Hi everyone. I’m the full-time caregiver and healthcare power of attorney (POA) for my mother. She’s been in the hospital for over 40 days, under a comfort care designation for the majority of that time. She has end-stage COPD, atrial fibrillation, severe cognitive decline, hallucinations, anxiety, and total dependence for all activities of daily living. She hasn’t walked since early June, isn’t eating more than a few bites here and there, and sleeps most of the day.
Despite all of this, the hospital is actively trying to discharge her — and doing it in ways that feel secretive, manipulative, and deeply unethical. I filed a Livanta appeal and lost. I filed a reconsideration and lost. I’ve contacted CMS and IDPH. I’ve submitted a formal letter to the ethics committee. I’ve objected in writing to case management repeatedly. Nothing has worked.
The hospital has:
Avoided all written communication and refused to give me a formal discharge plan.
Stated they will not speak to me in writing because “Risk Management advised them not to.”
Prompted my mother to make delusional phone calls to me, likely to suggest she’s making decisions independently.
Repeatedly reduced her medications (including long-standing anxiety meds) to make her appear more lucid.
Documented “selective” moments of clarity while ignoring hallucinations, total dependency, and fear.
Involved psychiatry in reassessing her decisionality without addressing the broader pattern of cognitive instability.
Now they’re labeling me “uncooperative” because I insist that everything be in writing. I do this to protect my mother, because prior verbal meetings resulted in my words being twisted and charted inaccurately. I am terrified they’ll attempt a discharge to home or to a facility that she is not safe for — despite my repeated written refusals to authorize any placement, SNF admission, or Medicaid application. I’ve also informed the care team that I do not consent to rehab, wound care, or therapy due to her comfort-focused status.
My partner and I have been present almost every day. I’ve documented her delirium, poor urine output, unmanaged pain, and lack of nutrition — none of which are reflected accurately in the chart. Instead, they’re rotating physicians and building a case for discharge. I’ve done everything right, legally and ethically, and I feel like I’m still being steamrolled. Her Medicare appeal was denied and we are being billed over $12,000 per day.
I’ve contacted lawyers, ombudsmen, hospice organizations, and advocates — no one seems able to stop this. I’m emotionally drained and terrified. It feels like they’re just trying to wear me down until I cave and let them send her somewhere unsafe — then they’ll say the discharge was my choice.
Has anyone been through this? Is there any agency, advocacy group, or legal step that actually helped you stop an unsafe discharge? How did you keep going when the system tried to make you feel powerless?
Any guidance, insight, or shared experiences would mean the world right now. Thank you.
Like explained, hospitals usually don't do Hospice care and that seems to be what Mom needs. So, you either take her home and have her placed on Hopice and care for her or transfer her to LTC and bring hospice in.
If I were you, I would talk to a Hospice Agency to learn how it works.
Moreover, hospitals are designated for "acute care" which this no longer is, given you are on a comfort care, Hospice type situation.
You are correct that she will eventually, when they work through the legalities of removing your control as POA (which they will easily do in this case) be removed to care, whether in in-facility Hospice or SNF (skilled nursing facility if Mom still requires skilled nursing for comfort.
You don't understand the system and apparently the Social workers are unable to educate you as to what it is; I doubt I can do better. You understand, or seem to now, that you've no choice in this. Let the Social Workers walk you through what will now happen (whether you agree to it or not). I am so sorry for this loss of yours. I truly hope that your mother is currently without any assets at all, because she is currently dying, and you will be billed; her assets will be completely eaten alive by hospital bills at this point. The hospital has done everything legally and humanly possible to educate you in this matter, all to no avail. That's really so sad. Just heartbreaking.
If the hospital is doing such an awful job of taking care of your mom, why on Earth are you fighting tooth and nail to keep her there?
I know how hard it is to watch a family member die, but there comes a point when there is nothing left to do but make your loved one as comfortable as possible - this is where hospice comes into play. You say the hospital isn't properly managing her pain - if I were you, I would be fighting then to get her OUT of there, not keep her! Pain management at the end of life is the kindest thing we can do for our loved ones - to fight to keep her in a place where you know it's not being properly managed, quite frankly, borders on cruelty.
I know how hard it is to accept that all of the medical intervention in the world, right at hand, is not enough to save someone once their bodies have passed a certain point, and unfortunately that's where your mom is now.
Why are you so insistent about mom staying? Every single family member that I have - along with myself - that has spent any time in the hospital can't wait to get out. My FIL used to jokingly say "a hospital is no place for a sick person" and in many ways, he was right. Not to mention the fact that with mom there, she is being exposed to all sorts of contagions that she would not normally be.
Work with the hospital placement team to find mom a safe care facility. If it is that important to you, spend the money to give her a private room. Digging your heels in over this isn't helping her at all, and it might possibly be harming her.
OP seems to be struggling with Mom’s decline , and is blaming the hospital, which some families do as they are grieving LO’s impending death . This is clouding OP’s judgement , and OP is ignoring the need to get her in a facility for hospice like comfort care . OP is still arguing after so many failed appeals , lawyers etc . Some of them had to have already told OP what we have all said here.
I know this is hard. But at this point, especially in light of all of the responses to your appeals etc, you really only have a couple of options. If it is unsafe to discharge her home, realistically you only have one option - and that's LTC/SNF. Or potentially a hospice house situation if she is on hospice care. If she's not, it is probably time to look into it. Sooner rather than later.
If you continue to refuse her discharge from the hospital, but give them no options for a safe discharge, they will at some point take the decisions away from you entirely.
If all medical intervention options are exhausted and comfort care is her only option- the hospital has done their job. They are there to provide acute care for medical issues. They are not responsible for, nor staffed for comfort care.
Plus if she is on comfort care, your need to apply so much medical intervention runs counter to comfort care. Prolonging a life like this just contributes to your LOs pain and suffering.
OP having written that as POA she refuses , Medicaid application , rehab , SNF or discharge to home is more ammunition to have OP removed from POA .
Unsafe discharge can not be used to keep her in the hospital because you would rather have her there than SNF . And yes , the hospital has resorted to certain manipulative tactics to get you to make a decision either to place Mom or take her home , because they can not keep her there .
Unfortunately , your only choices are to place your mother in SNF or take her home. Hospice either at a hospice facility ( if there are any near you ) or at home is another option .