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

Asked by

She has heart problems and PD. Is now in AL. Has fallen often, but only gets x-ray if she hits her head. The RN reviews her meds, and reports changes, but she doesn't get to Dr's office or dentist??No pain, but I feel no one cares because "she is a hospice patient, so do nothing. Am I wrong? She is 87 and somewhat confused to time and day.

Answers 1 to 10 of 10
Expert Answer
3932 helpful answers
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
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.
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.
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 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.

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.
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.
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.
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 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.

Share your answer

Please enter your Answer

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support