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	Resources Glossary of Terms

Glossary of Terms

Adapted from a variety of sources, including the National Hospice and Palliative Care Organization web site.

Advance directives: You have the right to make basic decisions about the medical and health care services you receive from your physician or other health care providers. You have the right to accept, refuse or take away any treatment. You also have the right to give informed consent before diagnosis or treatment. The federal Patient Self-Determination Act of 1990 requires health care providers and some insurance plans to tell you about your specific right to issue advance directives allowed in your state.

Artificial nutrition and hydration: Artificial nutrition and hydration supplements or replaces ordinary eating and drinking by giving a chemically balanced mix of nutrients and fluids through a tube placed directly into the stomach, the upper intestine or a vein.

Bereavement: An important element of Community 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.

Capacity: In relation to end-of-life decision-making, a patient has medical decision making capacity if he or she has the ability to understand the medical problem and the risks and benefits of the available treatment options. The patient's ability to understand other unrelated concepts is not relevant. The term is frequently used interchangeably with competency but is not the same. Competency is a legal status imposed by the court.

Cardiopulmonary resuscitation: Cardiopulmonary resuscitation (CPR) is a group of treatments used when someone's heart and/or breathing stops. CPR is used in an attempt to restart the heart and breathing. It may consist only of mouth-to-mouth breathing or it can include pressing on the chest to mimic the heart's function and cause blood to circulate. Electric shock and drugs also are used frequently to stimulate the heart.

Caregiver: Community Hospice services are not intended to take the place of care by family members or others who are involved in the patient's care, but rather to support them in the care. With the help of Community Hospice, the person designated as "caregiver" will also participate in the care provided to the patient at home or in the inpatient setting.

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 our hospice program serves. Community Hospice serves the communities of Baker, Clay, Duval, Nassau and St. John's counties.

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.

Do-Not-Resuscitate (DNR) order: A DNR order is a physician's written order instructing health care providers not to attempt cardiopulmonary resuscitation (CPR) in case of cardiac or respiratory arrest. A person with a valid DNR order will not be given CPR under these circumstances. Although the DNR order is written at the request of a person or his or her family, it must be signed by a physician to be valid. A non-hospital DNR order is written for individuals who are at home and do not want to receive CPR.

Dying: The progressive failure of body systems to retain normal functioning, thereby limiting the remaining life span.

Emergency Medical Services (EMS): A group of governmental and private agencies that provide emergency care, usually to persons outside of health care facilities; EMS personnel generally include paramedics, first responders and other ambulance crew.

Family: The relatives and/or other significantly important persons who provide psychological, emotional, and spiritual support to 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.

Healthcare surrogate: The person named in an advance directive or as permitted under state law to make healthcare decisions on behalf of a person who is no longer able to make medical decisions.

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: A philosophy of care that addresses the physical, social, emotional, and spiritual needs of adults and children with life-limiting conditions and their families.

Inpatient services: Formally organized services designed to provide and coordinate hospice interdisciplinary team services to patients/families in an inpatient 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, and which is led by the patient and family.

Life-limiting illness: Any illness that, due to its severity or progressive nature, limits the person's expected lifespan to 12 months or less if the illness runs its normal course.

Life-sustaining treatment: Treatments (medical procedures) that replace or support an essential bodily function (may also be called life support treatments). Life-sustaining treatments include cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, dialysis, and certain other treatments.

Living will: A type of advance directive in which an individual documents his or her wishes about medical treatment should he or she be at the end of life and unable to communicate. It may also be called a "directive to physicians", "health care declaration," or "medical directive." The purpose of a living will is to guide family members and doctors in deciding how aggressively to use medical treatments to delay death.

Mechanical ventilation: Mechanical ventilation is used to support or replace the function of the lungs. A machine called a ventilator (or respirator) forces air into the lungs. The ventilator is attached to a tube inserted in the nose or mouth and down into the windpipe (or trachea). Mechanical ventilation often is used to assist a person through a short-term problem or for prolonged periods in which irreversible respiratory failure exists due to injuries to the upper spinal cord or a progressive neurological disease.

Medicaid: A program, jointly funded by the states and the federal government that provides medical aid for individuals who fall below a certain income level.

Medicare: A program under the U.S. Social Security Administration that reimburses hospitals and physicians for medical care provided to qualifying people over 65 years old.

Medical power of attorney: A document that allows an individual to appoint someone else to make decisions about his or her medical care if he or she is unable to communicate. This type of advance directive may also be called a health care proxy, durable power of attorney for health care or appointment of a health care agent. The person appointed may be called a health care agent, surrogate, attorney-in-fact or proxy.

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: A comprehensive approach to treating serious illness that focuses on the physical, psychological, spiritual, and existential needs of the patient. Its goal is to achieve the best quality of life available to the patient by relieving suffering, by controlling pain and symptoms, and by enabling the patient to achieve maximum functional capacity. Respect for the patient's culture, beliefs, and values are an essential component. Palliative care is sometimes called "comfort care" or "hospice type care."

Psychosocial services: Counseling and/or therapy, as appropriate, which assists the patient/family in maximizing positive aspects and opportunities for growth.

Respite care: Temporary care of the patient by hospice practitioners, in order to provide the primary caregiver with some time for mental and physical rest.

Revocation: The patient has the right to request hospice services to be stopped during any of the benefit periods and to be returned to coverage, for all services, under his/her regular insurance program, if the patient is still eligible.

Spiritual care: Support provided to the patient 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 emotional and practical support to the patient/family during the remaining days of the patient's life.

Withholding or withdrawing treatment: Forgoing life-sustaining measures or discontinuing them after they have been used for a certain period of time.