Definitions of the Terms used in Dr. Kathleen Benton’s article: How an Advance Directive is a Gift of Knowing: Mary’s Story
A living will/advance directive- for this article the terms are interchangeable. In Georgia, the legal replacement for the living will and durable power of attorney for health care is called the Georgia Advance Directive for Health Care.
An advance directive is a document (or sometimes a couple of documents) where you give guidance about your end-of-life wishes specifically in two areas:
- You can state your medical treatment preferences in the event you cannot speak for yourself.
- You can name someone to make those health care decisions for you if that time ever comes. This person is referred to in the State of Georgia as a health care agent. Below are some other titles used to describe this person.
Health care agent- The person you name as the decision-maker for medical decisions- but ONLY if you’re unable to make them yourself. The state of Georgia’s term for this person is the health care agent. This person may also be referred to as
- health care advocate
- health care surrogate
- healthcare decision-maker
- patient advocate
Medical Ethicist-is a healthcare professional who specializes in helping patients, families, and medical teams solve medical ethics dilemmas.
A general power of attorney is a legal document addresses matters outside health care, such as financial arrangements. It is not the same thing as the Georgia Advance Directive for Health Care.
Intubation-when a tube is placed in my nose or mouth and connected to a machine to breathe for you.
DNR order- This is the Do Not Resuscitate (DNR) form. It’s sometimes called the Allow Natural Death (AND) order. This is a doctor’s medical order that says if your heart stops beating and you stop breathing, you do not want anyone to try and bring you back with CPR or with a breathing machine. Usually, it’s for someone nearing the end of their life. In the state of Georgia, these forms are known as the POLST form and are printed on bright pink paper.
POLST form- the Physician Orders for Life-Sustaining Treatment form is not needed by everyone; only patients with serious illnesses or frailty. For these vulnerable patients, their current health status indicates the need for standing medical orders for emergent or future medical care. The form should be printed on bright pink paper for easy recognition. Paramedics are trained to see if this form is on the refrigerator when they are called into a home.
For most people, an advance directive is an appropriate document, not the POLST form.
Serious/Life-limiting/Chronic/Progressive illness- illnesses such as Chronic Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD), HIV, cancer, kidney disease, dementia, or others.
MedicineNet describes a chronic disease as,
one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.
Palliative care/ progressive care/progressive illness management
Palliative care is a medical specialty that helps people with a variety of serious illnesses find a better quality of life. It is not the same as hospice care and can be provided at any stage of chronic or serious illness progression. This type of holistic care is provided by an interdisciplinary team of doctors, nurses, chaplains, social workers, and other specialists such as massage and music therapists. Palliative care also does not take the place of your primary care physician but instead works alongside your provider.
Not every person with an illness has trouble managing symptoms and for those patients, they might not have an urgent need to be under the care of a palliative care provider. However, every person with a progressive illness should have an initial consultation with a palliative care provider.
Palliative Care providers
Are professionals that focus not just on relieving pain and symptoms. They also can help you with important decision-making and establishing goals of care. A palliative care professional works with you, your loved ones, and your physician to create a plan of care that offers relief from physical, emotional, and spiritual pain, symptoms, and stress. They explain your choices and ensure your needs and wishes are honored.
Medical Physician gatekeeper-this medical provider is the lead person overseeing all of your medical care. Sometimes it will be the Hospitalist during a hospital stay. If you have established a relationship with a Palliative care doctor before a hospitalization, this provider becomes become your gatekeeper.
Hospitalists-a dedicated in-patient physician who works exclusively in a hospital. They are the doctors who oversee your care during your stay in the hospital, and they usually rotate patients every ten days.
COPD-Chronic Obstructive Pulmonary Disease (a lung disease)
Elephant man disease- also known as Proteus syndrome-is characterized by tumors arising from the abnormal growth of nerves. It can devastate connective tissues and bones, be disfiguring, and affect every organ in the body.