Glossary of Terms for Advance Care Planning

Perhaps you are thinking about situations where you may not be able to make decisions about your own healthcare. This might be because you have a chronic illness that may take away your mental or physical capabilities, or you may be about to go to surgery, whether major or minor, and want a backup plan if something happens to you.

You may just be thinking about your future and trying to protect your own health or your family if there are big decisions that need to be made without your input. You may have heard of an advance directive, or living will, and want to put one in place but are confused about some of the terms you have read about it. Here is a glossary of common terms related to advance care planning that may help you understand this concept better.

Advance care planning glossary

Advance directive
This is a legal document that usually consists of 2 parts: your living will and medical power of attorney. This gives your medical team and family members directions for your care and designates a person to carry those directions out. Every state has different rules about advance directives, so be sure to look up the specific instructions for your state.

Coma
This is a state of being alive but not being conscious. People in comas cannot move or respond to the people around them. This can be the result of illness or injuries and trauma.

Cardiopulmonary resuscitation (CPR)
CPR is a series of procedures that are used to restart the heart after it stops beating. This can include pushing on the chest, using electric shock, and/or using medicine to restart the heart and breathing.

DNR/DNI
Do not resuscitate (DNR) and do not intubate (DNI) are orders that a person can request to state that if their heart should stop beating or they should not be able to breathe on their own:

• CPR will not be given to restart the heart (DNR)
• A tube will not be placed to help the patient breathe until they can breathe on their own (DNI)

These orders are placed in a person's chart and have to be followed by their medical team. DNR/DNIs can be requested separately or together and can be changed at any time. These orders MUST be signed by a physician to be valid, and there need to be separate orders for hospitals and home.

Hospice
This is care that is given at the end stages of a person’s life. Hospice care is meant to comfort and not to treat or cure, and it is usually reserved for the last few months of a person's care. Hospice care can be given in a person’s own home or at a hospital, nursing home, or specialized hospice facility. Hospice care may be covered by the person’s medical insurance.

Living will
This is the written portion of an advance directive that states your wishes about your medical care if you are unable to communicate or at the end of life. Again, every state has different rules about living wills, so be sure to look up information specific to your state. Living wills may need to be witnessed and notarized, so think about preparing one sooner than later.

Medical power of attorney
This is the person you trust to make healthcare decisions for you if you are not able to make your own. This is an important part of your advance directive. Your medical power of attorney may also be referred to as your healthcare proxy, durable power of attorney, or healthcare agent.

Palliative care
This is care that is about improving quality of life, providing comfort, and dealing with pain management. While palliative care is an important part of hospice, it can be given at any point in time during a chronic or terminal illness. Palliative care can be given along with curative treatment in both inpatient and outpatient settings.

Percutaneous endoscopic gastrostomy (PEG)
This is a tube that is surgically inserted into the stomach to give food and liquid when a person cannot eat or drink on their own.

Ventilator
This refers to a machine that is used to help a person breathe when they are unable to do so on their own. It works by pushing air into a person’s lungs through a tube that has been inserted into the person’s airway.

Withdrawing/withholding treatment
This is the process of stopping a treatment that may have been used for an extended period of time but is no longer improving a person’s quality of life or may be causing more harm than good. This treatment may be keeping a person alive, so it may need to be written into an advance directive or may need a physician to state that this treatment is no longer helping the person.

Your experience with advanced planning

Have you or your loved one with cystic fibrosis done advance care planning? Do you have experience with hospice or palliative care? You are certainly not alone. Please feel free to share your experience with us in the comments below.