When do you call hospice?

Jamaicabound

I know my DH is not there yet but he is very advanced and progressing very quickly. He is not bed ridden and my intent is to keep him home but are there signs to look for as far as calling hospice.  I'm sorry if this seems like a stupid question but I am curious to know how and when others handled this. Thanks to all of you.

Doityourselfer

We are not at that point yet either.  My husband is early stage 7 Alzheimer's.   I plan to contact hospice when he is unable to feed himself and when he is unable to walk.

zauberflote

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.

zauberflote

Would also like to add that many people have the misconception that their LO must be within scant weeks of death, and that hospice care somehow hastens death. One thing I read was about "the surprise question". Drs may ask themselves not, is this person going to die in 6 months, but rather, would I be surprised if this person did die within 6 months. Dementia is fatal. Often the LO's quality of life can improve on hospice, because family has chosen (if they so desire) to stop things like BP and cholesterol meds, and others with undesirable side-effects. 

People also believe the worst of that end-of-life morphine. The medical aspect of the morphine seems to me to be that as a general rule, the LO is started off on the tiniest possible dose, which can be sufficient all the way to the end. One can see the LO's furrowed, in-pain face, and contracted, irritable body, relax into peaceful sleep, from which the LO can generally be roused until that active dying starts. My view of the morphine, shaped by my reading of end-of-life literature and personal experience, is that the morphine allows the dying body to relax enough that the mind and spirit can make the choices they wish to, without having to fight the body. You can always refuse morphine and ativan, there is zero coercion in my experience. 

terei

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.

Cynbar

The only downside to calling in hospice would be that it is comfort care only. It is not curative. For the most part, hospice patients are not hospitalized for a problem, they are treated at home. There are no more tests like CT scans or MRIs, no more treatments like radiation or chemotherapy. Patients don't continue dialysis if they are in kidney failure. Therapies like physical therapy are discontinued (except for a possible safety evaluation, usually 1 visit.). There are some exceptions, occasionally a person would continue a treatment like radiation for comfort, but generally not. And, sometimes something comes up that is unrelated to the hospice diagnosis and must be investigated or treated, such as a broken bone. But for the most part, patient and family need to commit to the end of all efforts to get better. Some people are not ready for that yet, and some never will be. It is true that you can revoke hospice, get something like a MRI, then go back on, but that is not the intent and can't be done repeatedly. Hospice patients need to be onboard with hospice philosophy.

feudman

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.