Thursday, August 30, 2007

Pity and Compassion are not Enough

Paul Farmer gave a talk recently at the University of Utah as part of Tanner Lectures on Human Values.

Paul talked about the fact that more than 80 million Africans might die from AIDS by 2025 with a similar toll on that continent by tuberculosis and malaria. He states that “these numbers have lost their ability to shock or even move us”.

Paul goes on to ask, “What sort of human values might be necessary to save a young man’s life (someone dying from AIDS, for example). Compassion, pity, mercy solidarity and empathy come immediately to mind. But we also must have hope and imagination in order to make sure that proper medical care reaches the destitute sick.

“Are the human values of compassion, pity, mercy, solidarity, and empathy all there is to it? How might the notion of rights reframe a question often put as a matter of charity or compassion?

“Do the destitute sick of Haiti or Kenya ask for our pity and compassion? Often they do. But can’t we offer something better? The human values required to save one person’s life, or to prevent children in a single family from losing their parents, surely include pity and compassion and those sentiments are not to be scorned. Often it is possible to save a life, to save a family. But “scaling up” such efforts requires a modicum of stability and the cooperation of policy makers and funders, themselves unlikely to suffer the indignities of structural violence.

“To move from pity and compassion for a the values inherent in notions of human rights is along leap. For many, especially those far removed from conditions such as those faced in rural Haiti, the struggle for basic rights lacks immediacy. But sometimes we can entrap ourselves into becoming decent and humane people by advancing sound policies and laws. The road from unstable emotions to genuine entitlements is one we must travel if we are to transform human values into meaningful and effective programs that will serve precisely those who need our empathy and solidarity most. In other words, we are not opposed to pity, but we’re anxious to press for policies that would protect vulnerable populations from structural violence and advance the cause of social and economic rights.”

Paul finishes with the following:

“The language of political rights has become meaningless to many people living in the world’s unimaginable poverty. Conversely, the language of economic rights is sometimes viewed as excessive, menacing, and irresponsible in the eyes of people living in the midst of plenty. This growing rift, I would argue is the most pressing human rights problem of our times.”

Kindred Spirit

“Freedom had been hunted around the globe; reason was considered as rebellion; and the slavery of fear had made men afraid to think. But such is the irresistible nature of truth that all it asks, and all it wants, is the liberty of appearing...In such a situation, man becomes what he ought. He sees his species, not with the inhuman idea of a natural enemy, but as a kindred.”

Thomas Paine, 1791

Wednesday, August 01, 2007

Peoria's Catholic Post

The Catholic Post in Peoria can leave one confused.

The July 29, 2007 issue had an article about OSF’s groundbreaking ceremonies immediately followed by an article on the legacy of Dorothy Day.

What is the reader to believe? Mixed messages are being sent.

The article regarding OSF’s $234 million dollar Milestone project was replete with statements that the Sisters started from humble beginnings 130 years ago in Peoria. Sister JudithAnn, president of OSF Healthcare System stated, “We have placed these resources into the hands of the most caring physicians, nurses and technicians so that all who come to us in need of health care can be received with open hands and hearts. The true joy of this day is to realize that in serving those in need we serve Christ Himself.”

But OSF is not doing what Sister JudithAnn told the crowd at the ceremony. What about the Haitian Hearts patients that are being turned away at OSF and are dying? Would the pioneer Sisters that started with "humble beginnings" in Peoria 130 years ago be proud of OSF's immoral behavior now? I don’t think so especially with the amount of money available for medical care.

Multiple dignitaries spoke of the Sisters great work in Peoria over the last century, and I agree it has been great work. However, the dignitaries are hiding behind the Sisters now as OSF ignores the sick and dying Haitian kids.

Bishop Jenky "prayed that God would bless the builders, benefactors, physicians, nurses, employees, and all those cared for by OSF Saint Francis and Children’s Hospital, especially “the little ones”". I completely agree with this also. But it seems to me that Bishop Jenky forgot Haiti’s “little ones” when he abandoned the Haitian Hearts program in Peoria several years ago. His Chancellor, Monsignor Rohlfs, called a picture of a Haitian child with heart disease an “advertisement”, rather than a “little one” during a Haitian Hearts committee meeting.

What is one to believe from the Diocese and OSF?

Dr. Kay Saving, the medical director of Children’s Hospital, personally turned away a Haitian child from receiving care at Children’s Hospital several years ago. However, at the groundbreaking ceremony the Post reported that Dr. Saving stated that the guiding principal of the new facility is “the patient will be first”. Amazingly this statement meant that the new $234 million dollar Children’s Hospital will “feature private rooms that include comfortable beds for a parent that may wish to stay the night.”

What about the Haitian kids who live in small stifling rooms with 10 other family members who have no options for medical treatment? What would the OSF founding Sisters say about that? Contrary to Dr. Saving's declaration, the sick Haitian child is definitely not coming first.

And the article on the legacy of Dorothy Day described a lady who “handed herself over totally to the humble and courageous service of the poorest of the poor" by fighting for their causes in her newspaper, “The Catholic Worker”.

Bishop Jenky is the Publisher of The Catholic Post, the newspaper of the Diocese of Peoria. Too bad he and the Post send mixed messages to all of us regarding care of the Haitian poor. I bet Dorothy Day would have been honest regarding this issue and would not have hid behind the OSF Sisters as did the groundbreaking dignitaries.

(Pictured at the top of this post is my niece standing in front of a tiny hospital in a slum in Port-au-Prince, Haiti. The slum is home to 400,000 people and this is the only hospital that is functioning. Below is OSF, the largest medical center in downstate Illinois.)

Does Cite Soleil Deserve Simple Technology?

Since 1995, Haitian Hearts has helped bring approximately 150 infants, children, and young adults to the United States for medical treatment unavailable in Haiti. The vast majority of these kids have suffered congenital heart disease or rheumatic heart disease.

Congenital heart disease means the patient was born with an abnormally formed heart. Rheumatic heart disease is an acquired heart problem due to Group A beta hemolytic streptococcus infection. The streptococcus infection is usually a pharyngitis that goes untreated in resource poor settings.

The teenagers in Haiti with rheumatic heart disease break our hearts when we examine their broken hearts. These patients usually have valves that have been injured and do not work well. They are leaky or calcified and tight and won’t open like they should. Many times the valve is leaky and tight at the same time.

These teenagers are in a constant state of congestive heart failure. They have missed much school over the years and can’t contribute much to the family because they can’t physically exert themselves. Their hearts are just too weak from rheumatic heart disease.

Many of these kids die in Haiti before we can find an accepting hospital in the States to operate them. The children and teenagers that have made it to the States and have their valve repaired or replaced have a new lease on life. But surgery is very difficult, being placed on a blood thinner can be problematic, and sometimes more surgery is needed if the valve fails again or another episode of rheumatic fever occurs.

The New England Journal of Medicine has two excellent articles on rheumatic fever this week (August 2, 2007).

Important points made in the two articles:

1. Rheumatic fever is a disease of poverty. Overcrowding and poor hygiene allow the easy transmission of streptococcus. Malaria, tuberculosis, and AIDS are bad diseases and are very prevalent...but so is rheumatic heart disease.

2. In the mid-20th century, children with rheumatic fever occupied many of the beds in pediatric wards in industrialized countries---some hospitals were totally dedicated to the treatment and rehabilitation from rheumatic fever.

3. In the later half of the 20th century, rheumatic fever receded as an important health problem in almost all wealthy countries because the standard of living is so high and because penicillin is available.

4. For the resource poor world, rheumatic fever and rheumatic heart disease are huge problems right now.

5. It was recently estimated that worldwide 15.6 million people have rheumatic heart disease. These are conservative estimates. A walk through Port-au-Prince and Cite Soleil would prove that to you. And almost all of these cases and deaths that occur happen in the resource poor world like Haiti.

6. An unfortunate consequence of the decline in rheumatic fever in industrialized countries has been a parallel reduction in related research. In other words, if we in our well-to-do world don’t get this disease, why do much research?

7. Most resource poor countries do not have effective primary or secondary preventative measures and higher degrees of treatment such as medication for heart surgery, valve surgery, and anticoagulation are not found in places like Cite Soleil.

8. The authors of one of the articles studied kids in high risk settings in Cambodia and Mozambique, and found that echocardiographic screening found many subclinical cases of rheumatic heart disease that could be treated to prevent further valve destruction. Echocardiography picked up many more cases than did the stethoscope and clinical exam.

9. The authors concluded that it is not acceptable to leave these cases undiagnosed and these children at risk for recurrence of rheumatic fever simply because echocardiographic screening is seen as an inappropriate use of modern technology in developing countries. Instead, further research is needed to define models of echocardiographic screening that are practical, affordable, and widely applicable.

10. Portable on site echocardiograms are not difficult, the machines are small and give very good images, and should be done in research poor settings. That would include Cite Soleil.