How could we have missed this most basic and vital piece of information? It’s easier than you might think. The sister didn’t get along with the wife and apparently wasn’t moved to tell us of her existence. The social worker had been out sick, and his replacement assumed that we knew. And we had a concerned sibling at the bedside who fulfilled our mental checkbox for who makes an acceptable surrogate decision-maker.
While doctors are dealing with the medical issues during end-of-life situations, they have a harder time thinking about the personal wishes of their patients. It's best to have a plan in place and someone to communicate those wishes to the doctor in charge.
For the thoughts and an appreciation for these end-of-life difficulties, you might want to read a recent article in The New York Times titled “Who Can Speak for the Patient?”
Doctors have an incredibly difficult role to play at a very important juncture in the lives of a patient and their family. This “role” is above and beyond their job of ensuring for medical care. The role of the doctor is to relay the medical information and difficult prognosis to decision-makers, but that is not always clear to the doctors or the hospital. In the original article, a very common family situation became the backdrop for a decision about whether to continue life-sustaining care, and the wrong person was almost relied upon for innocent and understandable reasons.
The takeaway from this instructive article should be an awareness of how vital it is to maintain readily available records, so it is clear who is responsible when a patient cannot make their own choices and what kind of choices those might be. In this case, once the wife was properly identified, then she was able to make the right decisions. However, precious time is lost and family strife can build when it is not clear who has authority. These are things we all have to think about, and it is necessary to think them through before it is too late.
Reference: The New York Times (June 19, 2014) “Who Can Speak for the Patient?”