Hospice Patients Alliance: Consumer Advocates


Many of the larger hospices have their own facilities where care is provided for their patients. These facilities are often located in greater metropolitan areas, and are staffed by specially trained hospice staff that are experienced in caring for the terminally ill. In cases where a family is unable to care for their loved one at home, placement in a facility can assure that the patient receives the care needed.1 Some patients feel that remaining at home to die would be too difficult for the family to handle, or feel a need for privacy in front of their family. Having care provided in a facility allows the family to remain "family" and not assume the role of "nurse" and "family." Some families have no problem providing the nursing care necessary, while others cannot handle seeing their loved one's decline and pain or suffering.

However, if it is the patient and family's strong wish to remain at home to die, then the family must gather all resources available to make efforts to assure that there is someone in the home "around the clock" twenty-four hours each day. If necessary, close friends may be relied upon to help provide care in the home. It is possible for the hospice to provide around the clock nursing care (continuous nursing care) in the patient's own home, residence or even in a nursing home, if the patient has symptoms which are out of control and need special attention, or if the patient has arrived at the active phase of dying (See Continuous Care Level of Services - Section 5a). If symptoms are not out of control and the patient is not actively dying, then it is the family's responsibility to provide care when the RN, home health aide and other staff are not making routine visits provided at the "Routine Home Care Level of Care."

When the patient has symptoms which are out of control and resides in a hospice facility, the patient is usually placed on the "In-Patient Level of Care" for which the hospice receives three times the reimbursement it receives when the patient's symptoms are not out of control. (See In-Patient Care Level of Services - Section 5b). If medications are being frequently adjusted in dosage or changed, if monitoring of the patient's condition is more frequent, then In Patient Level of Care may be appropriate. On the other hand, if it appears such interventions should be being made and are not, and the patient is suffering without adequate attention, bring this to the attention of the hospice Registered Nurse in charge of the facility.

The hospice must provide adequate staff to meet the needs of your loved one and to keep the symptoms under control. If the hospice facility is running "short-staffed" and still has your loved one on "In-Patient Level of Care," then it is possible the hospice is fraudulently billing for a higher level of service which it is not providing! You have a right to know when the level of care changes and to see that increased care is provided when the needs of the patient increase. If you have any questions about what level of care your loved one is receiving, ask the staff at the facility.

In any case, problems which arise due to understaffing at the facility are certain to adversely affect your loved one's care. If the facility appears to be understaffed, demand to see the manager and ask what the hospice is going to do to correct the situation. If the problem is not corrected, consider moving to another facility or filing a complaint with the State and Federal government. It is sad to say that those hospices which exploit the situation of the dying, count on the probability that most people will not file a complaint and so they "get away with it." And good hospices who do not "play games" with the regulations, probably find it difficult to believe that such abuse occurs, but it does.

If there is more than one hospice in your area, check out the different facilities which may be available. Find out how many patients each nurse and nursing assistant take care of. See if there are adequate staff to meet the needs of the patients. In rural areas when hospices do not have their own facility, hospices may arrange for the patient to enter an extended care facility (nursing home) or hospital. The hospice staff provide care at the facility in addition to the routine care provided by the hospital or extended care facility. If you plan on using a facility for hospice care, the best time to ask questions is before you enroll in a hospice's program. Because hospice facility staff have the experience and training to manage a wide variety of illnesses and symptoms, placement in a facility may be a good choice for those patients and families who may feel reassured by accessing a facility's services.

1 Hospice facilities must comply with the uniform standards of care set forth at 42 CFR 418.100, must meet the "total nursing needs" of the patients, and keep the patients "comfortable, clean, well-groomed, and protected from accident, injury, and infection." See Section 7a of this text for details of these standards. Hospices must meet all requirements of the uniform standards whether the patient is being cared for in his own home, a nursing home, the hospice's own facility or in a hospital.

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