Story from the Front Lines: Deciding When It's Mom's Time to Die

This is the story of Mom and a doctor who came close to deciding when she should die, by nearly refusing her emergency medical care, since Mom has Alzheimer's disease and Chronic Obstructive Pulmonary Disease (COPD).

Last week, I wrote a SharePost about a philosophy that seems to permeate Western civilization’s health care system and its views of end of life care. Often, those of us who live in the Western civilization use the word “if” and not “when” in relationship to the death of our loved ones, as well as our own demise.

That SharePost responsed to a chapter in a new book by Dr. Atul Gawande published in April 2007. In Better: A Surgeon’s Notes on Performance, Dr. Gawande uses the chapter, entitled “On Fighting,” to discuss the medical and ethical dilemmas that doctors encounter when treating people with serious illnesses. 

Better notes that we rarely know when people’s last six months will be (which is also when the largest expenditures take place). Dr. Gawande writes, “In the absence of certainty, the truth is we want doctors who fight.” Later in the chapter, he explains, “The seemingly easiest and most sensible rule for a doctor to follow is: Always Fight. Always look for what more you could do. I am sympathetic to this rule. It gives us our best chance of avoiding the worst error of all – giving up on someone we could have helped.”

I totally understand this flip side of the equation –- this need to fight -– due to a horrible situation over a year ago, when a doctor hesitated to give Mom the necessary emergency care, since she has Alzheimer's and COPD. All I would suggest is that the fight is appropriate for the patient’s situation.

In January 2006, I walked into the nursing home to see Mom. On that bright Friday afternoon, I decided to visit a little earlier than my usual time, since I had been in the area to have lunch with a friend. As I entered the secure unit where Mom at that time resided, two nurse’s aides made a beeline for me. “You need to see your mom,” they demanded. “She’s not doing well.” I quickly walked past the nurse’s desk with the two aides and headed straight to Mom’s room.

Upon entering, I found Mom basically non-responsive. She groggily would answer questions, but she had a dazed look in her eyes that indicated that her answers were based on reflex, not on what she truly was experiencing. What was amazing was that I had visited Mom the night before and she was acting just fine and looked healthy.

I immediately asked the aides to get the nurse to come to Mom’s room. Fortunately, I had come right as a change in the nursing shift was happening, so I got both nurses (the one whose shift was ending as well as the one who was coming on duty). This proved to be a moment of critical luck since the aides took me aside and told me that they had been telling the morning nurse (who was a substitute) that Mom was having health issues, but that this nurse ignored their feedback.