Hospice Patients Alliance: Consumer Advocacy

The Hospice Patient's and Family's Role
As Part of the Interdisciplinary Team

The patient and family express their needs during the visits made by the hospice professionals. If the patient is unable to express in words how he feels and what his needs are, then the RN case manager and other team members carefully observe the patient for objective signs of the patient's condition. For example, pain cannot be hidden from an experienced and competent hospice nurse. There are nonverbal expressions of how the patient is feeling which the hospice RN case manager will especially be looking for.

The patient and family may directly speak with the hospice team members face to face, or they may also express their needs through phone calls. It is extremely important for the patient and family to communicate as fully as possible. Openly discussing your expectations from the very beginning will help the hospice team members to provide services which satisfy your needs. As the situation changes, it is increasingly important for you to express your needs clearly without reserve. Family members often become "protectors" or "advocates" for their loved ones. Who better to express your loved one's wishes, when she can no longer speak for herself?

It is often difficult for the family and/or patient to pay attention to the information provided by the hospice professional staff when the patient is first enrolled into the hospice's program. However, it is very important for the patient and family to understand that information. Family members who are directly involved in assisting the patient with his care and/or decision making, must read the material and listen carefully, so that they have full information about the hospice's services.

All licensed and certified hospice agencies must provide care which meets the standards of care given in the federal and state regulations governing hospice care and must meet the patient's and family needs which are related to the terminal illness.

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