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An Advance Directive Alone Isn't Enough

questionEarly on in her medical residency years, Lauren Jodi Van Scoy, MD, developed an interest in critical care with a focus on end-of-life issues. She wrote DNR: Do Not Resuscitate– Real Stories of Life, Death and Somewhere in Between as a platform to help future patients and their families prepare for the decisions and challenges that await them as they approach the end of life.

My first real lesson in advance directives snuck up on me when I was least expecting it. It was my second week in the intensive care unit and my white coat was still pristinely white and freshly pressed. I heard a nurse yell for assistance and upon entering the patient's room found myself in the precarious position of being the first doctor in the room for a cardiac arrest. As the nurse was scrambling for the oxygen mask, I started CPR. After a few minutes the rest of the code team came crashing into the room, the patient was intubated and started on pressors to raise the blood pressure. Once the patient's doctor arrived, he told us that the patient was seventy years old, never sick a day in his life, and had come in to the hospital with a pneumonia.

It wasn't very long before we had gotten back the pulse and the blood pressure. The patient was saved. As we stood around the patient's bedside, watching the monitor, a nurse came into the room hysterically waving a piece of paper. It was the patient's advance directive. On it was a checklist where the patient had checked off he did not want CPR or mechanical ventilation. I remember how my heart dropped when I saw that paper. I'd been the first to start CPR, and the thought never even occurred to me to even ask if the patient was a full code. I'd just started the compressions.

I backed out of the room, my presence not missed amongst the swarms of more senior doctors who had flooded the room since I'd started the CPR. I welled up with tears feeling horrified I'd done the wrong thing. I'd started a code on a patient who specified Do Not Resuscitate. I ran down six flights of stairs to the office of my mentor, Dr. Poe, choking back tears and plopped myself down onto my favorite chair in his office, one I would come to know often through the years.

Through my sobs I told him what had happened and what I'd done, but he just shook his head and grinned.

"Did you actually read the advance directive?" he asked me.

"Well, yeah," I told him, "He checked off that he didn't want CPR or intubation. "

"Did you read the statements before that?"

I didn't know what he was talking about; I just kept right on crying, feeling terrible for my negligence.

Once he calmed me down, he explained to me I had, in fact, done the right thing.

"This is exactly why I don't have an advance directive," he said. "No one understands them. And this is a perfect example. You're a doctor and the advance directive confused you. From what you've told me, his advance directive doesn't apply. You did the right thing by saving him."

He was right. I'd done the right thing by starting the CPR and the patient ended up walking out of the hospital just a few weeks later. Thankfully, the nurse brought in the advance directive after I started the CPR. The confusion, and importantly, the lesson, is all about those first few statements, the ones no one ever reads or understands.
-An excerpt from DNR: Do Not Resuscitate– Real Stories of Life, Death and Somewhere in Between

Advance directives and living wills are important documents with the best of intentions. Their utility during a crisis should not be underestimated. However, there seems to be an expectation amongst those who possess advance directives their wishes and decisions are poised and ready to face any medical emergency or critical illness that may arise. They seem frustrated and dismayed when the advance directive doesn't provide answers to questions being asked by their loved one's medical team. Perhaps the checklist format of the advance directive gives a false impression medical decision making is black and white, amenable to yes/no answers, when in fact, the exact opposite is true. Medical decisions and end-of-life care is peppered by all shades of grey and when there is grey, the advance directive fails as an entity unto itself. In the absence of prior discussions with loved ones about philosophy, goals and quality of life prior to a medical emergency, the advance directive may let you down.

In my young career, I've found myself taking on a role similar to a tour guide, helping my patients' families as they navigate the murky waters of the intensive care unit and difficult end-of-life decisions. The further I advance in my career, I've found when guiding families through this process, advance directives may paradoxically muddy the water if the black and white situation fails to present itself and shades of grey are revealed.

So, how can we protect our wishes and ensure our loved ones are armed with the appropriate tools needed if faced with an emergency?

  • Identify your personal philosophy. Think about what quality of life means to you. Under what conditions would you consider your quality of life to be lost? What is a meaningful recovery and what insults to your independence would you find to be unacceptable?

  • Name a "Go-To" person.  Even if you have an advance directive, your medical team will approach your family for medical decisions in the event you became incapacitated. Sometimes called a health care power of attorney, proxy, or surrogate decision maker, it's important to be very specific and name the individual you want making your decisions if you become unable to do so yourself.

  • Complete an advance directive. Advance directives may help your Go-To person with tough decisions he or she may encounter. Most importantly, review the document carefully making sure you understand the conditions in which the advance directive takes effect.

  • Talk to your Go-To person about your philosophy and advance directives. Advanced health care planning cannot occur in isolation. Even with an advance directive, if your decision maker is unaware of your wishes and your overall philosophy, it'll be very difficult for them to make decisions about the shades of grey.

  • Learn from experiences of others. Hearing the stories of others and learning from their experiences and choices may be the most valuable thing you can do to prepare yourself for a potential medical emergency. The struggles and victories of others may help you to feel less unsure of your decisions and more likely to embrace the necessary dialogues we all must confront as we face impending mortality.

Visit the website for DNR: Do Not Resuscitate– Real Stories of Life, Death and Somewhere in Between for more information about end-of-life care and planning. -Lauren Jodi Van Scoy, MD

Posted on April 11, 2011

Comments

  • Posted by eilene bassman on Tuesday, April 26 at 06:11 p.m.

    A wonderful book. Having watched a close friend and very close relative die this year, the book was personal. I would never want to be resusitated. Living is all about the quality of life.

  • Posted by Kurt Teil on Thursday, May 05 at 03:42 p.m.

    Very interesting and a fine presentation of the inherent problem with most Patient Directives. They are in my opinion either too long and detailed,or too short.

    Should one not try to develop a simple one pager that still addresses the major points without too much specificity?

    If one had such an easily understood and concise draft, I could see volunteers knocking on doors and inviting occupants to an "End of Life" option discussion, right there on the front steps!

    Sincerely,
    Kurt Teil

  • Posted by Frank Wells on Friday, May 06 at 05:35 p.m.

    This article baffles me. The excerpt from Ms Van Soy's book describes an incident during which the patient's "go to" person and the patient's physician were both absent. Nevertheless, the advice in the commentary that follows goes on and on about the necessity to ensure those two people understand your philosophy and wishes.

    The point of the excerpt is that the advance directive in question contained "... those first few statements, the ones no one ever reads or understands" and that these statements negated the patient's DNR order. The excerpt never identifies those statements, and the commentary doesn't either, leaving me unable to identify such statements, if any, in my own advanced directive.

    The two sections of the article appear to be totally unconnected. For that reason, I didn't find the article helpful.

  • Posted by Lauren Jodi Van Scoy on Friday, May 27 at 05:34 p.m.

    Thanks for the comments about my guest blog.

    @eilene- make sure your family knows your wishes! ;)

    @kurt- I'm not sure that there is a "right length" of an advance directive, but I agree that most do seem to fall short. Predicting 'what will happen' is near impossible and so its best to make sure that no matter what type of advance directive you choose, that the person who will be enforcing it knows your personal philosophy about end of life, quality of life and your wishes.

    @Frank- thanks very much for your critique. I think the exerpt is just that, an exerpt, meant to highlight uncertainty when push comes to shove. In reality, the "go-to" person is very often not present during the time of a cardiac arrest, as in the exerpt, yet may "feel safe" in that the advance directive will "take care" of every situation. Advance directives, although wonderfully useful at times, have times of uncertainty as well. Recognizing their pitfalls is the first step in finding ways around them. The book "DNR: Do Not Resuscitate" is meant to offer a window into the intensive care unit by telling the stories of five real people and their triumphs and struggles during critical illness and end of life situations. Hopefully, their stories will help inform and inspire others.

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