Questions on hospice and caregivers leave

[Maryl08]

Unfortunately the ALS nurse at our clinic recently left and they do not have a replacement for her. She had been there a long time and was so great with ALS patients. We don't have a place to go now for general questions.

When we first met with her she said that my mom would qualify for hospice care. She said it was up to us whether or not we wanted it yet. The benefits were we would get to know the hospice team and really be able to take advantage of their services. The con is we wouldn't be able to use insurance on some things.. I can't remember exactly what that was. What are the pros and cons you all have experienced?

The second question is on caregivers leave. I work for a small startup of about 15 people. From what I've read, the caregivers leave only applies to companies of 50 people or more. Can anyone elaborate on this?

Any input is appreciated. Thank you!

 

[Dizmom]

Some of the things I was told you could not get on hospice
-A speech generating device
-Fancy motorized wheel chair
-Formula and other supplies for PEG feeding if you have not already been getting them.

Basically anything that makes life "easier" for PAL. I really like hospice, the weekly Nurse visits and the 3 CNA visits really help me a lot. The Hospice takes over all the RX refills and pill minder. They also provide a hospital bed, shower chair, hoyer lift, any consumable supplies, like gloves, pull-up type diapers for accidents, OTC meds, chux. bed side urinal. So a lot of pros.
My ALS clinic made sure I had all the the items in the list above before placing me on hospice. I really can't think of any cons, unless you don't have the chair and the speech device, then I would wait until you can get them before going on hospice.

 

[Atsugi]

Private employers with fewer than 50 employees are not covered by the FMLA, but may be covered by state family and medical leave laws.



You must have worked for your employer for at least 12 months in total, and for at least 1250 hours in the 12 months before you take leave. And you must work at a location where the employer has at least 50 employees within 75 miles of your worksite.

 

[Dawood]

By law, a hospice is required to provide all medical care and equipment that is necessary to palliate the symptoms arising from the terminal condition. Therefore, if it is necessary to relieve the patient's suffering, the hospice is obligated to provide it. Period. Having said that, however, the reality is that in the U.S., hospice funding has been set up based on the 20 most common terminal illnesses, and ALS isn't on that list. In fact, most hospices are clueless about what is required to palliate the symptoms of an ALS patient. They will say, "Call us if you're in pain, and we'll prescribe you some morphine. Otherwise don't ask us for anything." So there may be a huge gulf between what you are legally entitled to and what you are actually offered by a hospice.

My wife is on hospice and receives around the clock skilled nursing in the home, twice-daily three-hour visits by home health aides, power wheelchair accessories, transfer slings, a lateral-rotation mattress, cough assist, ventilator, suction machine, pulsating vest, eye-gaze computer, and G-tube equipment and supplies. But here's the catch--we had to fight for almost all of it, and I won't lie: it was a long, hard fight. If you aren't prepared to do your homework and wage a battle, you can fully expect your hospice to tell you that none of what an ALS patient really needs is available or covered. And if it's a small hospice, they simply may not have the resources needed to help you. But if you sign up with a large, well-funded hospice and insist on getting the care and equipment that is needed to palliate the patient's symptoms, and if you don't back down, then hospice can be the very best care available for an ALS patient.

 

[lgelb]

Dawood, I don't want to give people the wrong impression here, so forgive me if I caveat what you said.

Hospice is funded by a monthly capped Medicare or private plan amount. It is not fee-for-service like other health services. Every dollar that hospice spends can be a loss once they break the cap. Supplying specific equipment and round-the-clock care are not Medicare mandates for hospice. It is always recommended to get equipment pre-entry into hospice.

Some hospices won't even support BiPAP, especially if in VAPS mode and/or if used 24/7. In short, all hospices are not created equal even before we get to size. Yes, large hospices can play off gains against losses to a greater extent, but that's not the only factor in play.

Hospices are also regulated by the State in which they are located. Cali is an exceptional state in many respects. Regional politics and the MAC region for Medicare can also play a role.

I could go on, but there have been more realistic posts about hospice, that apply to more people here, so I will just point people to those and remind you that Dawood's experience is an outlier, not the norm.

 

[Diane H]

One option for getting around the "no new equipment or treatments" rule that is common in hospice is to resign from hospice, get whatever it is you need, then sign up again. Hospice won't ban you because you have new equipment, they just can't have you get it while you are using them. Remember though that hospice services vary by country, state, region, and especially by company. Hospice in the U. S. is not a government program but private enterprise. While they do have to operate under Medicare rules if they want to be a Medicare approved facility, their company rules are otherwise free for them to set. So, two hospices in one town can be significantly different!

 

[Dawood]

Supplying specific equipment and round-the-clock care are not Medicare mandates for hospice.

This is a bit misleading, because if specific equipment or around-the-clock care are medically necessary for palliation of symptoms relating to ALS, then there is, in fact, a Medicare mandate for a hospice to supply them: The federal Hospice final rule states that ‘‘hospices are required to provide virtually all the care that is needed by terminally ill patients.’’ (48 FR 56010). That is a federal mandate: if it's necessary to palliate the symptoms relating to the terminal illness, it must be provided. But it is absolutely correct that under existing funding mechanisms, hospices will lose money if they actually obey this mandate when servicing ALS patients, and so you can expect to either do without or be in for a fight if you fail to get your equipment before entering a hospice program.

Dawood's experience is an outlier, not the norm.

That is true, but it is also very sad. If more people fought for their rights, and if ALSA would make home care and DME into advocacy priorities, it could effect changes in an ALS-blind healthcare system and dramatically improve the lives of ASL patients and their families in the U.S.