Strategies for Building Trust with the Caregiver of a Patient with End-Stage Dementia

Abstract

This case describes a patient with advanced dementia and an unrealistic spouse, presenting an apparent dilemma about nutrition for physicians. By eliciting the perspective of the caregiver, the physicians can gain insight and rebuild trust that protects the interests of both the patient and the spouse. Their goal needs to shift from resolving the professional ethical dilemma to affirming the immeasurable contribution of the caregiver, acknowledging her journey, asking for her advice, and enabling the work of making meaning in the time available. CaseAs part of a geriatric medicine elective in his fourth year of medical school, Thomas spends a couple of afternoons a week at a local nursing home seeing patients with the attending geriatrician, Dr. Smith. One of the patients that Thomas sees with Dr. Smith is Mindt, a 78-year-old man with a history of advanced dementia who is recovering from pneumonia. He was diagnosed approximately ten years ago and moved into the nursing home about five years ago when he experienced greater functional and cognitive decline. His wife, Nila, who is in her early 70s, lives in the community and visits him frequently. They had one son who died of a myocardial infarction about 13 years ago. Nila is the health care proxy, but since Mindt didn't clarify his preferences for end-of-life care while he had decision-making capacity, she and his other caregivers are unsure about how to respond when Mindt's dementia progresses to the point at which he has trouble eating. Now that he either won't open his mouth or appears to be choking when she has been trying to feed him, it seems that the time has arrived for a critical end-of-life conversation and decision.Nila requests a meeting with Dr. Smith to discuss her concerns about her husband's eating. A family meeting is arranged among Nila, Dr. Smith, Thomas, and a nurse and speech-language therapist who both work closely with Mindt. During this meeting, Nila expresses that if Mindt is not eating, he won't be able to keep up his strength, and if he can't keep up his strength, she worries that he won't continue to recover from pneumonia. Dr. Smith explains to Nila that appetite loss and difficulties in eating are part