Should I report the nursing home? I'm afraid of retaliation if I do. Anybody else have experience with making a formal complaint?

Dear NoveAndrews,
This is a very complicate situation. Unfortunately the giving of enteral supplements and fluids via feeding tubes does not guarantee that the person is going to receive adequate nutrition or hydration for his/her current medical conditions. There are so many factors that can influence the amount of fluids in a person’s body and the possibility of that person could become dehydrated. As previously mentioned by Countrymouse, “There can be all sorts of medical reasons for fluids' not being absorbed and processed properly in the body”. 

How long has your LO had the feeding tube and what was the reason for the feeding tube? What other medical problems/illness besides dementia/Alzheimer’s does your LO have? They can influence how his body processes nutrients and fluids via the feeding tube? How long did your LO have diarrhea prior to his hospitalization? 

While diarrhea is one of the “side effects” of tube feedings, it can be managed with anti-diarrhea medications or a change in the brand of enteral formula. Diarrhea can cause the loss of a large amount of fluids in a short period of time and sometimes the person becomes dehydrated from the diarrhea very quickly.

Was your LO receiving the enteral formula (Ensure/Boost/?) continuously or every 4 hours as a bolus? Often 4 ounces of water is given before and after each bolus of formula or the giving of medications. 

Since I do not have your LO’s medical records in front of me, it is difficult for me to give you a definitive answer to your question: “Does anyone know any medical reason that could cause severe dehydration (in my LO)?”

If you are not getting the answers that you “want” from the DON and Charge Nurse, it might be time to talk to the Long Term Care Ombudsman. The thing that you need to keep in mind as you go forward is that you might get answers that you “don’t want”.
 Your LO is elderly (age 88), his body is most likely beginning to “malfunction” or not be able to process the enteral formula like he should or he used to. The tube feedings will keep your LO alive but they cannot “improve” your LO’s health, just maintain it. If and when your LO’s body starts to quit functioning properly, there is not much you can do, except to provide him with love and comfort during his last days of life. 

Although you may not want to do this, you should look into “Palliative Care” or “Hospice Care” for your LO. 

Also, it is not easy to have a feeding tube (or enteral feedings) discontinued. Many facilities require that a formal request be made to the Healthcare provider’s “Ethics Board” and the Ethics Board makes the decision whether the feeding tube (and/or the enteral feedings) will be discontinued or not.

You have a lot of important decisions ahead regarding your LO. Please make them carefully and intelligently with your head and not with your heart as our hearts want our Loved Ones to live FOREVER. {{{HUGS}}}

Administrators will tell you whatever suits their purpose, true or not. Never depend upon a nursing home to follow doctors' orders or even to do their jobs well. The workers are mostly uneducated, low paid, and with too many patients to care (and I use that word loosely) for. They know they are expendable and there is no future in it so they become calloused or simply just don't care. Many of us don't have the physical or monetary means to care for a loved one at home so we are stuck with this unworkable system. That said, all you can do is find the best (again, word used loosely) of the worst nursing homes around, and stay on top of things every single day. Visit every day you can, unannounced, check the dates on juice boxes, cleanliness of the room and linens, odors, bathrooms, IVs, etc. and always check the med records - know what meds they are being given, when, and WHY. Stay in touch with the doctor. Take photos. Show up at feeding times to see what they are being given to eat and if anyone is feeding or supervising. Talk to some of the residents, hear what they are saying. Many people are being duped into thinking a place is nice, but that's never entirely true. After I complained about dehydration, the nursing home insisted it was not true. I have photos of the same juice boxes that were there for over a week on my dad's table, spoiled. He was so weak he was unable to even lift them to drink, but the nursing home said they did their job. They left food but he was not able to lift a spoon, oh well, nobody had time to feed him, and they'd take it away later. But they seemed so nice.....

Yes. My niece’s mother in law was being ejected from a nursing home before she was ready because her private insurance had been exhausted. There was no plan of care for a safe discharge. They were planning to send her home knowing that she could not possibly care for herself. My niece called the Florida Ombudsman and obtained a caseworker. The nursing home backed down. Then, because I have professional knowledge of how nursing homes are supposed to operate, I accompanied my niece’s husband to an appointment to discuss her discharge plan with the Nursing Home Administrator and DON. During the discussion, I cited several rules governing nursing home discharge planning. I made it clear that there was going to be trouble if they did not give my niece’s family time to find a Medicaid nursing home bed for her. They ended up cooperating fully during the entire process which took a couple of months and they worked out a repayment plan with the family.

The last thing nursing homes want is to get on the regulator’s radar. These places are inherently unsafe. Because of federal and state regulations, they are lopsidedly staffed with professionals who spend all day behind a computer charting and documenting, but they do not see the residents except in the halls or on “rounds.” Only the poor overworked direct care aides have any meaningful patient interface. These are the people you want on your side. Compliment them and bring them treats and small gifts. Ask about their families and children. Get to know them. Gain their trust. If they trust your discretion, they will tell you if there are care issues with your dad. Many aides really do care about the patients much more than higher level credentialed staff who are not doing the real work of caring for patients day to day. They are terribly underpaid, deprived of benefits, shorted full time hours to get around wage and hour rules, and generally abused and taken advantage of themselves. Make allies out of the people that are hands on with your dad. If your dad is able, he should make himself as pleasant as possible to the direct care staff too. Every nursing home plays favorites based upon how pleasant or unpleasant residents are and how often their families visit. The more visitors the resident has, the better. Pity the poor resident who has no one from the outside looking after his or her interests and who receives no inquiries or visitors.

Bringing in an ombudsman usually invites substantially better care, not retaliation. Once you make contact with the ombudsman and understand how their system operates, you will realize why nursing homes do not want this kind of trouble. You can keep your caseworker informed of any retaliatory actions the nursing home tries to take against you or your dad. Also be aware, they cannot just discharge him without a discharge plan that is commensurate with his medical needs and level of care. If you are able to visit, you should step up your visitation and make your visits as random as possible. If not, call frequently to ask if there are any signs of renewed dehydration and stay in touch with the social worker about your concerns regarding his care. Make allies out of everyone you can.

All the same, I’d start looking for another place for your dad. The hospital needs nursing home placement beds themselves and weren’t willing to rock the boat for your dad. They should have called Adult Protective Services if they really thought your dad was being neglected. They did nothing and they are just as culpable as the nursing home because they sent him back there without addressing any of his care issues.

Nursing home care in the US is a disgraceful brew of profiteering, evasion of responsibility, duplicity, exploitation of direct care workers and marginal care. Put those nightmares to work by becoming an aggressive advocate for your dad. It is the only way to protect him.

As a long term care ombudsman for many years I see several issues. Firstly, the facility must accommodate the clinical needs of the resident. The 'accommodation of needs' is a critical element and they must do this under CMS/Medicare/ Medicaid or transfer the person to a facility that can accommodate those needs. Secondly, there can be no retaliation ever over an issue raised with a LTC ombudsman. I constantly verify as do my colleagues and I have only ever had one instance and that resulted in the dismissal to the aide involved. There is zero tolerance for retaliation. If I find a resident who is not getting the care that is appropriate to their needs I consult with my contact person who then makes the changes necessary. I follow up to ensure changes happen and the resident can call me if there are any issues between my follow-ups. I urge you to contact the ombudsman.

"The doctors at the hospital said he couldn't have been getting his flushes of about 8 ounces every 4 hours because he was down roughly 7 liters of fluid."

The doctors know.

Yes, I would call the Ombudsman. Do not worry about any retaliation.

This is just too big a risk to not say anything.

Someone needs to know about this. Don't be afraid to report it.

I am surprised the doctor said this.
An imbalance in sodium could severely change how the body handles fluids. As a matter of fact it would HAVE TO. Either in terms of retaining too much fluid in the wrong places or in terms of losing fluid from the body due to sodium imbalance.
The patient could also be on diuretics that were removing fluids too quickly. I wonder how often this doctor was doing tests for electrolyte balance, which is CRUCIAL in the handling of fluids. That is a question you should ask the doctor. MANY medical conditions as well as electrolyte imbalances cause dehydration, but the most common culprit may be medications, diuretics.
Yes, you already identified a problem. Especially if your complaint has no basis, the home may refuse to accept this patient back in their care. Especially if they are a good facility delivering quality care.
In a fragile elder ANYTHING can happen and it can happen quickly. I would ask this doctor first of all "How often were you checking on the electrolyte balance? Is my elder on diuretics" Is there a medical condition that may have caused this".
I will be frank with you; I am speaking as a nurse; it would be VERY unusual for any personnel not to flush thoroughly because it will cause them problems they do not want with clogging. And I will be so frank as to tell you that people treat doctors as gods. They do not question them.
You are now speaking to us about a very fragile elder who may suffer any number of complications, and who may die as a result of any one of them very quickly and very easily. I would take great care with accusations. I would ask honest heartfelt questions as to what may have happened before calling in someone who is unlikely to be able to PROVE anything here. They will, of course, say that they flushed. How would you prove otherwise?
You should share immediately with the administrator what you were told, and you should report it in writing as "I was told............" whatever else you do.
By the way, one of the most common things doctors do is turn drama-queen over your personal current bout of anything. As in "If we had not got that appendix RIGHT then you would have died". As in "You're very lucky you came to me when you did because you would have lost your leg" (foot, ears, eyes, head). If I had one cent for every time I heard a doctor proclaim this I would be wealthy.
Not that I don't love doctors. Not that they don't often perform miracles. But that I know them to be very human, and to sometimes suffer from the god complex.

On the “no one else would take him”, do you have any idea if the discharge planner at the hospital actively looked for other NH’s to discharge him to? & if so, which ones did they contact and what were the reasons as to why other NH could not take him?

I’d suggest that you look at this aspect carefully..... if it was totally that the discharge planner called only 2 NH and they were at full occupancy so they couldn’t take him or anyone else, that’s a different situation than if the discharge planner contacted 6 NH, all of which had open beds but none of them would take in a new resident on a feeding tube/ enteral feeding needs as they view it as speciality care that they do not provide.
I’d try to evaluate this before you do a formal documented Ombudsman complaint to if there are truly other LTC facility options for him.

It may not be that the Nh would retaliate against him, but more that he needs a higher level of care than a standard skilled nursing care facility is set up to do. A NH can always do a “30 Day Notice” on a resident and believe me they can figure out something to be documented in his chart to show that his needs are beyond what they routinely do. If this place is willing to take him back & there flat are not other options, you once have to work with them.

I’m with the others in that you first need to do a meeting with the DON, SW and the RN who is the main one for him M-F, to see what can be done before taking it to an ombudsman filing.

As an aside, Lots of places try to do whatever to avoid having feeding tube/ enteral patients, just like they avoid residents needing 24/7 respirator care & oversight as it more speciality care than standard skilled nursing care. These take oodles more staff & resources and if they are on Medicaid, the daily room & board costs paid are pretty fixed... so having beds filled with a more easy care residents will be what they try to get. Yes, it’s unfair but it is what it is.

You may want to see if he can get a hospice consultation done. I’d bring this up at the DON meeting. If he can qualify for hospice, it will bring in extra hands to help in his care at the NH. My mom was on hospice 18 long long months and the regular Nh staff worked in tandem with the 2-3 day a week hospice person to do care; mom was lots cleaner, neater, calmer, less pain, “fresh” by having hospice help added atop the NH care.

I filed a complaint against my moms 1st NH and did it the month she left. Had the new & much better NH all set for her to move & transfer over to. My complaint was related to federal Stark Law issues (double billing or steering services to subs or companies the NH owner or their spouse own or have % interest in). I did it directly into CMS (Center of Medicare & Medicaid) complaints / compliance system. It could go into CMS as Medicare was paying so under CMS Stark Law purview. And it also was cc’d as its own complaint to State Ombudsman program, which for TX is done through the Area on Aging Dept within your regional Council of Governments (COG). I had to provide documentation for the items I felt were sketchy. If my experience is any indication of what’s needed, You will need to have solid documentation to submit, like statements in writing from the MD’s who were his hospitalists as to what his incoming was for his dehydration, condition of tubes, etc were at initially and why it showed neglect. It cannot be just what you were told; has to have documentation.

I had to report neglect and poor care on the part of one night caregiver while my dad was in MC facility. The guy got uglier with Dad and I went and raised holy h*ll. He was fired! We can’t put up with nonsense that’s detrimental to our LO.

Report it. Sodium is a critical issue that can result in seizures, brain damage and death. Document everything with email and/or calendar events. Tell the ombudsman your fear of retaliation and preference of another facility if you feel that strongly about it.
Talk to the dr who treats him at the facility and request regular monitoring for his fluid levels. In addition to sodium, there can be potassium and magnesium balances that can also be quite serious. The follow up by requesting copies of medicines and tests to ensure they are paying closer attention.
Even after telling a facility to check my mom for 4 days, they didn't do it. By 4th day we had a real nasty conversation and they did the test in the am. They got results back before noon with timestamp and notes of STAT to get her to emergency room due to critical level. Lab even had a note on the report that they called and talked to nurse so-and-so to give the info PLUS faxed it to facility. In spite of all that, they waited until after 7pm to call an ambulance. The ER doctor said they could not believe she had not had any seizures and was still awake. Of course, there may have been seizures we were never told about and not documented in the rehab records. We also found out that the same night they sent her to ER, they packed up all of her belongings and put them in a closet for us to pick up. Will always wonder if they assumed she was going to pass based on what the lab result was.
The reason for her dehydration was sedating her, even after being told to stop with the narcotics (she gets severely constipated, major fall risk, and cannot communicate when taking narcotics). They slapped a diaper on her upon arrival and kept her knocked out. A cup was for her to get her own fluids - which didn't happen (cup always the same) and food trays not being eaten because she could not stay awake long enough to eat or see the tray was there. Pretty much she was out of sight, out of mind, and getting very little care and not asking for any care or help. Eases the workload on the staff. Records showed her doing therapy for several hours each day - observation by visitors showed her slumped in a wheelchair sitting in the PT room.

My question is, who thought a feeding tube was a good thing for an 88 year old suffering from a Dementia? Is it permanent? How far into the Dementia journey is he? Does he have a living will or a medical POA in place? My Moms medical POA was written no feeding tubes or extreme measures.

None of us want to lose a LO and we do what we can to keep them with us. But there comes a time when we need to look at the quality of life. At 88 what quality of life does he have. He has a feeding tube keeping him alive and his brain is dying. I may get Hospice to evaluate the situation. You don't have to except them but an eval may help you make some decisions.

Alva hasn't chimed in yet. She is a retired nurse. She can answer ur question about dehydration. She is on Cal time so just getting up.