. He is their patient. But if they did this they would be indirectly admitting that they made a big mistake by neglecting young dying Haitians that they cared for previously by stopping them from returning to OSF. And OSF like other big corporations (think Catholic Church) don't usually admit to making mistakes without outside pressure.
Barring a miracle Daniel is done. And there will be other Daniels in the future and they may not be Haitian.
So Daniel is one reason and a very important reason that I believe Keith Steffen should be terminated from OSF.
What I did not mention above and won’t describe in detail below are a few more reasons why I think Keith should be terminated from OSF. You see what YOU think after you read the paragraphs below:
A fifty-some year old man had a cardiac arrest and died at a Peoria restaurant after a Peoria Fire Fighter Paramedic stood and watched and was not allowed to insert a breathing tube. OSF has always been a strong supporter of Advanced Medical Transport.
The Psychiatric Unit at OSF-SFMC closed its doors. Isn’t mental illness a disease too?
Caterpillar's generous monetary donations worth tens of thousands of dollars earmarked for Haitian Hearts children were not credited to the Haitian Hearts children. The Peoria North Rotary Club President told me that Children's Hospital attempted to get their hands on Rotary’s twelve thousand dollar yearly donation to Haitian Hearts. This Rotary money was not meant for OSF. I discovered thousands of other dollars that came to Haitian Hearts but was not turned over to us by OSF until enough pressure was put on Keith to write a check and pay us back. And a physician’s huge donation that was earmarked for Haitian Hearts never made it to us but did make it to Children’s Hospital.
There was a delay in operating multiple sick Haitian children in Peoria to the dismay of their host families. One baby named Samuel even arrested and had to have outpatient CPR to revive him. I had to report the Children’s Hospital Executive Director for medical negligence of Haitian children to the OSF Pediatric Resource Center.
OSF’s spokesperson Chris Lofgren said Haitian Hearts would survive just fine after my departure from OSF in December 2001. But Keith had been saying “behind the scenes” that he was going to stop all Haitian Hearts funding. And he did so in July 2002.
I won’t describe what Keith said to me in his office, what he said to my family in his office, what he said to OSF employees in his office, or what he said about the “devil” in his office to a friend of mine and how she wanted to get out of his office as quickly as possible. And I won’t describe what Keith said about Haitian children.
I won’t describe how OSF called the American Consulate in Port-au-Prince and how the Consulate officer cried in front of me thinking that this may hinder the sick Haitian child's visa application to come to Peoria for heart surgery.
I won’t describe how Keith stated that if I quit blogging against OSF, he may allow a Haitian OSF patient to come back to OSF. Can you imagine bartering a Haitian life for a blog post?
Personal note to Keith--
I have tried to keep this as impersonal as possible. As you know, based on what you told me in your office, and what many people have told me, this post could have been much more descriptive.
Keith, why not just resign? The nuns have paid you well to do their dirty work. You are their Samoza. Go golf in Arizona or somewhere. Enjoy yourself. Life is short.
And if you decide to resign, please do some networking for Daniel before you leave. Reach out to the many hospital administrators that you must know across the United States and ask someone to accept Daniel. You don’t have to go into all the unethical reasons OSF won’t help him but you could save Daniel's life if you got him accepted somewhere else. I would transport him to and from Haiti as usual. Please give this some serious thought. Wouldn’t that be a satisfying way for you to end your career?
And one last thing, Keith.
Haitians were brought to Haiti from Africa hundreds of years ago to work as slaves. And when they dropped dead in the sugar cane field, they were replaced with more slaves. Ubuntu is an African philosophy that concerns itself with the essence of being human. It speaks about interconnectedness amongst humans. It says that you can’t exist as a human being in isolation. Ted Oswald, author of Because We Are: A Novel of Haiti, writes about Ubuntu: “…my humanity is tied up with your humanity. It says that if a part of the community is suffering, then I am suffering. Solidarity means if I am higher, I lower myself, so that you may be lifted up and we can stand together.”
John A. Carroll, MD