GLOSSARY OF KEY HOSPICE TERMS
Bereavement: An important element of hospice care is an assessment of the needs of the bereaved family, and the development of a care plan that meets these needs, both prior to and following the death of a patient. Hospice encourages the expression of grief, recognizes social/religious and ethnic variables in bereavement, and supports staff and family participation in meaningful funeral services and rituals.
Children’s Hospice: A philosophy of care which addresses the physical, social, emotional, and spiritual needs of children and adolescents with life-threatening conditions, and their families.
Children’s/Pediatric Hospice Patient: A child and his/her “family,” including siblings, grandparents, close extended family members, and close friends.
Chronic: An illness or condition that cannot be cured, but is not progressive or life-threatening.
Community: The individuals, groups, and institutions that compose the geographic area where a hospice program serves.
Denial: A normal defense mechanism often identified among terminally ill patients and family members, in which there is a refusal to accept a medical prognosis.
Dying: The progressive failure of body systems to retain normal functioning, thereby limiting the remaining life span.
Family: The relatives and/or other significantly important persons who provide psychological, emotional, and spiritual support of the patient. The “family” need not be blood relatives to be an integral part of the hospice care plan.
Grief: The highly personal response to loss. Grieving may precede an anticipated death or may be delayed for a considerable period of time. Grief may manifest itself in emotional and/or physical distress and may affect family members in different ways at different times. Some persons may resolve grief with time and their own resources; others may require formal assistance and support over an extended time.
Home Care Services: Professional hospice care that is organized so that it is provided by the inter-disciplinary team at the patient’s/family’s home.
Hospice: A philosophy of care which addresses the physical, social, emotional, and spiritual needs of patients with life-threatening conditions and their families.
Inpatient Services: Formally organized services designed to provide and coordinate hospice inter-disciplinary team services to patients/families in an in-patient setting.
Interdisciplinary Hospice Team: An approach to hospice care which utilizes the skills of physicians, nurses, psychologists, social workers, volunteers, clergy, teachers, administrators, and various therapists, which is led by the child and family.
Life-Threatening Condition: Any illness that, due to its severity or progressive nature, puts the child’s life in danger.
Medicaid: A program, jointly funded by the states and the federal government that provides medical aid for children and families who fall below a certain income level.
Pain and Symptom Management: For the hospice program, the goal of all interventions is to maximize the quality of the remaining life through the provision of palliative therapies that control pain and symptoms and minimize the negative side effects of interventions. Hospice programs recognize that when a patient and a family are faced with terminal disease, stress and concerns may arise in many aspects of their lives. Optimum symptom control includes addressing those stresses and concerns, in addition to the use of appropriate therapies. Symptom control includes assessing and responding to the physical, emotional, social, and spiritual needs of the patient/family.
Palliative Care: Intervention that focuses primarily on reduction or abatement of the physical and psychological symptoms of terminal illness.
Psychological/Social Services: Counseling and/or therapy, as appropriate, that assists the patient/family in maximizing positive aspects and opportunities for growth.
Respite Care: Temporary care of a child by hospice practitioners, in order to provide parents of family members with some time for mental and physical rest.
Spiritual Care: Support provided to the child and family to listen, discuss, and counsel them on issues regarding their individual religion, as well as philosophical or personal questions and issues.
Volunteer: An individual who agrees to provide services to a hospice program without monetary compensation. More specifically, a patient care volunteer is an individual who agrees to serve on an interdisciplinary team as a companion of the patient/family and provide psycho-social support to the patient/family during the remaining days of the patient’s life. A bereavement care volunteer agrees to provide psycho-social support to the surviving family following the patient’s death.