The New Doctor - Part II

Today, we all went to meet Danielle's new doctor.

This was, of course, after a mild temper tantrum last night where Danielle expressed considerable anger over the scheduling of the appointment.  In her mind, we had deliberately picked a time that was inconvenient for her, and we didn't care how these appointments impacted her schedule.

The truth was, the clinic offered an appointment, and we took it.  We were trying to get the kid in as soon as possible.

So we went to the clinic and waited for nearly an hour to be seen.  When we finally got in, though, the doctor seemed very nice.  Truly, she is a breath of fresh air.

So we sat in the exam room and discussed what has been going on.  The doctor seemed really shocked when we told her that Danielle has been physically abusing us for the past three years.  When we finished, the doctor turned to the kid.

"Is this true?" she asked.

Danielle shrugged sheepishly.  "I guess," she mumbled.

We spoke for a few minutes, and then the doctor met with Danielle privately.  When she was finished, she called us back in to the exam room.

She agreed it was important Danielle be seen by a psychiatrist as soon as possible.

She instructed us to get back in touch with the county mental health people, and wrote the following on  a prescription:

[Danielle] would significantly benefit from obtaining psychiatric care and evaluation as soon as possible.  If I can assist, please notify me. [phone number]

We will be taking a copy of this note to her therapist tonight, and we'll also contact the county mental health office as well.

Here's to hoping this moves us in the right direction.

The New Doctor - Part I

As I mentioned a few days ago, we finally fired Danielle's pediatrician.

This morning, we verified that her case had been reassigned, and we called her new doctor.  We asked for an appointment, explaining that we wanted to discuss whether a medication adjustment or perhaps a referral to a psychiatrist would be warranted, given our daughter's recent violence at home and at school.

I was expecting that we'd have to wait at least a couple of weeks, if not longer, for an appointment.

We were amazed when FosterEema called, because the new clinic was able to get us right in.

Danielle has an appointment tomorrow.

We Fired the Pediatrician

A lot has happened since Danielle's most recent explosions at home and at school,  A lot of it, I'm not going to share publicly, because it's complicated and messy, and for the entire story to make sense, we'd have to share a lot of personally identifying information, which I am not prepared to do at this point.  What I will say is that it has involved talking to a lot of people, including school staff, therapists, law enforcement, the crisis hotline, Danielle's pediatrician and even an attorney.

They all say the same thing.  They all give us a list of what we (and they) can't do.  The list is very long and complicated, but if we break it down into its most basic components, it boils down to two things:

1. We can't get Danielle the help that she needs.
2. We can't give custody to someone else -- not to the county, not to another foster home, not even to another adoptive home.  We are stuck.

Everybody agrees that this situation is intolerable and unsafe.  They agree that nobody should have to live this way.  They agree that this isn't good for any of us.  Danielle's explosions are violent and dangerous; her behavior is completely unacceptable.

Yet, they all come back with pretty much the same answer:  There isn't much we can do.

Sure, some of the people we've talked to have agreed to help, but the help they can provide is very, very limited.  Danielle recently qualified for one-on-one therapy that will be provided, at school, by a licensed therapist.  That's great, but it's only for a single hour per week.

I feel like we are trying to sop up the ocean with a single sheet of paper towel.

Several of the mental health professionals we've talked with have been surprised by Danielle's relative lack of medication.  All have recommended that her doctor re-examine her pharmacological interventions.  We sent the pediatrician a formal request for a referral to a psychiatrist, and she responded by screaming at us.

Yes.  She called us up and screamed at us.

Even though we were warned by our current family therapist that firing our pediatrician would result in her counseling services being terminated, this was the last straw.  This was not the first time, or even the second time, that this doctor had unleashed a heap of verbal abuse upon us.  Once, she even screamed at us for taking Danielle to the ER when we thought she might have broken her foot.  Why was she so angry?  Apparently, we were supposed to obtain pre-authorization for an ER visit, which we hadn't done.  We weren't aware of this requirement, but the doctor felt it necessary to yell so loudly that hospital staff looked on with sympathy and rolled their eyes.

I hope the next pediatrician will be more helpful.  If not, perhaps I can at least hope that she won't scream at us for trying to get our kid the medical treatment she needs.

As for our current therapist, I hope that our change in pediatricians won't create an unfortunate cascade of events.  At this point, though, it's clear we need to try a different approach.  Our fired pediatrician had a reputation for being difficult, obstinate and disagreeable, but we were told she was a competent professional.  Our experience proved otherwise.  Her tendency to scream at us, combined with the fact that she would forget important details between visits and deny we'd ever discussed them, finally made us pull the plug.

Here's to hoping that the next doctor will be more willing to listen, and to help.

Inflammation (Updated)

Earlier this morning, Danielle went to the dentist to get her remaining cavities filled.  The appointment had to be rescheduled until next month.

Why?

The dentist noticed that her wisdom teeth incisions were extremely inflamed, and hadn't really started to heal.  Therefore, he decided that he really didn't want to go rooting around in her mouth with a drill at this point in time.

FosterEema explained that Danielle had refused to follow many of the oral surgeon's post-procedure instructions, and asked if that could be the cause of the inflammation.

Although the dentist didn't confirm with 100% certainty that her lack of self-care was the cause, he said he couldn't deny that it may have contributed to the problem.

When I heard this news, I just put my head down on my desk and sighed.

* * *

Updated to add:

When Danielle came home from school this afternoon I asked her about her dental appointment.  Apparently, her dentist gave her a bit of a scolding.

"Naughty, naughty!" Danielle reported the dentist had told her.

He clearly left her with the impression that she was the cause of her own misery.

She reported that he'd said, "You would have a lot less swelling and pain if you had followed [the oral surgeon's] instructions."

"I know," she replied.

When I heard this, I just put my head in my hands, shook my head and sighed.

The fact that Danielle won't follow instructions given by her medical care providers saddens me.  If she's not able or willing to follow directions, I think it's going to make her life a lot more difficult than it needs to be.

Whether or not Danielle's lack of follow-up care contributed to her extra swelling and pain is really immaterial.  The fact is, she defied her surgeon's instructions, and that's pretty troubling stuff.  Doctors don't issue follow-up care instructions because they are fun, they issue them because their education and experience has taught them that specific aftercare helps to speed healing and reduce pain.

Curious, I asked her the predictable question, "Why was it so important to you to go against what [the oral surgeon] told you?"

Her answer was equally predictable.  "I don't know," she replied.

More Thoughts on Amelia Rivera

As is usually the case in Internet stories that go viral, Amelia Rivera's case is somewhat more complicated what I first thought.  Apparently, her family plans to use a live donor that they will recruit, which makes the situation appear much different.

Still, there is the problem that adult kidneys cannot be used in small children, so Amelia's donor would have to be a child.  I think there are some serious ethical and moral considerations that come into play when one is considering harvesting a kidney from a live child.

Yahoo news reported the following AP copy:

The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics. For example, the blog notes that Chrissy Rivera told the hospital that "we plan on donating" the kidney because they come from a large family.

"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

Although the issues brought to light in yesterday's news coverage change the picture a little bit, I still stand by what I said the day before yesterday.

Regardless of whether or not the living donor is a child, there is still, of course the ethical questions that are raised in terms of resources.  Even if the donor is a relative and the family funds the procedure themselves, will Amelia's surgery, post-operative care, and lifelong maintenance prevent a healthier, and cognitively normal child from receiving care?

Should it even matter?

I don't know all the answers, and I'm actually glad that Amelia's story went viral, because these are questions that deserve to be asked of the public conscience.  Granted, these are issues that are debated by the highest level of religious leaders and ethicists, and there are no easy answers.

Once again, I am hugely grateful that this is a decision I don't have to make.

Thoughts on the Rationing of Healthcare

This post is about a very complex and emotional issue.  Before you leave a comment, please read my entire post with care.  I am not advocating for a particular outcome, so much as I am trying to recognize all the complex and varying viewpoints.

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?

Hell no.

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.