Cancer Medicaid refusing to cover my mom who is in hospice care for terminal cancer

Eric

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Not sure if anyone else has run into this but thought I would throw it out there. We've recently learned that mother, who's health has been declining for some time, has metastatic cancer in the pancreas. lungs, kidneys and spine. The doctors said they don't expect her to last more than 30 days (but who really knows?) though we have no reason to really doubt them.

We've all come to terms with it though, I just wanted to point out the struggle with Medicaid, who agreed to cover her hospice care once we've depleted her personal funds, which is about to happen. Now, Medicaid has told us "the facility said your mother can walk on her own to the bathroom and change her own clothes" so they're denying the coverage outright.

The reality is she can't even leave her room without falling and while can make her way to the bathroom, she's wearing diapers as well. I'm just trying to wrap my head around the seemingly cruel nature of this with Medicaid. It sounds like we'll need to pay out of pocket for her care until the end. If you live in Europe or any other developed nation then congratulations, for being the richest country on the planet the United States couldn't give two fucks about our own people.
 

MissNomer

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So sorry to hear this, @Eric . Sadly this does not surprise me. There’s a reason why the wife and I are heading back to England within 5 years to live - and it’s not just the politics here.

Even paying for BUPA in the UK (health insurance that provides services outside the NHS) will be significantly cheaper than health insurance here as I get older.

My mum just got out of her second hospital visit (first was a broken hip three+ months ago, second a broken shoulder a month later) and between the hospital, the rehabilitation unit she wa in for 4 weeks total, the nursing home she was in for 2 weeks and the 6 week comprehensive at home care she’s currently got, her entire out of pocket cost was £0.00…
 

Runs For Fun

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So sorry to hear. From the things I’ve heard about Medicaid it has always been kind of a clusterfuck. Like they’ll make any excuse not to cover something.
 

P_X

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Not sure if anyone else has run into this but thought I would throw it out there. We've recently learned that mother, who's health has been declining for some time, has metastatic cancer in the pancreas. lungs, kidneys and spine. The doctors said they don't expect her to last more than 30 days (but who really knows?) though we have no reason to really doubt them.

We've all come to terms with it though, I just wanted to point out the struggle with Medicaid, who agreed to cover her hospice care once we've depleted her personal funds, which is about to happen. Now, Medicaid has told us "the facility said your mother can walk on her own to the bathroom and change her own clothes" so they're denying the coverage outright.

The reality is she can't even leave her room without falling and while can make her way to the bathroom, she's wearing diapers as well. I'm just trying to wrap my head around the seemingly cruel nature of this with Medicaid. It sounds like we'll need to pay out of pocket for her care until the end. If you live in Europe or any other developed nation then congratulations, for being the richest country on the planet the United States couldn't give two fucks about our own people.

Sorry about your Mom! Sadly, I have a lot of experience with this and helped through a lot of patients and families through this process. Rotating through hospice was also part of my training, and I did inpatient hospice for patients who enrolled during acute hospitalization too as a resident. The question really is where she lived before. Inpatient (hospital-based) hospice is reserved to those with an "uncontrolled symptom" like pain. I've honestly not been able to get anybody admitted for *inpatient hospice (my patients are pain-free). The typical scenario I deal with is patient losing mobility, enrolling in home hospice, where family becomes caregiver with some (quite variable quality) extra help from nurses aides and hospice nurses. I usually prefer to remain the physician in charge just because I'm better at managing the special aspects of dying from the disease I treat. I'm not sure how this works if your Mom lived in a facility at baseline, as the extra services (I suppose) would have to go through them. I'd also say that if she's in a decent facility, she's already getting the level of care outpatient hospice provides, though not necessarily the quality.

Honestly, over the process of my patients' disease, family members become such good caregivers the impact of hospice on what they'd get is relatively low ( getting supplies like a hospital bed, meds in the fridge, nurses aide 2-3x a week etc).

If you wanna talk about it, send me a DM.
 
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Eric

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Sorry about your Mom! Sadly, I have a lot of experience with this and helped through a lot of patients and families through this process. Rotating through hospice was also part of my training, and I did inpatient hospice for patients who enrolled during acute hospitalization too as a resident. The question really is where she lived before. Inpatient (hospital-based) hospice is reserved to those with an "uncontrolled symptom" like pain. I've honestly not been able to get anybody admitted for home hospice (my patients are pain-free). The typical scenario I deal with is patient losing mobility, enrolling in home hospice, where family becomes caregiver with some (quite variable quality) extra help from nurses aides and hospice nurses. I usually prefer to remain the physician in charge just because I'm better at managing the special aspects of dying from the disease I treat. I'm not sure how this works if your Mom lived in a facility at baseline, as the extra services (I suppose) would have to go through them. I'd also say that if she's in a decent facility, she's already getting the level of care outpatient hospice provides, though not necessarily the quality.

Honestly, over the process of my patients' disease, family members become such good caregivers the impact of hospice on what they'd get is relatively low ( getting supplies like a hospital bed, meds in the fridge, nurses aide 2-3x a week etc).

If you wanna talk about it, send me a DM.
Okay, this is great information, I really appreciate it. She previously lived at home but kept falling, finally they put her in the hospital with a "fall risk" wristband and sign outside of her door as well, that's when they diagnosed the cancer and all. Then it was off to a care facility and much like you're describing they tried to send her home under these conditions asking the family to take care of her.

I'm in a different state and the rest all work, she needs FT care but it sounds like the brunt of that will fall on us anyway, we'll just have to pay for it. My sister is handling it but it sounds as if they approved this care, like you say not hospice but for her to remain there as comfortable as possible until the end, but they changed their minds about it after we already put in notice for her duplex and all. It's bizarre but I also think we need to know more about why this happened, seems like there must be a compelling reason.

Thanks for listening and providing your expertise with this.
 

Alli

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The US is a mess when it comes to healthcare. I’m fortunate that my mother has Tricare for life. So even though Medicare gets charged as primary, Tricare covers everything else. Of course, this is why I’ve always said that if the US Armed Forces can handle a good medical system for all their “employees,” the rest of the country should be able to just follow their plan.
 

P_X

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The US is a mess when it comes to healthcare. I’m fortunate that my mother has Tricare for life. So even though Medicare gets charged as primary, Tricare covers everything else. Of course, this is why I’ve always said that if the US Armed Forces can handle a good medical system for all their “employees,” the rest of the country should be able to just follow their plan.
TriCare has plenty of quirks, but I agree. It's closest to what socialized medicine would look like in the USA.
 

Scepticalscribe

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Not sure if anyone else has run into this but thought I would throw it out there. We've recently learned that mother, who's health has been declining for some time, has metastatic cancer in the pancreas. lungs, kidneys and spine. The doctors said they don't expect her to last more than 30 days (but who really knows?) though we have no reason to really doubt them.

We've all come to terms with it though, I just wanted to point out the struggle with Medicaid, who agreed to cover her hospice care once we've depleted her personal funds, which is about to happen. Now, Medicaid has told us "the facility said your mother can walk on her own to the bathroom and change her own clothes" so they're denying the coverage outright.

The reality is she can't even leave her room without falling and while can make her way to the bathroom, she's wearing diapers as well. I'm just trying to wrap my head around the seemingly cruel nature of this with Medicaid. It sounds like we'll need to pay out of pocket for her care until the end. If you live in Europe or any other developed nation then congratulations, for being the richest country on the planet the United States couldn't give two fucks about our own people.

So sorry to hear this, - stressful, heart-breaking and infuriating all at once, especially when this is a time when - above all - you need support instead of further stress.

I've been down the tragic trajectory of that dementia route with my mother (and posted at length about it on MR at the time, and subsequently, and more recently, here), so I can sympathise and empathise completely with you.

Fortunately, we did have state support, - and, at an individual level, were in a position where we could afford to pay for the superb care provided by the wonderful live-in Filipina carer (and yes, of course, social class and its myriad associated advantages were of considerable additional benefit, as it enabled us to finance, fund & keep my mother at home for the last six years of her life) - but I cannot sing the praises of a publicly funded public health system highly enough.

To my mind, it is a sign of a civilised society.
 
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DT

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@Eric

FFS, I seriously thought once Hospice stepped in, you know, at an "end of life" stage, that was "automatically" covered - at least that seems to be what happened with the wife and I (for our Moms).
 

Eric

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@Eric

FFS, I seriously thought once Hospice stepped in, you know, at an "end of life" stage, that was "automatically" covered - at least that seems to be what happened with the wife and I (for our Moms).
The way I understand it is unless she's 100% bedridden, at least not able to get up and go to the bathroom (even though she still requires human assistance and has to wear a diaper) she won't qualify. We are preparing ourselves to cover all the costs as she likely won't last through the appeal process.
 

P_X

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The way I understand it is unless she's 100% bedridden, at least not able to get up and go to the bathroom (even though she still requires human assistance and has to wear a diaper) she won't qualify. We are preparing ourselves to cover all the costs as she likely won't last through the appeal process.
This doesn't make sense. Is she in a nursing home?
 

Eric

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This doesn't make sense. Is she in a nursing home?
Yes, it's a rehabilitation facility and nursing home. We're going to move her to a cheaper home care facility since we'll have to pay out of pocket for the remainder of her hospice care. We agree that it doesn't make sense either, I try to look at it objectively like they must have logical reasoning but I can't see how they justify it. In the end if feels really cruel but it is what it is.
 

Scepticalscribe

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Yes, it's a rehabilitation facility and nursing home. We're going to move her to a cheaper home care facility since we'll have to pay out of pocket for the remainder of her hospice care. We agree that it doesn't make sense either, I try to look at it objectively like they must have logical reasoning but I can't see how they justify it. In the end if feels really cruel but it is what it is.

Horrific, heart-breaking and exactly just what you do not need at such a time.
 

Clix Pix

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A few years ago friends went through this with their mother. She had already been disabled by a stroke previously, then developed dementia, but thanks to two knee replacements was more-or-less ambulatory with a walker -- and then she had another stroke, this one affecting her ability to swallow and to speak as well as her left side. She had been living with her son, and their house was already rather problematic when it came to being wholly accessible, never mind being suitable for caring for a bedridden invalid. She remained in the hospital until the point where it became clear by what the docs and other medical staff said that they were going to turf her out, she was no longer an acute case needing that level of care. Since she was unable to return to her own home and clearly was bedridden, not able to function at anywhere near the level she had previously, not all that responsive (but hard to tell how much was due to the dementia and how much was due to the new damage caused by the stroke) the decision was made to admit her to a freestanding inpatient hospice program because the likelihood was that she was not going to live very long. There were cardiac issues, there were other issues...... So she was admitted there, and coverage was assured, but the staff also told my friends that this depended upon her overall condition and that if she showed signs of improvement -- increased alertness, ability to sit up or do other things on her own, that it was more than likely that they would need to discharge her, transfer her to a nursing home. The standard was based on her condition at the time of admission and if she would not be deteriorating and therefore was not terminally ill by the definitions established for the inpatient stay at the hospice, she would need to be moved to a different level of care: i.e., a nursing home. As it happened, though, her condition did deteriorate, her stay at the hospice facility remained covered by Medicaid, and she slowly slipped further and further away. She died a couple of weeks later.

Anyway, it was very upsetting and frustrating for my friends to have to deal with this whole end-of-life scenario with their mother while at the same time worrying about what would happen if Medicaid and the hospice facility decreed that her condition was showing improvement and therefore pushed her situation above the level required for remaining there. It was very apparent that she was never going to be able to function at anywhere near a "normal" level, and in fact she had not been doing so prior to the second stroke. She was definitely in very poor condition -- but the key was: is she actually terminally ill with death imminent within a few weeks or could her physical condition actually mean that she might linger for months? The family could not take her home, and I think the brother was adamant about not wanting to have her admitted to a nursing home, which of course threw obstacles in the way when trying to review options and make decisions. It was a very difficult situation all the way around, and it never should have been that way when it came to the inpatient hospice care component. The family should have been allowed to just be with her, just spend their last weeks with her in peace rather than having constant tension and worries about what might happen if her condition changed.....
 

P_X

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the brother was adamant about not wanting to have her admitted to a nursing home, which of course threw obstacles in the way when trying to review options and make decisions.
This is a very unusual scenario and I suspect it only happened because the brother pushed it. Not that she wasn't eligible as eligibility is defined as life expectancy less than 6 months. Many stroke patients however bounce back significantly and outlive the initial prognostication. This is why I don't think I've ever discharged a stroke patient to hospice who wasn't already actively in the process of dying.
 

Clix Pix

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Yes, the situation was.....difficult, to say the least, in many ways. I could tell that the medical staff were ready to discharge her -- she didn't need acute care any longer -- but they couldn't just kick her out without a specific place to transfer her and the brother pushed it to the max about not wanting her to be in a nursing home. It was one of those situations, though, where it was entirely feasible that she would die within six months but it was quite impossible to be sure just how things were going to go, especially given her dementia and inability to express herself. After some negotiating the decision was made and I think the hospital was relieved to be able to safely transfer her out of their facility to the hospice facility, and the family was fine with that, so it was done. The hospice facility was a lovely place, by the way -- very nice environment, the staff were clearly compassionate and caring, and she had a very nice room. Of course once she was admitted there it was the hospice's problem in dealing with the situation if she indeed physically improved to the point where it was apparent she was no longer as likely to die within six months. I think there were a few days where there seemed to be small signs of improvement or at least holding steady, but then she started slipping in the other direction. That whole thing was rough for everyone concerned.
 

Scepticalscribe

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Yes, the situation was.....difficult, to say the least, in many ways. I could tell that the medical staff were ready to discharge her -- she didn't need acute care any longer -- but they couldn't just kick her out without a specific place to transfer her and the brother pushed it to the max about not wanting her to be in a nursing home. It was one of those situations, though, where it was entirely feasible that she would die within six months but it was quite impossible to be sure just how things were going to go, especially given her dementia and inability to express herself. After some negotiating the decision was made and I think the hospital was relieved to be able to safely transfer her out of their facility to the hospice facility, and the family was fine with that, so it was done. The hospice facility was a lovely place, by the way -- very nice environment, the staff were clearly compassionate and caring, and she had a very nice room. Of course once she was admitted there it was the hospice's problem in dealing with the situation if she indeed physically improved to the point where it was apparent she was no longer as likely to die within six months. I think there were a few days where there seemed to be small signs of improvement or at least holding steady, but then she started slipping in the other direction. That whole thing was rough for everyone concerned.

I remember similar times with my own mother, when she sharply deteriorated over a period of several days in late January 2016.

At that time, we were advised to expect (and prepare for) the approach of her end of life, - her doctors thought that she wouldn't live beyond March of that year, and recommended to my brothers that they both spend considerable time with her, as they didn't expect her to be around for much longer.

That was when we first were able to access hospice care, - through the public health system - though they treated my mother as an outpatient, and the degree and extent of the care she received from them varied, - they intervened or stepped back - as her own health improved or disimproved, but she did remain in the hospice care system, and the hospice were an integral part of her care plan, along with her GPs, community nurses, from then, until she died.

Of course, she rallied, mainly due to the superb quality of care she received from the fantastic carer, and died almost three years later.

Moreover, from January 2016, until she passed away in December 2018, we were able to avail of an annual fortnight's care - we broke it down to two individual weeks - in the hospice, which allowed the carer a break .
 
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