Death with Dignity: A Glossary of Terms for Discussion

Discussion about death with dignity and assisted dying is often made difficult because of confusion surrounding various terms. “Mercy killing,” “euthanasia,” and “suicide” are examples of inappropriate terms for describing death with dignity. This page aims to help clarify several terms and increase your understanding of the death with dignity movement and end-of-life care.

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 dying” or “aid in dying” and is legal in all states with existing death with dignity laws. It permits mentally competent, adult patients with terminal illness to request a prescription for life-ending medications from their physician. The patient must self-administer and ingest the medication without assistance.

Autonomy

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

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 patients with terminal illness, and aid-in-dying is assumed as the option of last resort at the end of that continuum.

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.

DNR or DNI

DNR/DNI stands for Do Not Resuscitate/Do Not Intubate and is a specific physician order. A DNR means that in the event of cardiac arrest, no CPR or electric shock will be performed to restart the heart. A DNI 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 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 medical 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.
Involuntary euthanasia: This occurs when a patient’s death is hastened without the patient’s consent. While generally viewed as murder, there are some instances in which the death may be viewed as a “mercy killing.”

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 individuals who are dying when medical treatment is no longer expected to cure the disease or prolong life. Hospice sometimes also applies to an insurance benefit that pays the costs of comfort care, usually at 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 simpler treatments, such 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 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.”

Refusal of Medication/Treatment And Nutrition And/Or Hydration

Patients with terminal illness who feel they are near the end of life may legally and consciously refuse medication, life-sustaining treatments, nutrition, and/or hydration.

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. Because an adult patient with terminal illness who is deemed mentally competent chooses to hasten their 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 (or Palliative) 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 from the sedation’s secondary effects of dehydration or other intervening complications.

Withholding/Withdrawing Treatment

This refers to omitting or ending life-sustaining treatments, including 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.