A 66-year-old woman comes to the clinic for follow-up of sarcoidosis. Over the past year, her lung function has worsened significantly, and her probability of survival at 12 months is below 50%. When discussions regarding advance care planning and appointment of a surrogate decision maker are initiated, the patient replies, "Why would I want to sign away my life on a piece of paper? The Lord will take me when the time is right." Which of the following is the best response?

Question

A 66-year-old woman comes to the clinic for follow-up of sarcoidosis.  Over the past year, her lung function has worsened significantly, and her probability of survival at 12 months is below 50%.  When discussions regarding advance care planning and appointment of a surrogate decision maker are initiated, the patient replies, "Why would I want to sign away my life on a piece of paper?  The Lord will take me when the time is right."  Which of the following is the best response?

Quizplus · Accepted Answer

Advance care planning (ACP) identifies a patient's personal preferences for health care in case of chronic, serious illness. ACP is a flexible, patient-centered process (ie, prioritizing patient values); it may include (but does not necessitate) creation of legal documents, such as appointment of surrogate decision makers who act on the patient's behalf if the patient is incapacitated. ACP often begins with informal conversations with patients (and trusted family members, if appropriate) exploring beliefs about illness, death, and health care interventions. ACP is meant to promote patient empowerment by ensuring patients receive care aligned with expressed values. However, patient participation in ACP remains low (<11% of patients), and occurs even less frequently for patients belonging to ethnic minorities (eg, Hispanic, Black, Asian). Ethnic disparities in ACP initiation and completion may result from distrust of health care systems, cultural norms, misconceptions, and suboptimal physician communication. This patient's statement indicates that she has a misconception about ACP (eg, she must "sign away" her life with legally binding documents), and values ownership over her health care decisions - a value which is in fact supported by ACP. Therefore, the physician should respond by explaining the ACP's shared goal of patient empowerment (eg, of allowing her voice to be heard) in simple, nonjudgmental terms. Expressing this patient-centered goal can increase trust, acceptability, and likelihood of patient engagement in subsequent discussions. (Choice A) Given the patient's low probability of 12-month survival, realistic conversations about end of life are important. However, this statement does not focus on the patient's expressed values, may be perceived as judgmental or patronizing (it assumes the patient has not otherwise been preparing for end of life), and does not emphasize the goal of patient empowerment through ACP. (Choice B) The patient has not expressed fear, so this statement is less likely to engage her and may appear condescending. (Choice D) This statement describes only one aspect of ACP (ie, appointment of a surrogate decision maker); furthermore, it is premature to assume that the patient values or prefers family involvement. (Choice E) If the patient continues to decline engagement, her wishes should be respected; however, the physician should first clarify potential misconceptions about ACP (eg, "sign my life away") and attempt to find common ground by highlighting the shared, patient-centered goal of ACP. Educational objective: Patient participation in advance care planning (ACP), the process of identifying a patient's health care goals in case of serious illness, is low, especially for ethnic minorities (eg, due to mistrust or suboptimal physician communication). Physicians should engage patients in ACP by first explaining its primary purpose of patient empowerment (eg, allowing the patient's voice to be heard).

A 66-Year-Old Woman Comes to the Clinic for Follow-Up of Sarcoidosis