Can a health care instruction be too precise?

We have all heard stories of an elder making the family promise to never admit the elder into a nursing home.  Sometimes, however, people need that level of care, and well-meaning family members are not always able to provide the needed care.  That is part of the story of When to Ignore a Promise to ‘Never Put Me in a Home’ which ran in the New York Times on November 9, 2015. The article features an unidentified patient with a huge bedsore, who had extracted such a promise from her family.  Following that promise to the letter, the family members did their best to care for her, but despite their best efforts, complications occurred.   The doctor authoring the story explained some background

Our patient came from a poor immigrant household without much community support. For years, as she felt herself slipping, she had emphasized over and over again that she never wanted to go into a “home” or be tended by strangers. She wanted to stay at home with her children. Nothing unusual there.

What was unusual was the precision with which her children followed her wishes. As their mother became really confused, then silent, then bedbound, they continued to care for her themselves in the back bedroom.

Turning the focus of the article onto advance directives, and the pros and cons of directives, the doctor writes

[Advance directives] are supposed to give people some control over the future. More often than not, perhaps, the future refuses to be controlled.

Directives may not be detailed enough to help organize a patient’s care. They may be so detailed that doctors and relatives cannot agree on how to interpret the minutiae. Directives may be overlooked in the heat of emergency, ignored out of pure lassitude, or lost somewhere in the closet.

Or, as in our patient’s case, they may be clear and simple, and followed to the letter. And look what happened to her.

The doctor considers health care agents as a better choice, but notes the questions agents must ask principals but frequently don’t: “‘Do you really want me to do exactly what you are telling me to do? How much wiggle room do I get?'”  This is important for many reasons, not the least of which is what you believe and prefer when you sign your directive may not be the same when it is time to use the directive (what the author refers to as the past you and present you).

Our own patient and her family got all bolluxed up in obligations to their past selves. The bottom line was clear — the patient never would have wanted what she got. But even given that, we wondered, when should her children have changed course?

…

We had no good answers. Our patient spent a few days in the hospital and then went straight to a nursing home to finish a long course of antibiotics and, presumably, to live there for the duration.