Advance Care Planning Word List

By learning more about common end-of-life terms and treatments, you can develop an Advance Care Plan that truly reflects your wishes. You may also want to include some of these terms in your Advance Care Plan:

Advance Care Plan

A verbal or written summary of wishes or instructions about the kind of health care and treatment you want or do not want in the event that you cannot speak for yourself. An Advance Care Plan can be written down or simply told to someone who will likely be asked to speak on your behalf (for example a Proxy or Substitute Decision-Maker). It can guide your Proxy and Substitute Decision-Maker if that person is asked by a health practitioner to make treatment decisions on your behalf.

Advance Care Planning (ACP)

A process of reflection and communication, a time to reflect on your values and wishes, and to let others know your future health care and treatment preferences in the event that a health practitioner determines you are not capable to either make and/or communicate your own health care choices. Advance care planning means having discussions with family and friends, especially your Proxy (if you have named one in a legally binding Health Care Directive), or with family and friends who may be called upon to be your Substitute Decision-Maker (the person who will speak for you) if a Proxy has not been named in a Health Care Directive. It may also include preparing a written Advance Care Plan, creating a Health Care Directive, and may even involve talking with health care providers and financial and legal professionals.

Allow Natural Death

Refers to a decision not to have any treatment or procedure that will delay the moment of death. It applies only when death is about to happen from natural causes and means that one wants this process not to be obstructed with medical procedures. However, you would continue to receive any treatments to keep comfortable. The continuation of nutrition and hydration (food or drink) in the vast majority of cases is not part of comfort measures. 

Blood Transfusion/Transfusion of Blood Products

The transfer of blood and blood components from one person (the donor) into the bloodstream of another person (the recipient) through an intravenous line (a needle in your vein). Blood transfusion may be done as a lifesaving measure to replace blood cells or blood products lost through bleeding or due to depression of the bone marrow.

Capable (Capacity)

The ability for a person to understand the information that is relevant to the making of a personal decision, and the ability to appreciate the reasonably foreseeable consequences of the decision.

Cardiopulmonary Resuscitation (CPR)

Refers to medical procedures used to restart your heart and breathing when the heart and/or lungs stop working unexpectedly. CPR can range from mouth-to-mouth breathing and pumping of the chest to electric shocks that restart the heart and machines that breathe for the individual. CPR can be useful in some situations, but not in all situations.

Comfort Measures or Comfort Care

Treatment to keep you comfortable (for example, medication for managing symptoms including pain, psychological support, physical care or oxygen for shortness of breath) but not to keep you artificially alive or cure any illness. The continuation of nutrition and hydration (food and drink) in the vast majority of cases is not part of comfort measures.

Dementia

A term used to describe the symptoms of many illnesses that cause a loss of memory, judgment, ability to think clearly, recognize people and communicate, as well as changes in behaviour and mood. These symptoms may be temporary and related to another condition, or they may gradually get worse over time. Symptoms can range from mild to severe. The most common form of dementia is Alzheimer’s disease.

Dialysis

A medical procedure that cleans your blood of toxins by machine (hemodialysis) or by fluid passed through the abdomen (peritoneal dialysis) when your kidneys can no longer do so.

End-of-Life-Care

Refers to health care provided at the end of a person’s life. This type of care focuses on you living the way you choose during your last days or weeks and providing comfort measures until the time of death. Care provided during this time may be called supportive care, palliative care or symptom management. End-of-life care addresses physical, psychological, and spiritual concerns and focuses on comfort, respect for decisions, and support for the family. Palliative care is not restricted to care during those last weeks of life, in fact, can start years before your death in conjunction with other curative or life prolonging measures. Palliative care early in the course of a disease is associated with an increase in quality of life.

Feeding Tube

A surgical intervention to feed someone who can no longer swallow food. A person who cannot eat or drink needs a feeding tube to get nourishment. The tube is inserted into the stomach either through the nose or a small hole cut into the abdomen.

Health Care Provider

A professional licensed, certified or registered in PEI to provide health care. For example: a physician, nurse practitioner, registered nurse, social worker, or dietitian.

Goals of Care (GOC)

A communication and decision-making process that occurs between a clinician (physician or nurse), a patient and/or a Proxy/Substitute Decision-Maker to establish a plan of care (and obtain informed consent for that plan) that communicates general care instructions, specific clinically indicated health interventions, transfer decisions, and locations of care for patient. Documentation of these GOC discussions must be present across time and place in the health care system and shall be documented on the GOC form by the most responsible health practitioner (in PEI this is a physician, nurse practitioner or registered nurse).

Health Care Directive (HCD)

A legally binding document (made in accordance with the Consent to Treatment and Health Care Directives Act) in which you explain, in writing, your wishes for health care and treatment in the event a health practitioner has determined you are not capable to either make and/or communicate your own health care choices. In your directive, you can appoint another person(s), called a Proxy(ies), to make health care decisions for you when you are not capable to either make and/or communicate them yourself. Everyone is presumed to be capable of making a Health Care Directive, although a Proxy(ies) must be at least 16 years of age to accept a Proxy appointment.

Informed Consent

Refers to the permission patients give to health care providers that allow medical investigations and/or treatments. Health care providers are required to offer you, and you are entitled to receive, explanations of the investigations/treatments and their risks, benefits and side effects; alternatives to these options; and what would likely happen if you refuse the options. Health care providers must also answer questions you have about the treatments before you give verbal consent or sign a consent form.

Intravenous (IV)

A medical term that means giving you fluids or medications through a vein in your hand or other part of your body using a syringe or intravenous catheter (tube) and bag.

Intubation

Intubation is when a tube is inserted down your airway (throat) so that you can breathe. If you are unable to breathe on your own, intubation may result in the use of a ventilator or breathing machine (this means the breathing tube will be attached to a breathing machine that will breathe for you). Some people may want to be resuscitated, but may not want to be intubated. A definition of “cardiopulmonary resuscitated” is included above.

Life Support and Life-Prolonging Medical Interventions

A medical term meaning health care treatments like tube feedings, ventilators (breathing machines), kidney dialysis, some medications, and cardiopulmonary resuscitation.  They are considered medically appropriate care when the goal of care is to continue or prolong life. All of these use artificial means to restore and/or continue life. Without them, you would die.

Life-Limiting Illness

Refers to an incurable medical condition caused by injury or disease.

Medical Interventions

Refers to medications, treatments and procedures used to treat a person’s medical condition and symptoms.

Organ/Tissue Donation

A medical term that refers to allowing organs (lungs/heart/kidney) and/or tissues to be donated in certain circumstances, either during your life or upon your death, under the Human Tissue Donation Act. A person can register their wishes about donating their organs and/or tissue or state their wishes in a Health Care Directive.

Palliative Care

Palliative Care is the way we care for people who have a life-limiting illness. Palliative care can be provided anywhere, at any stage of any illness along with care and treatment aimed at curing or prolonging life. It focuses on maintaining a good quality of life. It incorporates a holistic approach, which means considering social, spiritual, relational needs along with physical treatments. Palliative care always involves the best possible pain control and control of other symptoms such as shortness of breath, nausea, anxiety or depression. Palliative care involves medicines, treatments, physical care, psychological/social services and spiritual support, both for you and for those who are helping to care for you. Early palliative care interventions are associated with better quality of life and decreased stress for both patients and caregivers.

Permanent Coma

A state of unconsciousness where there is no reasonable expectation of regaining consciousness. You would need to be in bed and receive nourishment through a feeding tube. You would need 24-hour care.

Power of Attorney

A legal instrument that allows you to appoint someone to make financial and legal decisions on your behalf should a health care practitioner determine that you are not capable of making decisions on your own behalf. In PEI, a Power of Attorney has authority in relation to finances only and has no decision-making authority over health care or treatment related decisions. The only way to appoint someone to make health care or treatment related decision on your behalf in PEI is by a Health Care Directive.

Proxy

Proxy is a legal term taken from the Consent to Treatment and Health Care Directives Act (PEI). It means the person or person(s) appointed by the maker of a Health Care Directive to make decisions on his or her behalf and may include alternate(s) in the event that the person or persons appointed is unable to act. The role of the Proxy is fully defined in the Act. In essence, it is someone who is appointed to make decisions on your behalf in the event you are unable and to consider your expressed wishes and best interests when making care and treatment decisions. It is a good idea to appoint a second Proxy who would act if your first Proxy predeceases you or is unable to act. When the decision of a Proxy is required and the directive does not give specific instructions, the Proxy shall make a decision based on your best interests. If you name more than one Proxy, you can indicate how you wish them to act: successively (second Proxy decides if the first Proxy is not available) or jointly (make decisions together). If how you wish them to act is not indicated, Proxies shall act successively.

You can also appoint an alternate proxy in the event none of your Proxy(ies) are available (for example if your Proxy is away on travel).

To be valid, a Health Care Directive must be written, dated, and signed by you.  Any Proxy you name must also sign the section on the form where they agree to be your Proxy.  If your named Proxy/Proxies have not signed the form, their appointment is not valid.  A Proxy must also be capable and at least 16 years of age to accept this appointment.

If you cannot sign the directive yourself, someone else can sign the directive for you at your direction.  If someone else is signing for you, you will also need a witness.  In either case, whether you are able to sign or someone must sign on your behalf, the witness cannot be your Proxy or your Proxy’s spouse.  You, your signer, and the witness must all be present when your directive is signed.

Spouse

Spouse in PEI, spouses are defined as two people who are legally married or two people who have lived together in conjugal (sexual) relationship for at least 3 years or are the natural or adoptive parents of a child or children.

Substitute Decision-Maker (SDM)

A Substitute Decision-Maker (SDM) is someone who makes health care and treatment decisions on your behalf when you are not able to do so yourself. It may be someone you formally appoint to make health care decisions for you (known as a Proxy) or may be someone else who is chosen based on the hierarchy set out in the Content to Treatment and Health Care Directives Act (PEI). 

If you have formally appointed a Proxy, that is the person who will be your substitute decision maker for health care decisions.

If you have not formally appointed a Proxy, if your Proxy is unable or unwilling to act, or if the appointment was not done properly, then the Consent to Treatment and Health Care Directives Act (PEI) provides a list identifying individuals who are authorized to act as a Substitute Decision-Maker on your behalf, and in what priority.

A Substitute Decision-Maker must be at least 16 years old and be capable of making health care decisions themselves. In addition (except for a Proxy), a Substitute Decision-Maker must have knowledge of your circumstances and have been in recent contact with you at the time they are being asked to make the health care decision for you.

Symptoms

Symptoms are signs that you are unwell - for example, pain, vomiting, loss of appetite, or high fever, shortness of breath, confusion, weakness.

Terminal Illness

An incurable medical condition caused by injury or disease. These are conditions that, even with life support, would end in death within weeks or months. If life support is used, the dying process takes longer.

Ventilator

A machine that helps people breathe when they cannot breathe on their own. A special machine is attached to a tube that is placed down the windpipe.