Case study: Communication when patients lack capacity for decision-making

Mr. A suffered a cerebrovascular accident, which has affected his ability to comprehend and communicate. Mr. A needs someone to consent for percutaneous endoscopic gastrostomy placement, but he lacks the capacity for decision-making, as certified by two physicians.

You ask about Mr. A’s mother for whom Mr. A is the sole caregiver and were told she was placed in a nearby skilled nursing facility (SNF) six weeks ago; when you call the SNF, you are told Mr. A’s mother is too confused to understand that her son is hospitalized. You check Mr. A’s chart and consult with his physician, Dr. B, to see if Mr. A completed an advance directive or a power of attorney form for medical decision-making, but he had not done so. Next, you call the county social services agency, where Mr. A had still been receiving in-home aide services. There you learn Mr. A revealed to his aide that he had a wife, Mrs. A; however, the two are divorced and haven’t seen each other in 20 years. You are given information that leads you to Mrs. A.

Mrs. A meets you at the hospital and is somewhat willing to serve as Mr. A’s surrogate decision-maker. She confirms what Mr. A told you earlier: His only sibling is deceased and his father passed away many years ago. However, you also learn that although Mr. and Mrs. A never had children together, there is a woman named Jaye, now 20 years old, who believes she is Mr. A’s daughter—although he has never acknowledged her as his child. Mrs. A has notified Jaye’s mother about Mr. A’s condition.

Later that day, Jaye comes to the hospital to see Mr. A. You ask her about her relationship with Mr. A, and Jaye says that despite his refusal to acknowledge her as his daughter, she believes Mr. A is her father and sees him twice a year. You discuss the need for a decision-maker, and she immediately volunteers. According to the hierarchy of decision-making, Jaye would be the decision-maker since Mr. and Mrs. A are divorced. However, to make sure, you call the hospital legal department. 

The hospital attorney tells you that since the relationship between Jaye and Mr. A is not certain, Jaye should sign an Affidavit of Relationship declaring her belief that she should be Mr. A’s decision-maker. Jaye signs the affidavit, and you begin communication with her, letting her know that it is likely Mr. A will need to go to a rehabilitation center after the hospital discharges him.

For more information, see the Case Management Patient Communication Toolkit.