How to know it is time for hospice

[StephanieO]

Hi all,
Following my mother's diagnosis in Feb 09, I started reading this forum and have found wonderful information. My mother has bulbar-onset and appears to be deteriorating rapidly. As a former health-care professional, she is very stubborn and private about her care, so we are trying to help her and yet also respect her wishes.

As a family, we are trying to figure out what level of deterioration indicates the need for hospice. She is 62 years old, and started manifesting symptoms approximately one year ago. As a very private person, she refused diagnostic testing until her voice was almost completely gone. Now she is semi-mobile, can walk slowly for a short period of time with one or two people assisting her, and is best in a wheelchair. Her PEG works wonderfully; she still tries to eat but spits up everything. As of March, her breathing was at 51%. Since then it has gotten much worse. Her breathing is labored, and she wakes up once or twice a night with great difficulty breathing. She refuses a second test, making it hard to get concrete advice from doctors.

How do you know when the time has come for hospice?

Thanks,
Stephanie

 

[joelc]

I think the time has come. If she is refusing everything, there is nothing you can do but help her stay as comfortable as possible and hospice is part of that. Give them a call.

I am very sorry you are going through this!

Welcome to the forum!

 

[pamnandy]

Hi Stephanie,

I'm new to the forum as well, but felt compelled to answer you, based on my personal experience with my PALS, Andy. Andy's progression has been VERY slow, and we've been fortunate to have him here for a long time. (diagnosed 2001). He has been on Hospice for a year now, and I can tell you that just because we have Hospice doesn't mean that he had "weeks" to live. Hospice has that reputation, but honestly, they are an excellent resource for health care and support. I would say, check with your ALS doctor/nurse representative, even though she won't take that breath test again. Here in PA, we have a clinic that we used to go to, and a team of health care providers gave us personal and professional opinions. You will also go through an interview process with your Hospice rep as well, as your mom will need to meet their list of criteria. They will tell you right away if she qualifies or not. For me, it was a relief to have them a phone call away, along with the compassionate nursing team who comes to your house (therefore getting her away from having to go to the doctors and endure those tests). They will still confer with the ALS people to be sure she is on the right meds, etc for whatever stage she is in. At least ours does. Hospice has increased our quality of life for sure, and for you and the rest of your family, they are a great source of security. I say, don't hesitate to call. It's not a harbinger for the end of her life. It's more of a valuable resource and support. Blessings to you! Hang in there!

 

[StephanieO]

Thank you both for your thoughtful responses. I think I need to start thinking of Hospice as a tool, rather than a sign of deterioration. Reading some of the other threads, it sounds like Hospice comes in more shapes and sizes than I previously realized.

 

[joelc]

Yes, you are correct. Every area is different so please give them a call and see what they say.

 

[rgilstrap]

hospice

my husband was diagnosed april 08 he has bulbar als and is going down quick, mostley just eats liquid falls alot, no longer can talk, are doc here in bakersfield, ca dont comunicate with us very well i guess it because they dont know much about als and i dont either so dont know what to ask them i was wondering when to call hospice in also so im glad for the information everyone has said about it and thanks

 

[Jeannie]

I am sorry you are going through this. I would call hospice in for a meeting or go to just to gather information. i think it would help you to make a decision. They are truley a wonderful organization that wont just help your mom but will help you too.
You are in my thoughts and prayers
In friendship
Jeannie

 

[pamnandy]

I agree with Jeannie. If Hospice doesn't feel you are ready, they will let you know the criteria by which they go. Blessings to you all.

 

[StephanieO]

Even though these are not hard-and-fast rules, I found this list of guidelines on the ALSA website that was helpful. When the time comes, we will obviously consider both my mother's wishes and her doctor's advice. In the meantime, this has given us a few ideas of what to expect:

(excerpted from Hospice of Cincinnati, Non-cancer Diagnostic Booklet 8/02):

Patients will be considered to be in the terminal stage of ALS if they meet the following criteria: (Must fulfill 1, 2, or 3.)

1. The patient must demonstrate critically impaired breathing capacity.
a. Critically impaired breathing capacity as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
i) Vital capacity (VC) <30% of normal;
ii) Significant dyspnea at rest;
iii) Requiring supplemental oxygen at rest;
iv) Patient declines artificial ventilation

2. Patient demonstrates both rapid progression of ALS and critical nutritional impairment.
i) Rapid progression of ALS as demonstrated by all the following characteristics occurring within the 12 months preceding initial Hospice certification:
i. Progression from independent ambulation to wheelchair or bed bound status;
ii. Progression from normal to barely intelligible or unintelligible speech;
iii. Progression from normal to pureed diet;
iv. Progression from independence in most or all activities of daily living
1. (ADL’s) to needing major assistance by caretaker in all ADL’s.
b. Critical nutritional impairment as demonstrated by all the following
2. characteristics occurring within the 12 months preceding initial hospice certification:
i) Oral intake of nutrients and fluids insufficient to sustain life;
ii) Continuing weight loss;
iii) Dehydration or hypovolemia;
iv) Absence of artificial feeding methods.

3. Patient must demonstrate both rapid progression of ALS and life threatening
complications.
a. Rapid progression of ALS, see 2.a above;
b. Life threatening complications as demonstrated by one of the following characteristics
occurring within the 12 months preceding initial hospice certification:
i) Recurrent aspiration pneumonia (with or without tube
feedings).

Here's the link if anyone wants to see the full document: http://webcsoh.alsa.org/site/DocServer/chapter_13_web_ready.pdf?docID=18267

 

[hope_faith]

My husband started receiving service from Hospice about one month ago. They are a great support system to have, and like Pamnandy said, it doesn't mean because Hospice is getting involved that your loved one is near the end. It's nice to know that help is only a phone call away.

 

[Al]

Thank you Stephanie. That was very useful information.

AL.

 

[hopeful warrior]

Thank you, Stephanie. I am glad to see this list printed out for us. Every bit of info. really helps me. I've saved it for reference.

 

[BethU]

Thanks for posting that, Stephanie. I think I read it when it first went up, but it was good to read it again.

My husband and I interviewed a local in-home hospice in June, and we were set to go ahead together, but my husband's doctor wants him to wait and see if he improves after recent surgery (we will find out about that next week) and I want to wait till my next clinic visit in September to make sure I have all the equipment I'll be needing. (I need a second leg brace asap for one thing. Took a whopper of a fall Thursday. Fortunately, I was able to break my fall with my face. :razz And also make sure I can continue to get meds prescribed through the clinic, and go to the clinic every three months. Just in case there's suddenly a cure for ALS. I want to make sure I hear about it. :lol:

The interviewer consulted with his office during our interview, and they decided they would categorize both of us as "debilitated" rather than specify me with ALS and him with Parkinson's/kidney failure. The ALS criteria are so specific, apparently it is easier to get approval for a generalized condition.

I don't know how diagnosing me as "debilitated" rather than with ALS would work out in practice. But one good thing is that apparently you can quit hospice at any time and rejoin later, so you can't get locked into it "prematurely." I understand some people have been on hospice for a year or more ... the doctor simply renews the request, and extensions are automatic. I am looking forward to it as I am sick of spending hours upon hours each week while my husband has the same painful or uncomfortable tests done over and over and over At this point, quality of life is my prime concern for both of us.

 

[pamnandy]

Beth, your positive attitude is amazes me. I must have missed posts from the past that have described your personal situation. I sure appreciate all the input you have out here, and how you are facing such decisions for not just yourself but your husband as well. Blessings to you both! Pam

 

[brooksea]

Sorry about your fall Beth! Good luck to you and your husband. I hope you can get the hospice thing worked out, so y'all don't have to worry so much. You have a lot of courage!