Respecting Patient Autonomy in End-of-Life Care

Introduction to Patient-Centered Decision Making

The American College of Critical Care Medicine and American Thoracic Society recommend that clinicians elicit values, goals, and preferences directly from patients themselves whenever they are able to communicate, even when they appear weak or were recently critically ill 2
When a patient with decision-making capacity expresses preferences that differ from their advance directive, the current expressed wishes take precedence over previously documented preferences 2, 3

Advance directives represent what patients believed they would want at the time of writing, not necessarily what they want now when facing the actual clinical situation 3
The goal of surrogate decision-making is to enact the patient's previously stated preferences only when those preferences are "applicable and contemporary" 3
When the patient can currently express their wishes with capacity, those current wishes override prior written directives 2, 3

Physical weakness alone does not indicate lack of decision-making capacity 2
Key capacity assessment criteria include understanding of medical condition and prognosis, understanding of consequences of refusing treatment, ability to communicate a consistent choice, and decision based on patient's own values 1, 2

When a patient has decision-making capacity, the surrogate's role is suspended 2, 3
The surrogate's authority only applies when the patient lacks capacity to make their own decisions 3
Surrogates sometimes make errors due to projection bias, making decisions based on their own values rather than the patient's values 4

The DNR/DNI order should include a clear statement that the patient had decision-making capacity at the time of this decision, date of DNR/DNI order implementation, specific interventions to be withheld, and explicit statement that DNR/DNI does not affect other treatments unless specifically noted 5, 6
Documentation of the discussion with the patient, including her expressed values and understanding of consequences, is essential 5, 6

The clinical team should attempt to help the surrogate understand the ethical and legal framework, explaining that the patient currently has decision-making capacity and therefore makes her own decisions 2
Consider involving palliative care or ethics consultation to facilitate this difficult conversation 4, 8

Do not delay implementing the patient's wishes while trying to convince the surrogate, as this would violate the patient's autonomy and potentially subject her to unwanted interventions if she deteriorates 1, 2
Do not assume weakness equals incapacity, as post-extubation weakness is expected after critical illness and does not indicate inability to make decisions 2, 8
Ensure the DNR/DNI order is reviewed if the patient's condition or preferences change, particularly with significant changes in clinical status 5, 6