Didn't have a good experience with home hospice.

i have to add that my more recent experience with aunt in nh tells me that hospice attracts bottom feeders of the medical industry . the flakiest employee in the nh is more professional acting than either of the much older hospice nurses that mom and i had . no structure in hospice right now , just cowboy nurses in cars running around from house to house .. good nurses but clearly second rate imo ..

id like to see it morph into home caregiver assistance under different terminology than hospice . the term is a constant reminder that hope of recovery is gone. i understand that recovery is out of the question but the patient doesnt need constantly reminded .
those of you in this thread who argue meds with docs or nurses i disagree with . you and myself know squat about medicine , we should only inform those in the field about our observations of behavior . my mom was tranq'd her last three months of life with haldol to calm her hallucinations . by her own admission it helped her immensely . if it hastened her death in any way im glad it did , she was gone in the head and had no QOL ..

Medicare is cracking down on Hospice and it will be harder to get. Patients who have been on Hospice for several years are the most suspect cases. Either it was not time yet and the referral is premature, or, I hate to say it, MD's move patients to Hospice for a free ride, because Medicare fully covers it. There are families who want Hospice for the free nurses and free meds and free beds etc. It was never intended for that.

Over the past few months, the Washington Post has done a number of articles on hospice. The articles were eye opening. The general impression was the hospice has strayed from it's original purpose now that 'for profit' companies have entered the hospice market.

Oh, my, I'm going through the same thing with my dad. I'm his 24/7 caregiver. He's 95, has dementia and prostate cancer. His oncologist stopped cancer treatments because they were no longer working. Well, after he fell a few years ago, and was in the hospital, Hospice representatives were hovering around us like vultures during check-out time. Well, I agreed, and they have been very helpful...however they get very resistant to me if I don't agree with the medication(s). Although my dad will be 96 this December, he's always been very strong. He amazes everyone. Well of course he started declining after being taken off all of his medications - heart medicine for one. He had broken his hip back in 2008, and had trouble with his right leg since. They insisted he go on Haldol...because he was a fall risk. I was very weary about it, but gave just half doses to him. He was like a vegetable. I told them I wanted him off of it. He continued to wake up all during the night and climb out of hospital bed with rails (that we have here at home). They talked me into Seroquel. After I read about that, I was very concerned. These medications are anti-phychotics, and recommended NOT to be given to the elderly...particularly with dementia.. He started getting terrible side effects....rashes, hallucinations, outbursts, etc. When I told the nurse I don't want him taking it, she didn't even suggest something else...she just complained about me to management, and refused to be our nurse. So we have another nurse who is very good, but she too has drunk the Haldol Seroquel kool-aid so to speak. I'm so concerned for his safety, I reluctantly agreed to My dad has been back on Haldol after he fell forward trying to pick up our little dog. And this happened only because I wasn't here, and my daughter who WAS here was out of the room and didn't put his tray on his chair. (ARGH!) He cut his head, not too seriously, but it was very scary. I want him safe, and have the best care. Well, he went from being a co-coherent person who read the newspaper every morning, and sat out here in the kitchen and living room with me watching ball games, etc. to an empty person who stays in bed, and can barely speak. It's heartbreaking. I am afraid he will not last long. I suffer from herniated discs, terrible all over arthritis, and I'm now unable to help him get into the geri-chair or toilet because he is unable to hold himself up. It's dead weight. I've strained my neck and back, and I'm really struggling. I've considered nursing home, but my hospice social worker informed me that if he went, he would not be allowed to have full bed rails, the tray on his geri-chair, or be taking Haldol...because it's considered a CHEMICAL RESTRAINT! And in the state of FL it's not legal to restrain a patient in any way. Only bed and chair alarms....and it's usually too late after they go off. My dad is a serious fall risk. He doesn't realize he can't walk. He tries to climb out of bed by himself. He wouldn't last 2 days in a nursing home. I'm his only caregiver with no help and no money until his Aid and Attendance gets here, and that may be after he dies. He was at a nursing home for a respite for me, and he came home with his ankle swollen, black and blue, bruises on his arms, etc. Where he had tried to get up. I'm in a catch-22 situation. Why can't nursing homes have better ratio between attendants and patients?...Where the patient could be better monitored? It's either the drugs that will kill them, or a fall. I'm heartbroken to see my dad like this. No family member wants to be involved. It's so hard, and so overwhelming. I just know I'd rather he die at home, than alone after a fall in a nursing home. If I can hold up any longer that is. :(

Candee - I'm sorry for your loss, and I'm sorry that your experience with hospice was a poor one. To me, it sounds like your MIL had an intolerance to Haldol. I have a very similar reaction to all narcotic pain medications - severe abdominal pain that is very often worse that the pain they're supposed to be helping. I'm not a nurse, it just sounds familiar to me. Hugs.

Candee, I hope someone who works in hospice will answer you. I think that if the nurse noticed neglect or suspected abuse it might be different, but it is not hospice's job to interfere with family care. I gave my husband medications prn as I perceived the needs. No one checked up on me. I didn't document anything except for my own use. If I hadn't called hospice in I would have been completely in charge -- why should it be different just because they are there to help? I took care of him for 10 years. Why would anyone assume that I'm suddenly incapable of making good decisions for him?

My mother was on hospice in a nursing home. The family was very active in monitoring her condition. The nh staff administered the drugs, but on the care plan drawn up by hospice. Hospice listened to us. When we wanted a drug changed from prn to scheduled, that is what they instructed the nh to do. I was the contact person for hospice, but all family decisions were thoroughly discussed with my sisters. That was my doing, not something hospice required. They need to deal with one decision-maker.

Candee, if a medication is available prn, someone has to decide when it is needed. It sounds like you disagree with the family member who was making those decisions at home. That is not really, in my mind, a hospice problem.

I am so sorry that concern over MIL's care in her final days is adding to your grief at this time.

I had a bad experience with hospice also. My mom died in April and her death still haunts me. When I would object or request something from the nurses they would say "you do know she is dying, right? Did you read the brochure?" (I had and I didn't think moistening her lips was an unreasonable request.) If I had it to do over, I would have the hospital do everything possible and then make the decision to turn off the ventilator if it came to that.

I do agree that this is a family issue but a question for those that might know: Aren't the nurses supposed to make sure the medications are given properly by the caregiver? If so how? Documentation or do they take the caregiver's word for it?
Who is going to protect the patient from an unqualified or overwhelmed caregiver if not the hospice program?
As I noted above, MiL was not on the haldol at all during respite week. We asked and inpatient hospice said "it's prn (as needed) she is fine. She is sleeping through the night and pleasant. We will give it if she needs it." They never did.
I realize the outcome would've been the same, but her quality of life was much better without that drug.
I still can't stop thinking something was missing in this home care hospice case.

No one in the family got involved because it was made clear that the medical advocate was the only one who had the legal permission to say or approve of anything. So, that made everyone not say how they felt because they didn't want to cause any conflict in an already bad situation and everyone could only imagine that what was going on was what the relative wanted. But, what the truth is that most family members don't know know the plan and was not in the loop and did not know how all this works. We are being kept in the dark. Hopefully blogs like this will shed some light on the subject just like the Inspire blog has done for families with loved ones suffering from cancer.

I mean "processing" above, mentally. :)

Thank you all so much. It will be interesting to see how I feel about this in a year or so. It is very recent right now.
I'm going to hang around here, read, contribute when I can and keep oreocessing this.
I sincerely appreciate the ideas and the welcome.

I totally agree with you. That is how it seemed to me as well. I was daughter and granddaughter was medical advocate and one other family sister caregiver. There is something wrong with this system. When people are in pain it is welcome. But when someone decides and influences the patient that its time to go and give in/up I got problems. It was about the same time frame for my mother, has something to do with how long services are being paid and it seems its coordinated around this time frame.

Candee, I think you are blaming hospice for what you see as family shortcomings. Understandable, but not fair.

Candee, you are be right about the Haldol, it is a "last day" medication. And sometimes you don't need the full dose of morphine. We tried to shoot for comfort without making the patient groggy. It's a fine line to tread, and it helps to know your drugs. Nerves of steel and angels on your shoulder....

I think the haldol was given long before it was needed and not followed up properly. I think morphine should've been properly documented. As for being too quick with hospice, possibly. Both of my Grandmothers were in terrible shape before they got hospice services. Both were good experiences (one home, one nursing home.) Or as good as they could be under the circumstances. Both were in so much pain they were moaning. Hospice did try to keep it under control though. They're all I have to compare this to, so I'm appreciating all the input from you guys.
I would not have taken her into my home because I'm sick myself. I think the best thing would've been to keep her at the nursing home and get her counseling or an antidepressant or both. Like I said she was social. She loved bingo and before she left the nursing home she woukd sit by some ladies and make sure they had all their numbers covered. She had frequent visitors and the care was good. Hindsight.....

Sorry Candee, but after reading what you wrote it sounds like the family didn't want to pay for a NH. Since MIL couldn't do the OT/PT required by Medicare to get the 21 days at 100% coverage.

So she goes to DIL' house and I am sorry but it sounds like she was "done in" for a lack of a better term.

Your comment "so between that and the money being spent", it was the money being spent. Someone made the decision and got away with it that mama's money that they wanted wasn't going to pay for a NH.

Sounds like hospice was brought in long before it was actually needed and that killed her.

hospice is reading vital signs . they know when death is imminent imo ..when my mom stopped eating and drinking water hospice knew the jig was up . one cant see whats going on with the knowledge of a caring family member . the vitals tell the hidden tale ..

Candee, if you had to do this all over again, and since your husband's family was not on board with home care, would you have taken you husband's mother into your own home? Sounds like you would have been better at the logistics of it all compared to your sister-in-law who probably was overwhelmed with the task.

Thanks for all the responses! If any of this can help anyone it'll be a good thing, I know I'll be careful when/if my parents or other loved ones end up needing end-of-life care. I'm also filling out the paperwork regarding my personal wishes when the time comes.

My MIL ended up in the hospital (acute exacerbation of CHF) several weeks before this stay at her daughter's house. With the guidance of her adult children, she signed herself up for hospice care and was discharged to a nursing home. Since she couldn't do physical or occupational therapy (she was weak from the chf, but there weren't any other problems that I know of) she had to pay "room and board" right away. (Hospice care, a new bed, wheelchair, & other things were covered by insurance.) She always had an active social life and for years there was a recurrent theme of this friend or that friend ending up in a nursing home and having a terrible time. MIL never wanted to end up in a home! So between that and the money being spent, going to her daughter's house made sense (the entire family wasn't on board with it but my husband and I were very supportive of the idea since it's what she wanted.)

Since her care was now under hospice she was assigned a hospice primary care physician. Her pcp stepped aside as a professional courtesy to the hospice doc. This is another problem because that pcp knew nothing about her!! I think if her original pcp was involved things might have been different (she had him for years and was treated conservatively but excellent.)

Those in the family that didn't agree with the home hospice ended up stepping aside. They visited but didn't question much because they didn't agree with the idea in the first place. As for myself, I did say something several times. I was pretty much told that only the siblings could talk about it. So I got after my husband. Showed him info about the drug, talked to his mom in front of him, things like that. Unfortunately, he didn't do anything. (& yes, I'm very,
very upset with him.)

What bothers me is the hospice provider left it to my sister in law (who is not medically trained) to make too many decisions and they never questioned her. For example, if it was a nursing home or hospital, there would have to be careful documentation of the medications given. She simply wrote in a notebook "gave mom crushed meds." No dose, no name of the drug, nothing. (Just time and date) Same with morphine, which last I checked was a controlled substance. I also mentioned above that when MIL went in for respite, the hospital didn't give her all that medication and she was fine. A little confused but was eating, drinking and pleasant. She slept a lot and was calm. I think the home nurse should've followed up and made sure MIL needed to go back on the medications. The hospice and hospital are connected so it wouldn't have been a big deal to see how her respite week went.

I realize she was dying and the end result would've been the same. All I'm saying is in this case, hospice was no help at all.

Candee, you see hospice as a form of death sentence. So did my son when our daughter went on Hospice. He was very angry about "killing her". In real terms the death sentence arrived before Hospice did. Sometimes that is very hard to accept, especially when you have the same health conditions.
Other patients with Leukemia stayed away from her. Fear of their own possible demise drove them away. Perfectly natural to do that, but it does not change the outcome.

If MIL was "competent and happy" I wonder why the decision was made to call hospice.

I work hospice cases as a nurse and my dad died while in hospice care and I don't know any hospice patients who are "competent and happy". I have to wonder what else was going on that either you don't know or that you haven't shared because hospice doesn't treat medically stable, healthy people which is what you inferred your MIL was. And if she was, hospice was the wrong call to make. Who made that call? FIL? An adult child?

Hospice doesn't make people sick and out of their mind. Once hired (hospice doesn't run around like Superman making decisions for others) hospice removes all medications (and the family is aware of this and literally signs up for this) so we can see what the baseline is. Without the meds how is the person's function?

When hospice is hired there are many forms to sign. The RN speaks to the family before service begins, the social worker speaks to the family before service begins, and there's usually a hospice rep who speaks to the family before service begins. There is nothing gained by not explaining every little thing to the family first. And only when all of that has been discussed does the family sign the papers.

Did your MIL's family sign the papers? Did your MIL's family know that they could have stopped hospice at any time? It happens. People go on hospice and then rally and then the family stops the service (usually only to go back on it a few weeks later).

No one is forced to do anything. I've had families call me at 2am because they were upset about something or they had a question. I am always on call when I have a hospice case and always available for the family and the patient. Your MIL should have had the same thing and her family should have been encouraged to call with any questions.

7 weeks is a long time. Halfway through that why didn't you say something? Why didn't you tell someone that you were uncomfortable with something?

Maybe the hospice provider you chose was unprofessional. Maybe they weren't on hand to answer questions or maybe they ignored phone calls but I don't think MIL's family was completely without resources during those 7 weeks. If it was so awful why didn't someone say something?

Candee; I really appreciate your perspective. you've given me good questions to ask of Hospice when we meet with them, but also shown me (I have medical POA for Mom, who is in a NH) what steps I have to take to explain what is going on with MY Sister in Law, who while brilliant about money, has no medical training or background and often doesn't see what my brother and I see when we look at mom. I realize that when we make the decision to stop treating, we have to include her more fully in the discussion. What my brother and I see is that, while mom has CHF that is worsening, she is not yet bedridden; although she's had pneumonia several times this year and has been in the hospital for several days at a time and is no longer walking, my SIL assumes that it's just a matter of time before she is up and about again. And while she has dementia from her stroke, she still makes sense most of the time. What SIL doesn't see is that the irrationality and agitation are starting to get worse. From your point of view Candee, MIL may have been "just fine" when the decline started, but to others, they may have looked much worse. But I so appreciate your posting this.

i believe that terminal agitation is the last stage of the dying process and definately should be medicated . it doesnt start suddenly one morning . it begins weeks or even months before death . my aunt is being gently sedated at nh and tho im not poa , i can see the need for it .

Candee, all hospice organizations are not equal. Some have excellent evaluations; others not so good. A good organization works with the caregiver to make the loved one comfortable as he/she lives out life. Drugs are available, but patients and their families can refuse them or discontinue them if they don't like the results. What Jeanne wrote is so true.

We have almost two dozen hospice organizations in my area. I have looked through them to identify the ones I thought the best. Two of them rose to the top -- good services, good client reviews. I know we'll be calling one of these two companies if it comes time. Sorry that you had a bad experience, but for many hospice has been a godsend. I have to admit that I don't like the idea of haldol in this day and age. It can turn a person into a zombie at high enough doses. I think I would have asked if there was something less strong that would have done the trick. This is just my personal feeling about the drug.

Candee, who was her primary caregiver, and what did that person think of the hospice experience?

It can be totally shocking to see how quickly a body can deteriorate at the end of life -- with or without hospice. In most cases hospice does not cause this (through drugs, for example) but attempts to deal with it in a dignified and humane way. I am very sorry if that was not the experience your loved one had.

I found hospice to be very willing to work with the caregiver (me) to make adjustments to meds. Because of the particular disease my husband had I told them I would not be giving him Haldol, so they left it out of the comfort medicines. We tried going without several meds he had been taking but he had adverse reactions to that, so they put him back on them. They respected him and also respected my observations and opinions. They provided medications but it was up to me to administer them.

I could be wrong, but I think your dissatisfaction is as much with the primary caregiver as with Hospice. If the caregiver did not agree to give haldol every four hours, your MIL would not have gotten it. If you had been the primary caregiver, the hospice experience would have been very different.

My condolences on the death of your mother-in-law, who obviously meant a lot to you. Thank you for taking the time to share your hospice experience with us.

Thank you for your response. She got out of bed once, but it was by herself and she was a fall risk. She didn't fall but had in the past.
She said she wasn't in pain but was the type of person that only took Tylenol and low doses of maintenance meds (thyroid, hypertension, ...) her whole life. She was prescribed up to 2mg haldol every 4 hours and was given it around the clock. At first she said she didn't want it and said it made her feel trapped, drugged, confused....so, instead of changing it and giving her something weaker, it was crushed & put in her food. She was not suffering from dementia & definitely not a stupid woman. She knew what was happening and eventually gave up. I saw a picture of her from just a month before she died and the difference was staggering. Very sad.
I'm much younger than her but also have a medical condition that can ultimately leave me debilitated so maybe I'm just better at putting myself in her position than her caregivers were. I'd honestly rather call a "Dr. Kervorkian" than go through that.
Thank you for listening & for your input. Any more comments are welcome. Even if we disagree it is good to get different perspectives and healing to get it out.

Candee, from your original post you said your mother-in-law became confined to her bed and the problem started when she kept trying to get out of bed and back in, then back out, and back in. Was she falling? Disoriented? Complaining of pain no matter what position she was in while in bed?....

At these times, the patient's safety is seriously threatened. From what I have read, such meds are given to help calm the patient, to make them more comfortable when they are feeling pain.

CHF is no walk in the park, blood moves through the heart and body at a slower rate, and pressure in the heart increases over time. Sounds like your MIL was in Stage D, where the pressure becomes very painful, probably the reason your MIL kept getting out of bed. Thus the reason to take something to calm her down.

Listen, I've been thru caregiving 24/7. I know what it's like. Not all hospice experiences are the same.

Some nurses & caregiver want nothing more than to sedate a person until they die. My MIL went from a competent, happy person to a drooling, mumbling skeleton within weeks. All she had was chf. No stroke, nothing. It was clearly from her meds.

Death is never "good" but we can ask for death with dignity. Hospice did nothing but strip her of her dignity.

You had your experience, I had mine & I'm just as entitled to share as you are. Let it be a warning: if your loved one is being heavily sedated, that's NOT what hospice is for. Unless family members stay involved and question these meds and stick up for their loved ones, the end can be a living hell. Pain control is one thing. Chemical restrain without accountability is another.

I went through Hospice for my daughter. A good experience? Death is never a good experience or an easy experience. But more poking and prodding and chemo is just pure HELL.
Delerium is part of dying, it is not caused by Hospice, but alleviated by them.
The caregivers are not happy, not a bit, don't kid yourself.
Candee, I suggest you be there for the whole 24/7 ordeal for 7 weeks and then decide if you want to go it alone without Hospice to help. Seriously.