A number of bloggers I follow and respect have written about how Children's Hospital of Philadelphia denied a child a kidney transplant because she is mentally retarded:
[The doctor] says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The overwhelming consensus seems to be that this decision is terrible, unethical and unfair.
I will wholeheartedly agree that it is terrible. My heart goes out to this family. I can't imagine what they have been through.
I just can't.
I can't imagine what it must be like to be told that your unborn child will come into this world profoundly disabled. I can't know what it is like to sit in the NICU, praying your baby will live, and then rejoicing when she does. I can't know what it is like to struggle with the many needs of a medically-fragile child, praying for miracles on a daily basis.
I can't imagine being told that a child I loved deeply, with all my heart, might die because she cannot have life-saving medical treatment. I can't fathom what it would be like to know that the treatment is just out of reach. If only...
...if only the child were normal.
I can't imagine the shock, grief, anger, and heartbreak.
There are no words to describe this.
At the same time, however, I recognize that our medical system rations healthcare.
Rationed healthcare? Is that fair?
Fair in this case depends a lot on how you view medical services. If you see them as a professional service, then they must be bought and paid for. If you see them as a fundamental right, then everybody should get whatever treatment they need. There are problems with both of these viewpoints.
If medical care should be treated like a professional service, then rationing is inevitable. For low- or middle-income families that do not have health insurance, rationing becomes part of daily life. Adults ask themselves, "Is my child's cold just a cold, or is it something more serious? Can we avoid going to the medical center this time? Why not wait a day and see if Junior is better?"
If a family does have insurance, medical care is still rationed, only those decisions are made by the health insurance company. They determine co-pays, what they will and will not cover, and how much they will spend on an individual or family. They set limits, and though those limits may not be popular, they help to control what an individual, family or group pays for insurance.
After all, insurance simply spreads the cost of everyone's healthcare across a large group. The premiums are set using statistical analysis, assuming that for any given pool of people, a certain percentage will need medical care, and a certain percentage will not.
Insurance companies must set limits on what they will pay, or a few really sick people could bankrupt the system for the entire group.
If you look at healthcare as a fundamental right, then everyone should receive treatment. The problem, of course, is that doctors, laboratories, and hospitals still cost money. I don't know too many professionals who are willing to give unlimited amounts of their time and services away for free, so someone has to pay them. In the case of public healthcare, that someone is the government, which is funded by the taxpayers.
The question then becomes how much is everyone willing to pay for healthcare?
It's a tough question, and it's certainly one that's created a lot of political strife in the United States. Whether you are for President Obama's healthcare system or not, the debate has brought the skyrocketing costs of healthcare to the forefront.
Going back to little Amelia for the moment, hers is a difficult problem. I can understand why an insurance pool (whether publicly or privately funded) wouldn't want to pay for her transplant. By paying for that transplant, they will give her a few more years of life, which is a good thing if you believe in the sanctity of life. From a strictly economic perspective, however, it doesn't make sense. By extending her life, the insurance pool guarantees they will have to pay for her substantial medical needs for a longer period of time. I can understand why a bean counter somewhere might have a problem with extending the life of someone who is likely to cost more than the family would ever pay in premiums.
This is terrible to thing to consider. How can you put a price on life?
Let's suppose the family isn't going to rely on any type of insurance to cover the cost of the transplant. Suppose they plan to raise all the money (the estimated cost for a kidney transplant is $262,900) and the cost to an insurance pool isn't a factor?
I can still see why a doctor might deny the transplant.
What if there was only one available kidney, but two perfect matches? One match is little Amelia, and the other is a child who is developing normally. Who gets the transplant? Who deserves it? Little Amelia isn't likely to live a normal lifespan. She will never hold down a real job or live independently. The other child has a chance at a normal, productive and healthy life.
Who lives? Who dies? How does someone even make these types of decisions?
Although we would like to think that our society is perfect, just, and all lives are equally valuable, the reality is that this is not true. We've seen this throughout history. There are the haves and the have-nots. There are the masters and the slaves. There are the rich and the poor. There will always be people in our society who have more of something, whether it be money, smarts, skills or good looks. Life isn't fair.
Advocates for social justice want to level the playing field, but I think even the most ardent realize that there is an innate unfairness to the world. We aren't all the same. We are all unique, and have different strengths and weaknesses. Some children are born geniuses. Others, sadly, are born intellectually disabled.
Our country has finite medical resources. There are a limited number of doctors, hospitals, surgery beds, money and kidneys. There aren't enough organs for everyone who wants or needs a transplant, and sometimes hard choices have to be made.
So when I think about all these things, I can understand why a doctor would consider quality of life issues. If there is only one kidney, and it could go to someone who will lead a full, healthy and productive life, or it could go to someone who likely will die young, have other medical issues, and never live independently, I can see the logic in the system favoring one child over another.
The truth is, rationing decisions aren't made only on life or death situations like Amelia's. Our county has been rationing mental health care for years, and the results are painful. Of the three foster kids that stayed in our home, all would have benefited from skilled mental health care. To save money, our county hired inexperienced interns to handle individual and family therapy, and I think it has resulted in less than stellar outcomes. I truly believe that if our daughter had received quality care from the beginning, instead of the system waiting for a crisis, slapping a band-aid on it, and then waiting for the next crisis, she would be doing much better now. Had her therapists and pediatricians been willing to give her medication sooner, rather than later, I think she would be doing better socially, emotionally and educationally.
But that's not what happened. Though I strongly feel that our county has been penny wise and pound foolish with respect to the mental, physical and dental care of all the kids in foster care, I also have to respect the fact that the county runs the healthcare system and they get to make their own rules. Although I disagree with much of what has been done, have often complained about things, and have at times chosen to fight, I realize that the rationing system in our county is based upon the golden rule:
He who has the gold, makes the rules.
I have wondered if our county's mental health treatment decisions aren't always based on need. Sometimes, it has seemed that decisions are based upon things like a child's ethnicity or whether or not a committee thinks a family deserves a given treatment. I remember comparing our daughter, her background, and her mental health needs with that of a child placed with some friends of ours. Our child seemed to have greater needs and a worse history of abuse, yet our friend's child was initially given far more help. While their child received a plethora of services, we had to beg and fight to get basic counseling for a child we knew had been sexually abused. At the time, I wondered if discrimination might have come to play in the decision. Our friends were white, heterosexual, and Christian, and their child was white. We, on the other hand, were gay and Jewish, and our child was of color.
Was that the reason? I will never know. Still, the question did cross our minds.
Is it fair?
But the truth is, the system isn't fair. It can't be fair. There aren't enough resources to go around, and difficult decisions have to be made about who gets those resources. Should it be those who would benefit the most? Should it be the sickest? Should it be the squeakiest wheel?
As for little Amelia, I am uncomfortable with the idea that she should be summarily denied a transplant due to her intellectual disabilities. At the same time, however, I can't help but be painfully aware of the questions her situation raises. If there is only one kidney, and it is an equal match with more than one potential recipient, who should benefit?
Who lives? Who dies? How do you determine the value of a life? How do you decide whether a child deserves treatment over another?
I know that Amelia's parents are truly suffering as a result of this decision. Regardless of her disabilities, she is loved, and they want her to remain alive for as long as possible. She is their child. How could they feel otherwise?
To her family, her friends, and the people who care about her, Amelia isn't a dollar sign in an accountant's notebook. She is a living, breathing, human being, with a value and character that is uniquely her own.
My heart goes out to her family. I pray they will have peace, and the strength to carry them through whatever future ultimately faces them. I will go to bed tonight thinking of them, hoping they know that there are people out here in the blogosphere who care.
As for me, I am immensely glad that I am not the one responsible for making these kind of decisions.
I know it would keep me up at night.