Hospice Patients Alliance: Consumer Advocacy


Hospice uses a "team approach" to providing health care. The patient and family make up the first part of the Team. The patient and family help to make decisions about the care they need, want and will (or will not) accept. Because the patient and family are part of the Interdisciplinary Team and are also recipients of the care services, the most important first step in hospice is to properly inform the patient and family about all services which may be provided. The proper informing of the patient and family is called "Informed Consent" and must be given in writing and explained so that the patient and family understand the scope of services which may be provided.

  • Sec. 418.62 Condition of participation--Informed consent.

    A hospice must demonstrate respect for an individual's rights by ensuring that an informed consent form that specifies the type of care and services that may be provided as hospice care during the course of the illness has been obtained for every individual, either from the individual or representative as defined in Sec. 418.3.

Hospice services are provided to you by members of the Hospice Interdisciplinary Team. The Team is made up of Nurses (Registered Nurses, Licensed Practical Nurses, and Home Health Aides), Home Service Aides, Medical Social Workers, Chaplains, Counselors, Dietitians, Therapists, Volunteers, Hospice Medical Director (supervision of your medical care), Pharmacists (supervision of your medications).

Each of the hospice professionals may provide services by directly visiting with the patient and family and some may provide services from the hospice's offices. The hospice benefit also provides for all the medicines, equipment, treatments, and supplies which are needed to manage the symptoms of your terminal illness and help your loved one to be comfortable.

The four Levels of Care hospices provide are:

  1. General Routine Home Care

  2. Respite Care

  3. Continuous Nursing Care in your own home (if you have symptoms which are uncontrolled and cause a crisis

  4. General Inpatient Care in a hospice facility, hospital or nursing home (under arrangement between the hospice and facility)

The actual level of care your loved one receives depends upon his or her condition. As your loved one's condition changes, the level of care must change if needed to meet your loved one's and the family's needs.

The type of services and level of care your loved one receives depends upon your loved one's condition and changing needs. At the time of admission, the RN case manager will take note of the patient's symptoms, evaluate and assess the needs of the patient for various services and report to the attending physician what the patient's current status is and what orders may be needed to start hospice care services geared to the patient's needs. The social worker and other professionals may also contact the physician for orders to provide the care which is their specialty.

The members of the Interdisciplinary Team will meet to discuss your loved one's care needs and how best to provide services which will meet his needs and the family's needs. The wishes of the patient and family regarding care must be taken into consideration and respected by the Interdisciplinary Team. Yet, the services provided must be "reasonable and necessary" under the regulations which govern hospice services. In other words, the services provided must be appropriate to help improve the comfort of the patient, manage symptoms, deal with other difficulties such as emotional distress, problems with coping, grieving, nutrition, problems the patient may have with routine tasks around the home (activities of daily living), and help with other problems all of which relate to the terminal illness.

If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Care and visit our resources and links section (with hundreds of vital resources listed).

Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you wille consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law.

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