I recently cared for a 96 year old woman who was rehospitalized for a recurrent infection (identifying details altered to protect confidentiality). Her family struggled mightily with how to balance the goals of prolonging her life, improving her functional ability, and focusing on comfort.
The patient had a history of dementia (not advanced dementia), several chronic conditions, and had been in and out of the hospital 3 times in the last 6 months for infections, each time returning to her nursing home more physically disabled and cognitively impaired than before. She developed delirium during each hospitalization and never seemed to fully recover.
At the time of admission to the hospital, she was not arousable, and her daughters considered a primarily comfort oriented approach. After some antibiotics and gentle fluids, she became more responsive. Although she didn’t recall her daughters’ names, she seemed to recognize them, and could answer simple yes/no questions. She smiled and laughed when they played music for her.
The question her daughters’ struggled with was how to honor their mother’s wish to continue living until she could no longer meaningfully interact with family. To some this meant more than what she was capable of during the last several months, to others the mere fact that she enjoyed their company was enough for them.
So often, despite out best intentions, these issues cannot be worked out in advance. These daughters lamented that they didn’t have more information about their mother’s wishes. But I would hazard that most people can boil their wishes down to “meaningful interaction” – and can’t get much further beyond that. These choices, so rarely black and white, are often shades of grey.
For the clinician, helping the family through the process of thinking it through carefully may be the best they can do. The process itself may be the best balm for the hard emotional and moral choices these family members have to make.
by: Alex Smith @alexsmithmd