Every patient admitted into the hospital is asked what their “code status” is. This term is derived from the word “code” which came from overhead paging there was an emergency. “Code Red” for most facilities means “Fire” and “Code Black” means “The emergency department is over occupancy”. “Code Blue” which we know from movies is when a person has stopped breathing or has no pulse. This transformed into using the call sign to get help into the actual thing itself. “There was a code last night.” does not mean we had a fire, but is universally understood to mean someone required emergent intervention by a specialized advanced critical care team to try and save their life. When we ask a patient for their, “Code status” we are asking about their desires or opinions regarding end-of-life care. Do you now, while you can still decide for yourself, want us to do everything we can to prolong your life regardless of what the quality of life may be after such an event? Or, should you suddenly pass should we let you go and not intervene? The decision is heavy and loaded, with lots of strings attached. “I don’t want to die, do everything.” “I don’t want to be on a machine, do nothing.” “My family needs me, do everything.” “My family can’t afford this, do nothing.” “I’m healthy and have a long life ahead of me, do everything.” “I’m unhealthy and need one more chance to make my life better, do everything.” “I’m confident in my God and if he wants me home then do nothing.” “I’m confident in my God and he gave you the training so do everything.” “I don’t want to be a burden, do nothing.” The reasons are as varied as there are patients, but the point is that the choice can be complex and deserves ample time to consider and give a confident answer.
For anyone who has yet to watch CPR in real life, it is probably the most barbaric and gruesome thing you will ever experience. When a person looses their pulse or stops breathing, their body almost instantaneously transforms into a shadow of their former self. The eyes are glassy like a doll’s eyes, the skin looks and feels different. They are cold, and not a single muscle moves. There is no tone, and they often times lose their bowels. The solution to a heart that isn’t beating is to augment the pumping action by compressing the chest to try and compress the heart and effectively “massage” the pump to get the blood moving again. How this works is a person stands over them and pushes on their chest with almost all their strength. The writhing of the body looks like a seizure in a rhythmic cadence. Everything shakes; the bed, the body, and the family watching. Often the ribs crack under the pressure. An important part of CPR is protecting the airway from vomit, which often involves putting a tube down the patient's throat. The whole process can happen in as little as 3 minutes, or in some instances where pulses come back and are then quickly lost repeatedly, a code can last an hour. The furiousness and hum of activity look more like apes attacking a predator then professionals saving a life. Come prepared when you see your loved one. Patients often look more like victims in modern medicine. It is alien, invasive, unapologetic, cold (seriously bring a sweater), in a complicated medical language that you won't understand, and in many ways the most inhuman experience you will ever have.
As a percentage, the ability to come back from a Code is largely dependent on how long you have been without a pulse and why you lost it in the first place. A heart attack with a huge coronary artery blockage will not often get their pulse back because the original problem hasn't been solved yet. Conversely, someone who was choking, or acidotic from DKA and intubated, can have the problem of hypoxia corrected and the heart will start beating again. A recent trend in the last 10-15 years is to include family, if available, in the room while the patient is receiving CPR. The goal is two-fold: help families understand what is involved in the life-saving process to see what we mean by “extreme measures”, and to allow the family to manage their grief and decide that the barbaric and in many cases futile exercise of CPR is no longer in the best interest of the patient. If you average every CPR that is conducted in the US, maybe 1/4th get a pulse again and only 2% with survive to hospital discharge. Many studies are taken from pre-hospital initiation of CPR, and I’m not clear on what the statistics are for in-hospital Code Blue events.
The point of this article is not to advocate for the end of CPR. The major issue with End of Life is what happens to the family in that event. Strained relationships, angry siblings and estranged relatives all come in and want to have an opinion of what to do with this person’s life. Often the decision is complicated by the government money that is given to family members who are caretakers; money that often the family lives on exclusively. If I could give one piece of advice it is this; The closer you are to death, the less you are your own. What you want, and what your wishes are for almost anything, quickly matters less and less as you lose your ability to demand them for yourself. Once the demanding for your needs rest’s on someone else’s shoulders you are no longer your own, and many patients become more of an icon than a person. Patients in the hospital who are intubated and very ill, or in nursing homes or dementia facilities, more closely resemble alters then people. There are decorations around them about their life that family brings in. Often people will talk to them and ask or demand that they get better or come back or not leave or hang on until whatever event is coming. This one-sided conversation sounds more like angry prayer then a tender conversation between family. Side conversations often start quickly amongst visitors and the patient in the room isn’t even a topic anymore. All this is fine, it’s part of the grief process and the community coming together to support each other through and after the End of Life event.
“The closer you are to death, the less you are your own”
Guilt is an incredibly powerful thing. We all think we will have another chance to deal with whatever we feel guilty about. But when the End of Life comes, the opportunity for that will end and can not be taken back. I have personally been in many situations where the family continues to demand and advocate for unreasonable treatment for a patient that has lost all quality of life. I do not believe these families are malicious. I believe they are using the hospital as a proxy for the care and attention that they could not give while the patient was alive. It is common enough for the family to demand someone else to add a feeding tube, intubate them, put them in the ICU, try continuous dialysis, try experimental or off-label medications…. Try anything! We as health care workers are asked to try the impossible of healing an impossibly failed body in place of that family members unwillingness to heal a relationship. Instead of putting on your cape and being the hero of your own story, standing in the difficult chasm of the unknown to heal and reconcile; you instead stand irate in the hallway because the inevitable we are all facing you are now not willing to accept.
I had a patient who was “Coded” in his home and intubated, and brought to the hospital where he was brought back. In the ICU he woke up and was extubated. At this time the patient was furious because he had explicitly determined that he never wanted to be intubated. He even had a legal DNR. But when he coded at home, the family told the ambulance to do everything, so they did. Now in the hospital, the pt wants to be a DNR, but the son does not. The son is not willing to let his 90-year-old father die. So when the patient coded again, the son put extreme pressure on the staff and the patient was intubated again. You might be trying to work out the legal ramifications as you read, and those are far too complex for this conversation. The point I want to make is to reiterate what I said before, “The closer you are to death, the less you are your own.”
Know your wishes for yourself and take the time to make those known as clearly as possible to the family. Get it in writing if you can. Firstly, and most importantly; do not take for granted the few remaining years you have to do the hard work of being a great person. Begin immediately clearing out all the skeletons in your closet. Make amends, apologize, and reconcile like it’s the end of the world. There is no need to fear the end if you start with the end in mind. Don’t allow what is guaranteed for all to surprise you. Instead, seek to be surprised by how wonderful life is when you have strong and healthy relationships.
Check out Dr. Zubin Damania. Known as "Zdogg M.D", he has created a series of interesting videos and musical parodies that poke at some of the issues medical practitioners have with current medical bureaucracy and widespread public misconceptions. This video, a parody of Eminem and Rihanna's "Love the Way You Lie", Zdogg calls, "Aint The Way to Die". His goal with this project, and mine to share this blog, is to advance the conversation about end-of-life decisions.
http://zdoggmd.com/aint-the-way-to-die/