Imagine this (disclaimer- it's morbid): Your sweet, loving grandmother is well into her 8th decade of life. Over the past few years her dementia has progressively worsened and she now lacks ability to care for herself. She must be fed, bathed, moved, redirected. She spends most of the day in bed, getting a little weaker with each passing month. While she remains pleasant, she hardly remembers what happened yesterday. She remains at home with your family and everyone does their part in providing the best care.
On one terrible day, you find your grandmother writhing in pain clutching her stomach, becoming increasingly drowsy and pale appearing. Shortly thereafter you decide to call 911. In the meantime she becomes less responsive to you, and has seemingly lost consciousness. EMS arrives at this time and she no longer has a pulse- she's in cardiac arrest. The EMT looks at you and asks, "Is your grandmother full code? Do you want everything done?" Panicked, you realize you've never talked about this with your family should this situation arise. You obviously want your grandmother to be alive, and if there's a way to save her, why would you deny her that? You blurt out, "Do everything you can!" And that's exactly what the team does. They buzz around your frail grandma, beginning forceful chest compressions, fumbling to put in an IV to her veins. There's a bag over her mouth trying to deliver her oxygen and they're hoisting her up on a stretcher, rushing her to the nearest hospital. You rush off with them and burst into the emergency room as they're still pumping away on her chest, nurses loading her with pushes of drugs in a futile attempt to get her heart to work again. She gets a breathing tube placed down her throat and the code keeps running. Miraculously after roughly 30 minutes of CPR and medications through her IV, she is detected to have a pulse-- it's thready, barely detectable, but your grandmother's pulse is back.
The physician inserts a large IV line into her neck and because her blood pressure is so low, she has to be on IV drips to artificially keep it elevated, so that her organs can get blood delivery despite the weak beating of her heart. From what you can tell, she remains unconscious. By this time the rest of your family arrives and they look at your grandmother horrified, a lifeless body hooked up to lines and tubes, spatters of blood around the bed, unresponsive, barely human at this point. The ER doctor gently approaches your family and explains the situation. She says firmly, "Despite her having a pulse, she is unlikely to have a meaningful recovery from this. We should discuss what's best for your grandmother should her heart stop beating again."
^^ I see the above scenario over, and over, and over again. Elderly patients with multiple medical problems, or younger patients with an end-stage disease and poor prognosis having never discussed code status with their families. Never expressing what they would want in the setting of cardiac arrest or respiratory failure, it defaults to "do everything." The purpose of writing this is to encourage dialogue between families/loved ones regarding this crucial topic. As one of my favorite attendings at my hospital says, our job is to help patients to gain and maintain health, but also to die a dignified death. Death is a part of life. In many scenarios, agreeing to CPR, intubation, and other heroic methods in medicine is only prolonging the inevitable with an extended period of pain, suffering, and inhumane experiences.
CODE STATUS EXPLAINED
There are few combinations of different interventions and levels of aggressive therapy that patients may want, but it typically falls into the following four descriptions:
1. Full Code. This is the scenario of "doing everything" in an attempt to bring someone back to a reasonable state of health in the setting of cardiac arrest or respiratory failure. If a patient's heart stopped, this would prompt immediate resuscitation efforts until all methods have been exhausted and the physician feels any further efforts would be ineffective. Additionally it means that if a person were no longer able to get enough oxygen (or breathe out carbon dioxide effectively) the patient agrees to be intubated (get a breathing tube inserted and hooked up to a ventilator.) While variable religious, social, cultural influences play a role in deciding to be full code, there are certain populations where this is a rational decision regardless. For most young, healthy people, the possibility of returning to a meaningful baseline health is optimistic, thus being "full code" is reasonable. For example, in the setting of unexplained cardiac arrest in an otherwise healthy young patient would rightfully warrant full attempt for resuscitation and to identify the underlying cause. Likewise is the scenario of a healthy person who suffers a head injury after a motor vehicle accident, requiring intubation for airway protection.
2. DNR/DNI (Do Not Resuscitate, Do Not Intubate.) This is the code status most appropriate for those unlikely to have a positive outcome from a "Code Blue" or would not recover enough to get off a ventilator if they were to get a breathing tube. It is a reasonable code status for any patient who has a significant medical history such that aggressive therapies for cardiac arrest would result in significant organ and/or brain damage (should they have return of circulation). I think of very elderly patients (even if they are in general good health), and anyone with an end-stage disease regardless of age (metastatic cancer, severe COPD, severe heart failure, just to list a few common diseases.) Allowing patients to die naturally in a dignified state may be the best medical decision you could make.
-- Two important misconceptions regarding DNR/DNI:
This doesn't mean the person is no longer medically treated. They are still managed to optimize their health otherwise-- heart failure patients stay on their medications, cancer patients may still get radiation and chemotherapy, elderly otherwise healthy patients still get admitted and treated for, say, pneumonia. It is the aggressive and futile methods that are withheld, understanding their lack of significant benefit for this populations.
It is illogical to be only half of this code status. For example, patients occasionally tell me they'd like to be resuscitated but not intubated. Unfortunately in an emergent setting of cardiac arrest, it is a waste of resources to do chest compressions, inject with drugs to get your heart to work, all the while not being able to supply oxygen or protect your airway effectively. When having these discussions with your loved ones, be clear that both statuses are required for sensible care.
3. DNR/DNI/DNH (as above, with the addition of "Do Not Hospitalize.") This status is meant for those individuals preparing for end of life. This is the decision that if the person were to become ill, even if not cardiac arrest or respiratory failure, medical care would not be sought. The person would remain at home (or nursing home) with the intent to die peacefully and comfortably. This scenario is applicable based on personal preferences of the patient and family, even in the setting of someone without an end-stage disease.
4. DNR/DNI/DNH/Hospice (or simply, Hospice.) When the benefit of even simple medical therapy is very low and when aggressive therapies would only bring harm to a patient, the decision may be made for comfort measures only. Hospice is a wonderful system of medical care specifically aimed at making the patient comfortable without an intent to cure. This is an appropriate decision for any patient with life expectancy less than 6 months (though patients often live beyond this time frame.) Being under the umbrella of hospice brings a myriad of benefits that allow a patient to live wonderfully in their final months, but it is the acceptance of withdrawing any medications or interventions that aim to cure disease. There are a number of medical scenarios that would qualify for hospice, and most physicians will make it clear when this is appropriate for a loved one.
I encourage you all to have these slightly uncomfortable discussions with your loved ones now while they are otherwise healthy and not anticipating a tragedy. Tease out different scenarios regarding exceptions (if you suffered a severe stroke and could no longer interact with your family, would you still want to be full code?) and withdrawal of care (for example, in the setting of end stage lung disease, would you really want to remain on the ventilator.. forever?) If a family member's medical condition is worsening, readdress their goals of care. Having clear discussions and voicing of choices prevents heartbreak in the future. I've seen families ripped apart because of differing opinions in these scenarios, all the while the patient's voice goes unheard.
More importantly, if you find yourself in a difficult decision-making scenario for a loved one, remember you are speaking FOR them. It is not what YOU want, but rather voicing their decision if they were able to look at themselves in a certain debilitated condition. There should NEVER be guilt in these cases. Take care of yourselves and your loved ones <3 <3