Hospice?

ejagno · #1 10/29/11, 12:29 AM

I feel like I'm learning a whole new world out there. My MIL is terminally ill with cancer. We realized last weekend that we needed help. My FIL is 78 years old and simply could not continue with the physical requirements of lifting on her. I'm the only other female in the family besides MIL and her cancer is covering her "female" area. We'd heard about Hospice and decided to call. This hospice group descended upon us like vultures with mountains of promises and paperwork coming out of our ears. This nurse came in then that nurse came in while two more assisted and it had been non-stop all week.

Trouble started when they decided that we should use their doctor instead of MIL's doctor. More trouble insued when they felt like "their" pharmacy was better than "our" pharmacy. They began with ultimatums such as, "If you get your prescriptions from there then we won't pay for it but if you let us get them from our pharmacy then there is no charge". If you use your doctor then we can't do anything but if you use our in house physician then we will just take care of eveything.

Well, today they called me 6 times by noon more or less with their ultimatums once more. I kept telling them to work it out amongst themselves because my only concern was my MIL. They simply would not accept the fact that here in America we can choose our own physicians and pharmacies and began harrassing our doctor. I FIRED THEM!

Yes, I need help bathing and changing her because even though she's not a large person, dead weight is still heavy in an adult. What I don't need is to end up with so much stress and tension over meds and doctors that you could cut it with a knife. Today they were actually mad at us for not using the providers that THEY have contracts with. We have a doctor. We have a pharmacist. We simply needed a hospital bed, support and assistance.

Can anyone offer any helpful advice or tips?

Nevada · #2 10/29/11, 12:38 AM

Hospice wants her dead. They want full control because they want to be sure that if she has a medical crisis that they can kill her by denying care. They are using their pharmacy because they are paying for the drugs.

If you want her to have the benefit of advanced medical care then you need to release her from hospice right away. If you are looking for a way to let her die, then you found the right service.

Hospice has changed radically over the past few years. It has become a way for insurance companies (including Medicare) to eliminate expensive patients, even if they don't have terminal conditions and can manage their aches & pains with oral medications.

Joshie · #3 10/29/11, 01:03 AM

I worked as a hospice nurse at one time. It makes no sense to say, as Nevada said, that they want your MIL dead; they do not. Medicare does not own a hospice company. Insurance companies don't own hospices. There are very stringent and specific guidelines one must meet to receive hospice benefits. Not every terminal patient has insurance coverage for hospice benefits.

For most people, there comes a point where heroic measures are not so much useless as they can be harmful. For example, the natural progression for someone with Alzheimer's would be for them to die of an infection as simple as a bladder infection. For most Alzheimer's patients we treat infections. As time goes on, they cannot eat by themselves so doctors may suggest a feeding tube. As they lose mobility they develop painful bed sores. It is very difficult for the patient and the patient's family.

My cousin died of breast cancer when she was in her early 40s. She fought and fought and fought but when it became obvious that she was not going to win the battle she went into hospice. They helped make the last few weeks of her life better. They helped her husband and children.

Hospice pays for medications related to the terminal illness in any way. Because of that, they try to use the least costly version. For example, they'd want to use morphine for pain control instead of a fentanyl patch, barring any allergies. That's really OK because morphine is usually more effective especially for those with cancer (since the med is absorbed through SQ fat and cancer patients often don't have enough fat).

Hospice pays for durable medical equipment (oxygen, hospital bed, shower chair, etc.). They bring over cleaning things (wipes), help bathe patients a couple times weekly, and bring adult diapers. I am betting that they want you to use their doctor and pharmacy because they have a good deal with them. We didn't do this. If people didn't have a physician we referred them to our medical director but few people used him as their provider. We worked with several pharmacies. Heck, I delivered meds quite often. I would suggest certain pharmacies in certain areas just because I knew that they'd try to get anything we requested and would deliver. There was no reason for anybody to use any particular pharmacy. We used chains and small family pharmacies... patients' choice. The more I think about it, though, they may want you to use their people as some insurance companies want you to use their approved providers.

Hospice is a business. For profit or not, it is a business and businesses are there to make money. That is not a bad thing.

I'm glad you fired them but I doubt they're the only ballgame in town. Call somebody else. Is there a Catholic hospital? They would probably have a hospice. There are all sorts of them. Call around. Interview them. They work for you. You don't work for them. Make certain they realize this.

Oh, ask if they have volunteers. They can come and sit with your family and can be a wonderful support to you and to your FIL.

The company you fired was not how good hospices operate. Trust me, a good one can make your life a whole lot easier. My friend called me when her grandma was dying. I referred her to a hospice and gave her info about pain meds, etc. (oh, oncologists and other physicians would often ask us about pain control as we helped dying people with their pain much more often and better than they often did). Shortly after my friend's grandma died she went from ICU nurse to hospice nurse.

I was blessed that PBS ran a Bill Moyer's series about hospice as my MIL died (I was not yet a nurse). The docs wanted to insert a feeding tube but her boys wouldn't allow it. I was very angry and confused until I saw this series. You see, at that same time my young daughter had a feeding tube. How could it be right for her but not my beloved MIL? This series helped immensely.

I pray that you and your family find the excellent care you need and deserve.

http://www.pbs.org/wnet/onourownterms/about/index.html

Nevada · #4 10/29/11, 01:15 AM

Quote:

Originally Posted by Joshie

It makes no sense to say, as Nevada said, that they want your MIL dead; they do not.

Maybe that wasn't completely fair. The hospice outfit that got to us is owned and operated by our healthcare insurance company. There is no question that they wanted Alma to die the night she had the pulmonary embolism.

Medicare offers a pretty sweet deal to patients who agree to hospice. That's no surprise either, since they have a lot to gain from it (minimal level of medical intervention and shortened life).

My experience with hospice was very bad. They got me to agree to it by fraudulently misrepresenting what it was.

They wanted her dead because they saw that she was getting expensive. They make no attempt to deny that fact.

Joshie · #5 10/29/11, 01:26 AM

Quote:

Originally Posted by Nevada

Maybe that wasn't completely fair. The hospice outfit that got to us is owned and operated by our healthcare insurance company. There is no question that they wanted Alma to die the night she had the pulmonary embolism.

Medicare offers a pretty sweet deal to patients who agree to hospice. That's no surprise either, since they have a lot to gain from it (minimal level of medical intervention and shortened life).

My experience with hospice was very bad. They got me to agree to it by fraudulently misrepresenting what it was.

They wanted her dead because they saw that she was getting expensive. They make no attempt to deny that fact.

As it goes with all service industries, there are good and there are bad providers. Good hospice care depends on good medical care. You need a good physician. I'd certainly want to use my own, trusted physician.

Nevada · #6 10/29/11, 01:30 AM

Quote:

Originally Posted by Joshie

As it goes with all service industries, there are good and there are bad providers. Good hospice care depends on good medical care. You need a good physician. I'd certainly want to use my own, trusted physician.

I'll say. When a hospice doctor admits a patient who has no terminal illness, can manage her aches & pains easily with oral medication, and has quality of life good enough to look forward, I consider it malpractice.

I'm still in disbelief that they can try to kill people in the ways they've tried to kill Alma and get away with it. Isn't killing people for monetary gain against the law?

Joshie · #7 10/29/11, 01:52 AM

Quote:

Originally Posted by Nevada

I'll say. When a hospice doctor admits a patient who has no terminal illness, can manage her aches & pains easily with oral medication, and has quality of life good enough to look forward, I consider it malpractice.

I'm still in disbelief that they can try to kill people in the ways they've tried to kill Alma and get away with it. Isn't killing people for monetary gain against the law?

Does Alma have Alzheimer's or other dementia? Has she lost a bunch of weight, had declines in mobility, speech, etc? These are signs that one's condition is significantly declining. There are very stringent governmental guidelines. Heck, I admitted a cancer patient that shortly after admission to hospice was kicked out because she looked well. She was dead within three months.

Hospice manages pain with oral medication. Hospice philosophy says that you use the least invasive pain treatment possible. When people are able to take pills they do. For minor pain we used Vicodin. As pain levels increased, we'd use a long acting morphine with a short acting morphine (or vicodin) for breakthrough pain. If one couldn't swallow a pill we used drops. Remember, almost anything that can be taken orally can be taken rectally.

Hospice philosophy dictates that patients should receive care when life cannot be prolonged or when prolonging life causes more harm than good.

These people didn't try to kill Alma. Somebody thought she was terminally ill or she would not have been referred to hospice. A physician had to believe that she was terminal within six months. Hospice didn't try to kill her. Heroic measures are not performed for hospice patients as that's just not what a hospice patient usually wants.

Not everyone has a hospice mindset. It's not for everyone. It can, however, improve one's last remaining days on Earth. I had more than one patients' family come to me at the funeral and thanking me for making the memories of their loved one's last days as happy as possible.

Hospice philosophy is not shared by everyone. That's OK. It's good for some but not for all

Wendy · #8 10/29/11, 01:56 AM

Hospice was wonderful when my sister was dying from Melanoma. They made her last days so much easier for her family & herself.

Ravenlost · #9 10/29/11, 02:24 AM

I'm so sorry you had such a bad experience with the Hospice service in your MIL's area. Hospice was very helpful for us in my Daddy's last week of life.

Can you discuss this with her doctor and see if he can suggest an alternative?

huzzyjr · #10 10/29/11, 05:40 AM

Talk to her doctor or better yet her doctors nurse. Did she have home health? And maybe it is just the person who was assigned to your case. I know of 2 cases this past year with hospice 1 was wonderful, the other was a battle from day one. It was the same company so the only difference was who was on the case. Talk to the person in charge of hospice and demand answers.
Carol

Backfourty,MI. · #11 10/29/11, 07:45 AM

We have had Hospice care come in for my father, my grandmother & my Father in law & in all 3 case in all different years & time frames they were wonderful! I would always reccomend hospice & would call on them again. Each situation is different though & maybe your MIL & your family aren't ready to have hospice come in yet. Normally for us it's when the patient no longer needs to go to their own doctor because there is really nothing else a doctor can do for them.
So sorry your family had a bad experience with the hospice organization there because they really are wonderful & are so helpful when you need them.

barnyardgal · #12 10/29/11, 07:47 AM

My dad & i used Hospice with my mom toward the end & they was great,yes,we used their pharmacy & they delivered to the door when needed,prescriptions was from her cancer dr.the nurse was in contact with her cancer dr. when a problem came up also...

I can only say good things about our experience with Hospice here~~might need to go over someones head?? don't know???

Am so sorry your going through bad trouble with Hospice at a time like this~~Hang in there!!

willow_girl · #13 10/29/11, 08:06 AM

I had a bad experience with hospice care too. It's still difficult for me to talk about after more than 10 years.

Later on, I met a woman who had been an administrator for a hospice program. She gave me a piece of information that is worth reflecting upon, IMO. I don't know if this is true in all places, but she told me that Hospice receives a flat fee for the care of each terminal patient. Whether the patient lives 10 days or 100, they are paid the same amount. It appears this could create an incentive to escort a patient to death's door, eh?

I can't say the hospice we dealt with tried this; they were merely incompetent. Horribly incompetent.

Watch them like a hawk, I say!

Micheal · #14 10/29/11, 09:19 AM

My family's experience with hospice has been nothing but stellar and this is with 2 different org. in 2 different states. I couldn't express enough what they did at different times for both my father and SIL as to the care given and their assistance to family concerns, fears, and our lack of knowledge.
Yes, they wanted to use their doctor and not ours - the reason - their's was reachable 24/7, ours never was.
Yes, they switched us to their pharmacy - reason - again their's was available 24/7, not 9-5 or such. Plus their's delivered, even at 3AM.
And yes, they even brought in their own equipment and had it all set up before the family member came home from the hospital.
In fact they also called after they were no longer needed as follow-up(s) wanting to know if there was anything they could do for the family as to unanswered questions and/or even grief counciling.
Again this is only my family's experience(s) but I've never seen a more compassionate, caring, dedicated group of people as those that work within hospice........

MO_cows · #15 10/29/11, 09:19 AM

Sorry that you had such a bad experience. We used hospice services twice, with my grandmother and FIL and they were a big help both times and didn't try to "take over", just assist. Hope you can find another provider in the area and get the help your family needs.

My sister worked as a hospice nurse for a few years but had to give it up because it was so emotionally difficult. She grew too fond of her patients and she was grieving all the time.

DAVID In Wisconsin · #16 10/29/11, 09:30 AM

We've had to rely on hospice several times over the last few years in 3 different states. In our cases they were absolutely great. I couldn't have done it without them. Sorry for those of yall that didn't have good experiences.

Nevada · #17 10/29/11, 09:41 AM

Quote:

Originally Posted by Joshie

Does Alma have Alzheimer's or other dementia? Has she lost a bunch of weight, had declines in mobility, speech, etc? These are signs that one's condition is significantly declining. There are very stringent governmental guidelines.

I can't believe hospice guidelines are stringent, or even enforced at all. The hospice doctor who admitted her never even met her. Any information that he relied upon to admit her had to be second-hand.

Alma does not have Alzheimer's, but she can't live alone or manage her own affairs. That's not unusual for an 86 year-old woman.

I do not believe anyone alleged that Alma was terminally ill.

Quote:

Originally Posted by Joshie

These people didn't try to kill Alma. Somebody thought she was terminally ill or she would not have been referred to hospice. A physician had to believe that she was terminal within six months. Hospice didn't try to kill her. Heroic measures are not performed for hospice patients as that's just not what a hospice patient usually wants.

Yes, they were absolutely trying to kill her. I made Alma's wishes crystal clear, and specifically refused to put a DNR on her. They knew that. After I called for help for her pulmonary embolism they offered to forgive me that time if I would promise to never call for help again. I said "absolutely not!" That wasn't the deal they made to me when they signed Alma in. It was them who were breaching the contract, not me.

They didn't like the contract they offered, and I let them out of it. But to suggest that they didn't want to let her die is absurd. That's what the whole exercise was about. If they couldn't let her die, they wanted out.

chickenmommy · #18 10/29/11, 09:58 AM

If you check my past posts you will find my experience with Hospice. I will never use them again. Ever. When a patient has a dnr and you ask the caregivers to honor that dnr the response should NOT be that you are killing the patient. When the nurse tells you that the patient is comfortable, and that they will call if there are any changes the hospice nurse should not then call and tell you the patient is going to be dead in two hours and why did you leave?
By the way, this was months, yes plural, months ago and she is still alive. She would be happier had they followed the dnr. I can tell when I visit her that she is PI**ED.
Never again.

Dandish · #19 10/29/11, 10:19 AM

Quote:

Originally Posted by Micheal

My family's experience with hospice has been nothing but stellar and this is with 2 different org. in 2 different states. I couldn't express enough what they did at different times for both my father and SIL as to the care given and their assistance to family concerns, fears, and our lack of knowledge.
Yes, they wanted to use their doctor and not ours - the reason - their's was reachable 24/7, ours never was.
Yes, they switched us to their pharmacy - reason - again their's was available 24/7, not 9-5 or such. Plus their's delivered, even at 3AM.
And yes, they even brought in their own equipment and had it all set up before the family member came home from the hospital.
In fact they also called after they were no longer needed as follow-up(s) wanting to know if there was anything they could do for the family as to unanswered questions and/or even grief counciling.
Again this is only my family's experience(s) but I've never seen a more compassionate, caring, dedicated group of people as those that work within hospice........

This was our experience with hospice also when we cared for my BIL who had metastatic lung cancer. It may vary in different states, but hospice here only accepts people who are terminally ill, and it's up to the family to decide when and if hospice is called upon. In virtually every case I've known, it's the PCP that makes the referral to hospice. They did nothing without getting our consent and opinion. They were absolutely wonderful to work with.

jwal10 · #20 10/29/11, 10:33 AM

I always thought hospice was for a terminal patient. Otherwise a care facility would be a better choice. We are using a care facility for Sweeties Mom right now. She is in decline not terminal. Just like Alma. Why was Alma using Hospice? We used Hospice for my Mom and Sweeties Grandmother because it was end of life and terminal. Their wish was to remain at home and die there. They were so helpful and had the patients best in mind. We talked to them well in advance so they knew the situations and were there when they were needed. Mom lived 13 days and Grandmother 7 months. Everyone was on the same page and it went smoothly. Sounds like the OP's experience was sudden and their were differing thoughts. So sad for the last days of a terminal patient. Their wishes have not or are not being carried out....James