Hospice Patients Alliance: Consumer Advocacy


CHOOSING THE RIGHT HOSPICE IN YOUR AREA



Which hospice you choose is only an issue if there are more than one hospice agencies in your community. In remote areas, you may only have one service provider, however, in any greater metropolitan area and surrounding counties, you most likely have many hospices in your area. The best way to find out how many hospices exist in your area is to look in your local yellow pages under the heading "hospice." You can search online for hospices as well from links we provide at our Find Hospice page.

Larger hospices may be better able to pay for frequent newspaper advertisements, but that does not make them better hospices. In addition, because a hospice belongs to a "hospice organization" (whether national or Statewide) does not make that hospice superior to other hospices in the area. Some hospices may choose not to join the State or national hospice organization, because they do not wish to pay fees/dues to the organization (feeling that they may not get their money's worth) or due to political considerations which have nothing to do with the quality of care.

A better indicator of quality hospice care is to find out if the hospice is accredited by an organization such as The Joint Commission. If a hospice is accredited by The Joint Commission, it agrees to inspections by The Joint Commission and must meet higher standards of care than those hospices who are not Joint Commission accredited.

Many small hospices provide excellent care. Ask your physician for the names of all hospices in the area or contact a social worker (discharge planner) at one of the nearby hospitals and very specifically ask for the names of all hospices serviing your area.

Do not simply assume that your physician or the hospital social worker will automatically give you all possibilities. If you do get a referral to one particular hospice, ask for reasons why the hospice is better than the others in your area. Openly discuss your needs with your physician, because your attending physician is ultimately going to be in charge of your care and all the services you receive.

If your physician refers you to one hospice, he or she will most likely have very good reasons for choosing that hospice. However, it may simply be that that hospice is chosen because it is part of the same health care "system." If your physician is a specialist who regularly works with terminal patients, he or she normally will recommend a hospice for its superior services.

Which hospice you choose is one of the most important decisions you will be making. If you know anyone who has utilized a hospice in your area, find out what their experience was like. A good reference from someone you know and trust, and who recently used a hospice, is one of the most reliable sources of information, however even these references may be "subjective" evaluations, and your situation may be different from theirs.

Much information can be gathered by visiting different hospice facilities and speaking with the staff, finding out how many patients each nurse takes care of on a shift (are they adequately staffed?), observing how clean the facilities are, and speaking with the families of patients at the facilities. Even if you plan on staying at home, a visit to a hospice's facilities will give you a "feel" for how the hospice operates.

If it is early on in the course of the illness and you want extensive information about a particular hospice, you could call your State's Department of Health Services (each state has varying names for these...such as Dept. of Public Health or Bureau of Health Services) and ask for the phone number and address of the State's "Freedom of Information Office." By law, each State's administrative division inspects, licenses and certifies the hospices to see if they meet the uniform standards of care set by law in Federal and State regulations for hospices. When an inspection is performed, a "survey summary" is completed and must be made available to the public. Write to the State offices and specify that you are making a request under the Freedom of Information Act and wish to receive a copy of the survey summaries for the most recent inspection of the hospices in your area, and a copy of any inspections performed as a result of any complaints filed with the Department. These survey summaries provide detailed information that will give you an idea about what kinds of problems might be occurring in a local hospice.1 These surveys contain information that the hospice will definitely not voluntarily reveal to you!

If a complaint had been filed, the State surveyor will look through the "medical record" or "chart" to see if there is evidence that the complaint "allegation" or "charge" is verifiable. If there is evidence that a violation occurred, the surveyor will state that there is a "basis" for the complaint and "cite" the agency in violation of a particular standard. Then the hospice will have to file a plan of correction to remedy the violation which occurred. If the surveyor writes that a complaint is "unsubstantiated," it does not mean that the violation did not occur! It simply means that the chart does not show whether it occurred or not...there isn't enough evidence in the chart, and the chart is the "legal record" of the care that was or was not given.

Choosing a hospice is an important step in keeping your loved one comfortable. Whichever hospice you choose, being informed about the care and services which you are entitled to receive, and clearly communicating your wishes will help you obtain the very best care.



1

Surveys are usually performed by the State surveyors who are part of your State's health facility licensing and certification division. For any violation of the Federal regulations (found at 42 CFR part 418), the surveyor will refer to the specific section of the Code of Federal Regulation. She will also include "Tag numbers" which are used to further separate one type of violation from another. The States usually perform these surveys, because each State certifies and licenses the U.S. Medicare programs operating within that State.




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