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.
The nurse who was coming on duty (and who also was not regularly assigned to the secured unit where Mom lived at that point) took command of the situation. She took Mom’s vitals and quickly went to call Mom’s doctor. He was out for the day, so the nurse asked for the doctor in his practice who was on call. I waited with Mom, trying to figure out next steps in this developing crisis. The nurse came back, saying she left a message for this other doctor to call.
We then began to talk about how to transport Mom to the hospital since she was almost non-responsive, and I didn’t want to get caught waiting with Mom for a long period of time in the emergency room’s waiting area before treatment was rendered. The nurse assured me that when the doctor called, she would ask for the authority to have an ambulance dispatched. Right then, the nurse was paged, and we hoped it was the doctor who was on call.
Soon, the nurse came back to the room and relayed the conversation that had just happened, and I was so shocked that several weeks later I had to confirm with the nurse that what I heard was correct. The doctor who was on call had asked what Mom’s vital signs were. The nurse responded with the latest information. He then asked if she had Alzheimer’s disease. And then he asked the nurse to confirm that Mom had Chronic Obstructive Pulmonary Disease (COPD). She replied affirmatively to these two questions. Then the doctor hesitated and a very long pause ensued.
It wasn’t until the nurse told the doctor pointedly that Mom’s family was very involved in her care that the doctor slowly authorized the trip to the emergency room by ambulance.
In shock as I was about Mom’s deteriorating health situation, I wasn’t sure I had heard the nurse correctly. Therefore, I decided not to confront the doctor directly when he came into Mom’s emergency room late that evening, but I made some comments to get the point across that, if he indeed had tried to delay Mom’s treatment in order to let her die, that I was aware of what he had done. He quickly came up with a comment that made me think that I really might have heard the nurse correctly.
Mom was admitted to the hospital with a diagnosis of bronchitis. She was medically treated as if she was developing pneumonia due to her weak lungs. And four days later after a course of medicines, she was recovered enough to be released. We had another week of scares concerning her health, but after physical therapy, Mom rebounded for the most part.
A few months later, I ran into the nurse who had handled Mom’s health situation so well. I asked her if I had heard her correctly about what this doctor had said, and she responded yes. She told me she had documented the conversation with that doctor just in case anything came of it in the future.
So when I read Dr. Gawande’s chapter, I also have to say that I do want doctors who will fight appropriately. I do not believe that Mom’s health issues in January 2006 were the right time for her to die. The medical community did not have to make exceptional efforts to save her at that point. And by getting that treatment, Mom was able to recover enough to live for over a year later with no additional trips to the hospital.
Furthermore, Mom’s survival also enabled my father to complete all the preparations to move to this area and to spend time with Mom in order to get some closure after experiencing a verbally brutal time period as Mom descended into Alzheimer’s disease.
So, as I recount this tale, I want to go on record on several key points. First of all, I hope that doctors will fight appropriately, depending on the patient’s situation. And when Mom reaches the point that we need to let her go, I will do so painfully, but with great respect for her wishes and recognition that she has reached the point of “when” she dies.
However, in saying that, I will make sure that the doctor who was on call on that fateful day in January 2006 has absolutely no part in making any decision concerning Mom’s death and is nowhere near her when her time to leave this world comes!
For More on End-Of-Life Issues, Please Read:
The Right Time for Mom to Die: Finding Resources and Context
Published On: May 07, 2007