What’s Wrong With Advance Care Planning?
The inability of ACP to achieve its desired outcomes represents the gap between hypothetical scenarios and the decision-making process in clinical practice settings. The success of ACP depends on 8 steps: (1) patients can articulate their values and goals and identify which treatments would align with those goals in hypothetical future scenarios; (2) clinicians can elicit these values and preferences; (3) preferences are documented; (4) directives or surrogates are available to guide clinical decisions when patients’ preferences have not changed and they lose enough decisional capacity for their ACP views to become operative; (5) surrogates will invoke substituted judgment (make the decision the patient would make if they were able) and base their treatment decisions on the patient’s prior stated preferences; (6) clinicians will read prior documents and integrate patient preferences into conversations with surrogates; (7) previously expressed wishes will be honored; and (8) health care systems will commit resources and care delivery to support goal-concordant care.
Scenarios and situations in clinical practice settings rarely reflect these conditions. Treatment choices near the end of life are not simple, consistent, logical, linear, or predictable but are complex, uncertain, emotionally laden, and fluid. Patients’ preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden (eg, need to provide personal care, time off from work, emotional strain, out-of-pocket or noncovered medical costs), which change over time. Surrogates find it difficult to extrapolate treatment decisions in the present from hypothetical discussions with patients that occurred in the past, piece together what the patient would have wanted, disentangle their own preferences and emotions, or challenge physicians who recommend different treatments. When a decision must be made, prior directives are often absent, poorly documented, or either so prescriptive or so vague that they cannot promote informed goal-concordant care. Moreover, treatment choices do not occur in a vacuum but are driven by financial pressures, societal capacity to support patient and family needs, and institutional/regional cultures and practice patterns.
