Glossary

Usual activities an individual engages in throughout the day such as eating, bathing, dressing, getting in and out of bed, and using the toilet.

An illness with an abrupt onset from which the patient is expected to recover.

A document usually a living will ora medical power of attorney containing an individual'sinstructions about future medical care should they become unable to participate in medicaldecisions due to serious illness or incapacity.

The process by which an individual makes decisions and arrangements relating to their future healthcare. Such planning can be carried out by appointing a substitute decision maker or by completing an Advance Care Directive.

A medication (e.g. Hyoscyamine, Scopolamine) which is often provided in the hospice 'comfort pack that can help decrease oral secretions.

Feelings of fear, dread, or uneasiness.

The cessation of breathing for a short period of time, usually lasting less than 20 seconds but sometimes lasting for as long as a minute.

The process of grieving and mourning the loss of a loved one.

An opioid medication, often used in hospice. It has analgesic effect (pain control) without the "high"of other opioid medications. Can be administered as a patch.

An antidepressant medication (trade name-Wellbutrin).

A patch which contains the opioid medication, buprenorphine. The patch is changed weekly.

The restarting of a patient's heart or breathing by manual or mechanical means.

A term used in hospice for the individual (usually not a medical professional) who provides physical and emotional assistance to a family member or friend.

In hospice and palliative care, it's a state of physical, emotional, and mental exhaustion experienced by those providing long-term care for seriously ill patients, often due to the intense and continuous nature of their caregiving duties.

An ongoing condition or illness that doesn't respond completely to treatment.

Centers for Medicare Services (CMS)–The federal agency that administers Medicare benefits.

A pattern of abnormal bowel movement characterized by any of the following: passage of hard, small stool; skipping days without a bowel movement; straining at stool

The Macy Catheter is a specialized, FDA-cleared medical device used in hospice and palliative care for the comfortable administration of medications and fluids via the rectal route. It is primarily used when patients are no longer able to swallow (the oral route is "compromised") and other methods like sublingual or subcutaneous (SubQ) administration are insufficient or impractical.

A decline in mental functioning that's more significant than would be expected due to aging.

The determination of the nature and cause of symptoms made by a medical professional, usually a physician.

An interdisciplinary approach to ensuring continuity of care after discharge from a hospital or other acute care facility. Whether the process is formal or informal, discharge planners work tocoordinate assessments, recovery goals, planning and implementation between hospitals, healthcare providers, community organizations and caregivers.

A DNR (do not resuscitate) document is a doctor's order instructing the healthcare team not to attempt cardiopulmonary resuscitation (CPR) when the patient's heart or breathing stops. The DNR order must be requested by the patient, family member, or legally designated individual, and  must be signed by a doctor to be valid.

A laxative (stool softener) used to treat and prevent constipation.

A laxative medication that stimulates the colon and is used to prevent or treat constipation.

Difficulty in swallowing.

The symptom of difficulty breathing, especially during exertion or when lying down. Can be presentat rest when disease is advanced.

Swelling caused by excess fluid trapped in the body's tissues, commonly affecting the legs, feet, and ankles.

A diagnosis based on weight loss, decreased appetite, poor nutrition, and inactivity.

A strong opioid medication used to treat pain. Administered as a patch of different strengths. The patch is changed every 72 hours.

According to Medicare, they are: Routine Home Care, Continuous Home Care, Inpatient Respite Care, and General Inpatient Care. Each are designed to address varying patient needs for symptom management that can occur during hospice care.

Advanced, skilled care that is provided outside the home in a Medicare approved facility (usually a hospital) for hospice patients who need short-term management of severe symptoms. The patient remains in hospice during a GIP stay.

A comfort medication that is helpful for anxiety, restlessness, and nausea.

See substitute decision maker.

Refers to bleeding caused by the rupture of a blood vessel.

A philosophy and type of care focused on providing comfort, dignity, and support to people with terminal illnesses whose life expectancy is 6 months or less.

When the patient is actively dying, and death is expected within hours or day(s).

The process by which a patient is provided with detailed information about a medical treatment or procedure, including its risks and benefits, any alternatives, and then voluntarily agrees to proceed.

Refers to a lack of blood flow caused by an obstruction, as in a vessel blocked by a blood clot, or narrowing as a result of advanced atherosclerotic disease ('hardening of the vessels').

A condition or illness that is progressive, terminal, and cannot be reversed by treatment.

Refers to medical procedures and techniques used to prolong or sustain life when one or more vital organs fail.  Common examples include: mechanical ventilation (respirator) to support breathing, cardiopulmonary resuscitation (CPR), artificial nutrition and hydration through feeding tubes, dialysis for kidney function, Intravenous (IV) fluids, and  pacemakers.

A type of advance care directive document containing an individual's wishes regarding medical treatment at the end of life should they become incapacitated and unable to communicate. A living will may also be referred to as a directive to physicians, healthcare declaration, or medical directive.

Encompasses a range of services designed to meet the medical, personal, and social needs of individuals who are unable to perform basic activities of daily living over an extended period of time.

A comfort medication that is helpful for anxiety, restlessness, and shortness of breath.

The Macy Catheter is a specialized, FDA-cleared medical device used in hospice and palliative care for the comfortable administration of medications and fluids via the rectal route. It is primarily used when patients are no longer able to swallow (the oral route is "compromised") and other methods like sublingual or subcutaneous (SubQ) administration are insufficient or impractical.

State programs that provide health insurance to people who meet the criteria of qualifying for benefits.

In hospice, a medical director is a physician who works closely with the patient’s physician and hospice care team to create the care of plan for the patient.

A type of advance care directive document in which an individual designates a person to make decisions about their medical care if they become unable to communicate. A medical power of attorney directive is sometimes referred to as a Durable Power of Attorney (DPOA) for healthcare. The person named in the directive is referred to as the healthcare proxy or agent, surrogate, or attorney-in-fact.

A provision available to anyone who qualifies for Medicare to receive the hospice benefit if they are assessed to be appropriate for hospice services (diagnosed with a life-limiting illness and a life expectancy of six months or less). All medications, equipment, and supplies related to the life-limiting diagnosis are covered, along with all visits and services from hospice staff.

Refers to cancer that spreads from its organ or tissue of origin to other parts of the body.

An opioid medication used to treat pain.

A laxative medication that is used to prevent or treat constipation.

An opioid that is helpful for pain and shortness of breath. Part of the standard hospice 'comfort pack.'

A condition where the skin appears patchy and discolored, often with a marbled or web-like pattern, typically due to poor blood circulation.  Often seen at end of life.

An opioid medication containing hydrocodone and acetaminophen

Generic name for Zofran, used for nausea

Also known as Zyprexa, it is a medication that can be used for agitation but is also commonly usedas an 'anti-emetic' (relieves symptoms of nausea and vomiting).

A healthcare professional who is available 24/7 to provide immediate medical care, support, and guidance to hospice patients and their families.

Narcotic medications such as morphine, used for the treatment of pain and shortness of breath.These medications are used frequently in hospice care and are part of the 'comfort pack' providedby hospices at the time of admission. Examples include: morphine, hydrocodone, oxycodone,hydromorphone, fentanyl, methadone, buprenorphine.

Bacterial or viral infections that would not normally cause a problem in a healthy individual but can become serious or even life-threatening in patients with an impaired immune system.

An opioid medication used to treat pain. Common brand name is Oxycontin.

A device provided by hospice that takes air from the room, and delivers concentrated oxygen through a tube or mask for the person to breathe.

Treatment designed to lessen or relieve symptoms in patients with chronic illness.

Provided by a trained therapist, physical therapy is intended to allow the patient to improve mobility following surgery, disease, or injury or to maximize diminished physical strength and mobility to maintain as much independence as possible.

Stands for: Physician Order for Life Sustaining Treatment. It is a portable medical order that documents a patient's wishes for end-of-life care.

Generic name for Miralax, a laxative medication used to prevent or treat constipation.

A legal document designating one person to act in a legal manner on another's behalf.

Also referred to as "Pressure injury", the localized breakdown of the skin due to being in the same position for a prolonged period of time.

An estimate, given by a doctor, based on their experience with many patients with the same disease or disorder who are of similar in overall health and age, of how the disease will progress. A prognosis may or may not include life expectancy, depending on the severity of the disease and the likeliness of cure.

Relating to the lungs and their function.

A strategy to slow breathing by breathing in through your nose and then breathing out slowly through the lips shaped like one is whistling.

Generic name of Seroquel, a medication that is used to decrease restlessness and agitation.

The process by which a written certificate of life-limiting illness is provided by the hospice physician for each benefit period the patient is in hospice. Recertification is possible as long as the patient continues to qualify for service as determined by the hospice physician.

The initial meeting between a patient, their caregiver, family members and the hospice staff to discuss services.

Education and licensing requirements vary by state, requiring either an Associate of Science inNursing degree (ASN) or a Bachelor of Science in Nursing degree (BSN), in addition to passing a licensing exam.

A medication used to relieve nausea and prevent vomiting

Refers to the stage of a chronic disease, such as cancer, marked by a lessening of the intensity orprogression of symptoms, or cessation of the disease process. Partial remission refers to a decrease in symptoms; in complete remission, there's no evidence of disease.

An arrangement made by hospice on a case-by-case basis to provide care for the patient for up to five days to provide a rest period for the caregiver. Care may be provided at any of several types of Medicare-approved locations. Following the respite stay, the patient returns to-home hospice care.

Revocation during hospice care refers to the act of a patient or their legal representative deciding to voluntarily end or withdraw from hospice care services.  The patient may elect to reenter hospice care after having 'revoked.'

A level of hospice care provided in the patient's home or other place of residence (Nursing Home,SNF) focusing on managing symptoms and providing comfort through regular visits from thehospice team, including nurses, aides, and other professionals.

A mucus collection that usually takes place in the nose, mouth, or throat. It is common for this toincrease at end of life.

A laxative medication that stimulates the colon and is used to prevent or treat constipation.

A laxative medication that stimulates the colon and is used to prevent or treat constipation.

A health condition that carries a high risk of mortality AND either negatively impacts a person's daily function or quality of life.

A person chosen to make medical decisions for an individual only when the individual no longer has the capacity to make or communicate decisions for themselves. In the US, this substitute decision maker is referred to as a healthcare proxy or healthcare agent. Most states have laws permit substitute or surrogate decision makers to make decisions for patients without advance care

With regard to hospice care, it is an illness, that per a physician's determination, has reached the stage where life expectancy is 6 months or less if the illness runs its expected course.

A condition often seen in the final stages of life, characterized by agitation, confusion, and anxiety, making it difficult for patients to remain calm or still.

Refers to excess saliva, fluid in the mouth and throat. Occurs at end of life and sounds like a 'rattle.'

Movement of a patient from one place to another. Depending on context, may refer to movement from a bed to a wheelchair, relocation from one ward to another or from one facility to another.

Referring to the bladder and kidneys.

A measurement of pulse rate, oxygen level, respiration rate, and blood pressure.

An antidepressant medication (generic name-Bupronion).

A medication used to decrease the symptoms of nausea