Any experience with making a formal complaint to the Ombudsman while the patient still lives at the facility? My loved one was bedridden on a feeding tube and was suddenly sent to the hospital for severe dehydration. 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. His bloodwork showed an imbalance in his sodium. The nursing home adamantly insists he has been given excellent care and received all his feedings and water as directed. The hospital refused to address the issue with the nursing home and sent him back there. I tried to get him sent elsewhere but no one would take him. The dehydration was caught from a routine blood test. He was also lethargic. The doctors said if it went any longer his brain would have swollen. Does anyone know any medical reason that could cause severe dehydration? I'm afraid this is going to happen again and next time the outcome could be brain swelling and death. Also I am afraid that if I report them they might refuse to take him back next time he goes to the hospital for any reason. They could also retaliate with giving him less care. I can't sleep nights worrying.
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.
As for contacting the Ombudsman, what do you have to lose? I wish I'd done it! I feel guilty because I didn't. I didn't truly know that was an option. You're already walking in a mine field, so what the heck? Give it everything you've got. I don't think the care could be any worse than what you've described. Get your LO's records first as ammunition, if you haven't already. You don't need a reason. You can do that in one day simply by going to the hospital and asking. Encephalopathy (brain swelling) is serious, no cure, and will cause the patient to act out and become combative, among other things. Patient will get thrown out for bad behavior because they have "brain snaps". When you move him (and you WILL find a place--just keep looking--and I know it's a pain), new facility administrator might possibly tell you, "Previous facility has already called and said the family is the problem, not the patient". Baloney. Because you stood up for negligence and maltreatment of your LO? I feel for you. I truly do. It's a tough situation for YOU and your LO. I wish you the very best. Keep the faith!
On point
First: in my experience as an administrator it is not likely that the ordered amount of water isn't given when ordered. The process is probably performed at 8a, 12p, 4p and 8a when the traditional medication pass takes place.
The very first thing I see is that 8 ounces every 4 hours is only half of the amount of water that a senior needs on a daily basis. The average senior should consume 8 ounces of water 8 times per day. Regardless of mobility. Seniors typically take quite a few medications, many of which may be designed to keep fluid build up from happening. These will be your cardiac medications, Lasix for edema, etc. If your loved ones is only taking half of the fluid intake and coupled with medications that encourage fluid loss - the result can be dehydration in a matter of days. The good news is the fix is simple. You can call her physician, or leave a message with the facility administrator to communicate the issue to the facility physician. (I always communicate every detail with my families as their single point of contact) The doctor may want to add the water a little at a time if cardiac issues or edema is present. Be sure the order clearly sets the exact amount of fluids to be given every 4 hours. Do not agree to have more than the 4 ounces given - champion having the fluids given every four hours so that your loved one is being continually replenished and doesn't go more than 8 hours (sleep time) between fluid intake. Ask if a routine lab draw is advised to assess for dehydration. Probably not, but won't hurt to ask as a second layer of defense. It may be time to discuss hospice care, which gives you all kinds of backup! Weekly nurse assessments, extra eyes via a bath aid, pays for certain medications and supplies like incontinence products and bed pads. Your loved one doesn't need to be actively dying to qualify, and it is covered in full by Medicare. No extra expense to you. Those are, of course, highly personal decisions for you and your loved ones doctor to discuss.
Other things to keep an eye on is the temperature in the room being comfortable but not so warm that your family member is losing fluid from sweating or being too hot. I can bet your loved one likes to be toasty but maybe it's a bit too toasty.
Reven medication list with the physician to ensure that there isn't some weird combination of medications that is causing dehydration. Sometimes simply changing the time of day a medication is given works wonders!
I encourage my families to communicate every issue, question or concern with me. As the administrator, my license makes me personally accountable for every life entrusted to me. It also makes it easier on the family and easier on me. The family doesn't have to chase down multiple people to communicate with every department head for various things. The administrator ultimately supervises every department and being in the know gives you a second set of eyes when you're not there! And an administrator who has seen how worried you are, is a powerful ally!
The nurse may not have questioned the decreased intake if cardiac issues or edema. Fluid restrictions are common in those instances.
Hope this helps! Let us know how it goes! Good luck and god bless you for being the caregiver! There's a special place in heaven for you guys!
Laura
Physicians and nurses (among others) are mandated to report to the appropriate agency if they have reason to believe an elder was abused or neglected. Did any of them report the nursing home.
When I worked for a regulatory agency, I received a report from a hospital social worker that a nursing home resident was so severely dehydrated that the diagnosing physician was actually shaking from the upset he felt at the patient's condition on admission. Yet, neither he nor any of the physicians who treated her in the hospital included dehydration as a diagnosis in her medical record.
All this to say, there is not always an easy explanation for a person's condition. In addition, tube feedings do not always provide a benefit as the body sometimes cannot utilize the nutrients.
The retaliation was against me for filing multiple complaints not only with the local ombudsman, but with state agencies. My complaints resulted in multiple "tags" for the nursing home and frequent visits from the State to ensure not only the safety of my mother, but the safety of other residents. They did receive lower ratings by CMS -- granted I was not the only one filing complaints.
The nightmare I had to go thru as a result of her "eviction" was horrendous. I escalated to state congressional leaders to every person/agency I could think of to help her with no avail. The fact that NHs can do this is criminal, even worse to do so in the midst of a pandemic. Looking back, I regret the way I voiced my complaint regarding neglect issues, but I don't regret filing the complaints and escalating the multiple incidents. It saved her life.
What is tragic is that I had to choose the worse of the worst NHs to place her after they dumped her at the hospital. Very few NHs were accepting new admits at the time. I had to send her to a place with horrible ratings and several neglect lawsuits. Even worse I could not tour the facility, had to move her to a place without knowing what it looked like inside, whether it was clean and whether it smelled. It is a dilapidated building, with severe staff shortages (one CNA and one LPN for 30-35 residents), where I have learned there is a high usage of agency staff, where the exchange of care information is poor, where meds are often not given, and where the phone goes unanswered for hours -- even after a recent Covid outbreak where my nerves were off the chart.
I will summarize by saying, you can contact the Ombudsman, but do it gently, and not often, and try to limit the number of complaints you file with your state agencies. If you do, be prepared for the possibility of the NH retaliating by shipping your loved one off to the hospital and then refusing readmittance. It is my experience that the ombudsman is a negotiator and serves as a liaision between family members, residents, and nursing homes. They are powerless in preventing nursing home evictions despite what they tell you. It is a well known fact that nursing homes discharge residents involuntarily, and you have little or no recourse. Ombudsman also cannot stop staff from retailiating (by refusing to provide care or neglecting your loved one). Staff behavior is covert, and they will deny it if challenged, especially now in the midst of this pandemic.
In my state ombudsman cannot visit nursing homes except for severe cases of neglect, and even then, they are in and out quickly. They have little if any line of vision into what is now occurring in nursing homes and the amount of support they can provide is limited.
Hindsight says I should have moved my mother long before the Covid outbreak and at the first stage of reporting multiple issues of neglect. The problems with long term care occurred long before the pandemic. My heart goes out to you.