Gold Coast Medical Care--Do Haitian Children Deserve It?

Murray Baker Bridge, Peoria (Photo by John Carroll)

 

Several years ago I brought a few Haitian kids to a well-known pediatric medical center in the United States for heart surgery. The majority of these kids had congenital heart disease, i.e., they were born with a heart problem. And during the catheterization conference that preceded their surgery, where the kids' cases were discussed, one of the pediatric heart surgeons told his colleagues that he wanted these Haitian kids to get the same care offered to "Gold Coast kids" in their community. Even though these sick Haitian kids were to be operated pro bono, the surgeon wanted to be sure that no corners would be cut rendering high-quality care.  

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It is not unusual nowadays for a US medical center to have a section on its website describing its work with international patients seeking care at its institution. They welcome foreign patients and they stress that the best medical care will be guaranteed to them. However, these international patients are well to do, pay cash, and come to the United States expecting the best medical care in the world. And they often get it.  

According to the New York Times, December 13, 2018--

“Each year, tens of thousands of seriously ill people come to the United States hoping to access our acclaimed care. While we do not have exact figures, an economist from the United States International Trade Commission estimated in a 2015 report that between 100,000 and 200,000 international patients per year make this journey. They come with cancer, heart disease, and a host of other medical conditions. Most are incredibly sick and see us as their last beacon of hope.

“But these patients are not just showing up. Many of our largest and most elite health care institutions seek them out. This is a multimillion-dollar industry, and it is growing. With millions of uninsured and underinsured patients and uncertainty in the domestic health care markets, hospitals are increasingly reliant on patients from abroad to stabilize their bottom line."

But what about the "poor patients" who travel to the United States from a low-resource country? They are usually brought here by a group or an individual who them to receive medical care that they would not receive in their home country. And the accepting medical center does NOT have part of their website dedicated to providing care for UNDERSERVED international patients, such as those from Haiti.

Haitian Hearts has brought several hundred Haitian babies, kids, and young adults to the States for heart surgery since 1995. And the medical care these young people have received, for the most part, has been excellent--probably the best in the world. And I will always be very grateful for the teams of medical providers and the technology they use to diagnose and treat Haitian kids. 

Having said that, I have learned the hard way that there can be a very unfriendly and dangerous inflection point in the care of Haitian kids at the intersection between the local hospital administration, the medical providers, and the Haitian patient. During the last two decades when care to my Haitian kids suffered, it was often due to the medical center administration involving themselves in medical decisions that were not in the best interest of the child. 

So what can be done to protect the international patient coming from low resource settings from substandard care in the United States? (Haitian Hearts did donate over 1.1 million dollars to OSF--Children's Hospital of Illinois in Peoria for Haitian children medical from 1995--2002. So to be clear, my kids' care in Peoria was not "free".)

Having been involved with Haiti for four decades now, I have written this post with Haitians used as an example to make my points. However, anytime you see the word "Haitian" you can substitute it with any poor country. (Some may disagree with this statement, but I am leaving out any racism against Haitian kids that definitely exists. That is another story for another time.)

How do we make sure the accepting medical center lives up to its responsibilities with the patient from Haiti? How do we be vigilant to protect the patient when the financial bottom line at the medical center may be more important than the health of the Haitian child? The Haitian patient had no say and the host family charitably caring for the Haitian child had very little say. 

My answer would be to create an "outside agency" that would monitor the medical center's treatment of the foreign patient if a problem came up that was not solved using normal channels within the medical center. And I say outside because the agency would have to be free from the tentacles of the medical center. In other words, the people in the outside agency cannot receive their paycheck from the medical center that they are observing. Creating an outside agency like this in places like Peoria could be very difficult where the business community sticks together and will support the largest employer in Peoria--OSF. But it is necessary to assure comprehensive care for patients who have no voice. 

I will describe some of my experiences with anecdotes during the last 25 years with Haitian kids brought to medical centers in the United States. And I crowd-source this to anyone who wants to comment on their experiences with foreign patients from a low-resource setting. My examples are not meant to be all-inclusive of situations that arise when caring for international needy patients. However, the underlying objective remains the same--to create a mechanism to safely guide the patient through their treatment at the accepting medical center. 

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Before traveling with the sick Haitian child and while I was still in Haiti, I would often talk with the medical center in the United States and let them know when I was coming to the States with the child. And some of the time my Haitian patients would be given an outpatient appointment at the medical center. However, due to the fact that I had examined the patient many times in Haiti and knew their current condition quite well, at times I thought that my patient could not safely wait for their outpatient appointment and needed to be examined sooner rather than later. And occasionally I did get significant push back from the person on the other end of the line who was being pressured by the medical center to do the workup as an outpatient so costs were cut as much as possible for the medical center. And so the stress on me was intense to walk the fine line between the current needs of my very sick kids as we were getting on the plane and the wishes of the medical center who were watching their bottom line--not the sick Haitian child who needed heart surgery. 

Over the years in the Haitian airport in Port au Prince, there were quite a few times I had serious doubts about getting on the plane with certain sick Haitian kids. I knew I was risking it but I also knew I was risking it if I left the children in Haiti. And upon landing either in Miami or in another city on the trip, there were times when I headed directly to the nearest emergency department with the child so she could be evaluated quickly. 

On one trip I had a very sick and malnourished baby and when we landed at Miami International Airport, I called an ambulance even before we got to Immigration in the airport. EMS rapidly arrived and we went to the ER and then to Pediatric Intensive Care for a few days until the baby was stabilized and ready for the next leg of the journey.  

In Peoria, there were a few times when I brought Haitian children directly from the plane to the ER where I was able to evaluate them much more thoroughly than I had in Haiti. And I did admit several to the Pediatric ICU in Peoria which did not go over big with the CEO at Children's Hospital of Illinois (CHOI). After doing this on one occasion he said to me that I liked to bring the sickest kids in the world to CHOI and then expect CHOI to "save them". I know I must have looked at him quizzically because that is what I thought hospitals did.

My point is that providers looking after sick kids from the developing world should not have to worry about whether the kids they bring need inpatient or outpatient assessment before surgery. If the kids need immediate assessment, it should be a no-brainer. 

And what about intimidating nurses and physicians who became afraid to do their medical job with my Haitian kids? I remember one physician who would not even write a prescription on his pad from his office. He asked me to write the prescription for the child. The same physician asked me to see the patient in his office because he was afraid to do so. I even remember the resident physician being afraid to carry out orders written on an inpatient Haitian child's chart out of fear. 

These are obviously very serious situations for the patient and for the doctors involved. 

Unfortunately, another area where the outside agency could help the international patient would be to make sure that her tests were not canceled and that her surgery was not delayed inappropriately by the administration. This happened to my Haitian patients also. This was an untenable situation for the patient, the host family, and for the doctors involved in the care of the child. The nursing staff was very upset also to have an administrator walking in on the private physical exam of a pre-op Haitian patient in the cardiology office. Intimidation of the staff should not be part of the accepting medical center's philosophy. 

Once surgery was over, I remember hospital administration trying to send a patient back to Haiti before they were medically cleared to return. And this very same patient actually needed more surgery--which he got--before returning to Haiti.

In 2008, the New York Times ran this article on the repatriation of patients from medical centers in the United States by hiring air ambulances for $30,000.  OSF in Peoria was not original in attempting to send back an international patient. St. Joseph's Hospital in Phoenix sent back 96 patients in the mid-2000s. 

“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”

 An outside agency would look into any issues called to their attention where undue pressure was being put on the physicians to send patients back to their home country before the patient was ready.

Hopefully, the outside agency would be able to effectively address intimidation by the medical center of anyone involved with the care of international patients. The agency would be a place to turn to in an anonymous fashion, if necessary. I distinctly remember the fear of a Haitian Hearts supporter when an OSF Administrator mentioned a biological child of the supporter. The supporter was going to go to our local Peoria media to report negligence by the medical center of a Haitian patient but stopped cold when she thought of her own child and the administrator knowing his name. (This same administrator had told me that fear amongst employees in the medical center was a good thing.)

And what if the patient needed more surgery in years to come? Should my Haitian children have been denied the opportunity to return to OSF-CHOI for further heart surgery? They should not have been denied, but some were denied--and they died. I wrote countless emails over the years to OSF Corporate, Administration, Boards of Directors, Ethics Committees, etc, for OSF to change their policy regarding Haitian children and repeat heart surgery, with no positive answer and usually no answer at all. 

Who wanted to publically complain about OSF's negligence when something like the above happened? No one. All politics are local and people do not want their families to suffer repercussions for their disapproval of OSF. Hopefully, an outside agency would help encourage the medical center to make "patient-centered" decisions. 

Conclusion--

“Issues of justice in health care are complicated. Large academic medical centers have ethical and moral responsibilities to their surrounding communities and also to the wider world. These obligations are often aligned, but not always. International patient programs bring these tensions into sharp relief.” (New York Times, December 13, 2018)

Bringing a patient from a low-resource country to the United States for medical care is a big deal in so many ways. And anyone who has done this knows that "the road to hell is paved with good intentions." 

The international patient from a low resource setting needs to be protected even in institutions that are offering their medical care as "charity." Just doing things "for free" should not be a carte blanche for the medical center to act unethically. 

There is often great fear of a dominant medical center in a community because of the power it holds over the community. A mechanism needs to be set up which protects not only the international patient but also the providers and others in the community who are advocating for the patient. 

The examples I have included are extreme, but they did happen, and they can happen again without transparency in the medical center. There are many other examples I could have included. But this is a start. Medicine at the corporate level in the United States is another big business that needs to be treated as such. 

John A. Carroll, MD

www.haitianhearts.org