A 25-year-old woman comes to the emergency department with her mother due to abdominal pain and fever since yesterday. The pain is episodic and is worse with meals. Medical history includes mild intellectual disability and 2 previous episodes of biliary colic. The patient lives with her parents and can independently perform basic activities of daily living; she needs assistance in managing finances and relies on public transportation to commute to and from work at a coffee shop. Temperature is 38.3 C (101.9 F), blood pressure is 110/75 mm Hg, and pulse is 120/min. On examination, the patient appears ill and is in pain. Palpation of the abdomen reveals a positive Murphy sign and guarding. After additional studies are obtained, the patient is diagnosed with acute cholecystitis, and cholecystectomy is recommended to prevent progression to life-threatening complications. The patient states, "I don't want surgery! I just want to take some pills like last time and go home." Which of the following is the most appropriate next step the physician should take?
This patient has acute cholecystitis, and cholecystectomy is indicated. However, she is declining surgery, and her mild intellectual disability may have prevented her from fully understanding the gravity of her condition and need for urgent surgery.
Rather than prematurely deciding that patients with mild intellectual disability lack capacity to make decisions based on an initial explanatory attempt, the physician should undertake additional measures to facilitate patients' understanding of the clinical condition and allow them to make their own decisions, if possible. Helpful measures may include the following:
If, following further discussion, the patient demonstrates decision-making capacity and refuses surgery, that refusal should be honored regardless of underlying intellectual disability (Choice A). However, if the patient does not demonstrate decision-making capacity despite these measures, the physician may then ask a surrogate decision-maker to make decisions on the patient's behalf (Choice D).
(Choice C) Although an ethics consult can facilitate discussion between the parties involved and provide guidelines to resolving ethical issues (eg, family requesting continuation of futile care), the most appropriate next step in this situation is to obtain informed consent for surgery in a manner that the patient can understand.
(Choice E) Foregoing surgery in this patient can result in life-threatening complications (eg, gangrenous cholecystitis, gallbladder perforation). However, the immediate risk is not appreciably increased by taking a few additional moments to better inform the patient and is not imminent enough to justify surgery without proper consent.
Educational objective:
Obtaining informed consent from patients with mild intellectual disability may require gaining assistance from family members, explaining information in simple language, and using visual aids. It is best to attempt these measures to facilitate the patient's understanding before deciding that the patient lacks decision-making capacity.