Non-compliance/medical neglect in a child with an open case with protective services

Specialties Pediatric

Published

I am at my absolute wits end with one of my cases. (I am a pedi home health nurse.)

This child is very complex, developmentally delayed, failure to thrive, G-tube dependent, aspiration, seizure disorder, chronic respiratory disease, etc. He was originally referred to my agency over a year ago for G-tube teaching. G-tube teaching kids are usually incredibly straight forward, get a handful of visits and are then discharged as long as they are gaining weight and their parents are able to manage their care. This child is still on service a year later because neither criteria has been met. He has had poor weight gain overall with periods of weight loss/gain. Every time he loses weight it somehow comes out that his mom isn't feeding him appropriately. He is on very straightforward G-tube feeds that any other parent I've ever dealt with in six years of being a pediatric nurse could manage. Three bolus feeds per day and continuous overnight feeds. Every time the MD changes his feed schedule, it takes me weeks to months to get the mother to understand how to do it. For example, the most recent changes involved changing his overnight feeds from 500 mL at 50 mL/hr to 600 mL at 60 mL/hr. Mother first thought that if she ran the feeds at 60 mL/hr but still set the volume at 500 that that would give him more. I finally got her to understand that running the feeds faster doesn't do anything. Then it took me at least a month to get her to understand that in order to give him 600 mL she needs to put more than two 250 mL cans of formula in the bag. She still doesn't do that consistently. I am constantly in touch with his doctor, social worker and worker with the state.

The bottom line is really that this family lacks the ability to care for a child this complex- his medical team and I are completely on the same page about that. BUT, the state is completely dragging its heels. We had a large team meeting over a month ago with all of his providers-MD, Social Worker, me, CPS worker and supervisor, Early Intervention providers and the workers who follow the mother's case. It seemed like it was a productive meeting but absolutely no progress has been made in the past month.

Two weeks ago, I was with him for three days teaching the mother how to crush a pill. I'm still not convinced that she can do that. This week, I went to see him on Wednesday and she hadn't given him any of his meds since Sunday because she "forgot" them at her sister's house. He is on critical medications- seizure meds and electrolyte supplements that it NOT ok for them to just "forget". Mom promised she would have them by day's end and we agreed that I would come back out today to check on the med situation. I tried to call her at least 10 times yesterday on 4 different phone numbers with no success. I was finally able to reach the father today and he confirmed that mom and the child were with him and that it was ok to come to his house. Less than 5 minutes after I spoke with him, the mother began calling me. I got 3 missed calls and a text message from her while I was with another patient. She then proceeded to tell me that I didn't need to come today because I just saw the child on Wednesday and that I couldn't see him until Wednesday because "that's when they'll be home."

There is not one single doubt in my mind that the reason that she didn't want me to see him today was because she still doesn't have his medication and has still not been giving it to him. She claims that she "ran out" of his seizure medication this morning because the pharmacy "didn't give her enough" the last time. This is untrue as I have seen this prescription bottle at least half a dozen times in the past four weeks. She is not intelligent enough to realize that I will see the date the prescription was filled on the bottle when I go next week.

I just do NOT know what to do here. I updated his doctor, social worker, CPS worker and supervisor today immediately after this happened but what do you do when the state is already involved and they just won't act?

Specializes in Med/Surg & Hospice & Dialysis.

I'm not in peds or home health, but can the MD not order drug levels?

Thank you all for your responses.

The child does not qualify for Private Duty Nursing. We referred him a few weeks back and they screened him out in one phone call. They said that he doesn't have 2 continuous hours of skilled nursing need and that parental incompetence does not come into consideration when determining a child's eligibility. The expectation with Private Duty Nursing, of course, is that the parents have all the skills to care for the child at home because it is not 24/7 and the parents are the ones with the ultimate 24/7 responsibility for the child.

The mom does have significant cognitive limitations though I am not sure what her official diagnosis is. Her mother appears to have the same congnitive limitations and she has a brother who is as compromised as her child. She has her own services through the state as well as through a private agency that serves adults with mental illness and developmental disabilities. Her workers attended the meeting we held last month and it was quite insightful to hear their side… she needs a worker to come to her house to physically bring her grocery shopping despite the fact that she lives around the corner from a grocery store and a family member has to completely manage all of her finances, collect her SSDI and pay all of her bills. Given that she cannot manage these basic needs for herself, HOW can we reasonably expect her to care for a child as compromised as her son is?

I totally agree that they need a lot more than drop in supervision but, given that he doesn't qualify for Private Duty Nursing, the only way to meet that would be medical foster care or pediatric long term care. The family won't consent to either so the state would need to take custody of the child first. The state seems minimally interested in this case as they were talking recently about how they were hoping to close the case. Clearly that can't be done.

Jory, that is ultimately what it comes down to. She is eventually going to kill this child. I spoke to a Social Worker I know personally who is not involved in this case at all and she suggested basically escalating the CPS chain of command. The sad thing is that part of me feels like it would be a good thing if he seized due to this medication holiday that mom has given him because the hospital would check labs and find that his drug levels are non-detectable.. that would lead to them filing a new report with the state and would provide concrete data that she is hurting her son.

I have documented absolutely everything in detail.

On the first part....you are 100% correct and I am surprised that social services doesn't remove the child (as sad as it is) to a place where he can be cared for. I feel bad for these women, but this is why (as controversial as it is) that state mandated birth control, sterilization, something should be used, because you run the risk of these women giving birth to a child that they cannot take care of or inheriting a genetic disorder that leaves the state to take care of them.

On the second part...I would find any reason I could to have this child admitted to the hospital...any reason at all, for the reasons you just described.

I am an FNP who was also a dietitian with an MPH. I feel broken hearted for you because FTT

is frequently a problem with social neglect on the part of the mother.. While you cannot

breach confidentiality, I do understand why reporting now seems to be imminent. Wierd

as it may sound, would a male visitor help or a visitor with an older woman that the mother may

feel more intimidated by. I don't want to hurt her but utilize every bit of social policing we can muster

Moreover would you consider colored water in a pitcher with the 600 cc marked off. she can pour

the total volume of feed in a second clean pitcher and compare the volume..

How is reporting breaching confidentiality??????

Specializes in NICU, PICU, PACU.

We see this so often where I work...why? Because we lack anywhere to send these kids, they aren't sick enough to be in the hospital, they don't qualify for the children's rehab, all the foster famillies for medically fragile kids are in use, all the children's extended care facilities are full and hours away. So, they end up with these families, who we are sadly setting up to fail. Eventually they end up back on comp care and CPS is involved, but once again, there is no where to send the child. It is a vicious cycle. All you can do is teach, try each and document.

On the first part....you are 100% correct and I am surprised that social services doesn't remove the child (as sad as it is) to a place where he can be cared for. I feel bad for these women, but this is why (as controversial as it is) that state mandated birth control, sterilization, something should be used, because you run the risk of these women giving birth to a child that they cannot take care of or inheriting a genetic disorder that leaves the state to take care of them.

Plenty of "normal" IQ women can't take care of their special needs kid. Should they also be sterilized? I find people that believe in mandated sterilization not compassionate enough to properly raise a child.

Plenty of "normal" IQ women can't take care of their special needs kid. Should they also be sterilized? I find people that believe in mandated sterilization not compassionate enough to properly raise a child.

First of all, there is no need to be snippy...if you are going to debate, then keep it on a professional level.

You are obviously unaware of a time here in the United States where this was a common practice during the 30's and 40's, on into the 50's where for women that were diagnosed with a mental defect, significant mental illness, etc...would have their tubes tied or even a hysterectomy. I do know that even today, some parents of these women will have their tubes tied as teenagers, because they are vulnerable to sexual advances if unsupervised and do not have the mental capacity to put sex and pregnancy together. I have a close friend who has a daughter with Angelman's Syndrome and she had a hysterectomy at age 14...b/c her menstrual cycles were difficult to manage.

So, if you knew a little more about medical practices throughout US History, you would know where my comment came from, it would have made more sense to you.

Apparently you think that a person that is mentally too incapacitated to take care of a child to the point that it could lead to that child's death is more compassionate than taking surgical steps to prevent someone having a baby that they cannot take care of.

You and I are obviously on the opposite sides of the moral scale....as I firmly believe that babies are not dolls and women who function on the mental level of a child shouldn't be having one...because REAL babies feel pain, discomfort and really die.

I'm sorry if that isn't important to you.

First of all, there is no need to be snippy...if you are going to debate, then keep it on a professional level.

You are obviously unaware of a time here in the United States where this was a common practice during the 30's and 40's, on into the 50's where for women that were diagnosed with a mental defect, significant mental illness, etc...would have their tubes tied or even a hysterectomy.

And you are obviously unaware that was declared unconstitutional as violating those women's fundamental liberty interests.

Specializes in critical care.

And you are obviously unaware that was declared unconstitutional as violating those women's fundamental liberty interests.

And what a slippery slope that would present. Ideally, I can understand the idea that best interests are being considered, but ultimately, where does the line get drawn? Who draws it? Legislators? Aren't they sticking their noses in our reproductive care enough? Doctors? Is it fair to be subjected to the morals of doctors? (Not saying doctors lack morality, mind you, but they may not have the same ideas as the patient or the patient's family would.) CPS? Does that government agency always make great decisions?

No, it's not ideal or even healthy to have an incompetent or genetically compromised person bring a child they can't care for into the world. It's tragic, honestly. We definitely do not live in a world that is fair.

And you are obviously unaware that was declared unconstitutional as violating those women's fundamental liberty interests.

Apparently not as illegal as you think it is because I know of more than one parent that has done it.

THE STATE cannot make that decision...big difference.

Please copy and paste where I said otherwise. Your lack of life experience is showing.

The state can't. And YOU can't make that decision for anyone you aren't the guardian of. Thankfully. At least for those of us that weren't fond of the world Hitler dreamed of.

Your arrogance is showing.

And how is your dream of forced sterilization helping the child in OP's situation?

I would tell the CPS worker point blank:

This child is being medically neglected...this child is going to slowly die if it is left in her care...if you are not going to do anything about it, then we need to elevate this to the next level of management.

One, the child is going to slowly die no matter how good of care he gets. (Thank goodness, I'm sure you wouldn't want him breeding.) Two, child protective services doesn't work the way you seem to think it works. Keeping the family intact. THAT is the goal. Which could be met with education. She was able to do 500 at 50. She can do 600 at 60. It will take more education. It will be frustrating. But it can be done. There are actually groups that specialize in doing just that.

I would also speak with the police...they can make the SOLE DECISION if this level of neglect warrants criminal action.

Actually, that would be the district attorney. And not understanding how to use a feeding tube? One, not criminal neglect. Two, how on earth is putting mom in jail going to fix this situation? Oh yeah, the threat of publicity. Because putting a developmentally delayed woman in jail is going to look good for them?

With all your life experience, I'd think you'd understand a bit better how the government actually works. Even someone as naive as I am understands getting in a peeing contest with a government agency isn't going to make them do what I want.

One, the child is going to slowly die no matter how good of care he gets. (Thank goodness, I'm sure you wouldn't want him breeding.) Two, child protective services doesn't work the way you seem to think it works. Keeping the family intact. THAT is the goal. Which could be met with education. She was able to do 500 at 50. She can do 600 at 60. It will take more education. It will be frustrating. But it can be done. There are actually groups that specialize in doing just that.

Actually, that would be the district attorney. And not understanding how to use a feeding tube? One, not criminal neglect. Two, how on earth is putting mom in jail going to fix this situation? Oh yeah, the threat of publicity. Because putting a developmentally delayed woman in jail is going to look good for them?

With all your life experience, I'd think you'd understand a bit better how the government actually works. Even someone as naive as I am understands getting in a peeing contest with a government agency isn't going to make them do what I want.

Wooh, you are wrong on so many levels of your posts, I could write a paper on it.

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