Hospice...how to know when it's time to call?

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Michellesews

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Aug 30, 2015
Messages
100
Reason
Loved one DX
Diagnosis
09/2015
Country
Uni
State
TEXAS
City
El Paso
My PALS (husband) can no longer stand at all. He does not want a feeding tube or trach but uses a Trilogy. He says he's afraid of choking to death or starving to death. He can still eat but must do so very slowly. I don't want to jump the gun...but when is a good time to call in Hospice? Thanks in advance.

PS He is a veteran
 
Hi, Michelle,

It's like anything else you buy (pay for). You define the "good time." Is he maintaining his weight? Is he is in respiratory or other distress? These would be a couple of indications.

However, you might want to get major equipment needs taken care of before considering -- not sure how the VA handles this.

But if/as that is addressed, you can ask the clinic to write an order, have an agency come out and interview them as to what value they would add at this point, and what they would advise. See what you and he think.

Best,
Laurie
 
Good advice from Laurie. They will do in home evals as he progresses if necessary. A call to your team is in order
 
VA gave us so much equipment, it got in the way of walking through the living room.

Hospice was provided by a civilian company, and paid for by VA.
In our case, hospice provided a helper several hours a day. They put some meds including morphine in our fridge. We signed a contract saying that if there were a life-threatening emergency, we would NOT go to the ER.
Shortly after starting hospice, my PALS deteriorated, so the hospice provider started "CRISIS CARE" which gave us a nurse 24/7 in the house.
 
Thanks Laurie, Mike and Gooseberry. Yes we also are tripping over all the equipment. We do have a caregiver 5 times a week for 3 hours. She mainly gives him his shower. He confided that he's afraid of choking to death and/or starving to death. This is what made me wonder about Hospice. I told him they would keep him comfortable and he needn't worry. He doesn't want tubes that will only prolong the suffering. I feel the same way. He has lost a lot of weight and uses the Trilogy all night and often during the day. It probably isn't time yet...
 
Time for an anti-anxiety pill.
 
Just an FYI: My PALS FVC is less than 30%, which technically qualifies him for hospice. We are not needing it yet, but I contacted a couple of agencies just for information. One will not accept patients on a Trilogy.
 
And many will not accept one with a peg tube. We were told it was a good idea to get it started so we could decide if we liked the people being sent. It would give us a little time to get the right people in place if we started a bit early.

Also, money for this is a big deal with the VA. It is severely underfunded at some sites. If it is offered, I would begin even if it just gives you respite care for the cals.
 
People are more complex than "time for an anxiety pill" IMHO. Knowledge is often better than chemicals. It sounds like he doesn't want to read end of life stories here, but you can, and pass on the basics to the effect that he doesn't need to suffer.

Above all, the end of his life (that's when you stop measuring/counting food/liquids/drugs) is when he says it is; that is what I would reinforce since people read horror stories and don't perceive their rights as patients, whatever equipment they did or did not accept. It is more likely that he will experience air hunger that signals life's natural end before he actually chokes to death, and appetite loss kind of goes with that.

If he has difficulty with solid food and is losing weight, maybe time to jump-start some super-calorie/nutrient-packed smoothies, soups, whatever his best thickness/texture is. Eggs, protein powders, even peanut butter can be staple ingredients. Do a search here for some ideas. As others point out frequently, blenderizing "real food" can create a fairly easy-to-eat option, different every day.

Best,
Laurie
 
Hi Michele. My family didn't want to hear the word Hospice and it was a very difficult conversation to have to be able to do any planning. We first had a palliative care nurse come to do an assessment and she came out every six weeks to see if anything had changed enough to warrant bringing Hospice in. It was many months before they were called.

She was able to educate on things we weren't aware of such as the PALs can still leave the house if able to while being "on Hospice". Knowing that he could go to the store or a restaurant helped ease the transition.

There were also considerations around his feeding tube and Trilogy. We were fortunate that the local Hospice accepted patients with both but it's an important question.

My dad refused all medication until it was absolutely necessary but at least it was a phone call away.
 
Hi everyone i just called hospice in this week because it has gotten hard for me to care for my Pals his FVC last checked was 43 percent he has no feeding tube and he still eats regular food but very slow. His saliva has increased and choking has increased. He was not thrilled about hospice either but we had no choice.

They offer so many more services than just dealing with dying. You have to sign a DNR before you can be an inpatient he was not happy about that but you can tare it up once you leave. I need the respite so bad because i have hurt my back extremely bad. In my opinion calling in hospice as soon as they can be is a good thing to do.

They swoped out our non electric stuff for fully electric bed and hoyer where as it all was semi electric. 24hr on call Nurse im looking forward to a lil stressed being lifted. This has been my experience so far will keep you posted how it goes.
 
When you do call hospice agencies to interview ask if they have anyone experienced with ALS. My husband's breathing was still good when they started with us. It was a huge help as were anti-anxiety drugs. It does sound as if your husband is experiencing a lot of anxiety.
I wouldn't tear up a DNR because if you have to call the fire department or an ambulance they will insist on transporting him to a hospital. You could put it away if you could remember to get it out if you have to make any emergency calls.
I worry how you will get meds into your husband without a peg? Maybe Mike can comment on that.

Sending you support.

Sherry
 
Meds can be given by patch or IV :)
 
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