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What If? Glossary

Children's Hospice International®
Glossary Of Key Hospice Terms
http://www.chionline.org/resources/glossary.phtml

Care of the Terminally Ill Child Glossary
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/terminallyill/glossary.html

Acupuncture Points - anatomic points on the body used in acupuncture.

Advance Directives - documents that a person can complete to ensure that healthcare choices are respected.

Alternative Therapy - use of an unproven therapy instead of standard (proven) therapy.

Anticipatory Grief - the deep emotional distress that occurs when someone has a prolonged illness and death is expected often by the patient as well as the family. Anticipatory grief can be just as painful and stressful as the actual death of the person.

Autopsy - an examination of the organs and/or tissues of the body after death. An autopsy is often used to determine the cause of death and may also be done to research the fatal disease for future diagnosis, treatment, and prevention strategies.

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. (National Hospice Organization glossary)

Chaplain - a member of the healthcare team who provides spiritual counseling, support, and pastoral care. The hospital chaplain can also act as a liaison to local clergy.

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.

Complementary Therapy - therapies used in addition to standard therapy.

Computed Tomography Scan (Also called CT or CAT scan.) - a diagnostic imaging procedure that uses a combination of x-rays and computer technology to produce cross-sectional images (often called slices), both horizontally and vertically, of the body. A CT scan shows detailed images of any part of the body, including the bones, muscles, fat, and organs. CT scans are more detailed than general x-rays.

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.

Developmental Age - a broad term used to describe the maturity of thought process development. A child may be older or younger in his/her thinking and processing information than others at a similar age.

Do Not Resuscitate (DNR) Order - a formal request by a person or a person's family to not take extreme measures to save his/her life. A DNR order is usually reserved for a person near death or with a terminal illness who, even if resuscitated, would not have a high quality of life or a long period before death would occur despite resuscitative efforts. DNR orders can specify how much intervention is desired prior to death (i.e., do not use cardiac drugs, oxygen, chest compressions, etc.).

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. (NHO glossary)

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 period of time. (NHO glossary)

Guided Imagery - envisioning a certain goal to help cope with health problems.

Home Care Services: Professional hospice care that is organized so that it is provided by the interdisciplinary team at the patient's/family's home.

Hospice - literal meaning is "a place of shelter." Today it refers to supportive care of a terminally ill patient.

In-Patient Services: Formally organized services designed to provide and coordinate hospice interdisciplinary team services to patients/families in an in-patient setting. (NHO glossary)

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 state and the federal governments, that provides medical aid for children and families who fall below a certain income level.

Mourning - the period of time following a loss. Similar to grief and bereavement, a loss may be of a loved one, or loss of an ideal (divorce, job, home, etc.). Mourning may be short or very long and may relate to cultural and religious customs.

Pain Specialists - oncologists, neurologists, anesthesiologists, neurosurgeons, and other physicians, nurses, or pharmacists who are experts in pain. A team of healthcare professionals may also be available to address issues of pain control.

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. (NHO glossary)

Palliative Care: Intervention that focuses primarily on reduction or abatement of the physical and psychosocial symptoms of terminal illness. (NHO glossary)

Prognosis - a prediction of the course of disease; the outlook for the cure of the patient.

Psychological/Social Services: Counseling and/or therapy (as appropriate) that assists the patient/family in minimizing stresses and problems that arise from social, economic, or psychological situations and assists the patient/family in maximizing positive aspects and opportunities for growth. (From NHO glossary).

Respite Care: Temporary care of a child by hospice practitioners, in order to provide parents or family members with some time for mental and physical rest.

Right To Refuse Treatment - options for treatment are offered that may extend the child's life but not provide a cure; the family has the right to refuse this type of treatment.

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.

Total Parenteral Nutrition (TPN) - children undergoing treatment for cancer sometimes need TPN to help meet their nutritional needs. TPN is a special mixture of glucose, protein, fat, vitamins, and minerals that are given through an intravenous line (IV) into the veins. Many people call this "intravenous feedings."

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 psychosocial support to the patient/family during the remaining days of the patient's life. A bereavement care volunteer agrees to provide psychosocial support to the surviving family following the patient's death. (NHO glossary)

Other pages in this section
What If?
What if: part 1: Your child's last days
What if: part 1: Your child's last days links
What if: part 2: Funerals
What if: part 2: Funeral links
What if: part 2: Eulogies
What if? Part 3: Grief and Loss Resources
What if? Part 3: Grief and Loss Links
What if? Part 3: Grief and Loss Resources: I'm not a mother anymore.
What if? Part 4: Difficult Days
What if? Part 4: Not Just Another Day
What if? Part 5: Children and Death and Funerals
What if? Glossary

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