Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, January 3, 2010

How Much is That Baby in the Window (a/k/a the Plastic Box)?

With the debate on health care raging, it seems everyone has an opinion on the cost of saving a preemie's life. The articles that have cropped up seem to all involve the cost of saving micropreemies and not later term preemies. Later term preemies can often be gravely ill with equally high costs of care, but I suspect the media would view it as unseemly to suggest that we not make costly efforts to care for a gravely ill 4 pound 34 weeker. It is far easier for those in the media to focus the debate on 1 pound 24 weeker micropreemies since, to those fortunate enough not to belong to this select club, 1 pound babies are not very baby-ish in appearance and make for better fodder for their arguments and present a far more compelling photograph for their articles.

Another micropreemie mom shared this latest article with our little band of micropreemie parents.

I am always struck by articles that apply a cost benefit analysis to health care and am always left wondering: "has the author ever had to face a catastrophic health crisis in his or her life?"

About a year ago I had a very unpleasant conversation with Eliza's "personal" claims person, kind of like a personal shopper but not nearly as helpful. Our goals were clearly at odds. I wanted Eliza's formula covered and she would only approve coverage if I had a g-tube placed, but not if Eliza drank the formula orally. Ultimately I won, with a constant battle every three months to continue coverage. But during that conversation the woman said something to the effect of "well Miss Richter I see we have spent over $2.3 million in the past 3 years" (even NICUs, hospitals, doctors, therapists and pharmacies are more expensive in NYC). I paused, and then told her that "health insurance, like life insurance, is a bet and United HealthCare Oxford lost this bet. You bet that everyone will be healthy, the same way life insurers bet that we will live to be 100. You lost this bet and lost it badly." I also pointed out that I had unlimited lifetime coverage and had no intention of ever switching carriers. She pretty well shut up after that.

I think, like it or not, we have always had a health care system, whether you are publicly or privately insured, that is constantly weighing the value of a life by the cost to maintain a life.

At the same time I was having that conversation with one of UHC Oxford's finest, my father was dying of Alzheimer's. Alzheimer's is an awful disease with no cure, limited methods to put off the inevitable and it sucks the life from you each and every day as your brain basically melts away. It is not the happy disease with smiling, elderly people gently fading away that TV portrays. One day you forget who your wife is. The next day you forget how to eat. My father thankfully knew what his future held early on and had a very detailed advanced directive which clearly stated he wanted no support at all, not even IV fluids at the end. Ultimately my Dad died of kidney failure, with great hospice care and in no pain. But despite his wishes I had innumerable people say to me "aren't you going to put him on dialysis?"

The irony of all of this struck me at the time since my father's insurer, Medicare and Medicaid would have paid endless bills for endless care to keep him alive when he did not want to be kept alive, yet my very expensive insurer was refusing to pay for Eliza's very necessary, life-sustaining formula.

I am always at a loss to figure out who makes these decisions in the health care industry. An actuary? A bookie? Whoever it is, I am firmly convinced that he or she (or "they") have never had a catastrophic medical crisis in their family. I am also convinced that the authors of these articles that focus on the "conundrum" of the cost of care for micropreemies has never actually had to face that particularly awful conundrum and for that alone they should be eternally grateful.

There are many, many parents who make the heartbreaking and painful decision not to resuscitate their children or have to face the decision to discontinue care for their critically ill infants and to offer palliative care. I am very certain that when these decisions were being made no one was thinking of the cost benefit analysis.

I am not advocating resuscitation of infants at all non-financial costs, but rather advocate that each situation be uniquely evaluated. THIS other article seems to take a well reasoned approach to evaluating each neonate before making a decision to render or not render care. Is there an edge of viability beyond which nothing can (or should) be done? In my opinion, yes. But once the child is beyond that edge, deciding whether or not to render care based upon a cost benefit analysis is just wrong.

I harken back to the family member who actually suggested that we should look for a kidney transplant for my father when his kidneys were failing. I firmly told them that if my father could speak he would consider it a waste of a good kidney and would rather have that kidney go to someone who could use it to enjoy a good, full life.

This was not a decision based upon a cost benefit analysis, but rather a life benefit analysis and that is the way I think all health care decisions should be made.


Catherine W said...

' . .the authors of these articles that focus on the "conundrum" of the cost of care for micropreemies has never actually had to face that particularly awful conundrum'

I agree with you wholeheartedly. It is a completely different matter when it is your own child's care that is up for discussion. And the media do love the micropreemie issue. Sigh.

Thank you for linking to the Janvier & Barrington article. I think it should certainly be a decision made on the basis of an individual assessment and I liked the point they made regarding the same odds of death or disability but applied to different situations. Ones where there would be no discussion at to whether care would be given or not.

Both of my daughters would have been left to die if they had been born in a hospital with a policy based solely on gestational age. I was very lucky that the doctors took a chance on them. For one of girls it paid off remarkably.

Sorry that you had had such a nightmre with claims for Eliza. It makes me feel extremely lucky to live in the UK where I have not had to fight the same battles.

SpeasHill said...

You said it so well that I'm just sending my readers your way again! Thanks!

Natalie and Abigail said...

Beautifully written, of course.

I really don't fully understand this whole cost-benefit analysis argument. So it makes sense to spend thousands or millions on a person in a vegetative state because the family doesn't want to pull the plug, but not on a baby who might have a chance?

Very strange logic.

Megan said...

I stumbled upon this through a friend of a friend of a blogger (if you follow), and I'm glad I did! I'm the mom of a 30 weeker who was only 1 lb 6 oz. and has racked up about a million dollars in bills so far (he's 8 months old now).

The health care debate is a constant one in our house, and we are thankful for insurance, though I want to pull my hair out weekly due to one argument or another with some service rep or case worker about coverage. Why is it so difficult?