Acceptable Quality of Life for a Specific Period of Time
"Acceptable quality of life" is not the same thing as "recovery." If you "recover" from an injury or illness, that usually means you're healed - you're "well," or something close to it. An "acceptable quality of life" is something less than healed. How much less? That depends on the person. That's why MyDirectives® feels strongly that you should define what level of quality of life would be acceptable to you in different situations. Two people may have the same injury or illness and have very different ideas about what an "acceptable quality of life" would be following medical treatment. Think about what you feel would be an acceptable quality of life in this specific situation. Then think about how long you'd be willing to accept this level of quality of life.
How can you decide what an acceptable quality of life would be? One way is to tell your doctors and your healthcare advocate, if you've chosen one, what would not be acceptable to you. If medical treatment would save your life, but you were likely to remain in a coma, would that be acceptable? What if you were awake and aware, but unable to move your arms or legs? What if medical treatment would save your life, but you would be required to spend several hours a day, several days a week, at a hospital or doctor's office to receive additional treatment?
A doctor who had been diagnosed with amyotrophic lateral sclerosis (ALS) came up with a useful exercise you might try. As he began to lose function, he made a list of 100 things he did every day. As his disease progressed, he crossed things off his list that he could no longer do. Having that inventory helped him think about what an acceptable quality of life was for him. Consider making your own list of 100 things. Imagine if you had to take away 10 of those things - is your quality of life without those 10 things still acceptable? What if you take away 20 things from the list? What about 30? You may eventually reach a point where so many things have been taken off the list that you feel your quality of life would no longer be acceptable to you - there's your answer.
You can express that answer any way you want by using your own words in the textbox. Maybe you want to say it as a percentage: "If my ability to function on a daily basis is decreased by X percent, that would be unacceptable." Or maybe you want to list some activities that are so important to you that if they were to be taken away, your quality of life would become unacceptable to you. MyDirectives can help make sure your caregivers know your thoughts; the more clearly you express yourself here, the better we'll be able to do that. Above all, make sure your healthcare advocate thoroughly understands your point-of-view.
Advance Care Plan
An advance care plan is a document expressing a person's goals, preferences and priorities for medical treatment that combines all of the elements of a living will, a medical power of attorney, and the person's preferences regarding attempts at CPR, palliative and hospice care, organ donation and autopsy. An advance care plan can also contain other information like emergency contacts, doctors and insurance information. These documents are also sometimes called emergency care plans, emergency medical plans, advance care plans, or critical care plans. They are not subject to the same strict signature and witness or notary requirements as advance medical directives.
Advance Medical Directive (AMD)
A document that allows you to give instructions about future medical treatment preferences in case you become unable to make decisions on your own behalf or can't communicate your wishes, or if a court determines that you are incompetent. Advance medical directives generally include living wills and medical powers of attorney, as well as "do-not-resuscitate" or "do-not-attempt-resuscitation" orders.
The process of becoming older. Aging is determined by genetic and environmental factors. Included in environmental factors may be such items as nutrition, stress, pollution, infections, and more.
All Heroic Measures
This term usually means medical treatments that are undertaken as a last resort with the understanding that although they typically are accompanied by significant pain or other suffering and may cause further damage to a patient's health, any lesser treatment would surely result in the death of the patient. Some examples of "heroic measures" are cardiopulmonary resuscitation (CPR), the use of multiple drugs to maintain blood pressure and heart function in the intensive care unit (ICU), dialysis in a critical care setting, amputation, or other surgery.
Alzheimer's is the most common type of dementia. It is a progressive degenerative disease of the brain leading to loss of memory, language, and other mental functions. Eventually loss of control of muscular function of the body occurs, including loss of swallowing and the ability to control bowel and bladder. Some experts believe certain medications may slow progression of the disease, but unfortunately there is no cure. For more information about Alzheimer's, see dementia and/or visit www.alz.org.
Advance Medical Directives
American Association on Intellectual and Developmental Disabilities (AAIDD)
An international association that promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities. For more information about the AAIDD, visit www.aaidd.org.
Americans with Disabilities Act (ADA)
United States federal legislation passed in 1990 and amended in 2008 that prohibits disability-based discrimination. For more information about the Americans with Disabilities Act, visit www.ada.gov.
A drug used to treat infections caused by bacteria and other microorganisms.
The largest artery in the body, the aorta ascends from the left ventricle of the heart then arches and descends through the chest and abdomen. The aorta carries oxygen rich blood away from the heart and out to the body.
A vessel that carries blood high in oxygen content away from the heart throughout the body.
Artificial (or Assisted) Nutrition and Hydration
A method of delivering nutrients and fluids to the body when a patient is unable to eat or drink. The patient may receive nutritional support through a tube inserted directly into the stomach or intestines (PEG or J-tube), a tube that runs from the nose and throat into the stomach (naso-gastric or NG tube), an IV tube inserted into a small peripheral vein (Peripheral Nutrition), or a tube inserted into a large central vein (Total Parenteral Nutrition or TPN). Artificially provided nutrition cannot be tasted or otherwise enjoyed in the way that people enjoy foods or drinks that are swallowed. Hydration may be provided via the same routes and may also be given in some cases via a small needle into the subcutaneous tissues.
A process of progressive thickening and hardening of the walls of medium-size and large arteries as a result of fat deposits on their inner lining. The fat deposits are also sometimes referred to as atherosclerotic plaque.
A medical procedure in which a body is examined after death to determine the cause and manner of death and to evaluate any disease or injury that may be present. It is performed by a specialized doctor called a pathologist. There are lots of benefits to having an autopsy. For families, it can help assure them that their loved one received proper medical treatment, and it may uncover genetic or environmental causes of disease that could affect other family members. For the medical community, autopsies can confirm the correctness of the diagnosis and the appropriateness of the medical treatment. Autopsies are also used to educate doctors, nurses, residents, and students. For society as a whole, autopsies help assess new treatments, evaluate new diagnostic tests, investigate environmental and occupational diseases, and establish valid mortality statistics.
A common procedure in which a patient is given blood through an intravenous (IV) line inserted into a vein.
The soft blood-forming tissue that fills the cavities of bones and contains fat as well as immature and mature blood cells, including white blood cells, red blood cells, and platelets.
That part of the central nervous system that is located within the cranium (skull). The brain functions as the primary receiver, organizer, and distributor of information for the body. It has two (right and left) halves called hemispheres.
There are many causes of brain injuries, including trauma, stroke, lack of oxygen, chemical imbalances, metabolic disturbances, drug overdoses, and infections. Regardless of the cause, serious brain injuries usually lead to a coma. A good way to think of coma is an "eyes-closed unconsciousness." A person in a coma appears asleep, lacks purposeful body movement, cannot communicate, and has no awareness of self or surroundings.
Almost no one stays in a coma forever. Patients may deteriorate and become brain dead (See brain dead/brain death), or they may recover all the way back to normal. Other comatose patients may enter the vegetative state (See vegetative state), a minimally conscious state (See minimally conscious state), or a locked-in state (See locked-in state).
Doctors and nurses may be able to keep patients with serious brain injuries alive for prolonged periods of time without curing the patient. For example, although a young patient may have little chance of recovery from a vegetative, minimally conscious, or locked-in state, doctors and nurses may be able to keep the patient alive for decades. In contrast, when a person is declared brain dead, he or she is legally dead. There is currently no treatment to reverse brain death, and there is no United States federal or state law that prohibits the removal or withholding of treatments that support other organs in brain dead patients.
Brain-Dead / Brain Death
Brain death is defined as the permanent loss of function of all parts of the brain. The standard criteria were first published in the medical literature in 1968. When a patient is declared brain dead, the patient is legally dead. In brain death, the entire brain has died, both the upper parts of the brain (cerebrum) and the lower parts of the brain (brain stem). The cerebrum, or upper brain, is responsible for voluntary movement, thinking, hearing, seeing, feeling emotions, and more. It is responsible for what you are doing as you read this information. The brain stem, or lower brain, is responsible for the vegetative functions such as breathing or sleeping and waking up (sleep-wake cycles). If you use your upper brain and think about it for a moment, you will quickly realize you don't have to tell yourself to breath. Breathing is a basic vegetative function that happens automatically. Brain dead patients do not breathe automatically, and in most cases the most reliable test for confirming the diagnosis of brain death is the "apnea test," a test demonstrating that the brain no longer sends a message to the muscles to breath. Other tests sometimes used to confirm a diagnosis of brain death include brain wave tests (EEGs) and brain perfusion studies (cerebral blood flow scans).
Brain death is legally recognized in the United States and in most countries, but different legal jurisdictions may have different requirements for certifying the diagnosis. Once a patient has been declared brain dead in accordance with local law, the patient is legally dead. Unlike a comatose patient, a brain dead patient cannot recover. Brain dead patients do not suffer. Brain dead patients may become organ donors, and the organs taken from a single brain dead patient may save the life of multiple patients. Mechanical ventilators (called respirators in some countries), dialysis, heart assist devices, and drugs are no longer considered life support, as the patient is legally dead. These interventions in this setting, however, may support other organs of the body long enough for consideration for the patient to become an organ donor.
A machine that pushes air into the lungs through a tube placed in the trachea (breathing tube). Ventilators are used when you cannot breathe on your own or cannot breathe effectively enough to maintain other organ function or life. Ventilators are called respirators in some countries.
A tube inserted (through the nose or mouth) into the windpipe (trachea) to maintain an unobstructed passageway especially to deliver oxygen or anesthesia to the lungs.
Cancer is the uncontrolled growth of previously normal cells. Cancer is not one disease. There are, in fact, many different types of cancer, and you'll need to speak with your cancer specialist about your particular type. Some cancers are relatively easily cured; others are almost never cured. Cancer is common. Overall, about four out of 10 Americans will develop cancer in their lifetime, and two out of 10 will die from the disease. Cancer is serious, but cancer can be treated effectively for long periods of time, even when the disease is incurable. Every person should have an advance care plan but persons living with a serious illness like cancer should definitely have one. If you were to become so sick from cancer that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about cancer, visit www.cancer.org
Capacity or what is more properly called decision-making capacity is a clinical determination by a physician of the patient's ability to understand and deliberate about a medical problem and the risks, benefits, burdens, and reasonable treatment alternatives for the problem. The term is frequently used interchangeably with competency but is not the same. Competency is a legal determination made by a court of law.
An abrupt halt in the pumping action of the heart. When the heart stops pumping, blood flow and spontaneous breathing (respiration) also stop, resulting in cardiopulmonary arrest and a lack of oxygen delivery to vital organs. People lose consciousness immediately. Cardiac arrest is a medical emergency. Prior to the invention of cardiopulmonary resuscitation (CPR), a cardiac arrest meant irreversible death. CPR is sometimes able to restore heart function and thus bring the patient back to life. Unfortunately, sometimes even when heart function is restored, permanent damage to the brain, heart, liver, lung, and kidneys may still occur. Cardiac arrest is different from a heart attack (also called myocardial infarction, or MI). See heart attack.
Having to do with both the heart and lungs.
Cardiopulmonary Resuscitation / CPR
Cardiopulmonary resuscitation (CPR) is a medical intervention performed on a person whose heart has stopped beating (cardiac arrest) or whose breathing has stopped (respiratory arrest). CPR generally includes pressing on the chest over the breastbone (sternum) with enough force that bones often break, the placement of a tube in the windpipe (intubation) with artificial (mechanical) assisted breathing, powerful electrical shocks to the body, the placement of large needle IV lines into veins for the administration of drugs, and other more complicated procedures.
Family members, friends, or paid staff who provide care to a person who is ill.
Key arteries in your neck that provide the principal blood supply to your brain.
Centers for Medicare and Medicaid Services (CMS)
A United States federal agency within the U.S. Department of Health & Human Services that administers Medicare and works in partnership with state governments in administering Medicaid, the State Children's Health Insurance Program (SCHIP), and health insurance portability standards. It also oversees nursing home quality standards and administers HIPAA's simplification standards. For more information about the Centers for Medicare and Medicaid Services, visit www.cms.gov.
Chronic Degenerative Disease
Disease in which the body's tissues and organs progressively deteriorate over time. By definition, chronic degenerative diseases are treatable but incurable, and they eventually lead to death if vital organs are involved and organ transplantation does not occur.
Chronic Degenerative Neurologic Disorder
Diseases such as Alzheimer's disease, Parkinson's disease, Huntington's disease, and amyotrophic lateral sclerosis (ALS).
Chronic Liver Disease
The liver is responsible for removing toxins and waste products from the body and for making critical proteins for health and survival. There are many causes of chronic liver disease. The most severe forms of chronic liver disease will lead to death unless the patient receives a liver transplant. As the liver fails, toxins build up in the body that impair thinking and other important functions. Chronic liver disease is serious, but it can be treated effectively for long periods of time. Your doctors can help you live a lot longer than you otherwise would have, but they can't make you live forever with this condition. If you're living with chronic liver disease, you should think about your advance care plan. If you were to become so sick that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about chronic liver disease, visit www.chronicliverdisease.org.
A good way to think of coma is an "eyes-closed unconsciousness." A person in a coma appears asleep, lacks purposeful body movement, cannot communicate, and has no awareness of self or surroundings.
Almost no one stays in a coma forever. Patients may deteriorate and become brain dead (See brain dead/brain death), or they may recover all the way back to normal. Other comatose patients may enter the vegetative state (See vegetative state), a minimally conscious state (See minimally conscious state), or a locked-in state (See locked-in state).
Congestive Heart Failure
Congestive heart failure is a condition where the heart is weakened and is unable to effectively pump blood around the body. Fluid tends to back up in the lungs, causing congestion. One to two million Americans suffer with congestive heart failure, and the 15-year death rate can exceed 50 percent. Congestive heart failure is serious, but it can be treated effectively for long periods of time. Your doctors can help you live a lot longer than you otherwise would have, but they can't make you live forever. If you're living with congestive heart failure, you should think about your advance care plan. If you were to become so sick that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about congestive heart failure, visit www.heart.org (click on "Conditions," then "Heart Failure").
To make a medical treatment or procedure inappropriate because of a particular medical condition or circumstance. See indication for treatment.
The clear front window of the eye that transmits and focuses light into the eye. Corneas may be donated after death to help restore sight to a blind person still living.
Coronary Artery Disease
Often called cardiovascular disease, coronary artery disease is a type of vascular disease involving the blood vessels in the heart. According to the American Heart Association, one out of every three deaths in the United States is due to coronary artery disease. Coronary artery disease is serious, but it can be treated effectively for long periods of time. Your doctors can help you live a lot longer than you otherwise would have, but they can't make you live forever. If you're living with coronary artery disease, you should think about your advance care plan. If you were to become so sick that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about coronary artery disease, visit www.heart.org.
The specialized care of patients whose conditions are life-threatening and who require comprehensive care and constant monitoring in an intensive care unit.
Cerebrovascular accident. See stroke.
Capacity, or what is more properly called decision-making capacity, is a clinical determination by a physician of the patient's ability to understand and think about a medical problem and the risks, benefits, burdens, and reasonable treatment alternatives for the problem. The term is frequently used interchangeably with competency but is not the same. Competency is a legal determination made by a court of law.
Dementia is a disorder of the brain that typically presents with short-term memory loss but over time progresses to loss of all brain function. At first patients may merely appear absent-minded or forgetful. But when true dementia is present, the disease becomes obvious over time. Most dementia is incurable, and the end stage of the disease is characterized by a mute, bed-bound, incontinent, infant-like state of existence. Alzheimer's disease is the most common type of dementia, and the terms are sometimes used interchangeably. Average survival time for people diagnosed with dementia is typically five to 10 years. Dementia is more common with advanced age, meaning the longer modern medicine can keep us alive, the more likely it becomes that we will experience dementia. At age 85, approximately one out of three people may have dementia. Dementia is serious, but it can be treated, and such treatment may delay admission to a nursing home. Dementia treatment does not necessarily prolong life. If you're living with dementia, you should think about your advance care plan. All dementia patients lose the ability to make decisions. If you were to become so sick that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about dementia, visit www.alz.org (click on "Alzheimer's Disease," then on "Related Dementias").
Diabetes with End Organ Damage
Diabetes is a disorder of sugar metabolism. It is quite common, and people may live with diabetes for years. Over time diabetes increases the risk of other serious health problems, including heart attacks, strokes, kidney failure, blindness, and amputation of the extremities. Diabetes with end organ damage is serious, but it can be treated effectively for long periods of time. Your doctors can help you live a lot longer than you otherwise would have, but they can't make you live forever. If you're living with diabetes with end organ damage, you should think about your advance care plan. If you were to become so sick that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about diabetes with end organ damage, visit www.diabetes.org (click on "Living with Diabetes," then select "Complications").
The process of cleansing the blood of toxins and removing excess fluid from the body when the kidneys are no longer able to do so. There are two types of dialysis - hemodialysis and peritoneal dialysis. Hemodialysis consists of removing the blood from the body, passing it through a filter that removes the toxins and unwanted fluid, and then returning the blood to the body. In peritoneal dialysis, special fluids are sent into the abdominal cavity though a surgically implanted plastic tube. When the fluids are drained out of the abdominal cavity, toxins and excess fluids are removed at the same time.
Directive to Physicians
One type of advance medical directive in which you document your goals, preferences and priorities for medical treatment should you suffer a medical emergency or illness and become unable to make and communicate medical treatment decisions, or if a court should determine you to be incompetent. It may also be called a directive to physicians and family, living will, healthcare declaration, or medical directive. Directives to physicians usually have strict legalistic signature and witness or notary requirements.
DNR Order / DNAR Order
See Do-Not-Resuscitate Order / Do-Not-Attempt Resuscitation Order.
Do-Not-Resuscitate Order / Do-Not-Attempt-Resuscitation Order
When attempting cardiopulmonary resuscitation (CPR) is known to be ineffective, to do more harm than good, or the patient simply does not wish to undergo such a burdensome procedure even if offered, physicians will normally write an order instructing medical treatment providers not to attempt CPR in the event of cardiac arrest or respiratory arrest. This does not mean that other treatments won't be provided. Some hospitals modify DNAR orders either with the words "Continue Other Treatment" (indicating plans to maintain other treatments) or with the words "Allow Natural Death" (indicating that other treatments may be withheld if a patient deteriorates in the setting of a DNAR order). If a valid DNR or DNAR order is available, CPR will usually not be given under these circumstances. Although the DNR/DNAR order is often written at the request of a person or family, it must be signed by a physician to be valid. The advance care plan includes an expression of the patient's preferences on CPR that is similar to the instructions included in DNR/DNAR orders; however, the advance care plan is not intended to replace a physician order (See Physician Order for Life-Sustaining Treatment (POLST), Medical Order for Life-Sustaining Treatment (MOLST), or Medical Order for Scope of Treatment (MOST).
Electrocardiogram (EKG or ECG)
A graphic tracing used in the diagnosis of heart disease showing the electrical activity of the heart.
A graphic tracing showing the electrical activity in the brain; it is used in the diagnosis of serious brain injuries.
Emergency Medical Services (EMS)
A group of governmental emergency care responders, usually persons outside of healthcare facilities; EMS personnel generally include paramedics, first responders, and other ambulance crew.
The last phase in the course of a progressive disease, as in end-stage liver disease, end-stage lung disease, end-stage renal disease, and end-stage cancer. Some doctors and researchers use the term "end stage" to mean the same thing as "terminal." The only "stage" past "end stage" is usually death or a reprieve from it by a cure. In the case of end stage organ failures, this means a transplant.
The tube that connects the mouth and throat to the stomach.
A commonly used but inaccurate term for a tube that is placed directly into the stomach for administration of nutrients, fluids, and medications. A better term might be Nutritional Support Tube (NST). There are three basic types: Naso-gastric tube running from the nose into the stomach; Percutaneous endoscopic gastrostomy (PEG) tube surgically inserted directly through the skin into the stomach; and J-tube surgically inserted directly through the skin into the jejunal part of the small intestine. Many specialists reject the name "feeding tube," pointing out that the nutritional formula placed down the tube typically comes from the pharmacy, not the kitchen, and is not tasted, chewed, swallowed, or otherwise enjoyed by the patient the way true food is.
The branch of medicine concerned with the diagnosis, treatment, and prevention of disease in older people and the problems specific to aging.
Gastrostomy Tube (gastric tube)
A healthcare advocate is the person chosen by a patient to make healthcare decisions in the event that the patient cannot make decisions for him/herself. It is sometimes called a healthcare proxy, substitute decision-maker or healthcare agent, depending on the state. States have different requirements for appointing a healthcare advocate. In this tool the term is used generally, but it is not intended to encompass a legal power of attorney or other similar representative. If you have questions talk to an attorney or your legal advisor.
The muscle that pumps blood around the body. It is positioned in the chest behind the sternum (breastbone); in front of the trachea, esophagus, and aorta; and above the diaphragm muscle that separates the chest and abdominal cavities. The right side of the heart receives blood low in oxygen via the superior and inferior vena cava and pumps that blood into the lungs. In the lungs the blood releases carbon dioxide and takes on new oxygen. The now oxygenated blood then flows to the left side of the heart and is pumped out through the aorta to rest of the body.
A block in the blood flow to a portion of the heart, depriving that part of the heart muscle of oxygen. A heart attack, or myocardial infarction (MI), is not the same as cardiac arrest. Sudden cardiac arrest occurs when the heart's electrical system malfunctions. See cardiac arrest.
Heart Machines / Devices
Various machines and devices are used to assist the heart when it is too weak to maintain life. A heart pump, or ventricular assist device, can be surgically implanted inside the body to help pump blood to the rest of your body. An implantable cardiac defibrillator is a device that is surgically implanted within the body to recognize and correct certain abnormal heart rhythms by delivering a potent electrical shock to the heart. Finally, a cardiac pacemaker is a battery-driven device that is put within the body to regulate or reproduce the rhythm of the heart.
Considered to be the model for quality, compassionate care for people at the end of life when all attempts at cure or remission have been stopped. Hospice and palliative care are related, but not the same. Both involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the person's needs and wishes. Hospice focuses on caring for the patient, as opposed to curing the disease or illness. Palliative care patients may continue to receive attempts at cure or remission, whereas hospice patients in most cases do not. Although hospice patients do not normally receive treatments intended to prolong life, in multiple end stage diseases in which attempts at cure have been stopped, hospice patients may live longer than non-hospice patients. How could this be? Many experts believe it is because aggressive treatments late in life do more harm than good. Forgoing those treatments in favor of hospice not only improves symptom control, it may prolong life! Hospice provides additional support to the person's loved ones, as well. Hospice care can be provided at home, in a hospice or another freestanding facility, or within a hospital. For more information on hospice care, visit www.nhpco.org.
Blood vessels in the pelvic region. Iliac arteries carry oxygen-containing blood from the aorta into the legs. Iliac veins carry oxygen-depleted blood back to the inferior vena cava and into the heart to be pumped into the lungs.
Implantable cardiac defibrillator
An implantable cardiac defibrillator is a device that is surgically implanted within the body to recognize and correct certain abnormal heart rhythms by delivering a potent electrical shock to the heart.
Implantable cardiac pacemaker
A cardiac pacemaker is a battery-driven device that is put within the body to regulate or reproduce the rhythm of the heart.
Often used interchangeably with decision-making incapacity. Strictly speaking, incompetency is a legal determination made in a court of law indicating the patient lacks the ability to make informed medical decisions. The legal determination of incompetency is made based upon the clinical determination by a physician (often but not always a psychiatrist) that the patient is unable to understand and think about treatment for a medical problem, including the risks, benefits, burdens, and reasonable treatment alternatives for the problem.
Indication for Treatment
In medicine, treatments may be either medically appropriate (based upon sound science and/or clinical experience) and therefore medically indicated, or they may be inappropriate and not medically indicated. If a treatment is disproportionately harmful and/or not supported by medical science, it is contraindicated. The same treatment may be indicated in one setting and contraindicated in another. For example, in the setting of end stage renal disease for a patient living in the community, dialysis is indicated for treatment. However in advanced illness associated with low blood pressure and kidney failure near the end of life, dialysis is contraindicated because the procedure cannot be effectively performed and/or may hasten the patient's death.
See critical care.
Intensive Care Unit (ICU)
A hospital unit staffed and equipped to care for critically ill patients, characterized by continuous nursing and supervision, and by use of sophisticated monitoring and resuscitative equipment.
Endotracheal intubation is the insertion of a tube through the mouth or nose into the trachea (windpipe) to create and maintain an open airway to assist breathing.
A condition, injury, or illness that cannot be reversed or cured, although treatment may control the symptoms and slow the progression of the disease. With or without treatment many of these conditions can become terminal, or fatal, over time. Many serious illnesses, such as neurodegenerative disorders like Parkinson's disease, are considered irreversible when diagnosed, although the patient often can live for an extended period with proper treatment.
IV / Intravenous Infusion
Delivery of certain kinds of medications, fluids, blood, other blood products, or nutritional support directly into a patient's vein through an intravenous (IV) tube.
Various drugs that are given to the patient by means of an intravenous infusion.
See intravenous infusion.
Kidney failure is the loss of kidney function. The kidneys remove toxins from the body and keep fluids and electrolytes (sodium, chloride, potassium) in balance. There are many causes of kidney failure. About one in 10 adults in the United States have some evidence of chronic kidney disease, and nearly 400,000 Americans receive dialysis (a treatment to replace the function of the kidney). As a general rule, dialysis can only be effectively maintained on patients who are able to walk into and walk back out of the dialysis clinic. The average length of survival for patients with kidney failure in the United States is about 3.8 years from initiation of dialysis - some people live much longer on dialysis, and some much shorter. The only cure for kidney failure is a kidney transplant. End-stage kidney disease patients clearly have shorter life spans, and they often have other problems that lead to the loss of the ability to make decisions for themselves. Kidney failure is serious, but it can be treated effectively for long periods of time. Your doctors can help you live a lot longer than you otherwise would have, but they can't make you live forever. If you're living with kidney failure, you should think about your advance care plan. If you were to become so sick that you couldn't make and communicate your medical care decisions, or if a court determined that you were incompetent, what would be your medical treatment preferences, and who would make medical treatment decisions for you? For more information about kidney failure, visit www.kidneyfund.org (Click on "Kidney Failure").
A pair of organs located in the right and left side of the abdomen that clear medications and the waste products of normal body metabolism (toxins) from the blood and maintain chemical and water balance in the body by making and excreting urine.
A person charged (usually by court appointment) with the power and duty of taking care of and managing your property and rights if you are considered incapable of administering your own affairs.
Life Support Treatment
See life-sustaining treatment. This term should not be confused with "organ support treatment" in the setting of brain death.
Life-sustaining treatment replaces or supports your bodily functions when they are failing. When someone has a chance of improving, life support is used for a short time until the body can function normally again. For some people, the body never recovers the ability to function without life support or life-sustaining treatment.
An organ in the upper abdomen that makes key proteins for the body, aids in digestion, and removes waste products from the blood.
A type of advance medical directive in which a person documents his or her wishes about medical treatment should he or she suffer a medical emergency and be unable to make and communicate medical treatment decisions, or should he or she be determined by a court to be incompetent. It may also be called a directive to physicians and family, healthcare declaration, or medical directive. Remember, a living will only takes effect when the patient is determined by a physician to be terminally or irreversibly ill (as a result of injury or disease, and as defined in law) (See terminally ill) and the patient lacks decision-making capacity. As long as a terminally or irreversibly ill patient is able to make decisions and communicate with his or her physician, the living will is not active. The advance care plan includes the expression of medical treatment preferences usually included in living wills.
Locked-in patients are as conscious as any normal person but can move only their eyes. Such patients may clearly suffer physically, emotionally, and spiritually but can only communicate that by blinking or other eye movements in response to questions about suffering.
A pair of spongy, saclike respiratory organs located within the chest that remove carbon dioxide from, and bring oxygen to, the blood.
Small rounded or bean-shaped masses of lymphatic tissue surrounded by a capsule of connective tissue that help the body fight infection and disease.
There's not just one definition for "meaningful recovery." Ideas vary from person to person and can be as different as people are. Two people may have the same injury or illness and have completely different ideas about what a "meaningful recovery" would mean to them - they might only agree that they'd want to be able to recover and live out the rest of their lives, however long that might be. MyDirectives® feels strongly that you should think carefully about what the term means to you. Don't forget that what it means to you today might change as you get older and/or your health status changes. That's why we encourage you to speak with your healthcare advocate and to come back to MyDirectives and update your thoughts and your treatment choices whenever necessary. To help you get started thinking about your personal definition of a meaningful recovery, ask yourself some questions. Would it mean still being able to do everything that you were able to do before the injury or illness? Would you be satisfied with only being able to do half of those things for the rest of your life? Think about specific abilities and faculties: being able to see, to recognize family and friends, move your arms and legs, eat and drink without help, use the bathroom on your own. Are there some abilities and faculties without which you'd never feel you'd achieved a "meaningful recovery"? Your answer doesn't have to be the same for every situation.
A method used to mechanically support or replace the function of the lungs. Mechanical ventilation may be non-invasive or invasive. In non-invasive mechanical ventilation, a mask is very tightly strapped over the mouth and nose through which oxygen is then forced into the lungs. Invasive mechanical ventilation involves attaching the breathing machine (ventilator or respirator) to a tube inserted in the nose or mouth and down into the windpipe (trachea), and forces air into the lungs. Non-invasive mechanical ventilation is generally either a short-term or intermittent sort of breathing support. Invasive or endotracheal ventilation is a longer-term type of support, and if it goes on too long, it may require a surgical procedure known as a tracheotomy in which a hole is surgically created through the neck and into the trachea. It is important to recognize that mechanical ventilation can be very uncomfortable to conscious patients, so they are often sedated when it is in use.
Public assistance programs provided and administered by individual states in the United States designed to assist U.S. citizens, regardless of age, whose income and resources are insufficient to pay for healthcare. The United States federal government provides matching funds to the state Medicaid programs.
Medical Power of Attorney
A form of advance medical directive that allows a person to appoint someone else to make decisions about the person's medical treatment if he or she is unable to make and communicate medical treatment decisions, or if he or she is determined by a court to be incompetent. This type of advance medical directive may also be called a healthcare proxy, durable power of attorney for healthcare, or appointment of a healthcare advocate. The person appointed may be called a healthcare advocate, surrogate, attorney-in-fact, or proxy. The advance care plan includes the designation of a primary healthcare advocate and up to two alternates.
The United States federal government's health insurance program for people 65 years of age or older, certain younger people with specific disabilities, and people with end-stage renal disease (ESRD), which means permanent kidney failure requiring dialysis or a transplant to maintain a chance at life.
Minimally Conscious State
A patient who is in a minimally conscious state may appear vegetative on initial evaluation, but a closer examination and more sophisticated testing may reveal sporadic minimal levels of consciousness. Patients in a minimally conscious state may have some limited awareness of themselves and their environment. Unfortunately, such patients may have enough consciousness to suffer, but they are unable to communicate that suffering to others.
A death resulting from natural causes, including when a person's heart stops beating as the result of an illness or an injury. When medical care providers use the term "allow natural death," they usually mean that at the moment of death, doctors will allow the patient to die peacefully, without the trauma of attempting cardiopulmonary resuscitation (CPR).
An approach to treating serious illness focused on the patient's physical, emotional, social, and spiritual needs. The goal is to achieve the best quality of life possible for the patient by relieving not only physical pain and symptoms like nausea or shortness of breath associated with advance illness, but also emotional, social, and spiritual pain. Palliative care may be provided by many types of physicians who treat serious illness, but as primary disease advances or symptom burdens increase, it is often advisable to have a specialist in palliative care involved in the patient's treatment and care. Palliative care may be provided in association with attempts at curative treatment, and in at least some serious illnesses, patients who receive palliative care live longer than those who do not receive it. Palliative care may also at some point replace attempts at cure or remission of illness, and such care is often referred to as "comfort care only." Hospice is the final stage of palliative care. For more information about hospice and palliative care, visit www.aahpm.org.
Patient Self-Determination Act (PSDA)
A United States federal law that affirms the rights of adults to make medical treatment decisions, including the right to refuse treatment. The Patient Self-Determination Act (PSDA) requires hospitals, nursing homes, and other medical care providers to provide information about advance medical directives to adult patients upon their admission to the facility, including information about a patient's right to prepare advance medical directives.
Persistent Vegetative State
As defined by the American Academy of Neurology, "a form of eyes-open permanent unconsciousness in which the patient has periods of wakefulness and physiologic sleep/wake cycles but at no time is aware of himself or his environment." Persistent vegetative state is usually defined as a vegetative state lasting for longer than one month following an anoxic brain injury and three months following a traumatic brain injury.
Physician Order for Life-Sustaining Treatment (POLST), Medical Order for Life-Sustaining Treatment (MOLST), or Medical Orders for Scope of Treatment (MOST)
POLST, MOLST, MOST, and other similar documents, are special physician order forms indicating life-sustaining treatment preferences for seriously ill patients. The goals of POLST/MOLST/MOST forms are to turn medical treatment wishes of an individual into actionable medical orders, as well as provide for portability from one medical treatment setting to another. They usually have three or four sections in which a person can choose his or her desired level of medical intervention, ranging from "comfort care only," to limited or intermediate treatment, or to aggressive or "full" treatment. POLST/MOLST/MOST forms complement advance medical directives and are not intended to replace them. Advance medical directives are necessary to appoint health care agents and provide instructions for future life-sustaining treatments, so they are recommended for all adults, regardless of their health status. A POLST/MOLST/MOST form should accompany an advance medical directive when appropriate based on the patient's health status.
A semi-hardened accumulation of substances from fluids that bathe an area. Examples include cholesterol plaque. Cholesterol is a key component in plaques on the inner walls of blood vessels and can lead to blood clot formation, heart attacks, and stroke.
An infection in the lungs. The infection may be bacterial, viral, fungal, or parasitic. Symptoms may include fever, chills, cough with sputum production, chest pain, and shortness of breath.
Power of Attorney
A legal document allowing another person to act in a legal matter on your behalf regarding various legal transactions. See medical power of attorney.
Primary Care Physician
The medical doctor a person visits for physical exams and minor illnesses.
A person appointed to make decisions for you, as in a durable power of attorney for healthcare; also called a surrogate or agent.
Pertaining to or within the purview of psychiatry, which is the medical specialty concerned with the prevention, diagnosis, and treatment of mental illness.
Treatment of chronic, severe, and intractable (unruly) psychiatric disorders by surgical removal or interruption of certain areas or pathways in the brain, especially in the prefrontal lobes. The most common example is a lobotomy.
PVS can refer to either a persistent vegetative state or a permanent vegetative state. A persistent vegetative state is a vegetative state that lasts for more than a month. A permanent vegetative state is a vegetative state that lasts for months, years, or even decades. See brain injury.
The cessation of breathing; an event in which a person stops breathing. If breathing is not restored, a person's heart eventually will stop beating, resulting in cardiac arrest and death.
Derived from the Latin resuscitare, to reawaken, this term means to restore to life.
ResuscitationThe procedure of restoring to life, as in cardiopulmonary resuscitation (CPR).
This medical condition was originally thought of as old age, physical decline associated with old age, or mental decline associated with old age. Some physicians use the word senility to mean dementia associated with advanced age.
The part of the digestive tract that extends from the stomach to the large intestine, or colon. The small intestine is the part of the intestine involved in the absorption of nutrients.
Specific Period of Time
You can't really define "acceptable quality of life" without also talking about how long you would be willing to accept that quality of life. Two people who experience the same injury or illness might have completely different ideas about how long they'd be willing and able to live with the decreased quality of life resulting from that injury or illness. While one person may be able to "accept" the thought of living in a persistent vegetative state requiring artificial nutrition and hydration for many years due to a religious belief or a hope that some new cure will eventually be found, another person may only be able to accept the thought of living in this condition for a limited period of time. One person can live with painful follow-up medical treatment for years, while another person may only be willing to accept receiving the painful treatment for a known period of time just so that they can share in some special event (for example living long enough to celebrate a wedding or a graduation). Some people want medical treatment to continue to "give them a chance to heal," even if they're in a coma, but they want that treatment stopped after a certain period of time if there hasn't been any improvement.
How long would you be willing to live with a lower quality of life? You can always come back and update your advance care plan with your new thoughts, at any time. It's especially important to do so as you get older and your health status changes. What you think you could cope with today might be very different from what you decide to cope with when actually faced with a medical crisis.
In regard to cancer, the extent of a cancer, especially whether the disease has spread from the original site to other parts of the body. Usually numbers I to IV, with IV having more progression.
The process of categorizing the extent of a malignant disease in order to plan treatment.
A tube that is placed directly into the stomach for long-term administration of nutritional supplements, fluids, and medications. The correct term is gastrostomy tube (G tube), or percutaneous endoscopic gastrostomy (PEG) tube. Although sometimes referred to as a "feeding tube," the nutritional support placed through such tubes has none of the pleasurable attributes of real food and is not tasted or otherwise enjoyed by the patient, even when it clearly sustains the patient's life.
The sudden death of some brain cells due to a lack of oxygen when the blood flow to the brain is impaired by blockage or rupture of an artery to the brain. Also called a cerebrovascular accident, or CVA.
Surrogate Decision-Making Laws
Surrogate decision-making laws are "default" laws that allow an individual or a group of individuals, usually the patient's family, to make decisions about the patient's medical treatment if the patient has lost his or her decision-making capacity and did not prepare an advance medical directive. A majority of states in the United States have passed statutes that permit surrogate decision-making for people without advance medical directives.
A set of signs and symptoms that tend to occur together.
Terminal Illness / Terminal Condition
In many countries, a condition or illness is considered terminal when death is imminent. In most states of the United States, a terminal condition is an incurable condition caused by injury, disease, or illness that according to reasonable medical judgment will produce death in a short time, even with available life-sustaining treatment. There is no precise, universally accepted definition of "a short time" in the United States, but in general it is considered to be less than one year in some states, and less than six months in others. The United States federal Medicare hospice care benefit is based upon life expectancy of six months or less.
A tube-like portion of the breathing, or respiratory, tract that connects the voice box, or larynx, with the bronchial parts of the lungs.
U.S. Department of Health and Human Services (HHS)
The United States federal government's principal agency for protecting the health of all Americans and providing essential human services. For more information about the Department of Health and Human Services, visit www.hhs.gov.
A vegetative state is usually described as an "eyes-open unconsciousness." The patient has sleep-wake cycles and, when awake, his or her eyes will be open, but as with comatose patients, a person in a true vegetative state has no awareness of self or surroundings, no communication, and no sustained, purposeful or voluntary movement. Current neuroscience suggests that true vegetative patients do not suffer. However, at least some patients who appear vegetative on bedside exam may have some degree of consciousness detectable on more sophisticated testing. These patients can be considered minimally conscious.
A blood vessel that carries blood low in oxygen content from the body back to the heart.
Ventilator / Respirator
A machine that pushes air into the lungs through a tube placed in the trachea (breathing tube). Ventilators are used when you cannot breathe on your own or cannot breathe effectively enough to provide adequate oxygen to the cells of your body or rid your body of carbon dioxide. Ventilators are called respirators in some countries.
Withholding or Withdrawing Treatment
Foregoing life-sustaining measures or discontinuing them after they have been used for a certain period of time.