Navigating with Nurse Derrick

This isn’t just for those with constant illnesses. This is for anyone looking to help their family when the unexpected happens. Due to the details, this is a drier post. Consider it more a tool than a story to read. But it is just in time for your New Year’s resolutions. Get your advanced directives figured out in 2025. Do your family this favor. Don’t put this off. I know it’s not easy to face, but if you address this now it helps your loved ones later when they are faced with impossible decisions for your care. It’s a way for you to be there for them when they’re lost trying to be there for you.

• Key points of the overall post
• Basic advanced directs
• More specifics regarding chest compressions
• More specifics regarding shocks and “chem-codes”
• More specifics regarding the ventilator and feeding tubes

Key points of this post:

• Make sure your family knows in writing who will make medical decisions for you if and when you cannot make them yourself. Pick one person as primary and a second choice in case your first choice cannot be there for you.
• Talk to those family members and get what you want in writing. (I like The Five Wishes.) Give both of them copies and always bring a copy with you to the hospital. (There may be a wallet insert as well.)
• Perspective: Compressions are not life saving. They are used if your heart has stopped. So if you’ve died CPR can bring your heart back to beating. But if you’ve already done the hard part of dying, do you want to have to do it again? Are you at a point in your life where you want to go through the dying process more than once?
• More considerations like “chem-code” or shocks. See below for more info.
• Ventilators – do you want the machine breathing for you? For how long? How about a breathing tube surgically placed into your neck? How about a feeding tube surgically placed through your belly?

THE BASICS

There are legal documents that communicate your wishes for medical care in case you cannot communicate those wishes on your own. The two most common types are the first two below. You can easily find more information on how to set them up with a simple google search. The third one below is what my wife and I used.

1. A Living Will
   • This tells providers what you want and don’t want for common procedures and treatments. Your state should offer information about this.
2. Durable Power of Attorney for Healthcare
   • This is a legal document that names your healthcare surrogate. A healthcare surrogate is a loved one or trusted friend or colleague of your choosing whom you trust will fulfill your wishes when you cannot. Basically, if you can’t make your own medical decisions, you want this person to do it for you. DO NOT ASSUME YOUR LOVED ONES ALREADY KNOW YOUR WISHES. Talk with them. Go through scenarios. Write down your wishes for them.
3. The Five Wishes advanced planning guide
   • This is what my wife and I used. It looks to be legally accepted in 42 states. Page 3 of the document lists the states that accept it. Even if your state doesn’t, it is a great resource to address the inevitable and set your loved one up for the smoothest and least complicated experience when your time comes. This document addresses the personal, emotional, and spiritual needs as well as the medical. It presents various scenarios for you to consider. 

MORE SPECIFICS

1. Do you want chest compressions?
   • A common misconception is that chest compressions keep you from dying. They do not. They are only used if your heart has stopped being a good enough pump to support life. That is to say, they are only used if you’ve already died. (If you’re curious about what is considered a success in CPR, see the blog post Code Blue and jump down to the fourth paragraph from the bottom that starts with, “A “successful” code blue…”. )
     When I speak with patients about the choice of chest compressions or not, I try to make three things clear.
     • Death is not an avoidable thing. We all pass on. Always have, always will. If compressions bring you back, how much longer before you will have to go through the process again?
     • I suspect the hardest part about dying is the moment you are aware of it happening. You may not be processing, “this is death,” as much as simply a terrible feeling of fear that something is very wrong. If your heart has stopped, are you sure you want it restarted? You’ve already experienced the hard part of dying. Are you sure you want to go through it again? 
     • Chest compressions are a violent thing to do to the body. Your ribs will be broken when they finish compressions. Is that a pain you want to wake up with?
2. Do you want to be shocked or “chem-coded?”
   • Despite what you’ve seen on TV – one does not shock a stopped heart. It doesn’t restart like that. There are heart rhythms that can be shocked to avoid a life threatening situation. That is to say that you’re still alert while the shockable rhythm is happening. Then there are shockable heart rhythms where the heart is no longer a good enough pump to support life. If that’s happening, it’s likely you’ll have entered an unconscious state because your brain will have stopped getting adequate blood flow, and your body will have started the dying process. In this scenario, do you want to be shocked and go through the process again someday, or do you want to let nature run its course now? 
   • A chem-code is like a code blue (the heart has stopped being a good enough pump to support life) without the compressions. There are meds that can convert life-threatening heart rhythms. Are you okay with the administration of these medications if you have already decided not to have chest compressions done? 
3. Do you want to be on a ventilator?
   • This means there will be a machine breathing on your behalf. If managed well it can keep you well oxygenated. If managed poorly it can cause damage to your lungs. While on the ventilator, there will be a tube that goes down past your throat and sits a few centimeters above where your lung passages start to divide (the carina). You will likely be restrained to the bed and mildly sedated. Many patients have fight or flight responses when waking to the ventilator in their throat and end up hurting themselves while thrashing on the bed to get it out. Hence, the need for restraints. Imagine waking up strapped to a bed in a foreign environment with a tube going down your throat. It’s a terrible thing to see. Other patients with more awareness suffer the discomfort with anxiety but control – this was rare to see. Regardless of which type you are – will it be worth the recovery? Speak with your family about your wishes. *Note: I don’t believe you can say “yes” to compressions but “no” to the ventilator. If compressions are needed, they will need to protect your airway and the tube used for the ventilator is how they will do that. You can, however, say yes to the ventilator but no to compressions. 
   • How long are you okay with being on a ventilator?
     • In the ICU, I usually saw escalation in care around the 14 day mark. The escalation is when we ask the family to choose a “comfort wean” or a tracheostomy tube and a percutaneous endoscopic gastrostomy (PEG) tube. The tracheostomy tube gets surgically put into the throat through the front of the neck to bypass the mouth. It will then be reconnected to the mechanical ventilator to continue mechanical ventilation. Over time, if your status improves, it may be able to be removed and the holes closed up. The PEG tube gets surgically placed through the abdomen into the stomach. Nutrition will be pumped into the stomach through the PEG tube so the body continues to get what it needs for survival. It can also be reversed over time with an improved status. 
       The first option presented in that paragraph was a comfort wean. A comfort wean is started if the family chooses not to continue curative measures and those invasive escalations in care. In a comfort wean we remove the breathing tube and allow the patient to attempt to breathe on their own until they pass. It is where curative measures stop and comfort care begins. Please read my blog post on comfort care to learn more. It’s got a good story to go with it. 

Please speak with those close to you about your wishes. If you think you’ll be someone else’s healthcare decision maker – do both of yourselves a favor and start the conversations with them now. Write down what you come up with. I recommend sitting with a journal, meditating or praying about this – it’s tough stuff, and these are not decisions to be made lightly.

Thank you for reading. Did I miss anything? Do you have any suggestions or testimonials? Did this bring up any stories you want to share? Please reach out to me through the contact page if you feel like I missed anything, if this blog has helped you in anyway, or if this brought up a story you’d like to share.