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Am just now starting to look into a future hospice scenario for my 92 year old mother. Way back when it seemed there were just a few publicized ones out there. Here in Arizona I was familiar with the names and had a pretty good idea which way to go. Now it seems like every home health agency has one and they have just popped out all over like weeds - many of the names I don't even recognize. Anyway, I am familiar with the hospice concept generally and what it does and does not offer. So, knowing this...is it worthwhile to research them? Does it really matter in the end which one to choose when the services are so similar?

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There are two basic types of Hospice
For Profit
Not for Profit.
The Hospice I chose happened to be a Not for Profit. I could not be more pleased with my decision.
If your doctors office, or your Mom's doctors office has a suggestion you could ask them for their recommendations.
If there are any nearby go in and talk to someone. Just like you would interview anyone for a position, or evaluate a new Doctor or Dentist. If you are talking to one that is Not for Profit ask how well they are funded.

Big thing to keep in mind...once you select a Hospice provider you are not bound to them. If there are problems you can call and ask to talk to a supervisor. Although most Hospice have "teams" and you would be assigned to a specific team there is more than 1 nurse on the team, there is more than 1 CNA on the team so if you do not like who has been assigned you could request someone else. It might take time to reschedule people though. And as a last resort you can always either drop Hospice completely if you do not like the approach they are taking or you can contact another Hospice.
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AlvaDeer Aug 2019
Some of the not for profits are like the not for profits hospitals in that they are a lie. They ARE profitting and big time. Medical industry can protect itself in a million ways to prevent falling into "profit" including self insuring personnel, etc. Most have become something entirely different than what hospice was once. I am a retired RN and remember real hospice. I hope to goodness there are a few good ones left, but there are none I know of. My friend spent her entire career in hospice. It is very changed. I think that vetting it very carefully may be the answer.
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Absolutely, totally, and can't state it any stronger:   research and shop for hospice.    I learned enough shopping just for home care to know that there are some real unsavory people out there pretending to offer services. 

When I knew it was time for hospice, I spoke with the treating medical team at that time (my father was hospitalized).    The highly recommended treating physician recommended that also.  I spoke with the Discharge Planner, who recommended only one hospice company:  the one the treating physician used to work with, as an executive.

I contacted them; the individual with who I spoke wanted to sign Dad up that very day.  She was aggressive, not particularly cooperative, and I knew within 10 - 15 minutes I would never take him there.

I had a checklist which I used for others which I called, some of which were really peculiar.    When I settled on a Catholic nonprofit as the leading contender, I arranged for an interview, met with an Intake person, toured all aspects of the facilities, and documented all my questions.

Someone from another division came out to interview me; when I raised issues asked by other hospice companies, she stated that she could not discuss, or ask, about that specific type of information.   Yet all the other companies wanted that kind of information.  I realized then how improperly they approached admission and addressing personal issues.  

I can't recall specifically right now what information it was that was privileged; I certainly had enough experience with privileged information not to blurt out anything.   But I was impressed that this woman had high standards, imposed by the hospital affiliated with the care facility providing hospice.  

My decision worked out well; this was the best facility at which I ever took my father.    The Sister on site offered me food and comfort, visited my father, as did the priest.    But it was informal; no one was garbed in religious attire.

The DON was outstanding, as was the Social Worker.   One of the rough days (I think it was the day we made the decision to switch to hospice), the head nurse on duty then brought me a plate of food, thermos of coffee and water.   

I'm not religious, but I was never in a position to find religion to be an issue.  And it might have been the best decision I made for my father.   Looking back, I'm SOOOOOOO glad I didn't even investigate the other contenders more than I did.
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Research matters, especially if you have several hospice agencies in your area. I chose the one that sent a daily (including weekends & holidays) aide in to sponge bathe my dad, wash his hair, brush his teeth, shave him and diaper him. I changed him at other times during the day - but that daily visit was great socialization for him! Plus, the social worker and chaplain came by to visit, too - once a week or bi-weekly. Our hospice nurse came once a week and we had great 24/7 call service and emergency nurse visits if needed. The nurse relayed info to the doctor, who made care decisions based on the nurse’s observations.Two hospice volunteer visits each week allowed me to run errands. We were given plenty of diapers, disposable bed pads, Medicare hospital bed, wheelchair (we wanted an upgrade, so bought one out-of-pocket), bedside table/tray. Except for the last 3 of 18 months hospice care, my dad was wheelchair bound, but still quite frail and failing. When he became bedridden, hospice aide tried to be there midday and I hired help for two hours in the morning and two hours in the evening. Goal was to keep him clean, comfortable, turned appropriately to avoid bedsores. Our hospice agency was the only one in the county with a dedicated state-of-the-art short term hospice care facility for those near the end of life who needed round-the-clock skilled nursing. Dad didn’t need it, but my mom was admitted to the facility after hospitalization following a massive stroke/ brain bleed. She died peacefully in the hospice facility after five days. Staff and volunteers were wonderfully caring to both my mom and the family.

On the the other hand, my cousins chose a hospice agency that provided a weekly doctor’s personal visit. I’m sure that took a chunk of $$$ from that agency’s overall budget. The agency they did not provide the daily home certified-nursing assistant that we enjoyed, nor was it associated with a hospice skilled nursing care facility.

My sister, living in another state, found a hospice agency for her husband that provided as needed face-time calls with the hospice doctor, a skilled nursing facility if needed, daily caregiver visits, social worker, chaplain, nurse, hospital bed, supplies, wheelchair, etc.

Each hospice agency gets a daily lump sum per patient from Medicare. The agency pools the funds and decides what services it’ll provide within their budget. Ask questions, seek input from others who’ve used hospice agencies in your area. Also look for online reviews (instrumental in my sister’s decision for choosing an agency to go with).
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Yes research matters. My experience with hospice was unfortunate in the beginning of my mother's dying process. It was not a long drawn out experience like some. My mother entered a hospital in-patient facility after being hospitalized and diagnose with blood clots and she had dementia. The in patient hospital hospice was exceptional. The problems came on when she came home. The nurse was clearly overworked and lacked any type of compassion. I had no supplies such as diapers, medicine etc.. and my mother was clearly in pain . So It took me one day to sound the alarm to another hospice called Amedysis. I knew of them when my mother needed home healthcare. They were responsive, diligent to ensuring I had all of the supplies and meds I needed, offered me support, and sent caring nurses weekly then daily. I read an article as to how Hospices are not regulated like nursing homes and since payment is automatic through Medicare, you have to do your due diligence into ensuring that you get the proper care and support, otherwise it will stress you out because you now have to be a hospital without staff. So please don't just talk to the facility because they know how to fudge their services as the best. Talk to actual patients or families. There was a hospice website to report abuses and good experiences. I hope to bring that back because too many families are being shafted because of lack of regulation. And lastly, once your parent is in hospice, you can change at any time to another one. I did within 24 hours because I saw the handwriting on the wall and I was not going to be stressed out for her care as she was passing away..
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tornadojan, it is good to start learning about Hospice now so you have time to digest the material.

I never heard of hospice until my Mom was in the hospital, and the case worker told me about this wonderful group. Thus, I used the Hospice group she recommended. A meeting was set up so the group could explain their work, and for me to ask any questions. I also used the same group for my Dad.
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Hospice has become something that is just another cog in the military industrial machine. When I was in nursing and hospice first began it was miraculous. Specially trained personnel who helped, who were actually THERE to help and to work with families and patients for quality care and comfort. Now it is in the realm of "You get a CNA for a bath 5 times a week, and a visit by an RN if you are on pain meds and.............blah blah." So yes, indeed, DO shop and make it clear to them that is seems no longer a vocation....it is now just a job in the medical industry. That you want what hospice should be. It does matter. Vet them carefully.
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gdaughter Aug 2019
It's heartbreaking to me to have studied and know what it is SUPPOSED to be, and what it now seems to be. Totally opposite from it's original roots and intentions all because of $$$.
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Thanks, everyone, for your thoughtful and detailed responses. Glad to hear I am not "jumping the gun" by starting the research process now. I anticipate the service would be provided where she is as opposed to her actually moving into some sort of hospice facility.

Twenty years ago, when my dad died (in the hospital) of congestive heart failure a hospice person showed up to give support as they were actually trying to get my dad into a hospice facility (he died that same day so it never happened). However, the woman was very kind and supportive and actually ended up being with my mom when he died. (Of course, he died in the literally 5 minutes when I left the room to go home and walk my dog.) Anyway...I very much appreciated that she was there especially for my mom at that moment, and obviously I have never forgotten her. I don't know if that would have been the scenario today. I hate being cynical, but these comments confirm that hospice has become in large measure another money maker for the health care industry.
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gdaughter Aug 2019
I hope you don't feel badly about not being there when your dad passed...that often happens, when love runs deep and someone doesn't want to burden the other...they wait until the person steps out. Your pup needed you too:-)
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Both of my parents were on hospice. I would get to know the “group” you think about choosing. We had no major issues with the groups we used. My mom was on and off hospice several times as she had Parkinson’s and at times improved. In the end of life, we called back the group (and the nurse) we felt the most comfortable with. She happened to have parents who knew mine and she happened to have known both my mom and dad most of her life. She was there for the care of both Mom and Dad.

Dad was on hospice for over 3 years. He had prostate cancer that had spread to the kidney, lungs, and bones. I was told he would have a “speedy demise.” He didn’t, but his cancer diagnosis and his continued decline did enable him to stay on hospice for all that time. He had marvelous male CNA's who became his genuine friends.

Last week, I had my 92 year-old aunt admitted to a local hospice house owned and managed by one of our hospitals. My aunt had fallen a week before and fractured her femur, no surgery could be done due to her age and the fact that she had previously had hip replacement surgery. She also had advanced Alzheimer's. The hospital where she was admitted after her fall, wanted me to send her to a Rehab facility and even provided “their” list of possibilities. The Nurse practitioner said she was not a match for rehab, yet the case manager wanted us to place her in rehab. I called the hospice facility and asked them if there was any possibility of having her admitted. In less than 24 hours she was in this lovely facility.

Because I had visited a friend at this particular hospice house, I knew about it’s high recommendation and the caring staff. This was a great fit for her. The entire staff from the intake nurse to the Social Workers were fabulous. The nurse saw that my sister-in-law was playing hymns on her phone to calm and comfort my aunt and immediately went to retrieve a CD player and lovely CD's of hymns. They played that for her most of the time.

Having the necessary pain medications for end of life (including pain patches for break-through pain) are in my opinion a modern medicine blessing. I am grateful for the way it calmed and relaxed my parents and my aunt when they each needed it most. The medications do not speed up death, but they do allow it to take it’s natural course and keep the patient from the discomfort that the dying process brings.

Research the groups you know about. Ask your family, friends, neighbors if they’ve ever used a particular group and what they learned. “Word of mouth” may be the best advertisement for a hospice group, believe me if they did not meet the needs of the patient, your friends will voice that.
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Judysai422 Aug 2019
If you participate in a neighborhood FB page, post a question there, too.
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VITAS was the worst experience of my life. They gave very little supplies and I ended up having to buy diapers, wipes and gloves. I filed complaints against them with Florida ACHA including the fact they sent me a bill for Rocephin which I gave intermuscularly (I'm a RN so I know how to do this). I had to fight with them to get that paid. VITAS is FOR PROFIT, and trust me it shows in their very poor care. I also fired Cornerstone hospice because they were dictating to me how I should care for my mom and that nurse practitioner was a horrible condescending b*** and she also lied to me. I do not appreciate any healthcare professional lying to me. So I fired them. Lying is pointless because they will eventually be found out and trust goes out the window.

I'm happy with Good Shepard Hospice. Point is this--if you are not happy with the hospice you sign up with, you can easily revoke it by signing a paper, and get on a new hospice. You do not need a doctor's order because Medicare will see them as being hospice even when you revoke them.

Whatever you do, if you hear or see VITAS--RUN FOR THE HILLS!

***VITAS IS HORRIBLE***
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Yes, it matters. I got kind of snookered into Palliative Care vs. Hospice Care when my mother was in EOL. Ergo, I did not know enough about either and wish I had, but there was no time to research it as she was at death's door. I wish I had had the time to learn about the terms before hand. It is a good idea for you to garner as much knowledge as you can.
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