What should I be looking for when evaluating a Hospice care plan?

As with any business there are good and bad.
A good Hospice is a wonderful service. A bad one could be a nightmare. The same with any service.
In reality a person kept at home and not in a hospital is less expensive for Medicare or any insurance for that matter. It is also less expensive for the family. And the patient is healthier and better cared for in home than in a hospital.
Research the hospice that you are looking into, and contact several to determine what one would be the right "fit". And once on Hospice if you find it is not what was expected or you are unhappy you can always go off hospice or go to another hospice.

There are good - and - bad hospices out there. My mother's own physician - who treats only homebound seniors - has told me it's well-known that hospice is a big-time money maker. Medical care in general is no different than other professions; sometimes you get good, sometimes get bad. Two examples: A highly reputable and very large hospice in our area provided exceptional care to my mother - however - didn't consult with me (I'm her only POA) before submitting the paperwork for a renewal - when - my she fully recovered and was no longer deemed medically necessary to be on hospice for the condition that she was originally admitted for. My mother was originally admitted for heart failure due to sepsis. She recovered fully from the infection. This hospice then attempted renew her under dementia. I told them forget it and to cancel the renewal. Dementia can last for years, and frankly, if every elderly patient in the country was admitted to hospice for only dementia and no other health condition, Medicare will go bankrupt within a few years given the rising diagnosis of dementia and these patients living longer and longer. This hospice was charging Medicare $4.5K/month, but the covered supplies were very poor quality (I buy much better stuff on Amazon), the "relief" support was only two hours - a week, social worker and nurse case manager coming in once a week for a 15 min visit each, a CNA that came only twice a week for a bed bath...all of this for 4.5K/month. I'm still the one that does all of the majority of care. I can get full-time in home care at 2K/month. My mother's doctor visits once a month - and this is fully covered by Medicare. If there's an emergency, he would come out sooner. He can also order mobile labs, x-rays, etc...all covered by Medicare. A second example: My father was admitted to a smaller, lesser known hospice. During this time they charged for expenses that clearly didn't happen as I reviewed the bills. However, I was too busy caring for both parents to discuss this issue with the billing department. Just last year, it was reported in our local news that this particular hospice was fined by the federal government for several million dollars - for fraudulent billing. This hospice was closed for good.

I’ve actually heard a bunch of horror storeies about hospices, how they only care about money, extra billing charges, etc. My mom went on hospice care for 12 mos last year, and I used Grace to compare a bunch of hospices. Like Grandma1954 (this is a real username) said, you have to compare the prices first!! I had all info on all the hospices and found one that I could actually afford (4k / mo in pasadena...all billed to Medicare).

Hospice was a Lifesaver for our Mother and the family. It allowed our Mom to come home for the last 5 months of her life, all the while, supported by a fantastic team of Drs, Nurses, bath aids, nutritionists, home health aides, medical equipment, coordinated clergy from our parish, and mental health professionals who helped us all along the way. My Mom had had uterine cancer, she had had a radical hysterectomy, followed by 6-8 weeks of Radiation, and still the cancer was so aggressive, it had metastasized to her pelvic bones, eroding them away, and she was in extraordinary pain, requiring heavy duty IV Morphine. Having hospice allowed us to enjoy our Mom in my sisters home while they did the difficult work of keeping her near pain free, but comfortable being constantly around the family and friends. Having her home was still a lot of work, and thankfully we had six of us kids, all taking part in her care, and we worked together like a well oiled machine, with everyone participating on a schedule, even the 12 adult grandchildren. It was only in the final 8 days of our Mom's life, that the nurse said that it's time our Mom go to the Hospice Hospital, and in Seattle, there is a specific hospital that does this exclusively, and the care there was impecable. There were physical changes that she could see, that we her children were too emotionally distraught to see, and her guidance was spot on, as within 2 days, our Mom so obviously was shutting down, her organs were shutting down, she began to slip in and out of consciousness, and soon went into a coma like state, but in no time did she ever appear to be in pain, which was our biggest concern. We knew we were losing her, we just wanted her to go in peace, and after 6 days unconscious, she did. Each of us took turn sleeping the night in her room with her, ao that she would never be alone, and the very morning she passed away, she woke up, and was staring at my brother, but unable to speak. It was clear, she was saying her goodbyes, and this brother quickly got each of us on the phone so that we could tell her how much we Loved her, and to hold on, as we all rushed down to see her. Thankfully she was still semi awake, and we were able to say our last goodbyes once more. And like that she drifted off to forever sleep, and joined our Father in Heaven. The Hospice Nurses allowed us all the time we needed, then asked us to go and have cofee in their solarium, where we had a good family cry, and we called the mortuary to come pick her up. The Hospice team, removed all of the medical equipment from her room, her IV, and placed the most beautiful quilt over her with a gorgeous dove on it, that another family member had donated. It was all very peaceful and serene, and she looked beautiful. Once her body was taken away, we all took her flowers to our Fathers grave, and we saw the most unusual and most beautiful cloud formation in the sky as a clear sign, that our parents were together at last, as it was supposed to be, it was remarkable is all that I can say. I'll never get over how hospice treated our family, and their follow up was comforting too. I hope that everyone who needs hospice takes advantage of their services, they were wonderful to us!

When a patient dies and the family has no arrangements, it means they don't accept the death. The hospital is required by law to immediately notify the county health department of an "unclaimed body". Immediately.

Nasmir: Please understand that Hospice is a wonderful thing for the caregiver. Do not post scary thoughts.

vbadua: See below-

Hospice FAQs

When is the right time to ask about hospice?
Now is the best time to learn more about hospice and ask questions about what to expect from hospice services. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.

Nasmir - once deceased, the body must be removed ASAP. It cannot be allowed to linger on a floor while family figures out the wtf's on funeral & burial. Most hospitals have a mini morgue to hold if there's something that requires a body to remain. But otherwise, it needs to be transferred ASAP to a FH or crematorium.

Estatic..no way! At $ 155 a day R&B reinbursement rate, the NH isn't making $. If it only has Medicaid beds, it can't stay afloat. 24/7 care with all types of professional & support staff plus meals @ $ 155 a day = NO Profit. A Nh needs a mix of private pay, Medicare & Medicaid. $ 155 a day is a midrange hotel rate and there's no medical care.

$ 4500 a mo for hospice care is a bargain. It's basically $ 1,200 a week to pay for all professional, coordination of services, fronting of equipment leasing & be on call 24/7. Plus dealing with families.....For small hospice groups, I'd bet their profit margin is pretty narrow. If it was lucrative, there would be hospice vendors & MD doing hospice coming out of the woodwork. But I don't think that's the case especially for MDs. In 1998, about 3,200 and In 2008 there were about 4,000 Medicare certified hospices. Not much increase.

Now AL, imho that's the profit center as its almost always private pay or some mix of private, VA A&A or LTC insurance & done by contract. AL = Profit$

Gma54, I agree with you. Having Hospice at my mom's final month at home was a blessing. They helped my father with many things. They were at the house every other day until the last week when someone came every day. Nicest, most professional people I have met in the medical field.

If you are planning to make meaningful end-of-life choices,
rather than just waiting for death to come,
then you should ask about which medical methods of managing dying
are approved and used in that hospice program:

Namir...Please do not paint all Hospice groups or hospitals with the same broad brush.
This is one of the reasons that I said to call several Hospice groups and interview them just like you would for any service.
Would you go to a new dentist and not ask how much a cleaning is? How billing is handled? What insurance they take?
Would you go to a new salon and ask for a cut and color and not ask how much it will cost?
The Hospice group that I/we are with is great. They will never turn away a patient if the patient can not afford to pay.
In most cases insurance will cover all the hospice costs as well as Medicare.
I do not know what hospice or hospital you dealt with but it does not sound like the end of the story. (as Paul Harvey used to say..."the rest of the story")
So again please do not scare people encourage education about a service. Far too many people can use Hospice and fail to, final days can be made much more comfortable at home rather than in a hospital.

Arianne - i ahould have more correctly written Black box warnings /BBWs or black box drugs are prescription drugs that carry a warning that have a black "box" or border on the RX oo its package insert. BBW means FDA considers it to have significant risk or serious or life threatening adverse effects. Because of this there is a liability in administration or in leaving meds to be administered. Some hospice want to lessen this so have patients in a controlled setting like a hospice unit or NH if there's a lot of bbw involved.

The serious pain meds are black box. The fentanyl lollipops are a scary example as its so powerful that the medication can transfer by just handling the discarded wrapping or stick - children have died from touching fentanyl packaging. But fentanyl hits a certain type of pain like no other so it's used.

My personal experience with a bbd was with Cipro. We went through hurricane Katrina (2005) & if you were coming into the zone afterwards to clean up, find stuff, meet adjusters, etc., well everybody got tetanus shots & doc's were giving antibiotics especially Cipro just to take to lessen potential infections. Both hubs & I each had RXs for Cipro. Well 3 healthy & fit guys we knew got total tendon ruptures. Others too. Statistically this doesn't make sense. It was the cipro & FDA bbw it like in 2010 for this effect. Scary & ever since I look for BBW on all meds.

I have my husband on Hospice.
The CNA comes in now 3 times a week to bathe and help dress him and will help with breakfast. I do these alone the other 4 days a week.
The nurse comes in 1 time a week and checks vitals and orders medications.
There is a Social Worker that comes in 1 time a month
There is a Chaplain that is available if I should need or want.
All my supplies are provided through hospice. Gloves, briefs, under pads, wipes and ointments. If I choose to use another product I purchase that myself.
Any medication that is needed is provided by hospice, if it is "formulary" meaning it is needed as a result of his condition. If I need a product like Mirialax or a laxative I have to get that. If he needs an anti-fungal for athletes foot I have to get that as well.
I have a hoyer lift and a hospital bed a Broda Chair (kind of like a wheel chair but that is like saying a Cadillac is kind of like a car)

All I can say is call around to the various Hospice that are in your area and interview them. Call your Doctors office and ask if they have a recommendation for one in particular.

And the important thing...Once you go on Hospice if you do not like the particular Hospice you can change or you can choose to go off Hospice.

Most Hospice will strive to keep the patient in the home but if there is uncontrolled pain there are patient units, some are in hospitals some in Hospice owned buildings and the patient can be taken to the unit and pain controlled. Quite often the person will pass there sometimes they are able to return home. And while on Hospice you are able to use a respite care where the patient will be brought to the patient unit and they can stay there for a period of time to give you a break.

I can not say enough good things about the Hospice group that we are with. I have been so impressed with them that one of the days I do have a caregiver helping me I choose to volunteer a few hours working in the office.

Just call and do an interview just like you would for anyone that would come into the home to help you out.

igloo572 -- I learned a lot about hospice from your post. What are black box drugs?

Also I'd like to add for my moms 18 mos of hospice care, Medicare paid an average of $4,500 each month to the hospice group. Her room & board at the NH was paid by medicaid at TX preset R&B medicaid rate of about $ 155 a day - which is one of the lowest day rates in the US.

Hospice has to be approved by Medicare. Their doctor will have to write orders for a hospice evaluation and the MD of the hospice group will do an evaluation on whether they qualify. The evaluation could be pretty pro forma - this was the situation for my mom who was already in a NH and hospice had been discussed at a prior care plan meeting; if they are currently hospitalzed the attending will put in for hospice consult; or they they are still living at home it could mean their health info & orders for hospice consult is sent by their old MD over to the hospice group and then hospice sends a team (could be the MD & a RN or RN & hospice SW) to do the evaluation. There is a point system that hospice uses for evaluations. Like being bedfast is a set # of points.

As hospice is Medicare benefit, in theory it's self-directed so you can select the vendor. There's all types...smallish mom & pop hospice to the big national group like VITAS & Compassus.

personally I think what group is best should factor in what the probable path is for their disease. Some hospice have a free standing hospice only center where those needing a more intensive or higher level of care can go or transfer into as their disease progresses. In my late moms city, VITAS has this at what was the old women's & children's hospital & a smaller unit adjacent to a NH; my aunt went into the bigger one post hospitalization. My mil went into something similar in her city as she was extremely septic and needing higher level of care. If they are needing a mix of adminstrered black box drugs, smaller hospice groups may not have the "go to private homes" staff that carry the BBD routinely. If they have a scary unresponsive contagion (like MRSA) or are needing involved pain management (like fentanyl & IV opioids), not all hospice groups have staff trained for at home hospice care at this level so think IF that could be needed. A hospice may suggest they are placed in a NH or hospice facility if care management is complicated.

My mom was on hospice for 18 mos at a NH & her care was the usual comfort care with nothing extraordinary. Just a prolonged shut down. A self mummification of sorts. Hospice care staff came in 3x a week and last month 4x a week; SW & spritual once or twice a mo. Hospice ordered specialized bed & mattress; a Geri chair & Geri bathing chair (this was especially nice); disposable feeding bibs; high protein nutritionals (twin cal with probiotics). Hospice was great as they totally worked well with NH staff. NH often just love hospice residents as it provides for extra hands for care. Now I did, as my moms DPOA, switch hospice vendors within the initial 90 days to one that did email & Skype but more importantly was more into the long view. Very simple paperwork to switch.

Good luck in your decision making.

Find out whether the patient is eligible to live in a hospice facility or have home hospice services. Ask what provision they make if the patient has a medical emergency at night and whether you should call hospice or paramedics if the patient falls and whether hospice delivers hospice-related medications to the home or gives the caregiver a prescription to be filled. Also whether they provide a hospital bed, oxygen and other equipment when medically necessary. Ask how often a doctor will visit the patient and an aide will come to shower or bathe the patient.
In my husband's case, a doctor visited only to determine whether my husband had stabilized enough to be taken off hospice care. I felt threatened by this, but he remained on home hospice care until he was sent to a nursing home. Find out whether hospice will guide you through the nursing home application process if needed. In my case, because I'm in my 80s, the nurse and social worker visited weekly. At that time, we had only one hospice provider in our city. Now there are two.