GENERAL | March 26, 2019

Advance Care Planning Guide Part 1: Glossary of Terms

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Advance Care Planning (ACP) 101 begins right here with a list of commonly associated advance care planning terms. Stay tuned for Part 2, which will provide a comprehensive list of resources for advance care planning. 

Advance Care Planning

An ongoing communication process that involves clarifying and documenting an individual’s wishes, values, preferences and goals regarding future medical care in the event he or she loses the capacity to make health care decisions. 

Discover five ways to jump-start advance care planning in your organization. 

Advance Directive

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A legal document in which a person spells out decisions about future medical care in the event he or she is unable to make these decisions due to incapacity or serious illness. The two main elements of an advance directive are a living will and durable power of attorney for health care. Advance directives are regulated differently in every state.

Comfort Measures / Comfort Care

Medical care that is provided with the primary goal of making a person feel comfortable at the end of life by relieving pain and other symptoms. Care is not focused on curing or prolonging life.  

Do-Not-Intubate Order (DNI)

An order written by a physician to declare a person’s wish to reject a breathing tube at the end of life

Do-Not-Resuscitate (DNR) Order (In Hospital and Out of Hospital)

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A document that indicates a person does not want cardiopulmonary resuscitation (CPR) or other life-support measures to restore breathing and the normal rhythm of the heartwhen in a hospital or nursing facility. 

A non-hospital DNR order alerts emergency medical personnel of a person’s wishes to not restore heartbeat or breathing outside of the hospital. A DNR order must be signed by a physician to be valid and may be called Do Not Attempt Resuscitation (DNAR) or Allow Natural Death (AND) order in some health care settings. 

Durable Power of Attorney for Health Care

Legal document through which a person appoints a health care proxy to make medical decisions if he or she is unable to do so, either temporarily or permanently.  A health care proxy is also known as a representative, health care agent, surrogate, or attorney-in-fact. Most powers of attorney go into effect when a physician determines a person is not able to make his or her own decisions. 

The health care proxy cannot continue to make the decisions if the person regains the ability to make decisions. Many states have specific requirements regarding decisions about life-sustaining medical treatments. 

Serious Illness or End-of-life Planning

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An umbrella term that encompasses types of future planning, such as advance care planning, as well as legal, financial, funeral, and legacy planning. 

End Stage

Describes the advanced state, or last phase, of a progressive disease that is now considered terminal due to irreversible damage to vital tissues or organs. 

Health Care Proxy

Someone appointed to make health care decisions on behalf of a patient, who no longer has the capacity to make decisions for him- or herself. Also called a representative, health care agent or surrogate.

Health Literacy

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Refers to how well a person can access the basic health information and services they need and how well they understand them. It also refers to the individual’s ability to use that information to make appropriate health decisions. Learn strategies for improving health literacy

Hospice Care

Compassionate comfort care that includes palliative care for terminally ill patients facing a prognosis of six months or less to live, assuming the disease runs its normal course. 

Informed Consent

The process by which a patient learns about and understands the purpose, benefits and potential risks of a medical or surgical procedure and agrees to receive the treatment. For informed consent to be valid, the patient or responsible party must sign a statement confirming understanding of the risks and benefits of the procedure. 

Life-Sustaining Treatments

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Also called life-support treatments, these are medical procedures that replace or support essential bodily functions to keep a person alive. Example of life-sustaining treatments include cardiopulmonary resuscitation (CPR), mechanical ventilation, artificial nutrition, hydration and dialysis. 

Living Will

A written, legal document that specifies what medical treatments a person desires should he or she be at the end of life and unable to communicate. A living will may also be called a directive to physicians, health care declaration or medical directive. 

Living will laws vary by state. For example, in most states, before a living will can guide medical decision making, two physicians must certify a person is unable to make decisions and is in a medical condition specified in the state’s living will law.   

Palliative Care

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Comprehensive care provided to patients with life-limiting illness. Also known as comfort care, supportive care and symptom management, its goal is to improve the quality of life by focusing on providing relief from symptoms, pain, physical stress and mental stress at any stage of the illness. Patients can receive palliative care in the hospital, an outpatient clinic, a long-term care facility or at home.

Patient Decision Aids

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Interventions or tools that facilitate shared decision making. They are designed to help people become involved in medical decision making by providing information about available treatments and the potential benefits and risks. Patient decision aids can help overcome common barriers to shared decision making.  

Patient decision aids, which can be in the form of print, audiovisual or computer-based, and can help clarify personal values and overcome issues with low health literacy. They are designed to complement, rather than replace, counseling from a health care provider. 

Patient Self-Determination Act

A federal law passed in 1990 that requires all hospitals, long-term care facilities and home health agencies that receive Medicare and Medicaid reimbursement to recognize the living will and durable power of attorney for health care. These organizations must ask every person upon admission whether they have an advance directive and provide information about a patient’s rights under their state’s law.

Physician Orders for Life Sustaining Treatment (POLST)

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A document that serves as a doctor-ordered instruction on what treatments to provide in the event of a medical emergency. A POLST is intended for people who have been diagnosed with a serious illness and is valid whether the person is at home, in a nursing home, a long-term care facility or in a hospital. 

While the POLST form varies by state, it generally allows a doctor to include details about what treatments to avoid, under what conditions certain treatments can be used, how long treatments may be used and when treatments should be withdrawn. The POLST form also indicates what advance directives have been created and who is appointed as the health care proxy. 

Shared Decision Making

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A process that involves a health care provider and patient sharing information and working together to determine a care or treatment plan that is best for the patient by taking into consideration risks and benefits, patient values, preferences and medical best practices. 

Shared decision making can lead to safer carefor patients facing serious illness. Find out four best practices for effective shared decision making here.

Surrogate Decision Maker(s)

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An individual or group of individuals, usually family members, chosen by a physician to make decisions about medical treatments for a patient who has lost decision-making capacity and does not have an advance directive. Most states have statutes that allow surrogate decision making for individuals without advance directives. 

ACP Decisions creates evidence-based video decision aids that empower patients and health care providers to engage in shared decision making.  Our advance care planning videos are patient-centered and designed to help patients optimally navigate their healthcare.  Learn more about us!  

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