Glossary of Terms

Advance Care Planning  
Advance care planning refers to the process of discussing and planning for the end of life.  Advance care planning results in the development of written documents and medical orders.  Individuals engaged in advance care planning rely upon health professionals and, ideally, family members to prepare a plan and outline flexible decision making that may result in other individuals acting on the person’s behalf if and when it is necessary.

Advance Directive
This is a general term describing two kinds of legal documents [See Living Will and Durable Powers of Attorney]. Such documents allow a person to give instructions about future medical care in case they are unable to participate in medical decisions due to serious illness or incapacity. Each state has its own regulations concerning the use of advance directives.

Assisted Death
This is also known as “physician-assisted suicide”, “physician-assisted dying” or “aid in dying” and is legal the US states of Oregon, Washington, California and Colorado (as of 12-16). It permits mentally competent, terminally-ill adult patients to request a prescription for life-ending medication from their physician. The Oregon and Washington laws mandate that the medication must be self-administered.

Autonomy
This is the exercise of self determination and choice among alternatives, based on the individual’s values and beliefs.

Coma
The National Institute of Neurological Disorders and Stroke defines coma as “a profound or deep state of unconsciousness. An individual in a state of coma is alive but unable to move or respond to his or her environment.” Comas can result from chronic illness or severe injury/trauma.

Comfort Care
This medical specialty, also referred to as palliative care, is often associated with hospice; however, it can also be used independently and alongside curative treatments. Palliative care is available in every state, appropriate for anyone at any stage of life suffering with a debilitating illness–terminal or not–and focuses on pain management and providing comfort.

Continuum of Care
This relates to a course of therapy during which a patient’s needs for comfort care and symptom relief is managed comprehensively and seamlessly. Hospice provides a continuum of care to terminally-ill patients, and aid-in-dying is assumed as the option of last resort at the end of that continuum.

Direct Care Worker
Home health and home care aides, personal care workers and nursing assistants who provide care to individuals in their own home, in assisted living facility and other residential care settings.

DNR/DNI
DNR/DNI stands for Do Not Resuscitate/Do Not Intubate and is a specific physician order. Do Not Resuscitate means that in the event of cardiac arrest, no CPR or electric shock will be performed to re-start the heart. Do Not Intubate means that no breathing tube will be placed in the throat in the event of breathing difficulty or respiratory arrest. Each of these orders may be given separately and are generally prominently noted in the patient’s medical chart. The patient can change a DNR and DNI order at any time, and experts urge that such orders are reviewed regularly. In a DNR/DNI situation, a patient is provided comfort care. Without such an order, emergency medical technicians are legally required to perform CPR.

Double Effect
This is the doctrine established by St. Thomas Aquinas in the 13th century in which an action that has two effects—one that is intended and positive and one that is foreseen but negative—is ethically acceptable if the actor intends only the positive effect. The doctrine is often used to describe the impact of administering high doses of morphine or terminal sedation—treatments intended to relieve suffering but that often hasten death. Since the intention is comfort care, this is not considered euthanasia and is legal and generally practiced throughout the United States and around the world—generally in private and without publicity.

Durable Power of Attorney
This is a document appointing a surrogate to make medical decisions in the event that an individual becomes unable to make those decisions on their own. It is also sometimes referred to as a “health care proxy.”

Euthanasia
This is translated literally as “good death” and refers to the act of painlessly but deliberately causing the death of another who is suffering from an incurable, painful disease or condition. It is commonly thought of as lethal injection and it is sometimes referred to as “mercy killing.” All forms of euthanasia are illegal in the United States.

  • Active Euthanasia: This is generally understood as the deliberate action of a medial professional or layperson to hasten a patient’s death.
  • Passive Euthanasia: This is generally understood as a patient’s death due to actions not taken by a medical professional or layperson—actions that would normally keep the patient alive.
  • Voluntary Euthanasia: This occurs at the request of the person who dies.
  • Non-Voluntary Euthanasia: This refers to when a patient is unconscious or otherwise mentally unable to make a meaningful choice between living and dying, and a legal surrogate makes the decision on the patient’s behalf.

Futile Measures
This generally refers to the medical care of patients in which the care will have little or no effect on the patient’s outcome or prognosis.

Guardian Ad Litem
A Latin term for a court-appointed representative who makes decisions in a legal proceeding on behalf of a minor or an incompetent or otherwise impaired person.

Hospice
Hospice is an organization or institution that provides comfort (a.k.a. palliative) care for dying individuals when medical treatment is no longer expected to cure the disease or prolong life. Medicare provides coverage for hospice care, as does some other health insurance providers to support comfort care at a hospice facility or home for patients with a prognosis or life expectancy of six months or less.

Intent
This is a concept used to draw a moral distinction between aid-in-dying and other acts/omissions that cause death—such as terminal sedation and withdrawing life-sustaining therapy. “Intent” assumes the ability to draw a clear distinction between knowledge of a certain outcome and an intention to produce that outcome.

Life-Sustaining Treatment
This is any treatment, the discontinuation of which would result in death. Such treatments include technological interventions like dialysis and ventilators. They also include such simpler treatments as feeding tubes and antibiotics.

Living Will
A “living will” is a type of advance directive containing instructions about future medical treatment in the event the individual is unable to communicate specific wishes due to illness or injury. Each state has its own regulations concerning the use of living wills.

Minimally Conscious
This state was described in the February 12, 2002 edition of Neurology as qualitatively distinct from coma and vegetative states. For example, patients who are “minimally conscious” are impaired but have some capabilities, such as the ability to reach for and grasp objects, track moving objects, locate sounds, and process and respond to words. Patients may inconsistently verbalize or gesture to communicate, and patients may regain full consciousness. However, minimal consciousness may also be permanent.

Palliative Care
This medical specialty is often associated with hospice; however, it can also be used independently and alongside curative treatments. Palliative care is available in every state, appropriate for anyone at any stage of life suffering with a debilitating illness–terminal or not–and focuses on pain management and providing comfort. [See also comfort care]

Patient-Centered Care
Health care that establishes a partnership among practitioners, patients, and their families and/or friends in order to protect patient choice in decisions affecting their treatment and ensuring they have the information necessary to participate in their own care.

Patient Self-Determination Act of 1991
This federal law requires health care facilities that receive Medicare and Medicaid funds to inform patients of their right to execute advance directives regarding end-of-life care.

Persistent Vegetative State
Some comatose patients lapse into a persistent vegetative state. According to the National Institute of Neurological Disorders and Stroke, patients in such a state “have lost their thinking abilities and awareness of their surroundings, but retain non-cognitive function and normal sleep patterns. Even though those in a persistent vegetative state lose their higher brain functions, other key functions such as breathing and circulation remain relatively intact. Spontaneous movements may occur, and the eyes may open in response to external stimuli. They may even occasionally grimace, cry or laugh. Although individuals in a persistent vegetative state may appear somewhat normal, they do not speak and they are unable to respond to commands.”

Physician-Assisted Death/Physician-Assisted Suicide
These terms are synonyms for assisted death.

POLST 
Physician Orders for Life-Sustaining treatment.  A health professional prepares for a seriously ill individual who is proactively involved in planning their care going forward.  The POLST covers an array of topics that may emerge as the individual reaches the end of their life.

Refusal of Medication/Treatment and Nutrition/Hydration
Terminally-ill patients who feel they are near the end of life may legally and consciously refuse medication, life-sustaining treatments, nutrition and/or hydration. Published studies indicate that “within the context of adequate palliative care, the refusal of food and fluids does not contribute to suffering among the terminally ill”, and might actually contribute to a comfortable passage from life. At least for some persons, starvation does correlate with reported euphoria

Studied Neutrality
This refers to various medical organizations’ recognition of and respect for the diversity of members’ personal and religious views and choices — as well as those of their patients — in order to encourage open discussion about all end-of-life options.

Suicide
Suicide is generally defined as the act of taking one’s own life voluntarily and intentionally — generally as the result of an individual’s self-destructive impulse and mental illness and often independent of a terminal illness. Because a terminally-ill adult patient who is deemed mentally competent chooses to hasten his or her death through a physician’s assistance, “physician-assisted dying” is more accurate than “physician-assisted suicide.”

Surrogate Decision Making
This is a procedure that allows a loved one to make medical-care decisions in accordance with a patient’s known wishes. If the patient’s wishes are not known, the decisions are generally said to be made in the patient’s “best interests.”

Terminal Sedation
Generally practiced during the final days or hours of a dying patient’s life, this coma-like state is medically induced through medication when symptoms such as pain, nausea, breathlessness or delirium cannot be controlled while the patient is conscious. Patients generally die after the sedation’s secondary effects of dehydration or other intervening complications.

Withholding/Withdrawing Treatment
This refers to omitting or ending such life sustaining treatments as ventilators, feeding tubes, kidney dialysis or medication that would otherwise prolong the patient’s life. This legal act may be upon the patient’s request, as the result of an advance directive or based upon the medical determination of futility.

 

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