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

Elle23 · Jun 28, 2013

Does this child not qualify for more extensive nursing care than periodic home visits?

KCMnurse, BSN, MSN, RN · Jun 28, 2013

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?

Document everything! Sounds like parent/s may have learning disability or be in complete denial. If you're not successful with her maybe someone else could be? Sounds like they need a lot more than drop in supervision.

sharpeimom · Jun 28, 2013

This a long shot but I'm way out of my area of nursing. I can think of two different examples that occurred in this area that ended up

being handled in off-beat ways in order to accomplish anything.

#1 The second family my husband worked as a mentor with had a child with a gtube and her mom was barely literate and probably had

an IQ of about 60. When the nurse and social worker realized that nothing they said would make much of a difference in the girl being fed properly, they notified CYS, who were NOT much help. What the nurse and social worker finally devised:

They recorded every last detail of someone buying, doing the feed, etc. on VCR and gave it to the mother. They also

made an illustrated guide without words that showed the same thing. They also gave her a label from one of the cans

to show the sales person so she'd be sure she got the right formula. They showed her how to use a simple stove timer

so she could set it for the time of the next feeding. With lots of supervision and praise, it worked.

#2 In this case, the mom could have, but just didn't. My cousin was the nurse on the case. Notifying CYS changed absolutely

nothing! It was reported three times. Finally she called the national 800 number in the phone book. Whatever they said sure

lit a fire under the local agency.

Would either of these work?

allnurses Guide · Jun 28, 2013

How incredibly frustrating! None of the usual advice in such a case is applicable because the doctor, social worker and CPS are already involved . . .does he not qualify for shifts of skilled nursing because his main need would be to get his feedings as ordered which is normally a very straightforward process?

I think the focus needs to be on the mother's capacity to care for her child. If it takes hours to teach her to crush a pill then she probably has some potential diagnoses that would allow her to qualify for some assistance which would then help the little boy.

I like Sharpeimom's advice, though and would definitely give those approaches a try seeing that she seems to have little ability to retain the instructions you give her in the teaching sessions. Keep us updated though -- I do hope the family gets the help they need!

sharpeimom · Jun 28, 2013

I forgot one detail. In the first case, they rewarded the mom with lunches at the golden arches when she did it right every so many times.

ixchel · Jun 28, 2013

When I read this story, I read it from the point of view of a parent. With the assumption in mind that this might not be an issue of IQ, I wonder if this might be a loss of the perfect child "syndrome". Do they have other kids? If yes, how are they with them? I wonder if some intensive therapy for the parents might be helpful, to help them with their grief, if that's what this is. I can't imagine what they go through with a child with so many needs is very easy at all. Is there much of an opportunity for them to experience real joy with their child? Or is the child a constant burden for them? That feeling alone can crush a parent with guilt.

If its not IQ, consider this as a possibility. Maybe it will be your answer.

Jory, MSN, APRN, CNM · Jun 29, 2013

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.

I would VOLUNTARILY contact the board of nursing so you have a record that you have reported this over and over....that way if something comes back, they cannot blame you.

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

Because if they make an arrest, that becomes public information...CPS doesn't like that.

You are doing the right thing...good for you for taking a stand!!!!!!!!!!!!!!!!!!

KelRN215, BSN, RN · Jun 29, 2013

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.

Elle23 · Jun 29, 2013

I can imagine the frustration you feel. I am currently 3 months into my first private duty assigment, and the family is absolutely wonderful. I know I will not always have these picture-perfect cases, and will deal with issues like you are dealing with.

I can't believe the child doesn't qualify for private duty. I know of several children who qualify based solely on the need for GB feeds (though not full time...)

wooh, BSN, RN · Jun 30, 2013

If mom has cognitive issues, there are groups that work with such parents to help them with parenting skills, including special needs.

kit123 · Jun 30, 2013

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..