Hospice Negotiations


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Hospice Negotiations

Postby gulfcoastpsp » Sat May 11, 2013 3:17 am

What is the best method to negotiate with a prospective hospice company a regarding PSP diagnosis? Can a primary and specialist doctors continue care after hospice admission? What about the medical codes for billing if these doctors can continue seeing my loved one with PSP? Finally what is the best medical collaboration method for my loved one? All my best,
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Re: Hospice Negotiations

Postby Robin » Sat May 11, 2013 10:54 am

Hi there,

I'm not sure why there's a need to "negotiate"? My suggestion is to have the neurologist be the MD who orders hospice. (We had the MD fill out an RX form.) But I'd only work with the neurologist if you like him/her and if he/she is responsive via email or the phone. Otherwise, work with the primary care physician. The referring diagnosis should be PSP (unless there's another more serious condition).

Your family member can continue to see the MD who ordered hospice. Seeing other MDs would be considered on a case by case basis. In general, you can't see any MD about the referring diagnosis other than the MD who ordered hospice and the hospice MD.

Sorry, I don't know anything about codes.

I suggest interviewing multiple hospice organizations (if you have a choice) to see which you and your family member like the best.

Robin
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Re: Hospice Negotiations

Postby eplowman » Sun May 12, 2013 12:02 am

Please allow me to inject an observation here, based on our experiences with my late Rose's neurologists, other doctors, and finally, the hospice. Because patients differ, please know that I am NOT an advocate of one-size-fits-all solutions or guidelines. What worked in our case might not work with others. My comment is offered for any illustrative value it might have.

(1) Once a definitive diagnosis has been made, there is little that a neurologist can =do= for the patient thereafter. PSP is untreatable, incurable, and progressive.

(2) A good primary care physician (willing to educate himself/herself on the basics of PSP) becomes a more important priority -- someone who deals with a wide range of health issues: constipation, incontinence. diet, exercise, minor injuries, allergies, infections, aches and pains, and so on. A "family doctor of the old school genre," I like to say -- someone who takes personal interest in the patient (and the patient's main caregiver or advocate), who is knowledgeable, friendly, approachable, patient, and truthful but positive and tactful.

(3) Except for PSP, Rose was otherwise in exceptionally good health -- as she had been most of her life. Early on, we instituted an exercise regimen at home aimed at maintaining "otherwise" good health for her -- making her legs serve as pumps to help maintain circulation, respiration, digestion, etc. (mainly with the use of manual, then later, motorized, pedal exercisers operated while she remained seated). Following diagnosis of PSP in 1999, we had quarterly, then semi-annual, appointments with a movement disorder specialist in the neurologist's office (an hour's drive away as of 2004); her main role was to keep Rose upbeat and encouraged, which I appreciated immensely. But other than that, these visits frankly were a waste of effort, time, and money. We discontinued them as Rose's condition progressed. We made appointments with occasional specialists as needed (allergist, orthopedist -- to treat injuries from falls), but we had no primary care physician coordinating things.

(3) When Rose's condition deteriorated to the point where she qualified for hospice, I learned that the hospice doctor was a gerontologist by training and practice, and had maintained his private practice, including some of the hospice patients. I asked him if he were permitted and willing to be Rose's primary care physician. He replied, "Yes" and "Yes." But there was a catch. He said that although the hospice had enrolled several other PSP patients in the past, he had not had any direct ongoing contact with them, and knew little about the disease and what a doctor should know in caring for a PSP patient. He said he would like to come to the house on mutually convenient occasions and learn from us about PSP! (Wow, what a deal! We readily agreed.) He came several times, usually with the hospice nurse, observed and asked us many questions (and took notes!). I gave him links to some web pages about PSP and to our forum. He took time to become acquainted with our weekday caregiver, and offered her a few tips. He instilled confidence -- Rose sensed she was in good, competent hands. As it turned out, we never had to summon him for medical treatment -- but knowing he was on call -- at our place -- in case of need was reassuring to both Rose and me. We had hospice care (weekly visits by a nurse) for two years.

Executive summary: Get a good primary care physician to handle and coordinate care for your loved one who has PSP, and don't exclude the hospice doctor from your list of possible candidates for the job.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Hospice Negotiations

Postby gulfcoastpsp » Tue May 14, 2013 2:34 am

Hello ALL, particularly, Robin & Ed... Thank you for the valuable/intelligible responses. How does one go about with the durable medical supplies, the "FINAL" solution that is acceptable for comfort....
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Re: Hospice Negotiations

Postby Robin » Tue May 14, 2013 10:23 am

Hospice can provide these supplies, in which case it would be paid for by Medicare or most other insurance providers.
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Re: Hospice Negotiations

Postby gulfcoastpsp » Thu Jul 11, 2013 2:09 am

My family member was admitted into home hospice in Texas. Collectively, my family qualified three hospice companies. We had to revoke hospice service with our primary choice within one month due to capacity/response rate issues, an operational issue.

Our spill towards each hospice candidate was do not do a cookie cut/rubber stamp approach for a PSP patient. Think about it...

I find that hospice staff in my opinon somewhat complicated with uneducated with rare disorders, including management. As a PSP advocates, we should focus on educating all hospice staff. It is my opinion that ALL hospice PSP patients should be provided immediately during the admission process a "Alternating Pressure Air Mattress Overlay Low Air Loss System" for comfort. Make ALL PSP patients comfortable during the hospice transition particularly with dystonia present.

What else should be provided?
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Re: Hospice Negotiations

Postby Robin » Thu Jul 11, 2013 9:12 am

It sounds like your family had a very professional approach to evaluating, hiring, firing, and educating hospice agencies. Great work!

I hope your loved one with PSP and other family members see some benefits from having hospice on board.
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Re: Hospice Negotiations

Postby tdeel » Sat Jul 20, 2013 10:05 pm

I'm going to share my experience with hospice/home health care for my mother. About 14 months ago we ask mom's primary doctor to assistant us in getting some help bathing mom. No, trouble at all. When the agency contacted us, we realized we had to decide between home health or hospice. We decided hospice basically so that the agency/nurse could talk with the doctor and get mom's meds. One catch to this was that we had to use the doctor contracted by the agency. We didn't have a problem with this, the doctor was actually closer to home. Mom stayed with hospice care for about 9 months. She then had to be dropped by hospice because her condition stabilized. Home health with the same agency picked her up, but dropped visitation from 5 days a week to 3 days for bathing and monthly visits by a nurse rather than weekly. About 3 weeks ago we were told mom was going to be dropped by the agency. Why? Because the agency's pay isn't as good for home health as it is with hospice. I'm still not sure about the REAL reason. My mother, that is in her own home without anyone else living there, bed fast, not able to talk and totally dependent on someone to feed her, bath her, and change her is not eligible for home health or hospice! I could not believe it! We had to agree for a cath to be used so that she could continue to receive services. It's really upsetting that we had to go to that measure to get assistance. We have personal care givers for mom through the work week and my sister and I do the weekends. We only wanted help with bathing, changing sheets, and mom's vital signs. When we had hospice they were coming 5 days a wek because one person cannot do the job alone. I've thought several times about chaning agencies, but mom loves the aides that bathe her. we want what is best for mom. I apologize if it seems that I'm rattling on, but it does help to get this out there for others to know.
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Re: Hospice Negotiations

Postby boxcar9 » Sun Jul 21, 2013 8:45 pm

My mom currently has home nursing care in Illinois (after a recent hospital visit).

We were informed that medicare will only pay for 60 visits and the nurse will come 1-2x a week.

It isn't going to last long for us because Mom is mobile and they also ordered home physical therapy. But you have to have the nursing visits before you can have the home physical therapy.

I have often found nurses to be a great source of information esp about medicare.

In Illinois, a "failure to thrive" will make you eligible for hospice. It will last for 6mos and if necessary, will continue at 6mos intervals. Many times, people do get better with hospice and "graduate" but then go back on it sometime later.

Peace to you and yours
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Re: Hospice Negotiations

Postby tdeel » Wed Jul 24, 2013 12:28 am

I was not aware of a certain number of visits. Thanks for the information.
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Re: Hospice Negotiations

Postby gulfcoastpsp » Fri Aug 16, 2013 3:01 am

We finally found a home, a hospice home, thanks to God and many prayers.

We discovered that during the qualification process, always include and invite the hospice "Executive Director" to the PSP patient environment. Insist on low air press mattress for comport, hospice is about complete comfort...

Our family was told that with hospice, Medicare drops a lump monthly sum payment toward the selected hospice company. It is our opinion this needs further clarification....
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