AIDS Initiative

About Hospice
Common Concerns
Links to AIDS Resources

About hospice

Hospice offers coordinated services to persons with advanced AIDS who want to retain control of their care and who have a variety of needs relating to comfort and control of symptoms. The goal of hospice is to improve the quality of life by including you in your medical treatment decisions, managing your pain and other physical symptoms, and providing a range of services to support your needs and the needs of the significant people in your life.

Comprehensive care is provided by a team of professionals which may consist of a doctor, nurses, social workers, spiritual counselors and other therapists. Primary roles of each professional in your care are listed below:

The hospice doctor works closely with your primary doctor and all members of the hospice team.
Skilled registered nurses visit you at home. Communication between team members provides for consistent coordination and monitoring of all services and enables any treatment changes. Nurses work closely with your doctor.
Social workers are available for counseling, support and coordination with other community services. The social workers may assist with obtaining legal services, child custody planning and medical directives.
Pastoral care counselors are available to address your grief and spiritual needs and those of the significant people in your life.

Available services may include:

Management of pain and other physical symptoms.
Assistance with personal care and activities of daily living provided by home health aides or home attendants.
Support for your significant others such as guidance in caregiving techniques as well as bereavement counseling.
Short-term inpatient care for symptom control, if necessary.
Direct telephone access to hospice staff 24-hours a day, 7 days a week.
Trained volunteers to provide help and companionship for you or to give your primary care partner respite.
Coordination of medications, therapies, supplies and equipment in the home.
Therapies such as massage, art or music therapy and nutrition or dietary counseling.

Common Concerns Persons Living With AIDS Have About Hospice Care

Where does hope fit in hospice?
Hospice believes that hope is an essential ingredient providing support and direction. As your illness progresses, the focus of hope shifts to maintaining your quality of life.

When is hospice appropriate?
Hospice is an appropriate choice when the goal of treatment is comfort and management of pain and physical symptoms to ensure quality of life.

Is hospice a place? May I be cared for at home?
Hospice is not a place, but a philosophy of care which affirms life and exists to provide support and care for persons in the last phases of disease so that they might live as fully and as comfortably as possible. All hospice programs emphasize care at home, whether in an individual's home or supportive care residence.

May I continue to be cared for by my doctor?
Yes. Hospice encourages you to retain your primary doctor. The hospice team will coordinate your care with him/her. If you do not have one, hospice personnel can assist you in identifying and selecting a doctor.

Will I still be able to receive treatment of opportunistic infections?
Treatment of infections and symptoms associated with AIDS will be determined on an individual basis by you and your doctor.

I live alone. Can I still be admitted to a hospice program?
Yes. A live-in caregiver is not a requirement for care. Hospice programs do request that you designate a "primary care person" - a partner, friend or family member who will maintain contact with the hospice team and participate as needed in your care.

What happens when I need to be hospitalized?
All certified hospice programs have access to inpatient units designed to meet your intermittent acute care needs. When it is appropriate and necessary, inpatient care may be provided in a hospice contracted facility.

Will my insurance cover my hospice care?
Hospice care is usually covered by most insurance policies as well as Medicare and Medicaid. Hospice staff will help you to determine the extent of your medical coverage. No one is refused services for inability to pay.

Can I leave hospice?
Hospice service is your choice. You may improve or stabilize to a point where hospice care is no longer needed. However, should your condition change, you may be eligible to resume hospice service at a later time.

How can I obtain services?
Residents of California may call the intake worker at any of the programs listed on this site.

Residents outside of California should contact the National Hospice & Palliative Care Organization at:
1-800-658-8898