Overview

Health care is about decisions.  Until the latter half of the 20th century, patients were told what health care interventions would benefit them and they rarely questioned the doctor's instructions.  The rise of the rights movement in most areas of society promoted the idea that patients would benefit from robust participation in decision making affecting their health outcomes.  Building on the well-established doctrine of informed consent, as well as statutory and case law, all states came to require that patient wishes and values be central to health care decisions.  The result was a greater degree of clinician-patient collaboration in planning and implementing care decisions. 

Although all health care activities require principled and thoughtful decision making, treatment, and diagnostic interventions--because of their benefit-burden-risk calculus--typically require specific informed consent by or on behalf of the patient.  For this reason, the determination of decision-making capacity, authority, and standards becomes a most pressing clinical issue when deciding about treatment or diagnostic interventions. 

Nursing Standard of Practice Protocol: Health Care Decision Making

Evidence-Based Content - Updated April 2016

Reprinted with permission from Springer Publishing Company. Evidence-Based Geriatric Nursing Protocols for Best Practice, 5th Edition, © Springer Publishing Company, LLC. These protocols were revised and tested in NICHE hospitals. The text is available here.

The information in this "Want to know more" section is organized according to the following major components of the NURSING PROCESS:

Goals
Overview
Background and Statement of Problem
Assessment of Decisional Capacity
Nursing-Care Strategies
Evaluation and Expected Outcomes
References

I. Goals

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 processes used to assess decisional capacity

D. Can describe the nurse’s role and responsibility as an advocate for the patient’s voice in health care decision making.

II. Overview

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.

III. Background and Statement of Problem
A. Introduction

1. Core ethical principles that are the foundation of clinician obligation are the following:

a. Respect for autonomy, beneficence, nonmaleficence, and distributive justice

b. Clinically, legally, and ethically valid decisions by or for patients require 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.

B. Definitions

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: A decision based on the previous expression of a capable person’s wishes through oral or written comments or instructions.
b. Substituted judgment: A 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 interests standard: A 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.

Assessment of Decisional Capacity

A. There is no gold standard instrument to assess capacity.

B. Assessment should occur over time, at different times of day, and with attention to the patient’s comfort level.

C. The MMSE or Mini-Cog Test are not tests 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 sufficient decision making is retained in early stage of dementia (Kim et al., 2002) and by adults with mild to moderate mental retardation (Cea & Fisher, 2003).

 

Nursing-Care Strategies

A. Communicate with the 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 the patient’s 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.

1. “Tell me in your own words what the physician explained to you.”
2. “Tell me which parts, if any, were confusing.”
3. “What do you feel you have to gain by agreeing to (the proposed intervention)?
4. “Tell me what you feel you have to lose by agreeing to (the proposed intervention).
5. “Tell me what you feel you have to gain or lose by refusing (the proposed intervention).
6. “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, and his or her 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.

Evaluation and Expected Outcomes

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

D. Documentation

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?
6. Is the patient’s demeanor during this discussion recorded?
7. Are the patient’s questions and the clinician(s) answers recorded?
8. Are appropriate mental status descriptors used consistently?

ABBREVIATION
MMSE  Mini-Mental State Examination

For Definition of Levels of Quantitative Evidence Click Here

From Evidence-Based Geriatric Nursing Protocols for Best Practice, 8th Edition. © Springer Publishing Company, LLC.

References

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 - April 15, 2016

Journal Articles

Drane J. 1984. Competency to give informed consent: A model for making clinical assessments. JAMA 252(7):925-927.

Foreman MD, Fletcher K, Mion LC, & Trygstad L. (2003). Assessing cognitive function. In Mezey et al Geriatric Nursing Protocols for Best Practice. Second edition. NY: Springer.

Kapp MB & Mossman D. (1996). Measuring decisional capacity: Cautions on the construction of a capacimeter. Psychology and Public Law, 2; 73-95.

Lo B. 2000. Decision-making capacity. In Resolving Ethical Dilemmas: A Guide for Clinicians, Second Edition. Philadelphia: Lippincott Williams & Wilkins, pp. 80-87.

Mezey, M., Mitty, E., & Ramsey, G. (1997). Assessment of decision-making capacity: Nurse's role. Journal of Gerontological Nursing, 23(3), 28-35.

Mezey, M., Teresi, J., Ramsey, G., Mitty, E., & Bobrowitz, T. (2000). Decision-making capacity to execute a health care proxy: Development and testing of guidelines. Journal of the American Geriatrics Society, 48, 179-187.

Mezey, M. D., Mitty, E. L., Bottrell, M. M., Ramsey, G. C., & Fisher, T. (2000). Advance directives: Older adults with dementia. Clinics in Geriatric Medicine, 16, 255-268.

Volicer, L., & Ganzini, L. (2003). Health professionals' views on standards for decision-making capacity regarding refusal of medical treatment in mild Alzheimer's disease. Journal of the American Geriatrics Society, 51, 1270-1274.

Last updated - September 2005