What are important questions to ask when picking a hospice agency?


I have dreaded this option but I know it's in my fathers best intrest to get hospice in the house ASAP once he is DC'ed from the hospital. I have been reading to many horror stories from some very reptiable media outlets on the money machine hospice has become over the past few years and could use some advice on what questions I need to ask.

Should I go with a larger corprate company or a smaller non for profit? What are the most important questions to ask and things to know when picking a hospice agency?

While I do have an older sister who helps out when she can and my mother who is in early 70's is finding this all very hard to accept so that leaves me doing most of the leg work in finding a hospice while also dealing with all his doctors and medical needs. Being the youngest I have quit my job and dipped into my savings to take on this roll to the best of my ablity not to be just a care giver but my fathers patent advocate as well. I feel it's an honnor to be able to be here for my father in this time of life and hope and pray G-d gives me many more years of caring for my father.

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Visit the facility, ask them to provide you with a copy of the medical standards, protocols, procedures, meet with the director/COO/CEO/medical director, check with the Community Health Center Accreditation (CHAP--www.chap.org) organization to see if they're accredited and whether or not they've been sanctioned/fined, etc. If and once you're enrolled, be assertive with staff, Medicare and any adjunct medical providers. If you have a relative or friend who has professional medical and/or social work experience/background, find out if you can get that person to assist you in advocating for the best care possible.

Medicare is a real pain in the ass once somebody's enrolled in hospice, BUT non-hospice medical providers CAN bill and get paid by Medicare IF they submit the correct insurance billing codes. A good hospice will know how to instruct those non-hospice providers if your loved one needs care aside from hospice services.

My father was in hospice care and died on 7/28/13. We had more than a few problems with his hospice provider and the last "event" may or may not have contributed to the time/day of his death. I share this as a cautionary tale.

On Thursday, 7/25, my father fell at home. I live two hours away from my parents and was not there when this happened. An unqualified person from hospice came to the house to check on his and told my mother and brother to transport my father to a local ER for an x-ray. This person did not want call an ambulance and left it to my 84 year old mother and my brother (who is not in the best of health himself) to get my father into the car and to the ER. When they got to the ER they told ER staff they wanted only an x-ray and that my father was a hospice patient. But no ER is going to JUST do an x-ray for an obviously very ill elderly man. No one from hospice called ahead to make arrangements. My father, who had congestive heart failure and relied on 4L of oxygen round the clock, was without oxygen for an undetermined amount of time (his own tank ran out during the ride to the ER, then he had to wait to be seen). He passed out, fell and hit his head while in the restroom, so the ER shifted into treatment and life-saving mode, as was necessary given the circumstances. He didn't hurt his head but did have a broken clavicle from the fall earlier in the day. He said he felt fine except for the pain he experienced when he tried to move his arm. Hospice and the ER decided to transport him, via ambulance, to the inpatient hospice facility for the weekend so assess how much home care he would need and how much mobility he had. He was in good spirits, oriented to person place time, and his appetite was great. We were making plans for how to care for him at home. When I walked into his hospice room to visit Sunday morning he had just died. Staff said they'd gotten him up to the bathroom to pee and wash up a little bit, gotten him back into bed and he ordered breakfast, then when they checked on him a few minutes later he was dead. It happened that fast.

My father was ready to go. But I think the events in the few days before his death sped up the process. Not only the injury but also the questionable medical care.

Medicare billing is NEVER NEVER NEVER an excuse for shitty medical care. Insist on your loved one receiving the services they deserve. Let the medical staff, whomever that might be, know that YOU KNOW there's a way they can bill and be reimbursed even tho your loved one is a hospice patient. The billing code is called a modifier and anyone with a functioning brain cell who works in Medicare billing knows this. The only reason many non-hospice providers make the claim that they have to charge your for services because Medicare won't pay them is solely because they really don't want to accept Medicare reimbursement rates. Don't let them bully you into that. That's the providers' problem, not yours. Be sure to tell them that.
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Dadsbaby - Ferris & Carol have brought up a good point....is your dad really at the point of needing hospice? Or is it that you all are overwhelmed with his needs?

There are 2 main systems to determine hospice eligibility. My experience is that there are 2 MD's required to sign-off on hospice: their personal MD and then the MD affliated with the hospice group. Once on hospice, the MD with the hospice group will become the primary MD for them OR will work in co-ordination with the MD at the NH if they are in a NH.

TEST #1 - Functional Assessment Staging Test (FAST)

1. No difficulties;
2. Subjective forgetfulness;
3. Decreased job functioning and organizational capacity;
4. Difficulty with complex tasks and instrumental ADLs;
5. Requires supervision with ADLs;
6. Impaired ADLs, with incontinence;

7. A. Ability to speak limited to six words & B. Ability to speak limited to single word
& C. Loss of ambulation
& D. Inability to sit & E. Inability to smile &
F. Inability to hold head up

The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system, to determine hospice eligibility. The FAST identifies progressive steps and sub-steps of functional decline. NHPCO guidelines state that a FAST stage 7A is appropriate for hospice enrollment, based on an expected six month or less prognosis, if the patient also exhibits one or more specific dementia-related co-morbidities (aspiration, upper urinary tract infection, sepsis, multiple stage 3-4 ulcers, persistent fever, weight loss of less than 10% within six months).

TEST #2 - Mortality Risk Index Score (Mitchell points & risk):
1.9 Complete dependence with ADLs;
1.9 Male gender; 1.7 Cancer; 1.6 Congestive heart failure; 1.5 Bowel incontinence; 1.6 O2 therapy needed w/in 14 days;
1.5 Shortness of breath; 1.5 less than 25% of food eaten at most meals;
1.5 Unstable medical condition; 1.5 Bedfast; 1.4 Age over 83 years; 1.4 Not awake most of the day. You add those up and get a score.

Risk estimate of death within 6 months
(based on Mitchell score):
Score Risk %

0 8.9

1-2 10.8

3-5 23.2

6-8 40.4

9-11 57.0

= 12 70.0

My mom was evaluated by Mitchell & got a 12.3 score. She is bedfast. Mitchell seems to be used more as its less subjective and more exacting. Good luck.
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you can recall hospice by signing papers revoking the service. I called the ambulance and signed the papers . Therefore it is covered . Hospice is not for everyone and there are different companies that provide services - not all are alike. I had a problem with waiting for a nurse to come from 45 minutes away if my mother got into breathing problems. She was at end stage copd and 45 minutes
is forever when your loved one is struggling to breathe . I was told I could give her another dose of morphine but if my mother has passed away I would have felt guilty that I over medicated her.
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I must admit, until Ferris mentioned it, I haven't noticed that you mentioned taking care of your dad for many years to come. So it is important that you realize the doctor must certify in his or her opinion that your dad only has 6 months to live. Some folks are put on hospice, then have a remarkable recovery and go off of hospice. You haven't shared your father's age or his medical condition, so it may be that he is in a fragile state right now and that you expect him to recover? Whichever it is, and I wish you the best, just be sure to write down your questions ahead of time, have a thorough meeting and get any promises in writing.
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Hospice is generally meant for patients who have six or less months to live. Your expectations of "many years" is not consistent with the question you asked. A non-profit hospice does NOT CHARGE for services, in fact most do not charge, unless this is their for-profit business. The role you have assumed is admirable, however, you sound young (you don't say) and perhaps need the guidance of an agency who is licensed with professionals to guide you in the right direction. As a nurse and social worker, it would benefit you greatly to have your sister, your mother and yourself speak with this agency (it could be the social worker at your father's hospital) to see about your options. Do not try and take on this task alone. There are lots of professionals to help! Good luck.
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It's important to realize that Hospice will make them comfortable, but there will be no calling 911 and rushing off to the hospital. The patient has reached the point where further intervention will only prolong the suffering. It's not about "owning" you, it's about allowing Hospice to make rational decisions when the family is too emotionally distraught to do so. It's about the personal dignity of the patient himself, relief from pain, relief from depression and anxiety.
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corrections ...

here in California at least, SUBLINGUAL and liquid morphine is allowed

if you've never been THROUGH it before
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My mom had drug induced dementia. Near the end, she was taken to the hospital on a Monday, diagnosed with pneumonia, treated until Wednesday, evaluated and approved for hospice and moved on Thursday. By the time she arrived at the board & care, the hospice RN had already re evaluated her as having breathing problems and congestive heart failure. She was deemed to need "critical care" at which time we were immediately given 24 hr. round the clock care of LVNs. They tried in the beginning to suction her to help her be more comfortable but she begged them to stop. So all that was left was to give her progressively higher doses of sublingual morphine and she passed on the following Tuesday.

I would say, one of the most important thing for the Hospices to know whether they provide 24 hour critical care because they don't all do so. We located her at a costly board and care where hospice could function but had we known she was going to receive 24 hour critical care, we were told we could have brought her home. Here in California at least, subway in full or liquid morphine is allowed to be dispensed in the home. The only reason we didn't bring her home was because we couldn't easily provide 24 hour care.

If you've never been to it before, I can tell you you learn something new every time. The best thing to do is have meetings and ask questions. Just like with car salesman, be sure what you're told in the meetings are in black and white on the contract you sign.
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It's really important that you understand what palliative or comfort care is and isn't
and that you & all family are in agreement on hospice & it's limitations. Also that your dad medically is at the point of his MD writing the orders for hospice evaluation and that dad will pass the evaluation hospice does independently.

My MIL was on hospice after sepsis complications from surgery and congestive heart failure. Hospice was wonderful. Was in a free-standing hospice facility in the Panhandle. Maybe 3 weeks total.She was a very difficult person too.

My mom was evaluated for hospice when she was in her NH #1 - she had gone through a very bad patch, with back to back TIAs, persistent fever and more than 10% weight loss within 30 days - got evaluated and accepted. Then rallied, gained weight and got out of hospice within the 30 day window at the beginning of hospice. The hospice MD approved her but her NH MD medical director didn’t… so no hospice. She moved to NH # 2 about a year & 1/2 ago and fell earlier this summer shattering her hip. Mom is now bedfast & on hospice. She is is still within her 1st 90 hospice period for Medicare. Hospice # 1 was less than ideal (like minimal communication) and I switched her to hospice # 2 with no problems. Huge butt difference in that they brought in a totally different bed with a "divot" pressure mattress bed (so that she can't easily get out of the bed, as she has dementia and doesn't realize that she cannot walk anymore....) and they brought in 2 extra team members to get her transferred from bed to bed; also the bed is pretty low to the floor (the old was was just the regular NH bed with an breathing air mattress); and they brought in a petit sized "geri chair" (my mom is tiny), so she has actually been able to leave her room (yeah!).... all of which is billed to Medicare and the hospice group has 24/7 on-call available. They also went over all of my mom's funeral home items with me, rather than just letting it fall to the NH to be the one to call the FH. This hospice group also has a chaplain in it's team. Oh the team is: 1 RN who comes in 2X a week; a CNA 5X a week; social worker 1X a week for the first 30 days then can be less; chaplain, I'm not sure of their schedule. And most importantly, I have email addresses to contact them & they contact me via email.
You're at home, so this is not so much of an issue but for me was a huge problem.

What I've found is not all hospice are alike. They are all alike in that MediCARE will pay for hospice care - this would be the nursing/staff costs, medicines and other therapies needed for comfort care. This usually means having a hospice staff come in 2 to 5 times a week (this seems to depend on what the diseases are) to monitor their health status. This could be an RN, a LVN or CNA – ask what level of education& medical experience or certification your mom’s person will be.
Also what they do regarding social worker - if they have a social worker on staff and dad will need to transition to a NH, the hospice SW can be especially helpful in having that happen quickly.

However, MediCARE does not cover any of the room & board aspect of their care. The care needed to bathe, help with daily functions like dressing/ eating/ bathroom, simple wound care is usually NOT done by hospice unless it is set up to be medically necessary by the medical care team and approved by MediCARE. Since my mom is bedfast, she gets hospice bath 3X a week done by the CNA. Also, they have her with terry bibs for eating, so she is lots neater & cleaner with this hospice group. Sometimes it's the simple things,.......sigh!

If your elder is at a home (theirs or yours) someone will need to do the things that hospice will not and private pay for it unless you or family do it all. What seems to happen is that they eventually go to a NH as they need 24/7 oversight and it just is too much for the family to do both emotionally and at the level of detail needed. This is what happened with my MIL, she was in the NH for a very short while, then into hospital (this was really about evaluating her not doing any intervention), then to a separate hospice facility adjacent.

One thing that hospice does pay for is RESPITE CARE in an in-patient facility IF the medical care team deems it necessary. This should be something you look into to give you a break from all this. My understanding is that respite care is often prescribed if the home has to retrofitted for the patient and they need to be gone for a few days to allow for beds, etc. to come in, doors changed, etc. Ask about this.

Not all hospice companies carry the more heavy duty medications on them. Some are about basic low level monitoring and comfort care. There seems to be just a few who are have licensed personnel who carry pain meds with them. VITAS & Compassus are big hospice co. who have staff that can do this. IF your dad might be the type of patient who needs serious pain management then this a ? for you to ask about. One big reason imho why family move them into a facility (either a NH or a free-standing hospice one) is so that pain management can be done in the controlled situation required for class 4 drugs that can really only happen in a NH or hospice facility. This is really true for cancer patients.

There seem to be quite a few mom & pop hospice businesses out there, where one of them is a LVN or former military medic. Whatever you do make sure they are Medicare certified for hospice care and have the financial ability to order and get the equipment (beds, oxygen on wheels, geri-chair, etc) needed ASAP. What I have heard is that the smaller ones can take a couple of weeks for stuff.

Some hospitals have a hospice wing. You do want to ask the company that you use where your dad would be transferred to if that is ever needed and if they have a relationship with the hospital to make it easier to do. VITAS actually has a IN-PATIENT hospice facility in the town where my mom lives. My aunt went to it. But my mom is on orders to stay at the NH unless she gets something contagious.

The other thing is that once they go on hospice, the rules are pretty strict on seeing doctors. Dad pretty well has to be seen by the MD’s affiliated with hospice. If he goes to see his old MD or you take him to the ER or do anything that promotes "curing" her, she can be discharged from hospice. Medicare can decline to pay for that doctor visit, hospital or ER cost. Everything medical has to go thru the hospice. This can be hard for family to go along with but that is what the hospice system is about. If you do something that is out of compliance for hospice, Medicare will deny paying the claim too. So you cannot call EMS to take dad to the hospital and expect Medicare to pay. Good Luck, it can be a brutal adjustment.
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Am glad someone brought this topic up as have just had to sign my mom up for hospice as she is bedridden, incontinent, has COPD, emphysema, diabetes and heart problems. Also my dad is on a walker and not doing so good. This was the last thing I wanted to do and have tried to avoid it for the longest time, but couldn't do it all on my own anymore. They just accepted her a couple days ago and am trying not to beat myself up about it. Am trying to accept it and look at it in a positive way, but it's not easy. Think maybe my dad is the same way and since he is not doing well either, he isn't taking it all that good, but am hoping it turn out to be more of a help and relief. Do other caregivers go through these same feelings? Thanks
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