When to use Hospice???

[buckeyefan1975]

My father was diagnosed in August of 2014 with ALS. He has now progressed to the point of him being unable to talk, eat, walk or even move with out assistance. I work in the Medical field and believe it is time to transfer him to Hospice, But my Mom, his caregiver, does not think it is time to do so. He is stable at the moment but we have not been given information about it. The doctors have been saying since July of 2015 that we need Hospice.

I was just wondering if anyone has information that would be helpful in making this decision. He was hospitalized in September of 2015 for aspiration pneumonia and he stated by shaking his head that he wanted everything done to help him survive. That being said he is still a Full Code.

I just want for him to be comfortable during this time, and I believe Hospice would really be beneficial for both Mom and Dad.

Any input would be appreciated. Thanks!!

 

[Vincent]

As far as getting in touch with hospice goes, the sooner the better. Hospice can offer assistance with more than aid in the process of dying. I have used them for counselling so far, but they are also able to do home care as well. When being admitted to residential you are allowed to stay for 3 months then there is a period you have to be out before you can return. So you don't want to go in too early. At least that is how it works here. Hope that helps.
Vincent

 

[lgelb]

Hospice agencies vary widely. Most services are provided in-home, though some agencies have their own facility for respite/end-stage care.

In the States, you will want to ensure that all DME that your dad will need has been purchased prior to starting hospice. You will also want to "interview" as many agencies as are Medicare-approved in your area. Note that if your dad has a Medicare Advantage plan, hospice care will supercede it for everything connected to ALS, while the MA plan will continue to fund other issues.

Ask one or more agencies to come over and talk to your parents about what they provide, see the equipment that your dad is using (some agencies won't accept pts with certain equipment needs), share their philosophy of care, etc. Let your parents decide if they are interested at this time. Some agencies also offer a bridge level, "palliative" care before hospice.

Starting hospice is a service offering like anything else. It is not mandated for PALS (disclosure: my husband did not opt for hospice). It is not a doctor's decision; it should be theirs.

Best,
Laurie

 

[Atsugi]

We had in-home hospice when my wife died. It helped tremendously.

 

[helkat22]

There's no harm in having them come out and assess your father to see if he meets the in-home hospice criteria. Their general guideline is 6 months or less.
Hospice house in our area is typically for pts who have less than a week.

 

[cheerleader]

with ALS the 6 month or less standard is not applicable.

 

[lgelb]

In ALS, Helga, the "six month" criterion is more disease-specific -- many of our members use it longer than that -- and agencies have their own criteria. That is one reason I advise speaking with each agency directly, although many show eligibility criteria on their Web site. And hospice facilities can certainly have pts who remain longer than a week, depending on circumstance -- not to mention that knowing when the last week actually is in ALS can be clear or dicey.

 

[affected]

I'm in Australia so the setup is different, but saying that getting hospice involved early is really beneficial.

For us is just called palliative care, and we registered with them early. It meant we had a real relationship with them well before Chris got to end stage. So it wasn't like having strangers who were not familiar with us suddenly being called in on the scene when things were getting scary for Chris. They had been around for more than six months already and we trusted them completely.

They will concentrate on comfort care, no matter what stage of progression you are at and this is really important.

I agree with advice given so far - start researching what is available in your area, shortlist the services, then see if they will let one come out and discuss the options. Then your parents can make an informed choice, rather than an emotional choice (thinking no hospice is for death I don't want that yet)

 

[helkat22]

That's why I used the term "general guideline". 6 months isn't a hard an fast rule.
That's the Meidcare guideline...which is a federal program.
I also stated that it wouldn't hurt to contact hospice to come out an do an eval.
I work with hospice nurses on a daily basis. I have asked for the guidelines.
I thought I could offer my input and be helpful. Never did I say "these things are written in stone."

 

[Atsugi]

Helkat, you are being helpful. So is everyone else. If some of the posts seem to be taking issue with yours, it's only because communication through short posts is not a very efficient way to have a friendly dialogue. I don't think anybody is actually ragging on you. Thanks for pitching in.

 

[helkat22]

Thanks, Mike!

I think I'm just overly sensitive today, LOL!!

 

[Dave K]

Since virtually all treatment for ALS patients is palliative in nature and none is curative, the decision to trigger hospice should be easy: as soon as possible. This is because hospices are required to provide not only all necessary palliative care, but also a host of other additional benefits. Every day you wait to trigger hospice, you are accomplishing nothing other than giving up the right to those benefits.

In Missouri, these regulations describe the minimum care a hospice is required to provide: http://health.mo.gov/safety/hospice/pdf/19c30-35.pdf

You also need to look at the patient's health plan. Medicare only funds hospice benefits if the patient has a life expectancy of six months or less. However, many health plans have expanded and liberalized their hospice benefits, including eligibility when life expectancy is 12 months. So look at your policy.

As for DME, the above Missouri hospice regulations state that "The provision of medical supplies and equipment shall be coordinated as needed for the palliation and management of the terminal illness and related conditions. Hospices shall make every effort to assure that patient needs for medical supplies and equipment are met." Since virtually all of an ALS patient's DME is for the palliation and management of the terminal illness and related conditions, the hospice is legally required to provide it. However, as a practical matter, many hospice organizations are not prepared to deal with the equipment needs of ALS patients, and so you may be in for a headache if you don't get the DME sorted out before triggering the hospice benefit.

Finally, if your father needs 24-hour care that the family is unable to provide, Section E(2)(B) of the above Missouri hospice regulations has a catch-all requirement that the hospice must "Assure all other services that are reasonable and necessary for the palliation and management of terminal illness and related conditions are available on a 24-hour basis." Therefore, if any kind of equipment or care (nursing, nursing aide, etc.) is required to prevent or ease the patient's symptoms, the hospice is supposed to provide it. If the hospice balks at this and points to Medicare funding limitations to limit the hours of care they will provide, you may be in for a fight, but the law is on your side.

--Dave K

 

[lgelb]

Dave,

I am going to disagree with your reading of MO regulation, as no hospice [absent the specific Cali situation you may have w/ the Catch-22 trach care requirement] is staffed to provide continuous indefinite care. And, regardless of what the case law has been (I haven't checked, but I think if it leaned in your direction we'd've heard), impending death is no time to be fighting over the letter vs. spirit of law or regulation. It is a time to help ease someone's passing and find as much peace for all during the process as possible.

So I don't want newbies especially to think hospice entitles families to these awesome benefits you describe. And that includes ALS-related DME. As you acknowledge, most hospices are not prepared to deal w/ orders apart from the standard fare that someone would need for pain/air hunger management, palliative O2 and the like. And since they are paid a fixed rate by plans, they can't afford it, either. Yes, you can still get DME via your non-hospice benefit but generally not in or via hospice.

I know you have strong feelings...but we need to keep it real here.

Best,
Laurie

 

[helkat22]

And they don't provide what is considered custodial care...

 

[Dave K]

Buckeye, Laurie is right it is not worth a fight if your family can provide all the care your father needs. I pointed to the regulations so you are able to press your case, as I said, "if your father needs 24-hour care that the family is unable to provide." Laurie is not a lawyer and, like most people in the ALS community, makes some wrong assumptions about hospice care. If your father is being starved of care, you should seek out a good ADA lawyer to assist with ensuring that your father does in fact get the care needed to make the best of his final months. You may be surprised how fast and easy it is to get help from the government for a dying ALS patient who asserts his rights.