hospice questions

[tmg16]

I'm not sure if this is an appropriate thread. I am not a caregiver yet but my mom was diagnosed in January 2016. Her decline has been pretty quick with rapid deterioration in respiratory function. She is on the Trilogy 24/7 and is completely tube fed. She is weak but still mobile and spends most of her time in her bed or reclined in a lift chair, she is most comfortable reclined. She is still taking care of herself for the most part. She lives with my sister and I live about 10 minutes away. She is starting to have difficulty with taking care of herself. She used to use the syringe for feeding but can no longer manage it so my sister sets her up with the gravity bag several times a day. At her request, I started looking into home health services and after research here and elsewhere came to the conclusion that it wouldn't be covered by insurance. My mom can pay for the services if needed but given her respiratory function, I asked if she could get a hospice referral. Her ALS doc is putting the order in. She will be getting a loaner pwc from the ALS Association and I think that will be sufficient. She really doesn't leave the house and it doesn't seem like she really needs the pwc. I figure if it turns out she uses the heck out of it and wants a better one, we can leave hospice to get one but that the most important thing is to get the home health started so she can become comfortable with the service before she is totally dependent. My question is - am I missing anything? Does this seem reasonable? I feel like we haven't done a great job keeping ahead of the progression here and I don't want to make any mistakes. My mom is really independent and fiercely trying to maintain that as long as possible and I suspect, not "impose" on my sister and I to her detriment.

 

[lgelb]

Hi, TMG, does she have a Hoyer lift and hospital bed? I realize she is still partially ambulatory, but the ability to raise her upper torso might help her breathing. These are also things hospice may not buy so makes sense to plan ahead so as not to have to go in and out.

I can't quarrel with your wheelchair logic if she can remain well-positioned in the loaner or a recliner.

In terms of how soon you want hospice for her and her prognosis, is she in distress? Does she breathe comfortably with her Trilogy?

Best,
Laurie

 

[Manhattanite]

Hi tmg I am in a similar situation. After much thought and discussion we went into hospice about 3 weeks ago and I feel it is the best decision we could have made.

Even though my PALS was not in distress and could breath comfortably with the Trilogy, I had noticed that he had declined to a certain point where he could not be completely independent. The added attention and human contact provided by hospice have significantly improved my PALS comfort and well being. They have also provided us with the tools to address distress when it arises. I believe it is better to go into hospice early and calmly and have their team become familiar with your PALS rather than waiting until it is an emergency and a rushed process.

We were waiting for an electric wheelchair through Medicare but stopped when we felt hospice was more important. In any event, our local muscle dystrophy association loaned us a chair permanently.

One more thing to keep in mind is that hospice may switch your mom to their own respiratory equipment contractor so her Trilogy might be changed for another device. Inquire about it in advance to avoid any surprises.

 

[tmg16]

She says she is not in distress and seems very comfortable with her trilogy. I think if she decides she wants any other equipment we could always check the ALS Association or craigslist. Would she be booted off hospice if we added that kind of equipment? I think she'd be more comfortable in a hospital bed and have asked her a couple of times about it and she doesn't want one. I am also hoping that the hospice people can provide some guidance to her about getting some of these things as needed for assisting the caregivers and not just for her comfort. I think she is not prioritizing her comfort enough.

Thanks so much for your input. I really appreciate all the great information provided in this site.

 

[Dave K]

Would she be booted off hospice if we added that kind of equipment?

Providing medical equipment to a patient is never a ground for discharging the patient from hospice. The only valid ground for discharge (other than death or abusing the hospice personnel) is not being "terminally ill," however that is defined in your jurisdiction. If a desired course of treatment is "curative" and is not intended to palliate symptoms related to the terminal illness, the hospice may not be required to provide it, in which case the patient could voluntarily terminate the hospice (but could go back on hospice at a later date, if wanted). But this would not be the same as being "booted off."

A big problem for PALS is there are not yet any medical clinical guidelines for DME specifically for ALS. Consequently, it is impossible to predict what equipment any particular hospice may be set up to provide. In general, a big hospice with lots of resources will have greater access to more kinds of equipment and will have fewer hassles in getting equipment they aren't already set up to provide. But even the big hospices are often not well organized to provide all necessary equipment to a PALS. Consequently, support groups often advise PALS to get all of their equipment in hand before going onto hospice. But equipment issues are never a basis for worrying about being discharged.

We had a big hospice with lots of resources (Kaiser), and they were very good about providing equipment, including

Cough assist
Suction machine
Nebulizer
Percussive vest
Trilogy for BIPAP (as prescribed pre-trach)
LTV ventilator (as prescribed post-trach)
Hospital bed
Lateral rotation mattress
Hardware for mounting Tobii computer to hospital bed
EMG switch for PALS to sound alarm, control wheelchair, etc.
Patient lift & sling
All power wheelchair accessories (including custom seatback, new headrests, calf supports, and other things as needs arose)

In fact, Kaiser never hassled us about providing all prescribed medical equipment through hospice.

The bottom line is if medical equipment is necessary to palliate symptoms of the patient's terminal illness, a hospice is required to provide it. But the reality is many hospices just aren't set up to do this properly for PALS and don't know what they're getting into when their sales agents sign up a PALS. So you need to talk to the hospice and find out if they are going to have problems providing all necessary care, and if they aren't able to do it with the right equipment, you need to find another hospice or find ways to work around the problem (like voluntarily going on and off hospice to get equipment somewhere else).

 

[tmg16]

Thank you. That is great info and gives me a lot to think about questions to ask the hospice intake.

 

[Narrowminded]

Dave has given us a ton of great information. One caveat is that hospice around the US and even globally all handle things differently. Where I live, I cannot get a hospice specifically because Brian is on a Vent. They absolutley won't take a vented patient. In the same vein, there isn't even a facility locally that accepts ALS patients, particularly with a vent. Which means, I cannot get Brian on hospice, but I also do not have a choice of placing him in a facility either.

I just want others to be aware that while some, in some states, like CA for Dave with Kaiser, do handle all of that, it is not the case everywhere. Do a ton of research.

Hugs,

Sue