Friday, October 11, 2013

To Conserve or Not To Conserve; That Is the Question

They say that little children have little problems and big children have big problems. They also say that the only difference between men and boys is the price of their toys. That seems to be the case with our children. As they have grown up, we have encountered significant problems needing our assistance, perhaps far less frequently than the near-weekly emergencies in their youth (which is good for our sanity), but the problems are bigger and cost is higher.

In Tuesday's post on Doah, I mentioned that he is not conserved. Whether or not to conserve him (make ourselves his legal guardians or allow him his adult independence to the extent that he can manage it) has been a difficult question, one that was posed when he turned 18 and one that we have not yet answered even though Doah will be 30 in November. It is a significant decision in many ways:

(1) Once done, my understanding is that it cannot be undone unless something changes dramatically in his life, and I cannot imagine what that would be. To conserve him, we have to show that he is not mentally fit to take care of himself, and we can argue that in either direction.

(2) With an IQ score of 52, two points higher than "moron" (Who on earth thought up that label?), we could easily convince a judge that he is not capable of taking himself. However, he is able to take care of himself under most circumstances. We have worked hard to get him to that point. When a psychologist who did not know him recently interviewed him without conducting an IQ test, she listed "mild mental retardation" -- a label that would put him about 20 points higher than he really is. When HOPE volunteers worked with him years ago, I overheard one say to another, "This is probably the greatest delta below low potential and higher actuality than you will ever see." I am afraid that conserving Doah will undo some of this hard work and send him the message that we don't think he can take care of himself -- and will also create situations when city, state, and federal regulations will not allow him to take care of himself.

(3) On the attractive side of conservation is the fact that doctors will not be able to undertake treatment without our consent, and there is a possibility (we are checking this out) that he will be able to be carried on our insurance, which will allow him access to a PPO, rather than the state-provided MediCal doctor, who is often someone considered to be lesser talented than the private doctors. This benefit was particularly attractive to us this morning as we headed up to San Jose to talk to Doah's doctor.

We wanted answers:

1. Why did the emergency room pay no attention to the fact that I had told them that Doah reported vomiting blood, that he had severe side pain and the inability to urinate, and that he was running a fever. My concern was that the blood might indicate possible esophageal damage from 30 years of GERD due to an unrepaired/unrepairable hiatal hernia and that the combination of retention of urine and fever might mean a urinary tract infection. I was definitely not reassured when his group home monitor told me he had been sent home, with tylenol, on bed watch. How does tylenol help an infection?

2. In preparation for an appointment with his primary care physician which we requested as an immediate follow-up to the emergency room visit, I researched all the medications he has been taking under the oversight of the social worker who follows him in his group home. There were 15, some of them pretty severe and not at all related to any problems he has: medicine for epilepsy (he is not epileptic) and for bipolar disorder (he is not bipolar), among others. These had been prescribed by a psychiatrist. Others, mostly for the 63 allergies he has, made sense; those had been prescribed by the primary care physicial.

So, off we went this morning, with a bit of trepidation, to confront her about the quality of Doah's care. Although we should have been used to such confrontations, considering that I don't remember how many dozens such meetings we have had with the doctors in the past, we were nervous because few doctors accept MediCal, and without having access to any other insurance (What insurance company will insure, outside of a group plan, an individual with 18 birth defects and monthly medical follow-up needs? Just one of the difficulties of needing medical care in America...), if we were to tick off Doah's current doctor, she might decide not to keep him as a patient. Unless she were totally incompetent, she would be better than no doctor at all.

As it turned out, we were in for quite a surprise. Contrary to a number of our previous experiences, she turned out to be patient (with us), quite knowledgable, and committed to Doah. This was the first time we had met her because until we ran into this latest complication, we had thought that Doah's medical care was under control. And, for the most part, it apparently is. The doctor agreed with me that there are some pointed questions to be asked of the psychiatrist (Oh, I will do it! Just have to get that meeting set up!), but she reassured me that the emergency room team had taken the proper action and had indeed listened to my concerns. They had used an NG tube to find out what Doah could have been vomiting and found out that while it had the color of blood, it was not blood. They also confirmed that there was no urine infection before they sent him back home; their final concern and the reason they put him on bed watch was the fever. Whew! I should have retained my normal optimism, but with Doah's traumatic and dramatic history, I sometimes put aside my willing suspension of disbelief, to quote Aristotle's theory of poetics (and drama). The whole problem came from the fact that once the doctors learned that Doah was not conserved, they no longer felt constrained to let me know what was going on. After all, Doah could sign all the paperwork for himself. So, they never bothered to let me know what they had done -- something that would not have happened had Doah been conserved.

The primary care doctor ordered some additional tests to find out what had really sent Doah to the emergency room and what is really happening with his esophagus and hiatal hernia. Those will be done tomorrow, with the results in next week. So, maybe we don't have to conserve Doah after all, if he has a capable doctor. Nonetheless, we only had a say in his care today because she "allowed" it. The psychiatrist, with whom we will be speaking soon, may not allow it.

So, we still don't have an answer, but fortunately I don't have to have one right now. We are on track to better management of Doah's health.

In any event, Doah already has a conservator and a lawyer: God. That, in my book, is enough. I am sure God will lead us to an answer when and if an answer becomes necessary. In the interim, we trust God to take care of Doah -- and so does Doah.

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