Didn't have a good experience with home hospice.

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This is re: my motherinlaw. I was not her main caregiver but did visit regularly. Home ho ice was just a bad experience. First,
They took her off of all maintenance medications at once. (Thyroid, blood pressure, blood thinners, everything.)
In spite of this she was mentally stable/alert, was eating and drinking, enjoyed television programs and visits with family.
She did OK for a couple of weeks until she became confined to bed for a few days and then decided to get out of bed herself. This is when the real problems started. She was put on an antipsychotic "for anxiety" 24/7. She rapidly started to deteriorate. The only time she was off was during inpatient respite (she was a little confused but was fine without medication.) As soon as she got back home she was put back on the antipsychotic. It made her anxious, constipated, her stomach hurt, she barely communicated, she stopped eating & drinking and eventually died. Beginning to end of home hospice care was approx. 7 weeks.

I had the feeling the hospice nurses cared more about keeping her quiet & keeping her caregiver happy than caring about the patient's needs.


Candee, we need more information. What were the health issues related to your mother-in-law that she was placed on hospice care?
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.
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.
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.
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, 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.
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.
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; 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.
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?

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