Are resources and advocates available to help my elderly mother navigate healthcare?

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for my very ill father? I live 2.5 hours away. My father has been "kicked out" of the hospital very prematurely and my mom is struggling. He has some in-home help, but he really needs 24/7 rehab, which was denied. He is 77, emaciated and recuperating from horrendous neck surgery. He doesn't/cannot eat due to previous esophageal scarring from previous treatment of cancer. Needs feeding tube. PT person in hospital suggested that since he can "walk" he can go home. The family is astounded with this. We do not know the system well enough to fight for better care. Can you help!!

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GardenArtist.

Peculiar ideas, maybe:}, but I speak from personal experience. What you describe is how the hospital my mom was at used to be, this before they were sold to the 2nd ranked hospital in the country, Cleveland Clinic. They have gone down since. In short, there are more visiting doctors/specialists, who rent office space to see patients, the morgue that was on the 9th floor was itself converted into a small hospital, Grace. I stand by my comment, because what my mom died from, some family members have sued about. They lesson their liability by getting the patient discharged as soon as possible. Medicare discharged too soon, yes, received that form, 2 weeks after my mom passed.

To answer your question, definitely not in medical field and I don't watch over others either. I work with computers, which I will be starting back up again, since mom has passed.
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Llavelle, you have a good attitude, looking forward rather than back.

I do think a more interested PCP would be helpful. If you can find a geriatrician, that could be even better.

I wish you success and a good bit of luck in moving forward with your family.
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I would definitely persuade you to accompany him along with your Mother, back to the hospital ER, who discharged him. Tell them your concerns that he is "failing to thrive" postoperatively, that you are concerned he was discharged too soon, and that your Mom is unable to care for him, until he is stronger, and until she is mor comfortable with his feeding tube. Down the road after he recovers from this latest surgery and the current post op issues at hand, and IF hs improves significantly, I would suggest that you ask whether or not he might undergo a procedure to stretch (or dialate) his esophagus, to make eating and swallowing more comfortable, normally done under light sedation during a endoscopy procedure, or has he been on tube feeding for a while now. That would be a question for his GI or Oncologist Drs. This is a real pickle, and I hope you are able to go and help your Mom, navigate this urgent problem in person, as I'm sure she needs you there with her right now. Take care!
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I really appreciate everyone's comments so far. One of the problems is that his Primary Care Physician has been less than interested/responsive. Regarding the cancer, it has been ruled out...collateral damage is part of the reason for the neck issues, as well as an infection that stayed in his system too long last year (thank you apathetic PCP). My main concern at this point is getting him back to 24/7 care, which seems an uphill battle. Thanks everyone so much.
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Zytrhr, you have some peculiar ideas. The hospital has liability if it discharges someone too soon. Hospitals already have liability for extensive ranges of care, as do their individual personnel.

It's unfortunate you don't have medical people in your circle of friends and family who can share with you the high concern they do have, the intensive training they undergo, the high levels of standards and reporting, and other issues they face while caring for people, including many such as people with substance abuse who don't take care of themselves.

BTW, what do YOU do for a living? I'm curious; your positions are often strong and strident. I can't help wondering what field or career you're in, and what level of responsibility you have to your clients.
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Your dad was discharged early, because the hospital did not want to be responsible if something bad happened to him, in other words, they are covering their butts.
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I just recalled reading about another source, something like a caregiving coordinator. Apparently these folks act as a central point in coordinating care, navigating the sometimes labyrinthine maze of medical requirements.

Did some quick searches; check out this hits; they may help, as may a "Geratric Care Coordinator".

https://www.agingcare.com/search.aspx?searchterm=geriatric+care+managers

I could only find articles, no questions, but I do recall an occasional discussion of this resource.
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There are a lot of issues here but I'm only going to address a few issues, with which I've had experience as well.

1. Assuming your father has Medicare, he should have been given on admission a notice of his Medicare rights of appeal to challenge a discharge. That's the responsibility of the hospital.

When your parents were notified of his discharge, that would have been the time to appeal, via phone. It's probably too late now, but keep that in mind as I suspect with his weakness he'll be in the hospital again shortly.

2. The decision to discharge is made by the attending physician. If you don't have one with hospital privileges at that particular hospital, one will be assigned to you. He/she might be good, sympathetic, or not. You have the right to ask for a different physician.

I did; it caused friction and animosity toward me, but at least my father had more care that he needed before discharge.

3. Your parents should also have been given discharge instructions, advising follow-up with a physician (or more). I've found that some of those follow-up physicians aren't worth seeing, so we go to our regular doctors.

But if your father did have a follow-up visit, all of his issues should have been raised then, and the doctor should have addressed them including ordering home care. It might be that he needs a higher level of home care.

4. I think I would contact his oncologist, even if you don't yet have HIPAA authority to get information on behalf of your father. If your mother does, you can make a conference call to the oncologist and ask to speak with a staff social worker (some oncologists have them) or one of the PAs.

It will probably be difficult, but raise the issues already suggested - what's your father's prognosis? Ask also about rehab, either at a facility or at home. (The former would be better but since he's been discharged he might have to be admitted again for the initial 3 day hospitalization period to run before Medicare will pick up the cost.

There may be other ways to get rehab with Medicare support; I'm not familiar with them although I do recall being advised earlier this summer that if my father was discharged from rehab earlier than anticipated, and relapsed, that he could be re-admitted w/o another hospital stay.

I have not checked this with Medicare rules, so I can only report it was advice although from someone I felt I could rely on, one of the rehab facility admins.

5. My father came home from rehab over a decade ago and was on total tube feeding. I was very uncomfortable about handling it but a nurse at the rehab facility was very kind and took me step by step through the process. After the first few times alone, I had no more qualms.

6. I would follow up with the hospital that prematurely discharged your father though. Call it, ask the name of the administrator, and send a written letter, certified mail. If the administrator is qualified and competent, and/or if the hospital is responsible, in breech of standards, or negligent, an investigation will be instituted.

Some hospitals aren't that responsive, so you might also consider finding another hospital with a more patient oriented approach. Hospitals compete on various levels - they can't offer bargain basement prices like retailers, so they focus on patient satisfaction.

I haven't done any research on this specifically as until now we've generally been satisfied with the hospital to which we've gone. Medicare, or other posters, might have specific information on where to search online to determine what post-discharge satisfaction rates have been.

7. I wouldn't recommend considering legal action at this point, but it doesn't hurt to throw out a few terms. Failure to meet standard of care for specific medical issues is one. It's a major aspect of a med/mal lawlsuit. But you have to be careful - if this isn't a very responsible hospital, the staff might "circle the wagons." If it is responsible, ears will perk up and someone in admin will get to the bottom of the issue.

It doesn't hurt to be frank though in raising the issues in your post and letting the hospital administrator know how disappointed and dissatisfied you are.

Lastly, I do agree that you'll need to get more involved and shepherd your folks through the maze of hospitalization and rehab treatment.
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Sounds as though some counter thumping is in order here. I am afraid you are going to have to make that 2 1/2 hour trip and go with Mom to the ER when she takes Dad. Refuse to take him home, it is as simple as that. They will probably be very unpleasant about it but stand your ground. He has to be in the hospital several days I believe three before he qualifies for rehab. if he has not been home more than a few days and again I can't remember how many he may still qualify.
Where is his own Dr in all this?
If he needs a feeding tube do not let them just put one in his nose. he needs long term nutrition so needs one they insert surgically through his belly. it is a surgical procedure but minor and done under heavy sedation. Someone at home will have to be trained to give the feeds but it is not rocket science. There is a learning curve but home health should be available to come in a few times to help Mom get the hang of it.
PT needs to go back to school. The ability to walk is not an indication of the ability to go home.
If Dad has lost a great deal of weight he certainly needs supplemental nutrition and Medicare will pay for the supplies as long as they approve it which they don't always. He may have to have some tests to prove he can't swallow properly but they are non invasive and involve swallowing various consisting of various consistencies of foods laced with barium under X-ray. Not a big deal and not stressful.
These are curative treatments and you all and Dad have to realistically look at the whole picture and see if Dads quality of health is worth these interventions and maybe it is time for palliative care.
This is a difficult and big decision but having a talk with the hospice provider may help you make the best decision. You can just call them and go to their office for a talk with or without Dad's knowledge or permission and presence or have them come to the home where they can examine Dad and assess his condition. Hospice will not usually start tube feeding but usually allow it to continue if helpful.
Was the recent neck surgery related to the cancer of the esophagus? If so how far does everyone want to go to pursue a cure?
Bottom line is Mom can't manage Dad and needs your support to bring about a change
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If you feel your dad needs more acute care take him to the ER, see if he can be admitted. If he can be admitted then you can try to fight for rehab.

I'm wondering why your dad was denied rehab before? He was in the hospital and received some rehab there but was not sent to a rehab facility?
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