The decision to begin hospice care is a frightening one for the patient and his family. It may be comforting to know that all hospice patients have rights to ensure they are treated securely, with dignity and respect. These rights, from the Hospice Association of America, are summarized below. Further information is available from local hospice agencies.
Hospice Defined
Hospice is a program or facility intended to care for those people who are nearing the end of life. Generally those patients are expected to have a life expectancy of six months or less. Hospice care is different from other medical care in that hospice focuses on patient comfort rather than curing the condition. Hospice care can be given in private homes, nursing homes, hospitals or specific hospice facilities. Before hospice care begins, patients are given a list of their rights that include the following:
Dignity and Respect
Hospice patients are to be treated with dignity and respect, without fear, neglect or abuse. They are to receive written notification of the services they receive. They may make formal complaints without fear of reprisal if those services are neglected or poorly delivered and they have the right to be notified how the complaint is resolved. Hospice caregivers are not to receive gifts or borrow from the patient or her family.
Decision Making
Hospice patients have the right to take part in all decisions related to their care. They are to be notified of changes in that care. They can choose and/or change their caregivers and refuse care without fear of reprisal. They also have the right to be discharged from hospice at any time.
Privacy
Hospice patients have the right to privacy in all personal, medical, financial and legal matters. Details of those matters are to be given only:
*to those who need the information in order to provide care,
* to those legally entitled to the information.
*to those authorized by the patient.
Hospice staff are to make sure all private information is stored and disposed of properly.
Financial
Hospice patients have the right to know the costs of their care and how much will and will not be funded by Medicare, Medicaid, private insurance etc. They are entitled to access all bills for service and to be notified if Medicare coverage is denied. If coverage changes, hospice patients have the right to be so notified within 15 days. Patients also have the right to know who owns the hospice agency and connections it may have with other agencies.
Quality of Care
Hospice patient have the right to the highest quality of palliative and support care available, including social, spiritual, psychological and physical needs. If a facility cannot provide that care, it is to inform the patient and seek to admit the patient to a more appropriate program.
Services provided should follow doctor's orders and the plan of care created for the patient. Medically-related personal care should be provided by a trained aide, under the direction of a registered nurse.
Responsibilities
With all rights come responsibilities: Hospice patients must treat their caregivers and equipment with respect. They should notify the hospice of changes in condition or schedule. They should also notify hospice staff of any additional treatments, medications or tests not provided. The patient should provide a safe environment in which the care is provided and be responsible for charges incurred.
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