There is a current story about an infant being denied a heart transplant. You can read it HERE. The baby was born with a major congenital cardiac defect requiring surgery. Ultimately the child's condition can only be treated with a heart transplant. The child was first approved and then taken off the list because of the diagnosis of a congenital condition associated with developmental delay.
The parents went to the media, who portray it as a terrible miscarriage of medical justice and ethics. The end of the story is the 'miracle' of a Boston hospital changing his medications so that he gains so much weight and does so well that he no longer needs a transplant. The story minimizes the fact the baby was turned down as a transplant candidate at numerous centers, and smoothes over the reality of his limited functional prognosis. The parents describe in highly colored terms the cold and uncaring doctors at Presbyterian in New York, and have filed a complaint against them.
I bet the story gets optioned as a movie script- suffering innocent baby, determined and distraught parents, villain doctors, hero doctors, and a closing credit in which the baby's glowing future is outlined. Except that the whole story is misleading and manipulative. It follows close on the heels of the story of the child denied a lung transplant as a child and getting a lung as an 'adult' at age 11. It is necessary to examine the reality behind these hand-wringing stories.
The cold reality is there are many more people waiting for transplant than we have organs. The plain truth is that most people waiting for a transplant are going to die before they get one. A great single reference is Up-To-Date. Their material on cardiac transplant is HERE. The simple, mathematical reality is there are 50,000 candidates for cardiac transplant every year, and only 5000 hearts. 90% of candidates are going to die. And this does not count those who are not healthy enough to BE candidates.
As stated by Up-To-Date, the acute shortage of organs means that recipients are rigorously screened medically, psychologically and socially. For those who do not qualify this is portrayed as prejudice, as judgment, unethical, unfair, biased, as doctors playing God.
You are exactly right. The medical professionals are making choices. And who else would you have make them? The family? A panel of citizens? Most people have no idea of how these choices are made.
Transplant programs have a committee that meets every week or two to review potential candidates. This committee is composed of the physicians who evaluate the candidates, the psychologists and social workers, but also typically an informed lay person, a community representative. This person or persons is(are) there specifically to voice the concerns of non-medical persons. The image of transplant programs as heartless and unethical is wildly distorted from the reality of process. And these committees must decide how to apportion a precious resource- solid organ transplants. And only those who rigorously qualify are accepted.
Most people have never been in a situation where 90% fail. Increasingly our society rewards everyone. There is no failure in the US. Everyone is a winner, everyone is capable. No Child Left Behind!
Except that is not true. Not for income, for talent, for intellect, for size. And not for organ transplantation. When the threshold for organ transplant is reached the family and patient are explicitly aware that the alternative is death (or dialysis for kidney transplant patients). This is not cruelty or bias. It is just math, just reality. Transplant programs are full of joy and success stories. They are even more full of agony, loss, death and tears. For patients and families but also for the staff, who go into this branch of medicine to offer hope to the otherwise hopeless.
A child with a genetic syndrome of any kind is not a transplant candidate. The quality and length of life for such a child is not equivalent to a child without genetic abnormalities. That is reality, and doctors and society are not simply entitled to make such judgments. They are ethically required to do so. The transplant services are responsible to the patients, but also to society as a whole in the allocation of a scarce and precious resource. The point is immediately clear if you consider that to give a heart to a genetically defective child means that heart is taken from a genetically normal child, that a genetically normal child will die. Is that just? Obviously not.
There simply are not enough organs for everyone who qualifies for a transplant. Those qualifications are rigid, and they should be given the scarcity of organs. I and all doctors and transplant recipients (and I am both) grieve for a child's death. But the personal agony of one family does not change either the reality or the process.
Ted
The parents went to the media, who portray it as a terrible miscarriage of medical justice and ethics. The end of the story is the 'miracle' of a Boston hospital changing his medications so that he gains so much weight and does so well that he no longer needs a transplant. The story minimizes the fact the baby was turned down as a transplant candidate at numerous centers, and smoothes over the reality of his limited functional prognosis. The parents describe in highly colored terms the cold and uncaring doctors at Presbyterian in New York, and have filed a complaint against them.
I bet the story gets optioned as a movie script- suffering innocent baby, determined and distraught parents, villain doctors, hero doctors, and a closing credit in which the baby's glowing future is outlined. Except that the whole story is misleading and manipulative. It follows close on the heels of the story of the child denied a lung transplant as a child and getting a lung as an 'adult' at age 11. It is necessary to examine the reality behind these hand-wringing stories.
The cold reality is there are many more people waiting for transplant than we have organs. The plain truth is that most people waiting for a transplant are going to die before they get one. A great single reference is Up-To-Date. Their material on cardiac transplant is HERE. The simple, mathematical reality is there are 50,000 candidates for cardiac transplant every year, and only 5000 hearts. 90% of candidates are going to die. And this does not count those who are not healthy enough to BE candidates.
As stated by Up-To-Date, the acute shortage of organs means that recipients are rigorously screened medically, psychologically and socially. For those who do not qualify this is portrayed as prejudice, as judgment, unethical, unfair, biased, as doctors playing God.
You are exactly right. The medical professionals are making choices. And who else would you have make them? The family? A panel of citizens? Most people have no idea of how these choices are made.
Transplant programs have a committee that meets every week or two to review potential candidates. This committee is composed of the physicians who evaluate the candidates, the psychologists and social workers, but also typically an informed lay person, a community representative. This person or persons is(are) there specifically to voice the concerns of non-medical persons. The image of transplant programs as heartless and unethical is wildly distorted from the reality of process. And these committees must decide how to apportion a precious resource- solid organ transplants. And only those who rigorously qualify are accepted.
Most people have never been in a situation where 90% fail. Increasingly our society rewards everyone. There is no failure in the US. Everyone is a winner, everyone is capable. No Child Left Behind!
Except that is not true. Not for income, for talent, for intellect, for size. And not for organ transplantation. When the threshold for organ transplant is reached the family and patient are explicitly aware that the alternative is death (or dialysis for kidney transplant patients). This is not cruelty or bias. It is just math, just reality. Transplant programs are full of joy and success stories. They are even more full of agony, loss, death and tears. For patients and families but also for the staff, who go into this branch of medicine to offer hope to the otherwise hopeless.
A child with a genetic syndrome of any kind is not a transplant candidate. The quality and length of life for such a child is not equivalent to a child without genetic abnormalities. That is reality, and doctors and society are not simply entitled to make such judgments. They are ethically required to do so. The transplant services are responsible to the patients, but also to society as a whole in the allocation of a scarce and precious resource. The point is immediately clear if you consider that to give a heart to a genetically defective child means that heart is taken from a genetically normal child, that a genetically normal child will die. Is that just? Obviously not.
There simply are not enough organs for everyone who qualifies for a transplant. Those qualifications are rigid, and they should be given the scarcity of organs. I and all doctors and transplant recipients (and I am both) grieve for a child's death. But the personal agony of one family does not change either the reality or the process.
Ted
Well written. To use an analogy all can understand, there isn't enough pie for everyone to have a slice. Or as Lincoln put it when he had a horde of people trying to seek office positions, "There are too many pigs for the teats."
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