Clinical Ethics Terms and Concepts
Actively dying: The hours or days preceding imminent death during which time the patient’s physiologic functions wane (Hui D, Nooruddin Z, Didwaniya N, Dev R, De La Cruz M, Kim SH, Kwon JH, Hutchins R, Liem C, Bruera E. Concepts and definitions for "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care": a systematic review. J Pain Symptom Manage. 2014 Jan;47(1):77-89.)
Advance Care Planning: The discussion, preparation, and determination of one’s future clinical decisions about medical care when decisional capacity and the ability to communicate one’s clinical wishes are lost, temporarily or permanently.
Advance Directives: Written or verbal instructions for medical care that become effective when the patient loses decisional capacity. Common types of advance directives include, but are not limited to:
- Health Care Proxy: A document appointing an agent or surrogate to make medical decisions on behalf of an individual who has lost decisional capacity.
- Living Will: A document that tells doctors how the patient wants to be treated for specified conditions, if decisional capacity is lost.
- Durable Power of Attorney for Health Care: similar to a health care proxy, a document appointing an agent or surrogate to make medical decisions on behalf of an individual who has lost decisional capacity.
- Organ and Tissue Donation: A document or component of a license stating one’s preferences for organ and tissue donation after death.
Advance directives may be verbal or written. The names, forms, and legal requirements for advance directives vary by state. Some advance directives may include features of more than one type of document, e.g., combining the appointment of an agent with directions for future care. For a comprehensive list of state-specific documents and terminology, visit caringinfo.org.
Agent: An individual legally authorized to make medical decisions on behalf of an individual who lacks decisional capacity. Often used interchangeably with “surrogate.”
Artificial Nutrition and Hydration (ANH): A medical legal term, used in clinical ethics, which refers to the provision of nourishment and/or fluid by enteral feeding tube and/or intravenous or subcutaneous catheter, usually when adequate oral intake is no longer possible.
Autonomy: Self-determination; the right of individuals to make decisions regarding their own body and health care.
Beneficence: The responsibility of clinicians to provide beneficial care.
Best Interest: The clinical outcome that would most likely promote the patient’s well-being in the absence of knowledge of the patient’s preferences and values (see the AMA Code of Medical Ethics).
Care Ethics or Ethics of Care: An approach to ethics that implies there is moral significance to relationships, responsibilities, and dependencies in human life, seeking to contextualize and promote the well-being of caregivers and care-receivers in social relations.
Casuistry: A method of justifying action in a particular ethics case by comparing its key features to those of a paradigm case.
Comfort Feedings Only: Hand-feeding a patient for the patient’s satisfaction, rather than for nutritional purposes, when a patient is no longer able to self-feed and clinical goals no longer include prolongation of life.
Comfort Care: Prioritizing care aimed at reducing pain and suffering rather than a cure.
Communitarian Ethics: A philosophical approach that emphasizes the importance of community and shared values in shaping morality.
Conservator: A surrogate decision-maker appointed by the court for a patient lacking decisional capacity for clinical and/or financial matters. In some states, it may be referred to as “guardian.” Definition and related laws differ by state.
Decision-Making Capacity or Decisional Capacity: The ability to understand and appreciate the nature and consequences of proposed health care, including the benefits and risks of and alternatives to proposed health care, and to communicate an informed decision.
Default Surrogate Statutes: State-specific laws that provide patients with a healthcare decision-maker when no healthcare agent or guardian has been appointed. Default surrogate statutes.
Deontology: An ethical theory that determines right from wrong based on duties and rules, rather than the consequences of actions; often associated with Immanuel Kant.
Dignity of Risk: The principle that individuals have the right to make their own choices and take reasonable risks in life, even if those choices could lead to negative outcomes. Related to autonomy.
Durable Power of Attorney for Health Care: See under Advanced Directives.
Euthanasia: The direct administration of a lethal agent by another person to a patient for the express purpose of relieving the patient’s suffering.
False Beliefs in Health Care: Information is widely available on the internet, but more information does not equal more knowledge. A benefit is that patients and clinicians can easily find high-quality information, but a risk is that easily accessible misinformation can harm patients and their relationship with clinicians. False Beliefs in Health Care | Journal of Ethics | American Medical Association.
Guardian: A surrogate decision-maker appointed by court for a patient lacking decisional capacity for clinical and/or financial matters. In some states, may be referred to as “conservator.”
Health Care Proxy: See Advanced Directives.
Hospice Care: Comprehensive palliative care for persons with terminal disease, usually with a prognosis of 6 months or less, if the disease runs its usual course.
(Note: In the US, Hospice is a specific Medicare benefit for beneficiaries with a terminal disease, certified by clinicians, to result in a prognosis of 6 months or less, if the disease runs its normal course.)
Informed Consent: A process by which a patient or surrogate is given sufficient information about a clinical procedure, including its nature, potential risks, benefits and alternatives, so that they can make a voluntary and knowledgeable decision to accept or refuse it.
Justice: The responsibility of clinicians to treat patients fairly and equitably
Life-Sustaining Treatment: Any treatment that serves to prolong life without reversing the underlying medical condition. (AMA Code of Medical Ethics).
Living Will: See Advanced Directives.
Medical Aid in Dying (MAID): A practice in which a terminally ill, mentally competent adult self-administers a lethal dose of medication, legally prescribed for that purpose. (See: https://paltmed.org/policies/position-statement-medical-aid-dying.)
Medical Futility: Clinical interventions that cannot or, probabilistically, are highly unlikely to achieve a physiologic goal.
MOLST—Medical Orders for Life-Sustaining Treatment: See POLST below, but note that these forms are not only completed by physicians, and each state varies in terms of who can complete these forms.
Non-Beneficial Treatment: This is closely tied to inappropriate treatment at the end of life. Understanding the interplay between how and why these situations arise in acute care settings, according to the various stakeholders, is pivotal to informing decision-making and best practice at end of life.
Non-maleficence: The responsibility of clinicians to avoid harm, i.e., “to do no harm” as mentioned in the Hippocratic oath.
Narrative ethics: An approach to ethics that emphasizes the role of stories and context over universal principles, emphasizing what matters most to the patient.
Palliative Care: Specialized health care for people with serious illness, whether terminal or not, that focuses on providing relief from pain, stress, and other symptoms.
Person-Centered Care: Integrated health care services delivered in a setting and manner that is responsive to individuals and their goals, values, and preferences, in a system that supports good provider–patient communication and empowers individuals receiving care and providers to make effective care plans together. Person-Centered Care | CMS.
POLST—Physician Orders for Life-Sustaining Treatment: Portable medical orders, authorized by the patient, communicating to all health care providers what treatments may or may not be administered during a future medical emergency when decisional capacity is absent.
Note: POLST may have different names and content, depending on the state. For more information, see: https://polst.org/.
Physician-Assisted Suicide: Facilitation of a patient’s death by a physician, who is aware of the patient’s intent, by providing the necessary means and/or information to enable the patient to perform the life-ending act. Sometimes used interchangeably with Medical Aid in Dying.
Serious illness: A health condition that carries a high risk of mortality and negatively impacts a person’s activities of daily living and/or strains their caregivers.
Shared Decision-Making: A form of informed consent, in which an engaged patient expresses a clinical choice, based on an informed discussion with the clinician that provides information about the nature of the intervention, benefits, potential risks, and possible alternatives.
Stopping Eating and Drinking by Advanced Directive (SED by AD): An instruction by the patient, indicating that food and fluid should no longer be offered when certain clinical criteria are met, usually in advanced dementia (see: AMDA Updated Statement on Stopping Eating and Drinking by Advance Directives (SED by AD) - Journal of the American Medical Directors Association (jamda.com).)
Supportive Care: Comprehensive interventions intended to alleviate physical, psychological, social or spiritual distress accompanying illness, regardless of prognosis
Surrogate: An individual legally authorized to make medical decisions on behalf of an individual who lacks decisional capacity. Often used interchangeably with “agent.”
Utilitarianism: A consequentialist theory that judges an action’s morality based on its outcome, aiming to maximize benefit and minimize risk for the greatest number of people.
Virtue Ethics: An approach to ethics that emphasizes character and virtue in morals, rather than duty.
Voluntarily Stopping Eating and Drinking (VSED): an informed decision to abstain from taking food or fluids with the understanding that this will hasten death, usually in advanced illness.