When do you call hospice?

Jamaica, this is actually much harder to think about than it is to accomplish! For my mom, who'd been in MC (from AL) for about 9 months before I became fed up with the fall-generated ER visits required by state law, but which she clearly didn't need. I was rereading Hank Dunn's "Hard Choices For Loving People" and ran across the concept of a "do not hospitalize" order. I spoke to the DON at the facility, who said the problem was,  law required them to call 911 if there was a fall in which the head was hit, whether the person appeared fine or not. She thought for about 1.5 seconds and said, "why don't you get hospice? We work with several if you want some phone numbers!" And just like that, my walking, talking, conversing, self-feeding, continent mom was right where we wanted her! The facility was now required To Call Hospice FIRST, and they'd make the determination jointly with family as to what to do in case of fall or other illness/injury. Mom was on hospice for 8 months, and they were a God-send, all the way to her "surprise! I'm gone!" death right in her own bed in her own room in MC. 

The reason I knew I wanted Mom on hospice was that MIL had followed the same path, although her physical burdens were always much greater than her dementia presentation. She was in her own home with 24/7 care the last 5 years of her life, and was accepted to hospice 18 months before her death in her own home. 

The benefits of having your own concierge case-mgr RN cannot be overstated. Medicare pays for so many things (this will vary from hospice to hospice)-- incontinence supplies, meds for the hospice-admission dx (MIL's nebulizer, three drugs for it, oxygen machine plus emergency bottles)-- all ordered and provided for by hospice. We had a social worker, and supposedly a chaplain although that position remained unfilled for most of Mom's tenure  we were given literature by Barbara Karnes, which is priceless. 

And you can stop hospice at any time. Your LO's location makes no difference to hospice. If there is intractable pain, such as cancer, many places offer a hospice house, or a hospice-dedicated wing in a hospital. There are no beeping squawking monitor machines nor irrelevant PA announcements.

I'd give a couple of local hospice organizations a call-- they are friendly compassionate folk, and in my (limited) experience, the business model was buried so deep that the only time it showed was when our RN snapped her fingers and said, "oxygen, (or hospital bed, or whatever) here, now!", and it was so in just an hour or two.

I would look at things like: losing weight, poor balance, incontinence, sleeping more. Just a deterioration of condition.

Doityourselfer- if your H is in stage 7 waiting for your LO to be bedbound + unable to feed himself is way past when you should contact hospice for an evaluation. (IMO).  Hospice help is not only for the patient, but for the family.   Hospice came + helped with showering, gave us equipment (hospital bed) + supplies (depends) that were paid for by Medicare. They sent a music therapist who sang + played the guitar for my mom + gave us insight into my mom’s condition, helped with death plans. 

At the point that I would not allow my mom to be transferred to a hospital for any reason for treatment + she refused all meds, she was evaluated + hospice came in to help.   I am being a broken record:  THere is no downside to bringing in hospice(that I can see) + no reason to delay having them come in if your LO meets the criteria for services.

Jamaica, I called Hospice when our home healthcare agency insisted on taking DW to the ER every time she refused to eat or drink. I wanted her to have & exercise that right. But she would have qualified before that occurred. Most folks wait too long to apply, and that's a shame. A lot of free help & benefits await.

Although admission requirements do vary somewhat by provider, in almost all cases (for a dementia admission) they will be looking for ANY symptoms of stage 7. The "six words or less" vocabulary isn't an absolute rule. DW's room-mate was dropped by one Hospice & qualified by another on the same day with the same symptoms. All providers arent equal. It pays to talk to those familiar with each (as clients or medical professionals).

Since it is usually the staff Hospice Dr. signing the admission papers, having a referral isnt often necessary. The staff Dr. doesn't need to visit personally except for re-admissions. And, as so many have already said, the benefits are numerous to patient & family alike. For one, my DME rental payments stopped. Hospice services & supplies are billed under Medicare Part A, meaning it won't cost you a dime. (Home healthcare, if Medicare qualified, is billed under Part B, usually meaning 20% copay.) 

One more thing: Any patient with a specific dementia dx will qualify for Palliative care, even if not for Hospice. In my market, the providers are one & the same, and switching between the two is usually seamless. One such provider told me they dont mind if you switch from one to to the other just to have a procedure done that Hospice disallows.

The type of services Hospice provide have been outlined from the other comments. But I will tell you my DH has been on Hospice for 15 months now and is still walking, ( although he uses the walls and furniture and we have a walker for outside the house), feeds himself when I serve him foods and cut them up for him, and still uses the toilet, although I have to show him where the bathroom is every time and sometimes actually assist in what he needs to do in using the toilet. But still wears normal underwear. I believe the reason he qualified for Hospice services was he could no longer shower and that he needs help with walking. He still talks a lot but it’s mostly words that do not make sense. After the first 6 months, he has to be recertified every 60 days but has always been approved. He is very slowly losing weight (approximately 2 pounds a month). They ask questions of him such as do you know what month it is, can you name the president , and what town is this. He cannot answer any of those questions correctly. But Hospice can certainly be for longer than the last 6 months of someone’s life.

My DH was just approved for hospice yesterday. I was surprised he would qualify because he has not lost much weight and is not yet having trouble swallowing, although I think it is coming soon as he has just started to eat much less and sleep 18 hours/day.

We had a referral from DH's PCP. He is completely unable to walk, which I think was important, and he could answer no questions from the hospice admissions nurse except for his name and date of birth. He answered every other question she asked repeating his birth year.

You may see my recent thread on this forum. There is excellent advice there!

The best advice I read here is that you can always ask for an evaluation.