Updated: Oct 6
Not long ago, the New York Times ran an article called, Filing Suit for ‘Wrongful Life’ that talked about how some families have chosen to respond to health care professionals who fail to honor their loved ones’ advance directives. This article has sparked a lot of discussion, especially among the attorneys I know. As a Certified Elder Law Attorney and as a healthcare professional who spent more than two decades working as a Registered Nurse and a Gerontological Nurse Practitioner, I find the topic fascinating.
Why do doctors ignore advance directives?
Mindset is one reason. In addition to taking an oath to do no harm, most doctors are doing everything they can to avoid a lawsuit. Many believe that if they keep a person alive, they are less likely to get sued. This can motivate a doctor to ignore advance directives. It won’t take too many more cases like the ones the article talks about before doctors start to realize that they’re just as likely to get sued if they keep someone alive who wanted to pass naturally.
Courage is another factor. Few physicians look forward to the long and difficult conversations about a patient’s prognosis. In fact, it’s rare to find a doctor willing to give honest answers to questions like, What’s the likelihood of recovery? What will quality of life be like after recovery? Is the illness really terminal? In fact, the word “terminal,” points to one of the biggest problems with living will documents: their ambiguity. What does “terminal” really mean? Doctors are probably going to interpret terminal differently than a layperson. That’s why it’s so important for the doctor and the patient or their family to be able to talk openly.
I’m often asked by healthcare agents what to do if the medical team is pressuring them to ignore an advance directive. Let’s say that your loved one doesn’t want to be intubated, but the doctor is giving you reasons why it should be done. Fortunately, you have options. One is to ask for a second opinion. Another option is to include the hospital social workers who can help the family reach a comfortable decision. Lastly, you can appeal to the facility’s ethics board.
What do you do if you discover that the facility has already taken action that violates the provisions of the advance directive? Say your mom is in the hospital and has a DNI (Do Not Intubate) order, then you discover that she was intubated. The first question will almost always be, “How could this happen?” but that is best saved for later. The first order of business is to find a way to honor your loved one’s wishes, which means getting rid of the ventilator. I would be pulling in the attending physician and asking, “How do we undo this? This is not what my mother wanted. I want this reversed.”
Is this a widespread problem? I don’t think so. Health care providers usually get it right, or at least close to right. As I see it, there is no evidence that there is a widespread disregard for advanced directives. It happens occasionally. However, medical providers need to get it right more of the time, and better communication between doctors, patients, and families is the key. That brings me to my final point.
The root cause of this problem is our fractured health care system. Think about it. Your primary care doctor, the one you’re most likely talking to about your end-of-life and treatment preferences, is probably not the person who will be taking care of you when you’re in a situation where your advance directive will be needed. You are more likely to be treated by a hospitalist, a doctor you’ve never seen before, a person who knows nothing about you. While that may be an efficient and cost-effective way to deliver care, it’s a fractured system better suited to processing widgets. The focus should be on what’s important to the person, not on what can be billed for or what Medicare will reimburse. When our healthcare system addresses that issue, we will be much closer to a solution that works for everyone.