Healthcare Decision-Making

OVERVIEW

A. Persons with decisional capacity have a well-established right to bodily integrity, grounded in law and Western bioethics.

B. In any healthcare 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.

BACKGROUND AND STATEMENT OF THE PROBLEM

A. Introduction

Core ethical principles that are the foundation of clinician obligation are the following:
- Respect for autonomy, beneficence, nonmaleficence, and distributive justice.
- 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.
- 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.
- 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.
- 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 healthcare planning.

B. Definitions

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.
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).
Incompetence: A judicial determination that a person lacks the ability to negotiate legal tasks and should be prevented from doing so.
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

Decisional capacity reflects the ability to understand the facts, appreciate the implications, and assume responsibility for the consequences of a decision.
The elements of decisional capacity include the following: (a) understanding, (b) expressing a choice, (c) appreciation, and (d) reasoning.
Standards of decision-making:
- Prior explicit articulation: a decision based on the previous expression of a capable person’s wishes through oral or written comments or instructions
- 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
- 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 healthcare 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 and Mini-Cog test are not tests of capacity.

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 the early stages of dementia and by adults with mild to moderate cognitive impairment.

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:

Articulate their needs and preferences
Follow directions
Make simple choices and decisions (e.g., “Do you prefer the TV on or off?” “Do you prefer orange juice or water?”)
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 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 healthcare 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 or 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 they understand about the clinical situation, the goals of care, and their 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 OUTCOME(S)

A. 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, including instructions regarding the frequency of observation to ascertain the patient’s lucid periods if any

D. Documentation

Is the process of the capacity assessment described?
Is the assessment specific to the decision at issue?
Is the informed consent and refusal interaction described?
Are the specifics of the patient’s degree or spheres of orientation described?
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?
Are the patient’s questions and the clinician(s)’ answers recorded?
Are appropriate mental status descriptors used consistently?

ABBREVIATION

MMSE Mini-Mental State Examination

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Updated: January 2025

Boltz PhD, RN, GNP-BC, FGSA, FAAN, M., Capezuti, PhD, RN, FAAN, E.A., & Fulmer PhD, RN, FAAN, T. T. (2025). Evidence-Based Geriatric Nursing Protocols for Best Practice (7th ed.). Springer Publishing. Retrieved December 17, 2024, from https://www.springerpub.com/evidence-based-geriatric-nursing-protocols-for-best-practice-9780826152763.html#tableofcontents

Chapter 9, Jones, J.R. & Morgan, J.D. (2025) Healthcare Decision-Making and Advance Care Planning

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