Glossary of Terms
Activities of Daily Living (ADLs): Basic actions that independently functioning individuals perform on a daily basis:
- Transferring (moving to and from a bed or a chair)
- Caring for incontinence
Many public programs determine eligibility for services according to a person's need for help with ADLs. Many long-term care insurance policies use the inability to do a certain number of ADLs (such as 2 of 6) as criteria for paying benefits.
Advanced Directive (also called Health Care Directive, Advanced Health Care Directive, Living Will, or Health Care Directive): Legal document that tells your doctor what kind of care you would like to have if you become unable to make medical decisions. It specifies the kind of treatment you would want if you have an illness you are unlikely to recover from. It also specifies whether you would like to be kept on artificial life support if you become permanently unconscious or are otherwise dying and unable to speak for yourself.
Aggressive treatment: When a patient chooses to continue with lab work, diagnostic tests and curative treatment, and is not looking at comfort measures.
Apnea: A condition that causes a person to stop breathing for a period of time. It may be 15 to 60 seconds before the person takes another breath.
Attending Physician: The licensed physician who would normally be expected to certify and recertify the medical necessity of the number of services rendered and/or who has primary responsibility for the patient's medical care and treatment.
Benefits: Monetary sum paid by an insurance company to a recipient or to a care provider for services that the insurance policy covers.
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.
Bereavement department: Grief specialists who work with the family for up to 13 months after the death.
Caregiver: A caregiver is anyone who helps care for an elderly individual or person with a disability who lives at home. Caregivers usually provide assistance with activities of daily living and other essential activities like shopping, meal preparation, and housework.
Care Plan: A written plan for your care. It tells what services you will get to reach and keep your best physical, mental, and social well-being.
Cheyne stokes respiration: Breathing pattern characterized by a period of apnea lasting 10 to 60 seconds, followed by gradually increasing depth and frequency of the respirations.
Chronic: An illness or condition that cannot be cured, but is not progressive or life-threatening.
CNA: Certified nursing assistant
Cognitive Impairment: Deficiency in short or long-term memory, orientation to person, place and time, deductive or abstract reasoning, or judgment as it relates to safety awareness. Alzheimer's Disease is an example of a cognitive impairment.
Comfort kit (ER kit): Medications usually ordered at the time of admission for symptom control.
Concentrated care (continuous care): A level of care initiated when a patient’s symptoms are not being controlled. During concentrated care, a nurse can be placed at the bedside for eight-hour shifts until symptoms are under control.
Confidentiality: Your right to talk with your healthcare provider without anyone else finding out what you have said.
Conservatorship: A court case in which a judge appoints an individual or organization to be responsible for managing the financial affairs and daily living of another adult is unable to care for himself or herself due to physical limitations.
Dementia: Deterioration of mental faculties due to a disorder of the brain.
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.
Durable Power of Attorney (DPA) for Health Care: A form of advance directive in which a person chooses an individual to make healthcare decisions for them. It becomes active any time the person is unconscious or unable to make medical decisions and can help provide guidance to loved ones and doctors in making decisions about medical care.
Dying: The progressive failure of body systems to retain normal functioning, thereby limiting the remaining life span.
Dysphagia: Difficulty swallowing.
Dyspnea: Difficulty breathing, especially when lying down or upon exertion.
Election of hospice benefit: When papers are signed and the patient is admitted to hospice.
Face-to-face visit: A hospice physician or nurse practitioner must have a face-to-face visit with patients every 60 days to determine continued eligibility once the patient has been on service longer than the two initial 90-day periods. The visit must take place prior to the 180-day recertification.
Failure to thrive: A diagnosis based on weight loss, decreased appetite, poor nutrition and inactivity that arises from various medical conditions that indicates a loss of functional skills and psychological decline.
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.
Hospice: A philosophy of care which addresses the physical, social, emotional, and spiritual needs of patients with life-threatening conditions and their families.
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.
IDT: Interdisciplinary team meeting where all members of the primary care team meet to review the patient’s plan of care.
Impending death: When death is expected within the next two to three days.
Ischemic: Refers to a lack of blood flow caused by an obstruction, such as a blood clot
Interdisciplinary team: The staff members who together make up the patient’s team of caregivers: e.g. nurses, LSW, chaplains, CNAs, volunteers, grief specialists and medical director.
Living will: A written, legal document that describes the kind of medical treatments or life-sustaining treatments individuals would want if they are seriously or terminally ill. It does not allow you to select someone to make decisions for you.
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.
Medicare hospice benefit: Anyone eligible for Medicare is qualified to receive the hospice Medicare benefit if they are appropriate for hospice services, with a prognosis of six months or less. All medications, equipment and supplies related to the terminal diagnosis are covered, along with all visits and services from hospice staff.
Mottling: When skin has a bluish/purplish color. This is due to circulation slowing down as the blood supply to the area is decreased. It is often seen on the bottoms of the feet, ankles or knees, and is common over bony prominences. It can come and go quickly. Not everyone experiences mottling, but it is common.
On-call nurse: Hospice nurse who is available 24 hours a day to meet the needs of the patient, day or night.
PCG: Primary caregiver, the designated as the patient’s primary “go-to” person at the time of admission.
Pain and symptom management: In hospice, the goal of all interventions is to maximize the quality of the remaining life through the provision of palliative (comfort) 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 the reduction of the physical and psychological symptoms of terminal illness; comfort measures are provided instead of aggressive treatment.
Percutaneous Endoscopic Gastronomy (PEG): a surgical procedure for inserting a tube into the stomach to provide food and water when the patient is unable to take nutrition by mouth
PO: Medications given by mouth.
POC: Plan of care, which is developed for each patient depending on his or her needs.
POLST: (Physician’s Orders for Life-Sustaining Treatment) A legal order created by a doctor which provides guidance to other doctors and first responders about a patient’s wishes in a medical emergency, including CPR, treatments such as advanced breathing interventions, medications, fluids, and nutrition.This document can be changed at any time.
Primary care team: Includes the hospice medical director, nurses, MSWs, CNAs, chaplains, volunteers and grief specialists.
PRN: As needed.
Prognosis: The likely course that a disease or illness will take; a doctor’s opinion about how someone will recover from an illness or injury
Psychological/Social Services: Counseling and/or therapy, as appropriate, that assists the patient and family members in maximizing positive aspects and opportunities for growth.
Recertification: A written certification of terminal illness for each benefit period the patient is on hospice. Initially there are two 90-day periods, followed by an unlimited number of 60-day periods, as long as the patient continues to qualify for service as determined by the hospice medical director.
Referral: This takes place when hospice staff meet with patients and loved ones to talk about our services. Meetings are held when and where it’s convenient for the patient and their loved ones. Referrals are provided free of charge and without obligation.
Remission: A period of time during which the symptoms of a disease are abated or markedly reduced. In cancer, a remission indicates that the signs of symptoms have decreased or disappeared.
Respite stay: A five-day stay used to provide rest for both the caregiver and patient. Care is provided at various locations, and placement is made on a case-by-case basis. The patient returns home after the respite stay and returns to routine home care.
Secretions: A sound caused by the accumulation of secretions at the back of the throat and around the lungs that is caused by the inability to cough and clear secretions due to weakness.
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.
Sublingual: Medications given under the tongue.
Transdermal patch: A drug-impregnated adhesive patch applied to the skin for controlled release of a medication, such as fentanyl patch.
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.