Hospice Patients Alliance: Consumer Advocacy


NEED TO FIND A HOSPICE?




Most people think of "hospice" as one large organization covering the whole United States or the world. The image fostered by the hospice industry is one caring agency that is "Hospice." However, this is false. There are thousands of hospices located in the United States and in other countries throughout the world. Each is a separate business entity. Each has its own unique characteristics and quality of care.

Some hospices are nonprofit charitable organizations which are dedicated to that charitable mission. Some hospices are for-profit corporations, basically making money is the underlying goal while providing hospice services. If a corporation is for profit, it may have stockholder interests in mind when it makes decisions regarding the care and services it chooses to provide or not to provide. Benefits to the stockholders do not always equal the best care for your loved one or you! However, there are some excellent for profit hospices as well as nonprofit hospices.

It is important to try to get "references" from friends or family (if you can) about their recent use of the hospice being considered. A positive report from someone you trust and know well is the most reliable indicator of the type of care you can expect from any hospice.

To find a hospice for children with terminally ill diseases, please take note that not all hospices are set up to provide pediatric hospice care. Please contact Children's Hospice International for information on hospices that have programs to care for children.



Searching for a Hospice


If you wish to find a hospice here are some suggestions:

  • Yellow Pages Directory
    The most complete way of searching for a hospice in any area is to look at the printed yellow pages phone book in that area, because the internet listings may not be as complete. Look for the hospices listed in the category "Hospice."

  • Hospital Medical Social Workers
    If your loved one has entered the hospital due to a terminal illness, the hospital medical social worker has expertise in helping you find resources in your community. The social worker can (and must) provide you with a list of all hospices in your area. If the social worker only informs you about the hospital's own hospice (or a hospice which is part of the same healthcare system as the hospital) then a violation of the standards of care has occurred. You have a right to be informed of all options available to you, and the social worker must provide that information to you.

    Planning for discharge from an acute care hospital actually starts the moment a patient enters the hospital, because arrangements have to be made so that a bed is ready for the patient in the facility or home to which he or she is transferred. We recommend that you actually start actively looking for a hospice as soon as you find that your loved one has a terminal illness, so that you have time to evaluate each one and choose the hospice based upon its superior service to the community. Some families wait until the last day their loved one is in the hospital to then decide where the patient should go. At that point, they may be acting under the pressure of having to place their loved one somewhere without the time needed to adequately consider all options.

  • Search for Hospices over the Internet Yellow Pages
    You can also search for hospices in the several versions of internet yellow pages online:

  • Use other Search-Engine Yellow Pages
    Other search engine/portals all have directory listings for yellow page like directories). Type in the area where your loved one lives or the nearest city and then search for hospices (as the "Category").

  • Ask the Doctor!
    One of the fastest way to find a hospice in your loved one's area would be to speak with his treating physician and get his or her recommendation.

Once you locate a hospice in the area, you can call and speak with their admissions department and get information about the services they provide. It is a good idea to write down your questions about hospice services before you call the hospice, so you can get answers to all your questions before you enroll in any hospice program. For example, if your loved one wishes to stay at home till the very end, you may wish to ask if the hospice provides "Continuous Nursing Care" if symptoms go out of control. If they do not provide continuous care under such circumstances where symptoms are out of control, then they are most likely not in compliance with the standards of care in hospice. Making sure the hospice provides the services your loved one will need is one of the best things you can do to help your loved one have a death with dignity!

There is a special accrediting organization called, "Community Health Accreditation Program" or "C.H.A.P." which has been granted authority by the federal government to conduct separate and independent inspections of hospices (and other agencies) in place of State conducted inspections. CHAP has higher standards of care than the minimum standards set by the states and federal government. Relatively few hospices have completed the procedures to become accredited by CHAP. Click here for the listing of CHAP accredited hospices.

Another accrediting organization which has higher standards is the Joint Commission On the Accreditation of Healthcare Organizations. You can contact The Joint Commission and inquire about local hospices that may be accredited by The Joint Commission.




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