Ethel L. Mitty, EdD, RN, Linda Farber Post, JD, MA, BSN
Evidence-Based Content - Updated August 2012
The information in this "Want to know more" section is organized according to the following major components of the NURSING PROCESS:
To ensure nurses in acute care:
A. Understand the supporting bioethical and legal principles of informed consent.
B. Are able to differentiate between competence and capacity.
C. Understand the issues and processing of assessing decisional capacity.
D. Can describe the nurse’s role and responsibility as an advocate for the patient’s voice in health care decision making.
A. Capable persons (i.e., those with decisional capacity) have a well-established right, grounded in law and Western bioethics, to determine what is done to their bodies.
B. In any health care setting, the exercise of autonomy (self-determination) is seen in the process of informed consent to and refusal of treatment and/or care planning.
C. Determination of decision-making capacity is a compelling clinical issue because treatment and diagnostic interventions have the potential for significant benefit, burden, and/or risk.
D. Honoring the decisions of a capable patient demonstrates respect for the person; honoring the decisions of a patient without capacity is an act of abandonment.
1. Core ethical principles that are the foundation of clinician obligation are:
a. Respect for autonomy, beneficence, nonmaleficence, and distributive justice.
b. Clinically, legally, and ethically valid decisions by or for patients requires a careful balancing of information, principles, rights, and responsibilities in light of medical realities, cultural factors, and, increasingly, concerns about resource allocation.
c. Even capable patients, including those who are older adults, easily confused, or from cultures that do not consider autonomy a central value, as well as patients with diminished or fluctuating capacity, may not be capable of or comfortable with exercising purely autonomous decision making.
d. Care professionals have an obligation to be alert to questionable or fluctuating capacity both in patients who refuse and those who consent to recommended treatment. Capable individuals may choose to make their own care decisions or they may voluntarily delegate decision-making authority to trusted others. Delegation of decisional authority must be explicitly confirmed, not inferred.
e. The context of decision making can include cultural imperatives and taboos, perceptions of pain, suffering and quality of life and death, education and socioeconomic status, language barriers, and advance health care planning.
1. Consent: the informed-consent process requires evidence of decisional capacity, disclosure of sufficient information, understanding of the information provided, voluntariness in choosing among the options, and, on those bases, consent to or refusal of the intervention.
2. Competence: a legal presumption that an adult has the mental ability to negotiate various legal tasks (e.g., entering into a contract, making a will).
3. Incompetence: a judicial determination that a person lacks the ability to negotiate legal tasks and should be prevented from doing so.
4. Decisional capacity: a clinical determination that an individual has the ability to understand and to make and take responsibility for the consequences of health decisions. Because capacity is not global but decision-specific, patients may have the ability to make some decisions but not others. Capacity may fluctuate according to factors, including clinical condition, time of day, medications, and psychological and comfort status.
C. Essential Elements
1. Decisional capacity reflects the ability to understand the facts, appreciate the implications, and assume responsibility for the consequences of a decision.
2. The elements of decisional capacity: the ability to understand and process information; weigh the relative benefits, burdens, and risks of each option; apply personal values to the analysis; arrive at a consistent decision; and communicate the decision.
3. Standards of decision making:
a. Prior explicit articulation: decision based on the previous expression of a capable person's wishes through oral or written comments or instructions.
b. Substituted judgment: decision by others based on the formerly capable person's wishes that are known or can be inferred from prior behaviors or decisions.
c. Best-interest standard: decision based on what others judge to be in the best interest of an individual who never had or made known health care wishes and whose preferences cannot be inferred.
A. There is no "gold standard" instrument to assess capacity.
B. Assessment should occur over a period of time, at different times of day, and with attention to the patient's comfort level.
C. The Mini-Mental State Examination (MMSE) or Mini-Cog Test is not a test of capacity. Tests of executive function might better approximate the reasoning and recall needed to understand the implications of a decision.
D. Clinicians agree that the ability to understand the consequences of a decision is an important indicator of decisional capacity.
E. Safe and appropriate decision-making is retained in early-stage dementia (Ref 1) and by adults with mild to moderate mental retardation. (Ref 2)
A. Communicate with patient and family or other/surrogate decision makers to enhance their understanding of treatment options.
B. Be sensitive to racial, ethnic, religious, and cultural mores and traditions regarding end-of-life care planning, disclosure of information, and care decisions.
C. Be aware of conflict resolution support and systems available in the care-providing organization.
D. Observe, document, and report the patient’s ability to:
1. articulate his or her needs and preferences
2. follow directions
3. make simple choices and decisions (e.g., "Do you prefer the TV on or off?" "Do you prefer orange juice or water?")
4. communicate consistent care wishes
E. Observe period(s) of confusion and lucidity; document the specific time(s) when the patient seems more or less "clear." Observation and documentation of the patient's mental state should occur during the day, evening, and at night.
F. Assess understanding relative to the particular decision at issue. The following probes and statements are useful in assessing the degree to which the patient has the skills necessary to make a health care decision:
• "Tell me in your own words what the physician explained to you."
• "Tell me which parts, if any, were confusing."
• "What do you feel you have to gain by agreeing to (the proposed intervention)?"
• "Tell me what you feel you have to lose by agreeing to (the proposed intervention)?"
• "Tell me what you feel you have to gain/lose by refusing (the proposed intervention)?"
• "Tell me why this decision is important (difficult, frightening, etc.) to you."
G. Select (or construct) appropriate decision aids.
H. Help the patient express what he or she understands about the clinical situation, the goals of care, the expectation of the outcomes of the diagnostic or treatment interventions.
I. Help the patient identify who should participate in diagnostic and treatment discussions and decisions.
A. The number of referrals to the ethics committee or ethics consultant in situations of decision-making conflict between any of the involved parties.
B. The use of interpreters in communication of, or decision-making about, diagnostic and/or treatment interventions.
C. Plan of Care: instructions regarding frequency of observation to ascertain the patient’s lucid periods, if any.
1. Is the process of the capacity assessment described?
2. Is the assessment specific to the decision at issue?
3. Is the informed consent and refusal interaction described?
4. Are the specifics of the patient’s degree or spheres of orientation described?
5. Is the patient's language used to describe the diagnostic or treatment intervention under consideration recorded? Is the patient’s demeanor during this discussion recorded? 6. Are the patient’s questions and the clinician(s) answers recorded? 7. Are appropriate mental-status descriptors used consistently?
From Evidence-Based Geriatric Nursing Protocols for Best Practice, 4th Edition. © Springer Publishing Company, LLC.
1. Kim, S. Y., & Karlawish, J. H. (2002). Current state of research on decision-making competence of cognitively impaired elderly persons. American Journal of Geriatric Psychiatry, 11(2), 257–258. Evidence Level V.
2. Cea, C. D., & Fisher, C. B. (2003). Health care decision making by adults with mental retardation. Mental Retardation, 41(2), 78–87. Evidence Level IV.
Last updated - August 2012