Surrounding the end of life, two simple words will guide our care.

It’s essential to understand why our Code Status has such decisive authority – and then to talk about it.

“What Exactly is Code Status?”

When either our heart or breathing stops, which back in the day was called “death,” our Code Status is the ultimate authority in directing our medical team how aggressive to be in their resuscitation efforts. There are only three choices: “Full Code,” “Modified Code,” and “Allow Natural Death” (AND), also referred to as “Do Not Resuscitate” (DNR.) Each choice will be described in more detail below.

Our “Chart” is now an Electronic Medical Record (EMR)  

Less than twenty years ago, a thick file of medical records, doctors’ notes and personal information followed each patient around the hospital. What’s still fondly known as our “chart” is now a computerized Electronic Medical Record (EMR). The use of our EMR is strictly governed by HIPAA regulations, (the Health Insurance Portability & Accountability Act) and with signed consent, is shared quickly and confidentially via the internet between providers and various sites where we receive care. Front and center, atop every patient’s chart, our Code Status is clearly noted.

A Primary Purpose of Advanced Care Planning (ACP)

The discussion of Code Status between patient, family and the clinical team is of the utmost importance. Advance care planning and the advance directive are designed to help clarify under what conditions a person wishes to be Full Code, Modified Code, or to Allow for a Natural Death. Every patient, regardless of our age or health, is encouraged to understand and discuss the medical response that comes with each option. Our medical team and family members can only honor our wishes if we share them.

Admittedly, this can be time-consuming and emotionally daunting. For these reasons, these conversations are often postponed and even unattended to, which can lead to undue and prolonged suffering. If my heart stops, and my chart still says, “full code,” the hospital is legally bound to attempt resuscitation and provide life support at all costs. In this case, the tug-of-war between high-tech life support and the body’s natural dying process can be a dreadful conflict.

A Straightforward Remedy

The simplest way to avoid such a conflict is to talk with our doctor(s) and healthcare agent and note our preferences in our advance directive. This will guide the medical team in adjusting our Code Status as our medical condition changes. Our agent and our advance directive will hold sway only if we lose the capacity to communicate clearly. If we can talk and have “capacity,” our choices can be updated in real time. If our goals of care change, our advance directive can be updated simply by having a new one signed, witnessed, and distributed.

Note well: When a person chooses to Allow Natural Death (or DNR) it does not affect their quality of care. It solely pertains to the medical team’s response when the heart or breathing stops.

“I Want Everything Done,” Means Full Code

The healthcare system’s default is Full Code, meaning everything possible will be done to resuscitate you, no matter what. If we haven’t discussed it, or documented it, we are deemed Full Code.

You likely already have a sense what Full Code looks like. The most recognizable efforts are cardiopulmonary resuscitation (CPR). Unfortunately, TV and Hollywood have grossly misled us regarding the value of CPR. The success rate of cardiopulmonary resuscitation, when performed on patients with advanced or chronic illness, is less than three percent.

When a patient is Full Code, the hospital’s resuscitation efforts can go on for over an hour. The full response includes chest compressions, forceful enough to break ribs, electric “paddles” (AED) to shock the heart back into rhythm, intubation on a ventilator, and powerful intravenous medications, called “pressors,” to boost heart contractions. Ninety-seven percent of the time, all for naught.

Modified or “Limited” Code

A Modified Code means that only certain resuscitation efforts will be used. You, your doctors, and your healthcare agent need to discuss the types of treatments or procedures you would accept, or not, and under what conditions. For example, a patient might accept resuscitation efforts during a life-saving operation, but revert to “DNR,” once back in their room. Another example: to accept breathing support from a ventilator for a limited period of time but decline CPR.

Allow Natural Death and Do Not Resuscitate

Do Not Resuscitate (DNR), means that if you stop breathing — no heroic measures will be attempted to bring you back. In many hospitals and end-of-life settings, DNR is being renamed “Allow Natural Death” (AND). Allow Natural Death has gained acceptance because it honestly describes what takes place when our heart or breathing stops, and resuscitation efforts are not attempted. To the contrary, DNR implies that resuscitation is still possible when most often it isn’t. The term DNR also carries a connotation that something essential is being withheld that would otherwise lead to a positive outcome, which is misleading.

In a recent Stanford University survey of 1,400 medical doctors, eighty-eight percent had chosen DNR or AND for themselves. Why? Most likely because doctors are best informed about both the limited benefits and extensive burdens of resuscitation efforts.

AND’s First Cousin: Comfort Measures Only

When the medical team concedes there is nothing more they can do to treat an underlying illness, and the patient and family agree to transition from Full Code to AND, then “Comfort Measures Only” (CMO) becomes a saving grace. While not a true Code Status, in choosing Comfort Measures Only, the patient accepts that death is inevitable, though perhaps not imminent. CMO is an official physician’s order to stop all curative treatment and to allow death its due. It is an express wish to relieve or minimize all forms of further suffering.

“Just Pull the Plug!” Requires More Detail

We’ve all heard it said and have perhaps even said it ourselves. Unfortunately, it’s too general and vague a request to be useful. “Don’t let me become a vegetable,” is in the same category. These common requests fall short because they mean different things to different people. A better alternative: to think about and describe what conditions would be unacceptable to us, and under which we would want life-sustaining treatment to be withheld or withdrawn.

What’s Considered “Life Support” or “Life-Sustaining Treatment?”   

Life Support is any treatment that keeps us alive, and without which we would die. The most familiar examples: CPR, a ventilator or “breathing machine,” dialysis treatments, blood transfusions, artificial nutrition, and hydration, i.e., “feeding tubes”, and external defibrillation (AED).

A Quick Review

• Code Status determines the medical team’s response when our heart or breathing stops.
• Our Code Status does not otherwise affect the degree or quality of our care.
• We each have a responsibility to understand Code Status and to discuss it with our “team.”
• Everyone is deemed to be Full Code until we choose otherwise.
• It’s normal to choose Full Code, until one’s quality of life is lost and irretrievable.
• A patient, or their healthcare agent can request a change in Code Status at any point.
• How we each define quality of life is very personal yet can be discussed and determined ahead of time.
• That discussion falls under the heading of our “goals of care.”
• A goals of care discussion guides our medical team and healthcare agent in deciding when to transition from Full Code to either a Modified Code or to Allow Natural Death.
• Such a discussion is essential to avoid undue suffering.

Next Steps?

This an uncomfortable topic that most of us would rather put off discussing for as long as possible… Such avoidance comes at a high cost. Please take my word for it. The least desirable time and place for such a conversation is at the hospital during a medical crisis.

The most effective alternative is to broach the subject with an empathetic clinician or a loved one, sooner than later. Coming to terms with Code Status and our goals of care is at its best a shared, gradual process. If you’re reading these words, then you’re right on track. You have the time needed to take control of your care at end of life – to say what you would want and would not want, and to enjoy the peace of mind that will come from doing so.

Next Week’s Post: Easing Fear and Anguish at End of Life

 

A Medical Advice Disclaimer

The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.

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‘Safe Journeys, until next week,

DSW