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How your government officials have responded

Our thanks to Shauna Stone for her efforts to maintain this page

The Issues
 

To be a continuous care hospice patient you must be in need of eight or more hours of nursing care per day.  Only about 10% of hospice patients experience medical complications extreme enough to merit eight hours or more of nursing care as their body begins to shut down during their couple of weeks. Because of the nature of the typical continuous care patient the continuous care patient census goes up and down more than the patient censuses of other levels of hospice care. Despite that the nurses and nurses aids that provide continuous care need a steady pay check and can’t hang on to a job that may require them to work 60 hours one week and 12 hours. These nurses know that there is a well documented nursing shortage and there are plenty of other places that will give them a steady paycheck and allow them to make plans more than a few hours in advanced. Because a hospices’s nurses need a steady paycheck even though the hospice does not know if they will have enough patients to bring in enough revenue to cover their expenses, it is not financially feasible for a hospice to provide continuous care with out the use of outside agency. The only way for them to provide a stable and financially feasible continuous care program is to higher the amount of nurses that they would need on average, and contract with the more expensive outside agency only when their census goes above average.  Fortunately staffing agencies avoid these financial pitfalls by contracting (as needed) qualified CNAs and LVNs to send to a client hospice when they need it or to one of several busier hospice when they do not, and thus keep their nurses both paid and working.

§        42 CFR 418.80

Currently the regulsation reads " Except as permitted in 418.83, a hospice must insure that substantially all the core services described in this subpart are routinely provided directly by hospice employees.  A hospice may use contracted staff if necessary to supplement hospice employees in order to meet the needs of patients during peak patient loads or under extraordinary circumstances. If contracting is used, the hospice must maintain professional, financial, and administrative responsibility for the services and must assure that the qualifications of staff and services provided meet the requirements specified in this subpart."

To understand the dangers of this regulation you must first understand the role of the hospice surveyor in the enforcement of Medicare regulations and the guidelines they have to follow. To ensure that hospices are following their regulations the Center for Medicare and Medicaid Services (CMS) randomly sends out surveyors to hospices. These surveyors spend about 2 or 3 work days looking through all the records kept by the hospices, interviewing patients and their families, and observing patient care. If they find that a hospice is out of compliance they can impose heavy finds on the hospice or take away their license. Unfortunately the vague regulation mentioned above is the guideline given to surveyors concerning when the use of outside agency is acceptable. This makes this regulation very dangerous for continuous care because it leads many hospice surveyors to believe that they should discourage hospices from using outside agency to take care of their patients on a routine basis. Through the Medicare Modernization Act congress tried to give hospices their need additional staff on a routine basis by giving them the ability to contract with other hospices. Unfortunately this does not help patients or hospice's when there is not enough staff to go around. As with most companies, hospices are very reluctant to share their client's information with their competitors for fear of building their competitors and eventually losing client's to them. For hospices short on staff, staffing agencies are the only other alternative that hospices can use when they do not have the adequate staff and do not want to deny a patient appropriate care.

        Regrettably CMS unintentionally deters the majority of hospices from providing continuous care by discouraging hospices from using outside agency on a routine basis. Such limiting provisions is pointless because of the ending of 42 CFR 418.80 which If contracting is used, the hospice must maintain professional, financial, and administrative responsibility for the services and must assure that the qualifications of staff and services provided meet the requirements specified in this subpart. This basically means two things. One, if the staffing agency used by the hospice fails to follow the Medicare regulations applicable to it, then the hospice will be held responsible for their actions. Two, the hospice better be able to prove that the nurses they use are qualified.  If the nurse is fully qualified and must stay within the Medicare laws applicable to it, why does it matter who he/she directly works for? Why should patients be forced to go without when there are qualified nurses who want to care for them? If hospices were allowed to more freely use qualified and experienced outside agency to guarantee their patients continuous care if necessary they could begin to build and expand their continuous care programs.  Larger continuous care programs would mean better care for continuous care appropriate patients and less tax payer money.

I have seen the devastating effects on my grandfather, my family, and me when my grandfather was denied his right to continuous care. I know that if patients that need eight or more hours of nursing care do not receive continuous care they will probably have to spend their last few weeks in and out of ICU units. It is not right to needlessly force tens of thousands of American patients a year to spend their last few days in and out of ICU units where their family time is very limited and the nurses are too busy to properly manage their pain. It is in the interest of the patients and their families that hospices should have the ability to use qualified and specialized outside agency whenever they do not have adequate staff.

 Tales from our Trips

In late October we made our 2nd trip to D.C. While there we spoke with the offices of Kay Granger (Ft. Worth representative), Arlen Specter (Pennsylvanian senator), and Tom Harkin (Iowan senator). The office of Kay Granger was willing to work with us the other offices were a bit less receptive. The office of Allen Specter gave us a few helpful names to contact, but only scheduled us for a ten minute meeting. Tom Harkin's office allowed us to drop of some information, and said they would get back to us during the holiday intercession, but one month into the break they have yet to review our information. Before going to D.C. we also contacted the offices of Jose Serrano and Roger Wicker neither responded to us.

 Before we left D.C. we met with Judi Lund Person and Jonathan Keyserling the Vice President of State & Regulatory Affairs and the Vice President of Public Policy & Communication respectively from National Hospice and Palliative Care Organization which is the largest palliative care lobbying group with over 80% of the nation's hospices as members. Both were willing to listen to us, offer suggestions, and tell us about some of the concerns that CMS has voiced to them. They informed us that they play a minor consulting roll in the regulations that CMS puts out concerning hospice. They also told us that CMS had asked them why more hospices are not providing continuous care, and that the upcoming hospice regulations should be in our favor.

At the end of last month we contacted the offices of Dallas/ Fort Worth representatives Joe Barton, Michael Burgess, Eddie Bernice Johnson, Ralph Hall, Jeb Hensarling, Sam Johnson, Pete Sessions, Charlie Stenholm, Houston representatives Chris Bell, Kevin Brady, John Culberson, Tom DeLay, Gene Green, Shelia Jackson-Lee, Nick Lampson, and Jim Turner, San Antonio representatives Henry Bonilla, John Carter, Lloyd Doggett, Chet Edwards, Charlie Gonzalez, Ruben Hinojosa, Ron Paul, Ciro Rodriguez, and Lamar Smith, senator Kay Bailey Hutchinson, and senator John Cornyn. To be fair we were asking for a meeting with the busy senators within three weeks of sending the letter. However the lack of response from all of the above except for the office of Gene Green, whom we did meet with, is completely unacceptable. These are your representatives let them know that you want them to be more responsive to the needs of the dying.

2004 goals

Our agenda for January in the area of patient advocacy is….

§         Try to incorporate a new non-profit public awareness organization to further advocate the needs of the dying.

§         Once again try to set up a meeting with the CMS writers of the new regulations concerning continuous care due to come out at the end of this month or the beginning of the next.

§         Contact American Cancer Society, American Association of Retired People, and Last Acts to see if they are interested in trying to help us.

§         Contact National Hospice and Palliative Care Organization and see if they can tell us anything about the up coming regulations.

§         Try and find other possibly helpful organizations.

§         Contact the Fort Worth Star Telegram, Dallas Morning News, and Fort Worth Weekly and see if they are willing to run an article over continuous care awareness. 

Our the agenda for February