29.1 Advance Care Planning, Nonbeneficial Treatment, Informed Consent & Confidentiality

Capacity and Decision-Making Authority

Decision-making capacity is decision-specific and clinically determined (in contrast to competency, which is a legal determination). A patient has capacity when they can:

1. Communicate a choice.
2. Understand the relevant information.
3. Appreciate the situation and its consequences for themselves.
4. Reason about treatment options.

Delirium, intoxication, and severe depression can impair capacity, and capacity can fluctuate. A patient who refuses a recommended treatment is not thereby incapable: the standard is the quality of the reasoning process, not agreement with the physician.

When capacity is absent, decision-making authority follows this order:

1. The patient's own clear, applicable instructions in an advance directive. A surrogate cannot override a valid, specific directive.
2. The appointed agent under a durable power of attorney for health care (or a court-appointed guardian).
3. A default surrogate in statutory order, which typically runs spouse or domestic partner, adult children, parents, adult siblings, then other relatives or a close friend. The order and its details vary by state.
4. No surrogate available: follow institutional policy, which may involve an ethics committee, a physician-attestation process, or court appointment. Do not delay emergency treatment while this is sorted out.

Standards for surrogate decisions: substituted judgment (what the patient would have chosen) is primary, with the best interests standard used only when the patient's values are genuinely unknown.

Advance Care Planning Documents

Practical points:

• A DNR order is not a "do not treat" order. It addresses cardiopulmonary resuscitation only and must not reduce other care; discuss intubation, vasopressors, dialysis, and transfer separately.
• Perioperative DNR orders are reconsidered rather than automatically suspended: the options are full suspension, procedure-directed limits, or goal-directed limits.
• Documents must be reconciled with the current clinical situation. An advance directive written years earlier for "terminal illness" does not automatically apply to a potentially reversible critical illness.
• Patients can change their minds. A conscious patient's contemporaneous wishes override any earlier document.

Potentially Inappropriate and Nonbeneficial Treatment

Professional society guidance (ATS, AACN, ACCP, ESICM, SCCM) distinguishes:

• Futile treatment: an intervention that cannot accomplish the intended physiologic goal. Clinicians should not provide it, and the term should be reserved for this narrow situation.
• Potentially inappropriate treatment: an intervention with some chance of the effect the family wants, but which clinicians believe competing ethical considerations justify not providing. This is where most conflict lives.

The recommended fair process when conflict persists:

1. Expert, repeated communication about prognosis, goals, and the patient's values; enlist interpreters and cultural or spiritual support.
2. Second medical opinion and involvement of the multidisciplinary team.
3. Ethics consultation.
4. Offer transfer to another willing institution.
5. Inform the surrogate of the process and their right to seek judicial review.
6. Only if the process is complete and support still favors the clinicians' position should treatment be limited over objection, in line with institutional policy and law.

Do not unilaterally withhold requested treatment because of a personal judgment about quality of life. Conversely, clinicians are not obligated to provide interventions that cannot work, such as CPR for progressive refractory multiorgan failure in a dying patient when physiologic goals cannot be met.

Time-limited trials are the most useful practical tool: agree in advance on the intervention, the objective markers that would indicate improvement, and the duration after which the plan will be reassessed. This converts an argument about values into a shared empirical question and reduces the family's sense of abandonment.

Informed Consent in Critical Care

Elements: disclosure of the diagnosis, the proposed intervention, its risks and benefits, the alternatives (including doing nothing), and an assessment of voluntary, competent agreement.

Exceptions:

• Emergency (implied consent): a patient without capacity and no available surrogate who faces imminent serious harm may be treated under the emergency exception.
• Waiver: a capable patient may decline to receive information or delegate the decision.
• Therapeutic privilege: a narrow, rarely justified exception.

Practical issues: separate consent for each significant procedure, document conversations, use interpreters rather than family members for translation, and recognize that a signed form is not consent; the conversation is.

Confidentiality and HIPAA

• Permitted without specific authorization: disclosure for treatment, payment, and health care operations; required reporting (communicable disease, certain injuries, suspected abuse); and disclosures to prevent a serious imminent threat.
• Family and friends: a clinician may share information relevant to the person's involvement in care if the patient does not object, or, when the patient lacks capacity, if it is in the patient's best interest. Verify identity for telephone requests.
• Minimum necessary: share only what is needed for the purpose.
• Common ICU breaches: discussing patients in elevators and hallways, leaving records visible, accessing charts out of curiosity, posting details or images on social media, and texting unsecured protected health information. These are reportable and sanctionable.
• Patient access: patients have a right to their records and to an accounting of disclosures.
• Research use requires IRB-approved authorization or a waiver (see the research section).
• Special protections apply to substance use disorder treatment records (42 CFR Part 2), psychotherapy notes, and sometimes HIV and genetic information under state law.

Other Recurring Ethical Issues