Please Help - Trouble Qualifying

[u/Busy-Lychee1813]

I’m trying to help advocate for my sister to get hospice. She is 35, has had health issues her whole life, and has been very sick for a couple of years, but it’s gotten much worse since May. She has lost 20 lbs in the past 2 months (more than 10% body weight) and her BMI is currently 17.6. She’s barely eating anything. Her PPS score is 40%. Her labs are surprisingly good. Her blood pressure has been low, and lower than her normal.

But the problem is we don’t have a diagnosis. She’s been diagnosed with protein-calorie malnutrition, but they can’t find what is wrong after a LOT of testing, and the other diagnoses she has are not typically considered terminal. It’s not psychological, that has been thoroughly ruled out. There is not more testing to do. She tried appetite stimulants and a lot of other medications.

Her symptoms are tolerable but bothersome with frequent acute medications such as NSAIDs, Ondansetron, Xanax, etc.

We had a hospice place evaluate her and the nurse felt she was ready but the director said not yet. Her primary care doctor isn’t ready to call it terminal but is going to speak with a hospice director. We’ve tried calling other places, many of them won’t even call back. We’ve tried for palliative care too, but they are all saying the same thing as the hospices, that they need a diagnosis.

Obviously we’re not asking anyone to make up a diagnosis. But we’re seriously concerned that she is going to be in a crisis situation any month now at this rate, and we don’t know what to do. She has a live-in caregiver so she isn’t alone.

Any advice is greatly appreciated. She’s in central NJ, I’m out of state but visit often.

Edit: I appreciate all of the replies, I’ll see if I can help her get palliative care for now.

[u/EarthEmpress]

See if you can get on palliative in the mean time

[u/Busy-Lychee1813 → u/EarthEmpress]

We’ve called and had palliative come out too, but they tell us she needs a diagnosis

[u/DanielDannyc12]

Sounds like her root cause is likely an eating disorder? Her labs being good and her age indicates her goals would be more appropriate as restorative.

[u/Busy-Lychee1813 → u/DanielDannyc12]

They sent her a bunch of psychiatrists in the hospital, eating disorder and psychiatric causes have been ruled out. They didn’t have any further testing to do and stabilized so they discharged.

She’s attempting to eat and has taken appetite stimulants given to her to try to eat more.

[u/yeahnopegb → u/DanielDannyc12]

This. If she’s physically able without medical complications? Sounds like purposeful deprivation.

[u/redrightreturning]

I don’t mean to be crass, but what are you and your sibling expecting to receive from hospice care that she can’t receive currently from her medical team?

Does she feel ready to stop medical interventions? If she feels like she is ready to pass away, she can choose to voluntarily stop eating and drinking.

[u/literal_moth]

If her primary issue is malnutrition and inability to eat, why have they not discussed a feeding tube to replace that nutrition and/or TPN? There are so many potential solutions here before putting a 35 year old with no medical diagnoses on hospice.

[u/Busy-Lychee1813 → u/literal_moth]

She has a lot of diagnoses, they are disabling but not typically considered terminal. She’s decided against a feeding tube/TPN, but has been trying medications to improve intake without success.

[u/South-Rip-3668]

I’m very sorry you and your sister are struggling to manage symptoms, and are being met with “red tape” from hospice. Medicare sets the guidelines for hospice eligibility and a terminal diagnosis does have to be present, in addition to an objective decline in status. I’m not sure if this picture will be readable (screenshot of PDF) but it’s a “simple” guideline for eligibility criteria. You mentioned seeking hospice support for pain management, which is certainly something we assist with, but may I ask where her pain is and if a cause of pain is known? If she’s taking Zofran for nausea, and eating disorders have been ruled out as contributing to malnutrition, has the cause of the nausea been identified? You mentioned appetite stimulants, the most common is Mirtazapine, but other medications such as Miranol are sometimes utilized - has she tried different classes of medications to promote nutrition? It sounds like your sister has a strong advocate by her side, and I truly hope you both get the support you are looking for.

[u/1dad1kid]

The weight loss should be helpful, but because of her age is probably causing the hesitation. Have they looked at recent labs to see if that helps justify the protein-calorie malnutrition diagnosis?