"Shopping" for Hospice?

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.

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.

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.

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.

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.

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***

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.

About VITAS.... I had an incredibly positive experience with them. They listened, they were responsive, the nurse was a really good match for my husband, we got plenty of supplies. Perhaps because it is such a large organization not all the centers are staffed and run equally well. What I was real clear about is Kaiser's negligent care which made me real clear we we not going to go with their hospice program, it took work and effort to get Kaiser to sign a bypass for VITAS. On another note, I had a homecare worker who did work a few shifts at a hospice facility and quit when she heard the dying be callously treated and verbally abused... we all have to stay alert and proactive.

My experience with Hospice here in my town Amarillo was horrible. Accolade Hospice (has been bought out an now called Tx Home Health & provide home health also) was who we went with my Dad coming out of rehab after a 3 day hospital visit then to a horrible rehab/n.h. for 20 days only because I found out the rehab was not giving my Dad his Hydralazine 100mg 2x a day for 4 days in row because they " ran out"!! Huh? Dad started having all symptoms of heart attack coming. Ive been in med field since 18 so not stupid an figured it out. I called Ambulance rt then when I litterly saw the med pass (pills bing given)& no Hydralazine an asked med person where his Hydralazine was an that they were out an none given. I was livid. Anyway after ER visit an Dad checked out, situation got fixed an I wanted him discharged immediately for fear of his life but had to make sure the treating physician discharged him fr the facility or it would have been a Against Medical Advice discharge (straight fr ER is what I was gonna do but ER Dr actually cared an recommended I spend night with Dad an watch Med passes an get Dr there to discharge)& my parents would have had to pay for all 3 Hospital days an 20 days in rehab an ER visit. Medicare would see it was a AMA fr the rehab. Soooo..since Dad was in alot of pain an multi health probs Hospice was suggested an the home health he had been on for 5 yrs had a Hospice. Man came to talk to Mom an talked to me on phone (I couldnt b there at initial meeting but asked questions. Alit of them.). So we put him on. We were told since he is Diabetic, his 3x a day shots would remain an his INR checks would remain until further notice. He was put on Hydrocodone which is what we wanted. He was put on for his heart. Congestive heart failure an A-Fib so all meds concerning heart related were free for us but only 2wks supply at a time. I was told to let the RN know when getting low so she could reorder. I loaded pills past 5 yrs for both parents so they were ok with that. Bath aid 3x a wk. Diabetic shots 3x a day but as days went on we never knew when a nurse would showup or who it would be an not know Dad or be use to him. One day no one showed. One day no bath. Then I was accused of not getting along with them because I called the Director with concerns of no nurse for shots several times on diabetes after we were ASSURED it wasnt a prob an would be kept done. Then the nurse got Coumadine dose wrong. I caught it. I called an apparently she didnt like it an slowly started not showing up. A diff nurse started coming after my Dad got use to first nurse an comfortable with her. So after 4 mths I get a call fr Social Worker that we are being hard to get along with an saud a bunch of lies that we didnt do an said " We r discharging your Dad in 5 days period!". I was flabbergasted. No discussion prior to this phone call that he might be or thinking of discharging him! I looked up Medicare law on Hospice. They are suppose to let family knowTHINKING of discharge. Nope 5 days an dumped. Now Dad really didnt need to go on Hospice I came to see but they were fine with it. An then couldnt cover his care as a diabetic. Then just dumping him making me have to struggle to get him back as a pt to Cardiologist, Pulmonary, M.D. an Kidney Dr's an meds reinstated within 2 wks. I had to beg director for another 2wks of meds to make it to Dr appts an get old meds back. An pickup at old pharmacy. It was a nightmare. So make sure you ask on what grounds is a pt discharged? How is that handled? How are meds handled? If someone does not show up for care, what do you do? Can you decline certain meds? What supplies are provided? Get it all in writing. Def shop around. That Hospice made 60,000$ off my Dad in 5 mths.

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).

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..

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.

I would say yes it does make a difference. My father was in hospice care in a nursing home and we had to pay for the room and board. The care was divided between the NH staff and the hospice staff who came several times a week. Whenever there was an issue they each blamed each other. On the other hand my mother was taken to a hospice facility and the entire stay was covered by Medicare. I never saw one bill. The care was much more consistent. I wish I had known about that place for my father.

Oh yeah. I suspect it was the same thru much of our country, when it started out. There were not as many, perhaps not as much of a need, but as people learned more they wanted that. The primary role of hospice is care at home, to keep someone comfortable etc. but there was in our area a Hospice House with 24/7 care and no one ever having to pay though they would certainly take reimbursement from insurance as much as possible. Now it seems even our so-called best one does not do that; that people come for pain stabilization etc and anyone staying is apparently private pay. That said, they all claim to do basically the same thing, but some do more, and some for sure do it better. It's a money maker so many agencies jumped into the picture. Even hospital sponsored at-home care, and some nursing homes...and I have heard stories that are disturbing about the low quality care in some. Never forget you are in control and can fire an agency. I had a friend whose father was in a nursing home that had a hospice area/wing. 3 shifts of people and some were dreadful. People are so exhausted and stressed they don't always file a complaint. My friend foolishly was protecting the institution for fear it would reflect poorly on the religion sponsoring it. Check with your long term care ombudsman for guidance or a complaint history. Keep your eyes and ears open no matter what.