Hospice - confusing

lisa77429July 28, 2006

I understand hospice mainly provides comfort care for the dying. In reading the so-called rule books, it states that it will not provide any services towards the cure of the diagnosed terminal disease. I'm a primary non-related caregiver for a lady and am constantly being asked why she isn't on hospice. Yet, her doctor says he can provide whatever she needs. This lady is 96, has dementia and also has been diagnosed with minor congestive heart failure. She recently suffered from pneumonia possibly due from aspiration - diet/liquids modified. She lives at home with 24 hour care. She still walks but is slowing down and does require more assistance, is very verbal on her likes and dislikes, loves watching old movies, loves going to the stores and out for ice cream, onion rings and drives through the neighborhoods, etc. She still cracks jokes on good days. I do feel she is slowing down, however, she seems to be recoving nicely (at this moment). We aren't totally sure if this recovery will continue though.

So, what would hospice do for her that her girls and doctor can't? I'm familiar with hospice re: cancer death. But for this lady? If she is put on hospice for CHF or dementia, wouldn't that mean that all related meds would be stopped - per the rules?

Can anyone help make sense of this for me? I'm so confused.

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I suspect that the people that are asking you "why" do not understand the purpose of the Hospice. It is not for the custodial type care that you are now doing. It is for anyone that needs something to relieve the suffering that can come with those end months. It may be pain medication, oxygen to help with breathing or anything that will help make life easier to bear. It would not include anything designed to extend life. That's the difference between Hospice and Nursing Home care. A NH will provide her with medications to extend her life as much as possible. If she should get pneumonia again, she would probably be sent to a hospital for agressive treatment. If her congestive heart failure became more than minor and was more life threatning, Hospice would probably take her and provide oxygen to help her breathe.

"Terminal" is usually considered when the end is expected within six months. Some places will take the patient as much as two years before. It just depends on the type of treatment that is required to keep the patient comfortable.

The Hospice usually requires the family to sign an agreement that should the patient become quite ill, (such as pneumonia or kidney failure) he or she will NOT be taken to the hospital to be "cured."

The type of care given would perhaps vary from place to place, but from your description she probably would not be considered for admission. She does not sound as if she is near death. However, if she is getting to need more care than you and her girls could do, then perhaps she needs to be in a regular nursing home that can provide the extra care around the clock.

It might be wise to see if she would qualify for home Hospice care. They come by to check on things and generally help do things that the family is not trained to do.

    Bookmark   July 28, 2006 at 9:13PM
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Agnes, I feel the same. Not quite time yet. As it is now, she'll continue to stay home vs. a nursing home. Currently, we have pt and ot coming to the house to assist with her restrengthening post hospital. We also have a nurse making home visits to monitor her recovery. Being at home with 24 hour care, she gets whatever she wants when she wants LOL. She's our little princess. I doubt she could ever receive such one on one care at a facility. This is a lady that was sicker than a dog with pneumonia (96) and was still able to climb over the bed rails at the hospital. She has zero family.

I just get so tired of others asking why she isn't on hospice. I keep thinking it's because they don't know her like we do. I believe they see an invalid yet her girls see a lady who wants to live to 105 (her goal). We see her walk daily - they don't. We've had to put in bed alarms because she sneaks out of bed (fell 2 weeks ago too). We've had her last three birthday parties at the horse track and she had a ball. I feel WE are on the right track since she has yet to express her wishes to pass on. She's told me several times, "I'm not afraid of dying, I'm just not ready yet."

There are just so many parties involved - her girls (caregivers), her attorney, her guardian, her medical management group, and her docs. Now we have all these new outside sources involved too. Her guardian, her girls and her doctor feel hospice isn't required yet. But, everyone else (new and old) involved see it differently. They claim we will get so much more help and support from hospice???? Her girls handle her bathing, she has no family to counsel, she isn't in pain, not bedridden, etc. They say we don't get it and we say they don't get it. I just think they are WRONG to recommend it at this point. Just so tired of hearing it almost daily LOL. Very very confusing.

I'm sure hospice will be needed at some point - possibly sooner than later. At her age, you never know how well any recovery will be. I think her girls will know when it is time.

    Bookmark   July 29, 2006 at 12:39AM
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Sounds as if you know a bunch of busy bodies. Just tell them over and over again, that she is NOT near a terminal condition yet and she could live for years. As long as she is happy and you and the family can handle all her needs, then that's it.

Tell them that when the time comes that she needs more than you can provide, then Hospice would be a good option.

Tell them that Hospice space is so limited that you don't want to take a bed that's needed by someone less fortunate.

    Bookmark   July 29, 2006 at 8:45AM
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I speak from personal experience. My Mom has had hospice care for more than 2 years in her own home. What they provide, unlike Medicare, is more attention (if you will) - whether or not she is eligible could vary depending on what state you are in.

It is true they will not do anything to extend life, but they can and will improve the care.....Mom has help around the clock (not provided by hospice) so she can stay in her own home (she's 89 with very advanced MS)

So, if your lady got pneumonia she would not go to the hospital . Mom has rec'd a geri chair, an oxygen generator, she had an aide come and bathe her twice a week, the social worker comes once a month, the chaplain once a month, the Dr. actually makes house calls, the nurse comes once a week and ALL medications are provided at no cost and delivered to the door.

We are not trying to extend Mom's life and she has very little "quality" to her life due to the MS and MS related dementia.....we are simply trying to provide her with the best care and 'help' possible to make her remaining days the best possible.


    Bookmark   July 30, 2006 at 12:39AM
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Carolyn, that's exactly my fear if she were to go on hospice - no treatment for infections and the like. The doctor says her heart is pretty good considering her age, etc. In my eyes, not treating an infection (due to hospice rules) that could ultimately cause her death is wrong in our particular case. Now if her heart takes a turn for the worse, then yes, time to rethink. Or, if she continues to aspirate and contract pneumonia no matter what we change, then yes. If her dementia gets to the point where she can't function enough to eat, swallow, etc., yes again.

She has all equipment necessary - that is no problem.
Her girls bathe her routinely - outside help isn't necessary.
She has a privately hired med management group overseeing everything (social worker, nurse on staff, etc.)
We have home health coming out - ot, pt and a nurse.
She's not interesting in talking to a chaplain - feels guilty enough as it is because "she hasn't confessed in many many years" and "because she failed to have children" - she absolutely refused to talk to one in the hospital. We have the availability of one right down the street if she should ever change her mind.
She isn't in pain.
Her terminal illness per her doc at this time is dementia.
She's "rotten spoiled" as she calls it.
As of last week, she's recuperated enough that we went out for ice cream and an hour long drive to "gawk" at other people's houses (her fav).

I'm just so tired of 50% of the people involved in her care telling us how we just don't get it when it comes to putting her on hospice. I hear the good and the bad. One day I feel like yes, she probably should be on hospice and then the next, no, she still is living life and wants to continue. So darned hard. Even though it really doesn't matter because I'm not the decision maker - just personally involved if you will. I've been with her going on six years and feel I know her pretty darned good.

Carolyn, we're in Texas too. God Bless you and your mom.

    Bookmark   July 30, 2006 at 7:56AM
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It sounds as if you are well aware of her situation. However, it can change very quickly. A good idea might be to have Hospice come to the home and evaluate her. This would do two things, it would shut up the people who are telling you things about "what you should do," and it would give her a record with them should she need to be moved quickly. They may even be able to give you some hints as to make your tasks easier.

I still say, that unless something changes in the near future, you seem to have a very good outlook on how thing really are.

Take care

    Bookmark   July 30, 2006 at 10:33AM
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Your lady does not sound as if she meets the criteria to be considered for hospice care. While old age is certainly terminal :), it isn't an illness.

My father is currently a hospice patient. If he were to contract pnuemonia that could not be treated in the home, such as requiring IV medications; he would be taken to the hospital for treatment; then returned to our home. He would not simply be allowed to die of pneumonia. Pneumonia is generally not considered a natural progression of a terminal disease, whereas, renal failure is often a natural progression of several conditions. Renal failure would not be treated; pneumonia would.

Hospice does provide medications for comfort, but they do not withhold medications that would hasten the pt's death if not given. For example, blood pressure medications or cardiac medications. Medications such as cholesterol lowering meds that are meant to prolong life are not provided. Dialysis is currently causing controversy; medicare does not want to pay for it, even if renal failure is the primary diagnosis.

    Bookmark   July 30, 2006 at 6:02PM
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Lisa, I think Agnes has a good idea - let Hospice evaluate. They might not even accept her at this time - hospice is for an 'incurable' problem and we all know Alz is incurable at this time, but it doesn't seem to be interfering with her life too much at this point in time.


    Bookmark   July 30, 2006 at 6:12PM
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Thanks all. Polly, what you say makes sense with what they've said to a point. I'm beginning to wonder if the so-called "sales person" for hospice was on the right page. Anytime I brought up a what if scenario, she advised that we couldn't seek treatment elsewhere but that we would have to wait for one of their nurses to come in and assess. The only exception I could get out of her was if she fell and obviously hurt herself, then we could go to the er. She also made it sound as if she were admitted to hospice under "heart", that pneumonia would be considered a nontreatable illness. That bugged me! Also asked about food poisoning (which can be detrimental to the elderly and which is also nonheart related), and was told NO, we would have packets of medicine to administer and again, we'd have to wait for their nurse.

Also if I understand right, we would lose her primary physician as we would have to go with their hospice "contract" doctor. Fear of the unknown there.

ACK..... I think a terminal illness would be so much easier sometimes. Thanks all. Not looking forward to tomorrow as I'm sure it will be brought AGAIN by someone LOL. I'm practicing my "I known nothing" smile.

    Bookmark   July 30, 2006 at 9:29PM
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That would be a good reason to have her evaluated. It might just shut some well meaning people up if Hospice said she wasn't ready.

Here is the rational about treating pneumonia. It used to be called "The Old Man's Friend" because it brought the end sooner and shortened the time of suffering. Suppose someone has very painful cancer. Should the pneumonia be treated so that they can be cured and thereby suffer longer? Death by pneumonia is by far the easiest way for someone in dreadful pain to go when the end is near. Remember that we are thinking about terminal patients.

Pneumonia, in the elderly, especially those with Conjestive Heart Failure, means that the lungs are filling with fluid. With CHF, it's very common. The heart doesn't pump properly and fluid collects elsewhere in the body. At some point, you will have to decide if you want to see her continue to struggle over and over again to breathe. Taking her to a hospital for it means that you plan to fight her dying. Mother Nature has designed ways that death can be easier for her children.....Pneumonia is one way.

I am not trying to be heartless. I just want you to understand why Hospice doesn't treat pneumonia. I agree with others in that she may not be eligible at this time.

    Bookmark   July 30, 2006 at 9:59PM
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Agnes, I agree wholeheartedly with what you said about pneumonia. If her pneumonia reoccurs and does so fairly quickly, I think I would look at it as you said, "the old man's friend". Tis time. However, it is currently being diagnosed as aspiration from eating/drinking (diet now modified) - not related to CHF. Puts a different light on it to me. Her cardiologist diagnosed "minor CFH".

But as they said, when you get old, so many things start happening that it is sometimes hard to separate out illnesses and the reasons for such illnesses. Even being anemic in the elderly puts strains on most all organs. Maybe this is why there is so much confusion with this particular lady.

Again, thanks.

    Bookmark   July 31, 2006 at 12:01AM
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We started Hospice for mom 2 wks. At this point in time, I can't begin to tell you what a disappointment. We have similar situation as OP, with ample help in the home in place for my folks. But because mom is cancer patient as of Mar this yr, age 84, we felt it best to try to make the final days as comfortable as possible. Hopefully things will start to go more smoothly. Hospice got oxygen to the home pronto, though it's not needed. We did need a hospital bed especially since mom has developed a horrible leg blood clot, & after waiting 4 days, I called Fri & asked if we'd get it by the weekend. The nurse who was supposed to visit that Fri, instead called much later in the day. Sat.we had to request a visit for a weekend nurse for a catheter. Then Mon we expected to see the original charge nurse, we called to find that she was on vacation this wk. and someone else would cover. Now why weren't we told about that? It seems Hospice, at least in our eyes, is far overrated.

    Bookmark   July 31, 2006 at 11:27PM
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Hospice is not one organization, I guess. Each program is run locally according to certain guidelines, but that does not mean that all groups have the same resources or ability to do the same work.

I think, Chicaroonie, that you need to remain an advocate for your Mother, and work with the Hospice people as closely as possible. Don't expect them to read your mind, but instead, sit down and ask how everything will be handled. They need to know that you're working with them, as well as you need assurances that they are working with you. You group might be very short staffed, or in some sort of organizational dilemma. Be kind to them, to, their mission is to help you and your Mother.

I wish you well.

    Bookmark   August 1, 2006 at 12:06AM
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Re: pneumonia; you can, of course, refuse treatment if you choose (ie; the old man's friend); but if it isn't a natural progression of the terminal condition for which the pt is being treated; then the pt is eligble to have the pneumonia treated; antibiotics, etc.. . Pneumonia is not a natural progression of CHF. Yes, in CHF the lungs do fill with fluid, but it is not the same thing. Pneumonia is an inflammation of the lungs caused by bacteria, virus or chemical irritants. CHF is caused by failure of the heart to adequately pump the blood throughout the body, causing a buildup of fluids in the lung and tissues.

Unless it is an emergency that can not be taken care of at home (fall with a fracture, etc.) you do have to wait for the hospice nurse to evaluate the pt; you don't simply take them in to the doc. If you are medicare eligible, medicare will pay for hospice treatment, but once you go on hospice, you cannot use medicare to pay for treatment from your personal physician. You CAN seek treatment, anywhere you want; you simply have to be willing to pay for it yourself. And you can take yourself off of hospice and at that point, you would be eligible for Medicare payment of your primary physician again. There may be a short time period in which you would not be elgible, but you would become eligible again.

In my father's case, his cardiologist actually wrote the order for hospice care for him, along with the medication orders. His primary physician was willing to work with hospice and continue the cardiologist's orders, so we did not have to change physicians.

Chickaroonie, I'm sorry that you are having a difficult time with Hospice. (But trust me - that nurse NEEDED her vacation! It's not an easy job, and it's very emotionally draining.) We have been on hospice for 12 weeks now; and have had only one thing happen that was frustrating and that was easily remedied. It is very important to read through all of the information that they give you; that way you will know what they can and can not do. You should have been asked to designate one primary caregiver who can make decisions, that is the person who can make requests for durable medical equipment, medication changes, and other needs. Other people can ask, but hospice will wait for the primary to tell them what they want before bringing anything out, because the primary is the one who has signed on the line to be responsible for the equipment, etc..

We do not always see the same nurse, bath aide, phyical therapist, etc...; but for the most part, they have all been wonderful folks. Pop is so fond of his primary bath aide that he made me go out to the garden and pick some tomaotes and sweet corn to have ready for her when she comes today!

I am an RN, so I did have a little bit of difficulty switching from nurse mode (where I'm in charge) to daughter/caregive mode (where I have to listen :) ). Luckily, the nurses have been willing to work with me on both levels.

Lisa - if your lady is aspirating, has she had a speech therapy consult? If not, ask for one. They can teach her exercises to help strengthen the muscles in her throat. This is often done with stroke victims.

    Bookmark   August 3, 2006 at 3:36PM
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One thing to keep in mind is that if any insurance companies are involved, they are the ones who determine when hospice care is needed. When my mother went on hospice, a doctor had to sign paperwork for both Medicare and Blue Cross stating that she had a condition that would cause her death in six or fewer months. My guess is that all of the people asking you why your friend isn't on hospice don't truly understand what hospice care is all about. There's a profound difference bewteen an elderly woman with some dementia/health problems and a person in the last stages of heart failure, cancer, diabetes, etc.

    Bookmark   August 7, 2006 at 11:13AM
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chickaroonie, I feel for you. We ended up doing the hospice route only because we know it will *eventually* be needed and so much pressure was put on us to do it. What a mess! Took 2 hours for telephone help with a semi urgent matter - one hand didn't know what the other hand was doing type of thing. We've go more meds now than we know what to do with - gets so confusing sometimes. I truly think my client was better off via private routes. But again, I have no doubt hospice will come in handy one day.

poly, she's been evaluated and had the swallow test done - all was okay. She currently has an infection of unknown origin (we think UTI) and was surprised that antibiotics were prescribed. Everyone held their breath thinking it would be denied.

Hospice is definitely a learning lesson. I honestly think we got better care privately. However, when the time comes, I may be more positive. Just don't know.

    Bookmark   August 19, 2006 at 5:04PM
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Another hospice episode happened today and I'm still steaming. Last week my client started running a fever and hospice diagnosed her over the phone with a UTI and prescribed children's liquid antibiotic WHICH SHE HATED and continuously refused to take no matter how it was presented. So, when I came on shift today and learned how little medicine she actually took during my absence, I called hospice to get the pill form instead of liquid and the person on call got rude and argumentative with me! She overrode my voice and told me in her raised voice, "What do you want us to do? This infection is part of her end stage of life". LOL!!! I was like, excuse me? You don't even know her and what does an infection have to do with minor CHF and dementia? Told her it was HER office that originally diagnosed her with a UTI and it was HER office that prescribed an antibiotic, etc. etc.

Good grief, we had private nurses out every other day prior to hospice and now it is like pulling teeth to get one out when needed over and above her once weekly visit.

So much for being told how much extra support and care we would receive once we got her on hospice... it's turned out the be the opposite so far.

Sorry ya'll but thanks for letting me vent.

    Bookmark   August 20, 2006 at 9:40PM
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Vent away!! It really sounds as if your hospice is not as well staffed as you would expect it to be. This happens!! Perhaps by next month, things will be better. Let's hope so.

Stick with it and work with it when you can, ignore it when you can't. At least, they have her enrolled and will be there when you really need them.

    Bookmark   August 20, 2006 at 10:09PM
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Not much improvemnt in our Hospice experience either. One day last wk Mom got a powder bath on the upper part of her body to save time- really not appropriate for a lung cancer patient. This aide also forgot to take her patient list with her, which was given to the next aide who came. She told my sister to report the other aide for both issues. That brought about 3 phone calls from the powers to be. This Mon we had another sub nurse who ordered meds & supplies in advance of Ernesto. We received 2 prescriptions a replacemnt one to alter mood as Medicare/Hospice will only cover certain meds...the other a sleeping pill we've never had before- but not the most important one, the pain med for her leg wound. Nor did we get bed pads & today is Thursday.Mom is unable to use bed pan so you can imagine the extra work.
Yes we can go buy our own, & yes we do continue to be grateful that there is hope of pain med being available when needed. But looking at the experience so far, it's been a disappointment. Hope to change my mind soon.

    Bookmark   August 31, 2006 at 7:53AM
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I know this is such a distressing problem for you. Your Hospice doesn't seem to have the best trained personnel.

Let's hope that it gets better soon. It's so much more comforting to feel that they can be depended on to care for the patient as they should.

Is there only one Hospice group in your area? If you have more than one, it might be worth while to check on one of the others. We have several. One of which is a non-profit one.

The non-profit one seems to have the best reputation of all of them. Perhaps because of being non-profit, they attract a lot of voluteers that help beef up the staff. Our daughter-in-law spent her last days there. They had a special room set up for the last hours and afterwards. It was large, with couches, nice furniture, greenery, flowers, with plenty of space for the family to stay if they felt like it. They had combed her hair (and I think they used a little makeup. She looked very nice) and we all had a chance to visit with her and the rest of the family as long as we liked. I think it made a big difference with her young children. They could see their mother at peace in more normal surroundings than a casket in a funeral home. Death was not the weird display that most people see.

    Bookmark   August 31, 2006 at 9:10AM
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