This is a very important post that I would like you to take some time to sit down, read, consider and share. It is going to discuss some of the aspects of “code status” and what that means. It also includes a very delicious recipe that combines that delicious combination of chocolate and peanut butter and adds a twist to it with the rum. Like always, it is packed with protein and fiber. It can also be clean and vegan depending on the ingredients you use.
This post may be a little heavy, but hear me out because it is important. I want to take some time to briefly discuss some aspects of end of life care. There are many important parts to consider when discussing end of life care and goals, but this post will focus mainly on making level of care, or code status decisions. Don’t worry, I’ll delve more into the terminology further along.
Why do I want to talk about this? Mainly because it isn’t discussed enough. End of life is such a taboo topic here in the United States and this is a shame. Why am I talking about it now? Well, there are a few reasons.
- As you know, I was recently working in the ICU and came face to face with this topic on a regular basis. Some shy away from this, but you know that I like my patients and their families to understand what is going on every step of the way and answer any and all questions to the best of my ability. Unfortunately, so much of why things happen can be unknown, which is difficult.
- This topic is not just relegated to the ICU. Unfortunately, tragic events happen all the time, without warning and to people of ALL ages.
- I just lost my grandmother.
I really wanted to write a post of this nature while in the ICU, but never got to it. It is a topic that I find to be sorely under-discussed, but desperately needs to be broached. In between, you’ll find the making in action of this delicious baked oatmeal recipe. Ok, deep breath, let’s get started.
If anything, please at least read the last paragraph, or two.
Level of care is primarily what I want to talk about in this post, as mentioned. Different hospitals may define each level differently, so I will discuss the various parts of some of these levels. The words “level of care” often mean “code status”. Full code means that if something happens and a patient’s heart stops, or they stop breathing, everything that can possibly be done to revive that patient will be done. The two main aspects to consider are CPR (chest compressions) and intubation (mechanical ventilation, a tube that goes down the trachea (wind-pipe)). Both of these can be life saving, but it is important to consider the PATIENT”S WISHES, illnesses they are fighting and goals/quality of life when making the decision of code status. This post is NOT saying that no one should be full code, but I want you to really consider all the implications code status can have and to really think about what you, or the patient wants and respect that decision. This is most important if you are making decision for a family member. I can’t tell you how many times I’ve seen family members insist of everything to be done when the patient clearly stated they did not want those things done when they were able to make their own decisions. It is truly heart-breaking to me.
CPR is initiated when no pulse is found. It uses a combination of chest compressions that work to pump blood to the rest of the body and mechanical ventilation (whether it be with a bag and mask, or by intubation) to help get air into the patient’s lungs. Depending on the heart rhythm, a person may be shocked with a defibrillator to help get the heart pumping on it’s own again. Various drugs/fluids/blood work are often used to assist in the code.
This is a life saving tool that works all the time, but it is brutal on the body. Ribs will be broken. If patient’s cannot maintain their blood pressure, fluids and drugs will be used to help bolster blood pressure and constrict blood vessels in order to help get blood to the vital internal organs. This means damage may happen to those places where blood is limited. Patients may go into respiratory (lung) failure and need to be intubated (if not already). Air can easily get into the stomach and cause nausea and vomiting during, or afterwards. If patients have a bleeding/clotting problem, or have weakened their blood vessels in some fashion then they may bleed where they should not. Finally, after best efforts, patients still may not make it. Or, they may make it, but not be responsive afterwards/changed in someway.
Intubation (tube down the windpipe to help the person breathe that is hooked up to a ventilator) is another aspect of level of care. Just because someone is intubated does not mean that they are going to get, or have gotten CPR. So it needs to be considered separately. Intubation is often reversible after the patient heals and gets better from whatever it was that led them to need help with breathing. Sometimes, patients are not strong enough to get off the vent. Those who have bad lung problems before being intubated, for example, are at risk of not being able to get off the ventilator. After a couple of weeks, a decision about a trach/peg (surgically created hole through the throat/feeding tube through the stomach wall) will need to be made. Do you want this? Does the patient want this? Consider the circumstances if you come face to face with this decision. Is it worthwhile to prolong life in this fashion? In some cases, the answer is yes, in others it honestly should be no. Talk with the doctors about the risks/benefits/quality of life/prognosis etc until you understand all aspects of this decision.
Given these distinctions, when asked about code status, primarily you are being asked about cpr and intubation. You are able to pick and choose, yes to both, yes to only one, no to both. Even if you choose no to both that doesn’t mean that nothing will be done if you code. There are further levels down. After this, the next step down includes techniques with fluids and medications. Or, you can choose for not even that to occur. There are many possibilities. It is important for people to understand what everything is and means.
Also, know that you are allowed to change your mind. Situations change all the time. Level of care can change to a higher, or lower level of care as new information/changes occur. This is what happened with my grandmother. She came in full code, unresponsive. However, she had made it clear previously that she never wanted a trach/peg, never wanted to live in a nursing home. She was close to 90 years old, had a bad heart, but had been fully independent prior to this event. She was not able to make decisions for herself since she was unresponsive, so those fell on our family. What she came in with could have been operated on, but her quality of life would have been drastically diminished even if she survived it. The decision was made against surgery. Why put her through all that? She led a long life and her quality of life would be poor either way. We also knew that she never wanted to be in a nursing home. Her body started failing and a code was imminent. However, given the circumstances, code status was changed actually all the way down to hospice before she coded. Comfort care was initiated and she died peacefully. Even though this was a hard decision, I very much think it was the right one. I’m thankful that the code status was changed before she went through all of the trauma of a code, especially since 1. it would have been unlikely to be successful 2. Her quality of life would not have been improved by it if she survived. Due to this, she was able to be comfortable and peaceful when her time came and I am so grateful for this.
True, she would probably be alive right now, but it was known that she would not want to live like that and her wishes were respected. That is most important.
Therefore, I really want you to take some time to consider this post. Consider what you want, regardless of your age, and most importantly LET PEOPLE KNOW.
Sit down and have discussions with yourself, your parents, and grandparents and ask what you/they want. Or, at least have them start thinking about what they want so that if, for some reason, they can no longer make decisions you will be able to follow through with their wishes. Ask what quality of life means to you/them. What you/they would be ok living with. This will help you make those decisions if needed. In terms of my grandmother, living in a nursing home was an absolute no for her. For others, nursing home would be just fine. However difficult it may be, it is most important to RESPECT the patient’s wishes.
Just because you would be ok with them just being alive in any sort of way does not mean that they would be ok with it.
Have you ever considered these questions?
Have you been in a situation where you needed to make these decisions?