My Mom has been on hospice care for over 2 yrs. I thought it was only if you have 6 mos. to live?

Your case is very unusual, but it does not sound like Hospice if she is going to the ER for x-rays. On Hospice you do not go for further interventions of any kind. Your MD is the Hospice MD, your old primary is out of the picture.

I ve heard of people staying in hospice for that long but also you can go out of hospice as well so maybe she's out of hospice. Sounds like she should be in a nursing home.

This is unusual. Many people do get better on hospice (once they are off medications that were causing issues) but then they go off of the hospice program

Since they are keeping her on hospice care, she will receive only comfort care, however. That means no treatment for her health issues unless the issues are causing pain. They are likely giving her pain meds for any discomfort.

However, pain is the only thing that is treated by hospice. The idea is to let nature take its course. If you want it done differently, talk to the doctor. You can take her off of hospice.

Take care,
Carol

Is she a Hospice patient or a Palliative Care Patient? PC patients are seen by the Hospice staff but are also allowed to seek extra care such as x-rays and such. Also, the AL facility may be having her get the x-rays to make sure she has not hurt her head when she has fallen. Those may be unrelated to Hospice. Talk with the Hospice staff and find out exactly what's going on with her and her level of care. In answer to Pamstegma, many patients keep their own physician unless to do so would cause more hardship. If she is home or nursing home bound, they usually switch to the Hospice MD because they see them wherever they are (home visits) and regular MDs don't make housecalls. It sounds like you have a lot of questions that need answering, so talk with the Hospice RN or Social Worker.

By the way, a person can be in Hospice care for as long as they qualify, which on rare occasions can be years. I am a retired Hospice Chaplain and I had one patient for over three years. It was clear that she qualified because she had breast cancer and was gradually declining. It just took her longer than most people. Ask your questions and you will get your answers from Hospice.

My husband in is hospice care. They tell me they send mobile x-ray units if needed after, say, a fall rather than send the patient to the hospital. From a pain management standpoint, it could be necessary to know the cause of the pain to treat it properly. He can be taken to other providers, such as a dentist; but hospice does not provide that.

Misconceptions about Hospice and Palliative Care
Misconception Reality
Hospice makes death come sooner.
Hospice neither hastens nor postpones dying. The aim is to improve the quality of remaining life so patients can enjoy time with family and friends and experience a natural, pain-free death. In some cases, hospice care can extend life.
Hospice is giving up hope; it’s better to fight for life.
Most terminally ill patients experience less anxiety by refocusing hope on what might be realistically achieved in the time remaining. If continuing uncomfortable and painful curative treatment for an illness is fruitless, hospice patients benefit more from having their symptoms treated instead.
A hospice patient who shows signs of recovery can’t return to regular medical treatment.
If a patient’s condition improves, they can be discharged from hospice and return to curative treatment, or resume their daily lives. If need be, they can later return to hospice care.
A hospice patient can’t change his or her mind and return to curative treatment even if their prognosis hasn’t changed.
A patient can go on and off hospice care as needed—or if they change their mind and decide to return to curative treatment. They may also enter hospital for certain types of treatment if it involves improving their quality of life.
Hospice care is limited to a maximum of six months.
In the U.S., many insurance companies, as well as the Medicare Hospice Benefit, require that a terminally ill patient has a prognosis of six months or less to start hospice, but a terminally-ill patient can receive hospice care for as long as necessary.

My husband was under hospice care for two years. First at home, where I was his primary caregiver, and then in a nursing home. Who recommended hospice and signed an agreement with them. Was it you? Do you and your husband have a hospice social worker? Does a hospice nurse visit your husband in the AL?

Generally it's 6 months to a year. But it a guessing game that most of the time the doctors get right. My mom after she was hospitalize in 2014 I was told she had a year to live. I tried to get hospice but did not met their guidelines. In 2015 she was in three nursing homes for rehabilitation. Each time she was still denied hospice. In December she had a major fall and was admitted in the third nursing home. She was not improving and one the 30th she slipped into a coma. She awoke three days later. I was told she was in frail health . One doctor even accused me trying to kill her by following her wishes on a dnr. She still did not qualify for hospice but was placed in an acute care facility. Less than two weeks she was finally breathing with a bipap and was looking at being sent back to the nursing home. The next day she passed away. Maybe it how a doctor saw her or maybe your mom health has improved. Either way just cherish the time you have with her.

that is not true that hospice doesn't treat new conditions if the patient has a UTI or any type of infection they will treat with antibiotics, if you fall and need x-rays you will get them. Yes hospice is comfort care but they will treat some things. My mom has been under hospice care for almost 2 years she continues to decline at a very slow rate but thank god for hospice. During this time she has had blood tests and urine tests all taken at home and treated.

My mother was put on hospice twice, rallied around and taken off. I went to the nursing home and personally fed her (which took about two hours), and improved her weight. So she last another 2 years in that state, but anyone with dementia is in a "terminal" state and no one knows exactly when one will die.

My mom has been in hospice for 6 months. They changed her meds and she started doing better. Gained some weight. Still has dementia and CHF. Due to her CHF diagnosis she qualifies for hospice care. They have programs for people with cardiac problems that will most likely eventually lead to their death. Her hemoglobin is very low and she is slowly declining. She h as an aide 1 hour a day 5 times a week. The nurse sees her weekly and they do blood work and follow her weight. She no longer gets blood transfusions. If she gets an infection (thought she had pneumonia) they talked to us about antibiotics. We said yes and she got them and a portable xray at the nursing home. Everything is open to discussion with their expert input. We are very pleased with them and I truly feel that they have improved the quality of the life she has left. She gets a massage twice a month; and music therapy. They have a social worker if we need one. However, she is slowly going down hill. Please keep her in your good thoughts.

Dragonbait --

It's good that you learned, "They tell me they send mobile x-ray units if needed after, say, a fall rather than send the patient to the hospital." After my husband fell in the nursing home and broke a femur, I was given a choice of sending him to a hospital for surgery or keeping him in the nursing home "to let it heal." I knew he might not survive general anesthesia, and elected to have him remain in the nursing home. Although he had Alzheimer's, I believe he understood the choice I had made, and agreed with it. He died peacefully four months later. I feel that the choice I was given was a blessing.

Luthel--
I am not trying to start anything here, but you have a few "facts" wrong.
Hospice lasts as long as needed. And you can "recover" from hospice to palliative care, which is simply keeping someone comfortable --through medications for pain/ massage/ physical therapy. Many options.

Hospice DOES NOT hasten death. It makes this natural process easier to cope with. And for some people, "fighting death" isn't rewarding, not pleasant to be a part of and inevitably, they still die, sometimes leaving a LOT of anger and pain behind them for family members who had a different "plan". Each person should make clear (when they are able) to decide how much they plan to "endure" before needing hospice.

Palliative care is ongoing TX. Hospice is usually considered end of life, but end of life can take a long time.

I am sure that by placing my dad in hospice he may have died a day or two earlier than if we'd had IV fluids, tube feeding, ventilators breathing for him--but it's not what he chose. Hospice didn't hasten his death. It allowed it to go calmly, painlessly, and with dignity. Palliative care for the year prior kept him calm, as pain free as possible and moving as much as he chose.

Mom has ongoing pain from 40+ yrs of rheumatoid arthritis, lupus, gout fibromyalgia, osteoarthritis, plus other serious medical conditions...has Alzheimers with vascular component in moderate to severe stages...she is reluctant to try and help herself for many years and therefore is quite debilitated. She can still move around but with difficulty...she has now been referred to Palliative Care...what can I expect ??? Her rheumatologist suggested perhaps if therapy doesn't help since she is so reluctant to do any of it, if stronger meds at a very low dose would ease her overall pain ??? What is all involved with working with Palliative Care since is not for a terminal (tho painful) conditions ??? Just looking for a little info....thanks:)

My mother was on Hospice for a year and a half. It was called comfort care. Hospice had to send her to the hospital when she fell and her skin popped open like a ripe tomato. Mother was 96 when she entered the program. They took care of her UTIs and any other problems that came up. I no longer had the ER runs and drug store RX purchases. They provided all her incontenant supplies.

Mother was not rushed to death. She was allowed to pass wrapped in the comfort they supplied. I was allowed to be just the daughter again, and they helped me adjust to being that daughter. It was a year and a half journey while my mother slipped away a little each day.

It was the best decision I ever made as a caregiver. Mother was not in pain and enjoyed the extra attention she received from her Hospice Attendants.

My mom was on hospice - a totally Medicare benefit - for her last 18 mos in a NH. She fell & shattered a hip from pulling her wheelchair .....& became totally bedfast. The first 90 days was 1 evaluation to start the benefit and thereafter it was every 60 days done by the hospice provider in conjunction with the medical director of the NH. Really as long as they pass the criteria set by Medicare they can keep on Medicare paid hospice. There is no time limit.

Mom had a X-ray done on site at the NH around 4 mos to determine if there was a break related to pain & swelling in 1 foot. It was ok & covered benefit as it was about pain determination & comfort management.

A lot of ladies are really tough old birds. My mom was a tiny, petite old bird with no chronic diseases but just bedfast due to her fall. Those in their 90's are outside the actuarial charts for likely death, so 95 or 105 could be it! Even after years or months in a facility & on hospice, they keep on, keepin' on....Till their body just finally wears down & out. Try to enjoy your time with her. One day she won't be here.

I am a hospice social worker. Hospice is a level of care, provided by many different medical companies, and is dictated by Medicare rules regarding your insurance benefit. To be put on hospice a person must be certified by *two* physicians to be judged terminal within six months. The first and second *certified benefit period* is 90 days. The next period is and all those that follow, are 60 days. During that time decline MUST be demonstrated. It can be renewed as many times as the physician and the hospice *team* have documentation to support *medical necessity* which for hospice shows *evidenced based* decline. If the person does get better (happens a lot) they are discharged and can be readmitted when appropriate. Usually there is a referral back to a primary provider or to home health (a lesser level of care). As someone pointed out if a new condition develops while on hospice, that will certainly be treated. Hospice staff always works toward helping a patient and their family understand choice at end of life and what care may or may not be beneficial given their terminal diagnosis. For example a hospice patient with lung cancer may develop pneumonia and be a DNR, in which case the infection may be allowed to take its course with only comfort treatment thereby allowing the patient a more compassionate and quick end - but only if that is what the patient wants. The rules have changed recently to allow patients to also pursue some care outside of hospice, including that which non-hospice providers view as curative, so there can be competing agendas between providers and more confusion for the patient and family. That fact has muddied the water considerably. I like Luthel27s post - it may have been helpful to point out the sequence as written articulates myth vs fact to be more clear. It used to be possible to keep patients on hospice for years, especially if the insurer was *not* seeking reimbursement from Medicare (I'm thinking for example of HMO members such as Kaiser Permanente back when there one fee covered everything and there were no deductables). That is no longer the case, even young people under Medicare age will be held to Medicare rules. The reason is because there was a period of intense Medicare fraud on the part of some hospice providers and the result was to really tightened up criteria for care and reimbursement on all providers. I will say, there is still the occasional hospice, usually for-profits vs non-profits that will try to keep a patient on that doesn't belong. It isn't that easy to prove someone is terminal especially in cases of slow decline. You don't say what her living situation is or if you have DPOA-HC but if you do, I would insist on speaking with the doctor and the nurse and asking them the tough questions that are worrying you. There should be no problem getting answers if the service is above board. If she is permanently in a nursing home, that would send up red flags for me as the home may be "dumping" care on the hospice and the hospice may be passively benefiting from billing. Many times there are corporate ties that aren't necessarily obvious. In any case, your mom ought to be getting superior care just being on hospice because she will be monitored more closely. I hope this helps.

I've heard of being on hospice that long. I believe there is no charge for nursing home while in hospice so that is a blessing.

My husband was on Hospice for nine months. Every two months, he was evaluated to see if he was showing a decline. Yes, he was. God bless all the Hospice people....the social workers, the nurses, the aides. They kept him comfortable as he had UTIs and ear aches and head aches. He got Rx's for the things to make him comfortable. He was taken off all the others...blood pressure, cholesterol and numerous others he didn't need for comfort. His family doctor was no longer involved....a geriatric specialist was and he was a jewel. He died comfortably, without the horrible pain my grandfather went through to die. My husband just stopped breathing. I held his hand. He was home with me and now is home with his family and Jesus. God bless you and give you strength.

As far as Medicare & Medicaid for NH costs - for my mom who was in a NH on Medicaid prior to her fall - the hospice benefit was paid by Medicare to the hospice provider & not to the NH. The NH room & board was still bring paid by my moms co-pay of her income & the states Medicaid program.

igloo--the NH is not the hospice provider?

Senorita --

My husband was under care in a Florida nursing home in 2014 while under hospice care. Under Medicaid, the nursing home received my husband's Social Security benefits. Things may have changed or be different in other states.

Good to know, I thought the NH became the hospice provider and was covered. I see it is not.

You can also intervene and get health conditions to improve while in Hospice by having better disease reversal protocals put into place. The American Medical System doesn't really focus on healing disease at the root cause. It simply treats symptoms. There are many health summits taking place on how to reverse diseases presented by MD's... You just have to look for them.

Srta- for my moms situation (after a fall @ NH) the hospice provider was one of the maybe 4 different ones that all provided hospice care at ths NH. As this as all in a rush, the one that got mom was selected by the DON ( director of nursing & this is usually the supreme being or power position at a NH). After about 8 weeks, I as mpoa & DPOA for my mom changed the hospice group. As hospice is Medicare, it is self directed so you can choose the provider. took maybe 3 days to do the change over.

Btw Medicare paid about $ 4,200 a mo to this hospice.

Igloo572 --
You have provided valuable information. I hope those who haven't needed it yet, will save it in case they need it later.

What does hospice care do that the NH did not do? Seems like you shouldn't have to pay as much for the NH if someone else is doing the care.....

Is hospice free for someone on Medicare?

For Senorita: What does hospice care do that a nursing home does not?
Answer: It provides, directs, and coordinates medical care in addition to supportive services such as professional social worker (a person with at least a Masters degree & licensing that addresses the patient and famliy's bio-psycho-social-spiritual needs vs the billing and activity directed "social worker" of a NH), chaplain, CHHA, RN case manager, and physician who directs medical intervention. The nursing home can only take orders from a physician, it cannot direct care. Nursing homes mostly pass out pills and take care of a patient ADLs (activities of daily living). There is a HUGE difference.
For Gropup: IS hospice care free for someone on Medicare.
Answer: Yes. Medicare pays for the entire team of hospice professionals to address the patients needs as well as for all hospice diagnosis medications (e.g. the medication has to be RX'd by the hospice doctor and relevant to the disease the patient is on hospice for).
The hospice provider is reimbursed on a per diem basis at a flat rate regardless of the services used. Some patients require a lot, some don't so the cost of doing business is spread across a population of patients who are served.
Please see my prior post for more information.

When my husband went to a hospice facility Medicare paid for the "inpatent' care (room and board). He was never admitted into the "hospice" longer term care as he died within 4 days. If he had lived and was 'admitted" officially to hospice we would have had to pay room and board...about $125/day that Medicare does not pay. Medicare care does pay for the Hospice nursing staff, etc. but not room and board. If we had stayed at home it would have been free i.e. Medicare pays.