Terms to Know

There have been advancements in health care over the year, and it is more important than ever to understand your medical treatment and life-support options. We have included a list of definitions of things you might hear while discussing your end-of-life choices.

Advance Care Planning: The process of making decisions in advance of an illness or injury to express your choices if you became unable to communicate those choices yourself.

Advance Directive: A legal document that lets others know your medical care preferences and who you would like to make decisions for you if you are unable to speak for yourself.

Antibiotics: Medicine used to treat infections caused by bacteria.

Artificially Administered Nutrition and Hydration (Tube Feedings): A way to deliver nutrients and liquids to patients who are unable to eat or drink by mouth. Nutrition is provided by an IV (into a vein) or a tube inserted into your nose, stomach, or intestine (gut).

Artificial Life-Support Choices: Artificial life-support includes machines that are used to assist the body in keeping a patient alive. This can include several systems and we will discuss several in more detail later in this guide.

Comfort Care: Medical care provided with the primary goal of keeping a patient comfortable rather than prolonging life.

Cardiopulmonary Resuscitation (CPR): CPR is used to restart the heart and breathing of a patient. It involves chest compressions (pressing on the chest over the heart), rescue breathing (mouth-to-mouth or with a bag), and if needed, an automated external defibrillator (AED) that can deliver an electric shock to the heart. You have the right to choose your code status, meaning you can indicate if you would like CPR. Ask your doctor for more information if you have questions.

Code Status: This tells health care workers what treatment you would like if your heart stops beating or if you stop breathing. 1. Full Code: You want to receive cardiopulmonary resuscitation (CPR) to attempt to restart your heart or breathing. 2. Do Not Resuscitate (DNR): You wish to receive all appropriate medical treatment but if you stop breathing or your heart stops beating, you would like a natural death.

Do Not Resuscitate Order (DNR): Indicates the wish to not have CPR in the event the patient stops breathing and the heart stops beating

End-State Condition: Medical problem in an advanced state that will eventually cause death and cannot be cured. This can be caused by a disease or an injury.

Health Care Proxy: Adult that you select to make medical or end-of-life decisions for you if you are terminally ill, persistently unconscious, or in an end-stage condition. This applies only if you are unable to make your own decisions.

Hospice Care: Comfort care provided to patients who are expected to die within the next 6 months. The goals are to relieve symptoms as much as possible and provide a peaceful death. As many patients experience a decline in health, they begin to shift their priorities to spending meaningful time with loved ones. Hospice can provide similar care as palliative care and also includes: • Therapies to conserve energy and provide peace. • Respite care that provides a break to family or caregivers. • Home health employees that will help with needs such as bathing or eating. • Support such as grief counseling for family and caregivers.

Intubation: A procedure that is performed when you cannot breathe on your own or it is difficult to breathe on your own. A tube is placed down your throat and into your windpipe to open your airway so that air can get in and out of your lungs. Intubation is also used in many surgeries and with illnesses or injuries that weaken the airway.

Life-Sustaining Treatments: Medical treatment performed to keep a patient alive. Life-sustaining treatment can include: • Antibiotic • Chemotherapy • Ventilator/Respirator (breathing machine) • Cardiopulmonary Resuscitation (CPR) • Tube-feeding • Kidney dialysis • Intravenous (IV) fluids

Pain medication and measures used to keep a dying patient comfortable are NOT considered life-sustaining treatments.

3. Do not Intubate/Do Not Resuscitate: You do not wish to have a breathing machine breathe for you at any point and you would like a natural death if you stop breathing or your heart stops beating. 4. Comfort Care: You wish to only receive care that provides comfort and allows for a natural death.

Living Will: Term used in the same way as Advance Directive or Advance Care Plan. This legal document provides your choices for health care in the event you are unable to communicate them yourself. This plan can express your values and beliefs in a health crisis.

Long-Term Care Facilities or Nursing Homes: These facilities can help patients who have severe injuries or illness and need assistance with personal care.

Long-Term Dialysis: Dialysis involves removing excess fluid and cleaning the blood of waste when the kidneys are not working properly. Dialysis can extend a patient’s life, especially while waiting on a kidney transplant. It is typical for a patient to need three dialysis treatments per week and each treatment can last anywhere from three to five hours. It is important to remember that dialysis does not cure kidney disease.

Mechanical Ventilator (Breathing Machine): This is a machine that breathes for a patient while trying to recover from an injury or illness. It is connected to a tube that pushes air and oxygen into your lungs if you cannot breathe on your own. A ventilator can save lives, but it is important to realize that it cannot cure a terminal illness or prevent the death of a patient who suffers a fatal accident. A patient that is on a ventilator is often sedated and cannot speak or cough. When a patient is unable to cough, the lungs can fill up with fluids, often causing pneumonia.

Palliative Care: Care available to patients who are living with a serious, long-term disease. Treatment for the disease can occur along with palliative care. It can be started at any stage of illness and focuses on: • Symptom relief • Coordinating care such as helping to make doctor appointments • Helping with health care decisions • Support for the patient and family

There are organizations that provide both palliative and hospice care. They can also help with the transition from palliative to hospice care if it is needed. Frequently, the patient has the right to choose that these services are provided at home. Ask your health care provider if you have questions about these services.

Persistently Unconscious State: The patient may have open eyes but the brain has little or no activity. Unlike patients in a coma, these patients will never “wake up” and do not feel pain, hunger, or thirst.

Terminal Condition: Caused by a disease or accident that cannot be cured or reversed. Two doctors must agree that even with treatment, death will likely occur within 6 months.