CA KateJanuary 29, 2014

We have started using Hospice. I felt we needed access to greater care than the Visiting Nurses are able to give. It is quite different than what we've had and will have access to goods and services from Medicare that we had actually been denied before.

One important thing for me was that, at end- of- life, I won't call 911, and incur all those un-needed expenses, but rather Hospice and all will be managed from our home.

We signed up yesterday and today an oxygen unit, special air mattress and bed- table were delivered and set up by a very nice young man. We will have to give up the Hoyer Lift because the hospice thinks they're dangerous, but since I think the same, I have no trouble doing this.

I was under the impression that Hospice could only be used for a short time, but it turns out that it can go on for however long it takes for someone to pass just as long as the need continues.

I've already warned them that I can be a Mama Bear where DH is concerned. ;-)

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My thoughts and prayers are with you. My MIL was on hospice at home, she was given compassionate care, she had her family with her when she passed.

    Bookmark   January 30, 2014 at 8:41AM
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I think you made the best decision for your DH. My thoughts and prayers are with you and DH. My son's girl friend just went through this with her beloved mom and hospice was wonderful with the family and patient. Good advise to all.

    Bookmark   January 30, 2014 at 9:44AM
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I do not like hospice because you lose your right to your husband's health care and meds. Of course you can fire them with a 30 day notice. My sister had one for her husband. One day a new nurse walked in and my sis said it is time for his meds. The nurse checked them out and said he shouldn't still be taking these, we need to let him go, just keep him on the pain meds and tranquilizers.

    Bookmark   January 30, 2014 at 1:54PM
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Not with my mom or dad. In their turn, both were stable with meds being taken and they were not interrupted. No problem with Hospice staff at any level about that.

You must have had a schlock outfit. Both providers for my mom and dad were excellent....nothing like your experience.

    Bookmark   January 30, 2014 at 2:17PM
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CA Kate

Emma, I had heard these kinds of things before, which is why I was reluctant to use Hospice. I checked everything out and asked a list of questions. They assured me that I am in control and that they are here to support us... not over rule us. Having said this, I was warned that Medicare has rules that direct what direction Hospice can care take. In the case of Hospice, the focus is on " end of life" not helping someone get better; that's a difference part of Medicare.

    Bookmark   January 30, 2014 at 8:36PM
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It was a good nurse who told my sis to stop his meds. He was not going to get well, it was very hard on the family watching him slowly die and we don't know what they are aware of. It was a good hospice organization. It did not seem to speed up his death.

The problem I had with them was when my husband was in a care home. The care home said they can take control of his meds. He had a comfort care order and that means no drugs except pain meds and tranquilizers and they could over ride my orders. If I had used hospice they could have given him all kinds of meds that I didn't approve of. I opted not to use them. My husband had AZ and I didn't want him on AZ meds.

    Bookmark   January 31, 2014 at 11:58AM
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CA Kate

Ah! I imagine that if DH were to actually need to go into their facility then things might change. I actually am happy that they are able to use palliative drugs. DH gets panicky when he thinks he can't breathe and an anti-angziety drug just might help when this happens.

    Bookmark   January 31, 2014 at 12:59PM
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I guess I don't understand the situation. Can't imagine anyone or any organization overriding MY orders if I have medical POA...which I did. (Of course they would also have the option of refusing to work with me.)

Also don't get your comment about firing somebody with 30-day notice. If I fire someone, they're gone today.

    Bookmark   January 31, 2014 at 1:00PM
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I don't understand that either. The things I said were based on what the care home and the hospice person who came to my home told me. I can understand the care home not being truthful because they may not want anyone over seeing their care or lack there of. I don't think the hospice rep would lie about it, they could get into serious trouble.

    Bookmark   January 31, 2014 at 1:44PM
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CA Kate

I can fire the whole works with one stroke of the pen. I think you were being fibbed to.

    Bookmark   January 31, 2014 at 2:52PM
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That makes sense and the decisions are up to the family regardless, unless you have to sign a contract.

    Bookmark   January 31, 2014 at 11:47PM
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The hospice nurses have a tough road. End of life definitely. My wife was one for 2-3 years. Mostly to take care while the caregiver went shopping. Strictly volunteer. Finally guv it up - too hard to take. I went along on a few.

Couple of the survivors depended on her for a while after the death until they got turned around and could function OK. Hospice is aware of this. She had to gently discourage them and disengage for their own benefit. Wasn't easy as she genuinely liked them and their deceased.

    Bookmark   February 1, 2014 at 11:14AM
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my Mom was on hospice for several years (MS and she was in her 80s). We were told her meds were for 'comfort' only and she would not have any meds which would extend her life (of course, there really isn't anything to extend the life for MS patient), i.e. if cancer, no chemo.

So if she had an upper respiratory infection she could get something to help her breathe better (comfort) but not anti-biotics (life estension).

We could 'fire' them with one phone call and instant removal of helpers. However, getting back on Medicare (for doctor visits; hospital admission, etc) would not be instantaneous.

    Bookmark   February 3, 2014 at 8:01PM
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CA Kate

I was told that, if, for any reason, their service had to be discontinued all they had to do was fill out a form and fax to Medicare. Maybe the difference is that Hinds Hospice is charity not a for- profit agency.

I don't know about ordering antibiotics. It's a good question foy me to ask.

    Bookmark   February 3, 2014 at 8:29PM
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My mother was in hospice care for close to 2 years before she passed away. At any time I could tell them what I did or didn't want. She had a DNR-comfort care order, but we continued her blood pressure medicines in order to prevent more strokes and the accompanying distress she might have had. I was fortunate that the company that I used communicated with me twice a week, to tell me what they thought and recommended and what the doctor was ordering. So when she became paranoid and combative, they told me that they felt she would benefit from a drug and why before starting it. They told me when they wanted to start her on scheduled pain medicine. I could have said no, but that wouldn't have been logical. Our goal was her comfort, both physical and mental.

They really did enhance her care; they came in addition to the nursing home staff. (I don't think the nursing home was happy that I didn't use their in-house hospice, but got a provider that I knew and trusted; I wasn't so impressed with the nursing home's care that I would think their hospice service would be of much benefit)

I have seen some MDs who will not think that the family, including the POA, will want or need to know every choice he is making, medications changes or whatever. Sometimes it is just the same doctor as has been managing her care, so if there was a problem with that before it will continue. But you always have the right to be informed and consulted. Enrolling in hospice does not take away any control that you have, and does not require a 30 day notice to withdraw! The only papers I signed were the consent to treat -- no contract.

The idea is that you can rely on their expertise in maintaining the best quality of life, as life winds down, without prolonging the dying.

The main conflicts that I have seen with families and hospice are that the family members have not accepted that their loved one is at the end of their life, and insist on trying to prolong life, and want attempts at life-saving measures (like CPR or breathing machines) when the end comes.

Westelle, my thoughts and prayers are with you. It is a difficult decision and a brave one too.

    Bookmark   February 3, 2014 at 8:39PM
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new-begining wrote: "So if she had an upper respiratory infection she could get something to help her breathe better (comfort) but not anti-biotics (life extension)."

At 100+ and on hospice, mom got pneumonia...diagnosed by symptom and x-ray. Had "the discussion" with staff. Z-pak (antibiotics) costs about six bucks. My question to them: "For six dollars, why are we discussing this?" We got it. She was better within days. Lived another year....good living, too.

I understand Hospice's purpose but I don't see any reason to be silly about it, which withholding this particular med would have been.

    Bookmark   February 3, 2014 at 11:07PM
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CA Kate

I called and asked about the use of antibiotics. The nurse said that if he wants them he'll get them. Now I just have to gather up the courage to ask him what he wants.

    Bookmark   February 4, 2014 at 9:25PM
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With decisions about antibiotics or other therapies, you really have to look at the whole situation. Of course if there is a respiratory infection and the patient is still doing reasonably well, can enjoy life, they would be appropriate; there are other times when a person is just hanging on, maybe struggling to breath 24/7 with end stage COPD, and a respiratory infection is a rather easier way to die and the kind thing is to let it take its course.

An example that I saw recently was a man with advanced dementia, who had a severe stroke which paralyzed his entire left side and impaired his ability to drink and eat safely; feeding him took an hour each meal. He also had been suffering with severe low back pain, now that he couldn't move himself much the pain was intolerable every time he was repositioned. He still recognized family and enjoyed their visits but was bereft whenever they weren't there -- couldn't remember that they had been there, couldn't remember that he was paralyzed, or where he was, and always struggling to go home. A feeding tube would have require restraints to keep it in.

After two months he developed aspiration pneumonia and his family chose to let that be his life ending event rather than keep him in pain and panic until he had another stroke, or heart attack or whatever would end his life later. Hospice was able to keep him comfortable. Seemed to be the right decision for this gentleman.

    Bookmark   February 5, 2014 at 12:16PM
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CA Kate

Yes, I understand. I imagine that each 'event' must be judged separately.

    Bookmark   February 5, 2014 at 2:19PM
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Teeing off on raee's comments:

1) Yup...family members, even those with "power" often have differing views of the end-of-life situation. Among those views are often included whether or not the person is even at the end of life. Some people want their dad to go or "be allowed to go". Some want everything possible done all the time. For many (most?) caregivers it comes down to reaching that point where we know we're over our heads/out of our depth/beyond our abilities. We HAVE to involve more able people. Hospice folks have to deal with ALL of those varying attitudes along their path. Part of their service is examining and determining whether or not the person is nearing the end of life and conveying that opinion. This they do realizing that neither they nor their doctors actually know for certain. It's a tough job. I couldn't do it.

2) The argument about "allowing a natural death" versus "doing anything that hastens or causes death" is still with us. It likely always will be. From my limited experience, it's clear to me that the end of life is very seldom the movie-version of the event. Sometimes they pass quickly. Sometimes they become comatose and linger for many days even without food or water. It may not be any kind of peaceful or pretty. There may be peace. There may be pain of incredible intensity. "Nature" is utterly indifferent to comfort or to suffering. The Hospice folks certainly know that. They're better equipped to deal with it today than they ever have been.....but there are still no guarantees. The process may or may not go smoothly and they have to handle any eventuality. Yes...tough job.

They have better drugs now than they did twenty years ago and better understanding -- MUCH better than forty years ago. Still, I've seen what I regard as the senselessness of several cases. In the cases of my own mother and father who died at home under Hospice care, we pretty much kept them under the drugs for their last days because allowing them to emerge allowed them to feel what was happening....by which I mean to feel the intensity of the pain that came with even a vestige of consciousness.

Neither I nor my family are law-breakers/flouters and we allowed the Hospice folks appropriate control during this time. Their efforts were successful all along the way. However, during the end-times I often thought how ridiculous it was to continue the dosages of pain killers prescribed. What, exactly, would be the difference between giving enough of the pain med to keep the person comatose thereby, in my folks case, allowing them another few comatose days without food or water when you absolutely know they're going to die, actually intend that they die, and simply giving them a life-ending substance when that point is reached? The only difference I can discern is additional hours or days unconsciousness, possibly punctuated by periods of intense pain if the meds wear off too soon. Unfortunately, that's the euthanasia argument and I have no wish to open that box. But it is coming to all of us if we live long enough. I think it's a rational question.

    Bookmark   February 5, 2014 at 7:09PM
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That was all very well said, Gwarstong.

It certainly is a rational question that doesn't seem to have an answer. I saw a pt. linger once for 3 days with no detectable blood pressure, no responses, yet he kept breathing. (This was decades ago, he wasn't on a ventilator and we didn't have so much of a habit of keeping people alive as long as possible with drugs, machines etc then). All I can think is there was something happening that had to happen for that person.

I guess we don't want to increase the doses enough to cause death, just because we don't understand death. The time comes to let it happen, but we feel more comfortable I guess when we let it happen in its own time,

I think that more people are accepting that death will happen, as sad as it makes us. We went through a period (still in it, really) where a lot of folks really seemed to feel that no one should die ever, regardless of age or health. And we have inflicted a lot of suffering to try to achieve that.

    Bookmark   February 5, 2014 at 8:53PM
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Gwarstong - mom was 87 when admitted to hospice - she could not do anything for herself, not even wipe her nose; she continually choked while eating/swallowing, could not sit up unless propped in a recliner, was starting to not be able to recognize family members; our family decided after her 10 day hospital stay that we did not want to do anything to extend her life (the hospital stay was really tough).

I prayed nightly for her life to end - it was that poor a quality of life. Four long years later it did.

A month before my husband died one of the nurses in the hospital suggested to my daughter that hospice should be called; my husband was not ready to give up (even though his body was) and still wanted to continue chemo. However, a medical mistake solved that problem - he bled to death in surgery. So in his case, hospice was never involved.

My 100 yr old father who is currently living with me will be moving to assisted living within the next couple of months and I will FINALLY be out of the caretaking life.

    Bookmark   February 7, 2014 at 8:51PM
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