“People think death is the hardest part of my job, but it’s actually being forced to keep someone’s body alive far past the possibility for any meaningful recovery. There are worse fates than death.”

– Anonymous RN

As an ER/Trauma RN, I have experienced death more times than I can count or care to recall. Dying is a natural process that, for obvious reasons, scares many people to their core. One of the most harrowing realizations I have come to while working as a nurse is the fact that utilizing medical technology and skills to “save” someone does not mean that they are going to go on to live enjoyable lives. Movies and TV shows lead people to think that if their heart stops, someone does CPR on them for a few minutes and then they wake up talking and thankful to be alive without any repercussions. This is the polar opposite of what actually happens 9 times out of 10.

CPR is brutal and very few people survive who require CPR. Most of the time a lack of oxygen to the brain during the time their heart was not beating leads to profound neurological deficits. Many people who are intubated during CPR never come off a ventilator. Studies have shown that if people knew the reality of their prognosis and exactly what happens during and after CPR, they would want to be a DNR. But what do all these terms mean? Let me walk you through the end of life process in realistic terms and show you the steps to take to ensure your wishes are followed when your time comes.

*Because I currently live and work in Illinois, this post will be specific to Illinois law. Laws vary significantly state to state and can be readily found online.*

DNR

What is a DNR?

A DNR is a “Do not resuscitate” order from a medical doctor instructing healthcare providers to not perform CPR on a person in the event that their heart stops. This is a legally binding form that is supplied by the Illinois Department of Public Health and must be signed by:

– The patient or a legal guardian
– A physician
– A witness (18 years old or older)

First and foremost, a DNR order does NOT mean do not TREAT. Everyone with a DNR order will receive the same treatment as anyone else up until they require CPR. A DNR is available to anyone regardless of age and may be requested by the parents of a minor who has a chronic or terminal illness. The current DNR form in Illinois has 3 choices: full treatment, selective treatment, or comfort-focused treatment. It also currently has an area that addressed medically administered nutrition. Here is a copy of the form so you can see exactly what each level of treatment entails:

How do we know you’re a DNR?

Per Illinois law, the original document OR a photocopy of this IDPH form are accepted. There are no official medical bracelets to wear that guarantee your DNR order is followed in the state of Illinois. (Some states do have medical bracelets that can take the place of a DNR form.) Similarly, tattoos of “DNR” on people’s bodies are also not necessarily honored but can be taken into consideration by EMS providers. This is a super grey area and best judgement needs to be used.

What happens when EMS is called for a code?

When EMS arrives at a code situation at someone’s home, they need a fully SIGNED copy of the DNR form in order to not initiate life-saving protocols. If a patient is elderly and lives alone, their DNR form needs to be kept somewhere EMS personnel are likely to see it right away. This can even be posted on the front door in a brightly colored envelope to maintain privacy while also making sure EMS sees it. If the person is still alive, EMS will get to work attempting to help in any way they can short of starting CPR. The DNR form must be brought with the patient to the emergency department in case their condition deteriorates and it must be enacted.

Who has to honor a DNR?

Hospitals, nursing homes and EMS all honor a signed DNR form from IDPH. As healthcare workers, we want to help everyone so to stand by and do nothing when a DNR patient codes can be confusing and upsetting. Just know that you are being a huge part of fulfilling their last wish and granting them the peaceful death that they wanted.

Is there an expiration date?

No, DNR forms do not expire unless they are revoked by the person who originally signed it or their legal representation.

What if I want to revoke my DNR?

This can be done at any time by verbal request while in the hospital or by writing VOID in large lettering across the original form and destroying all copies. A person must be deemed mentally competent to be able to do this legally.

Can I add specifics into my DNR?

Yes! There is a section entitled “Optional Additional Orders” where you can add in things like wanting the DNR held (aka not followed) in the event of an accident (motor vehicle crash, choking incident, etc.) or during surgery.

Can family overturn a DNR in the heat of the moment?

The short answer to this is no, they cannot. A DNR can be overturned if the family can immediately and readily prove that the patient had faulty information when they signed the DNR, misunderstood the information given or would have changed their minds based on new developments in their medical condition. This is a very grey area and an ethics committee should surely be utilized in the aftermath. In the heat of the moment, the best thing to do is make sure the family understands the prognosis of the situation and above all else, make sure the patient’s best interest is held at the highest standard.

CPR

What is CPR?

CPR stands for “cardiopulmonary resuscitation” and includes vigorous chest compressions as well as mouth-to-mouth rescue breathing in an out-of-hospital setting. If EMS is called or someone is in a hospital setting when they require CPR, more advanced methods will be taken. These can include:

• Intubation: having a tube inserted into the throat as an airway
• Mechanical Ventilation: being hooked up to a machine that breathes for you
• Medications: these are administered through and IV or an IO (a device drilled into a bone that acts as an IV if medical staff is unable to get an IV); these medications are meant to increase your heart rate, increase your blood pressure and increase your overall perfusion
• Cardioversion: electrically shocking someone to hopefully change their heart rhythm (*Of note: this cannot be done on someone who is in asystole or has “flat-lined” as movies/TV would make us believe)

How well does CPR work?

This is where I need you to really listen up because the media has painted CPR in such an unrealistic light that I want to make sure you understand these facts from the American Heart Association:

88% of cardiac arrests happen at home

But, you guys, SURVIVAL DOES NOT EQUAL QUALITY OF LIFE!! All that this statistic means is that 8% of cardiac arrests that happened outside of the hospital regained a heart beat. This does NOT mean they woke up. This does not mean they didn’t suffer such severe brain damage from being without oxygen that they never spoke or opened their eyes again. Of this small group of people, many of them are never able to be weened off of a ventilator and, therefore, have a tube down their throat or a surgically placed tracheostomy for the rest of their lives. They are often bed-bound for the rest of their lives. They do not regain a pulse and wake up like in the movies; it just does not happen unless extremely specific circumstances are in place and, even then, it is very, very rare. Please understand this.

What about if a code happens in the hospital?

Of the people who “code” or have their heart stop while in the hospital, 40% survive initially but only 10-20% live to be discharged home. And remember–survival does not mean quality life. Survival is simply a palpable pulse and discharged can be to a long-term care facility, not their actual home.

Does CPR hurt the recipient?

One thing that you don’t learn in nursing school that you quickly find out the first time you do CPR, is you can feel ribs breaking underneath your hands as you do chest compressions. It is the most sickening and uncomfortable feeling in the world and it happens almost every time CPR is given. A study from 2017 that I came across broke down injuries associated with CPR even further. Of all the people studied who received CPR:

• 63% had a sternal fracture
• 73% had broken ribs (usually multiple ribs)
• 41% had intrathoracic injuries such as lung and heart contusions and lacerations
• 18.7% had liver and/or spleen injuries

This study reported that most of the injuries found were considered significant and some could have potentially been lethal if the CPR had been successful.

Is cardiac arrest the same as a heart attack?

NO NO NO and NO!!!! These are not at all the same thing and, honestly, it makes me a little bonkers when people use them interchangeably. So let me help you understand: If you need to fix your toilet, you don’t call an electrician and if you need to fix your circuit breaker, you don’t call a plumber. Similarly, your heart has two entirely different systems that are working simultaneously to keep you alive.

Cardiac arrest is an ELECTRIC issue; you heart has stopped beating due to a lack or a disruption of impulses being sent to your heart to make it beat in a way that will adequately perfuse your body. A HEART ATTACK is an issue with your PLUMBING system. This is a disruption or blockage within the heart stopping blood from flowing through all the vessels it needs to and, therefore, causing part of your heart not receiving blood flow to die. A heart attack doesn’t mean you are dead but is can lead to cardiac arrest. If you are having a heart attack you need the cath lab to restore blood flow to your heart ASAP…if you are experiencing cardiac arrest you need CPR ASAP.

Family at the Bedside During a Code

Inviting family members to be at the bedside during a code seems like a daunting situation for many healthcare workers. Some don’t like it at all, but guess what! The code happening has little to nothing to do with the healthcare team’s feelings and comfort level at the time it is happening: focus should always be on the patient primarily and the family second. We will take care of each other later. Nothing makes me more angry than a doctor running a code and refusing to let family in the room when they want to be. It isn’t fair and, frankly, it isn’t their decision to make.

Many studies have been done showing a massive benefit to having family at the bedside during codes, especially towards the end when efforts are indicating they will be futile. SIDE NOTE: THIS IS NOT A TIME FOR CHILDREN TO BE AT THE BEDSIDE. Studies show that bringing family to the bedside during a code will:

• Allow families to see that everything is being done to save their loved one. This will help alleviate the nagging though that often comes after death: could something more have been done to save them?
• It allows family to see their loved one in somewhat of a “transition stage”. It is very difficult to psychologically accept death when the last time you saw your loved one they were very much alive and walking, talking, joking, laughing, etc. with you and now they are simply gone, dead, never to talk back to you again. Studies have shown seeing the dying process, however brief, aids in the grieving process and helps families struggle less in the aftermath of their loss.
• It helps to humanize the patient for the healthcare team working on them. Healthcare workers do have feelings (even when we claim not to) and it is tolling to accept death on a regular basis. It is less upsetting in the long run to humanize these losses instead of simply brushing them off as another patient. Dealing with small feelings when they happen as opposed to letting small feelings build up over months and years helps avoid burnout and compassion fatigue.

Will all that being said, not all code situations are ideal to bring in family members simply because it isn’t safe. There are concrete rules set up that must be followed when family is allowed into the room in order to maintain order, safety and continue to provide the patient with the best care possible. These rules are:

• Family cannot interfere with staff’s efforts and must stand where they are told and only touch what they are told they can. Sometimes sterile fields are in place, sharp objects are out or electrical shocks are being administered and it is simply not safe for family to be in certain spots or touching certain things.
• Someone from the hospital staff MUST be with the family members at ALL TIMES during their time in the room while CPR is underway. They are there to provide comfort as well as explanations. The doctor and staff actively working on the patient will likely not be able to talk to the family and walk them through what they are doing. There needs to be a designated staff member for this.
• No family member who is intoxicated, overly aggressive or feeling faint should be allowed in the room. These people are liabilities and will distract the care team from taking care of the patient.
• Absolutely no videos or photographs will be taken by family during their time in the room while CPR is in progress. This is also a huge liability as well as criminal– it is illegal to record or photograph healthcare workers without their consent in the state of Illinois.

Facts About Dying:

You can still have an open casket funeral even while being an organ donor. You can even donate your eyes and still do this!

Most people, no matter how elderly, are still eligible to donate SOMETHING, usually tissue. Tissue from organ donations are often used for skin grafts after severe burns. In fact, after the volcano that recently erupted in New Zealand, the USA was asked to donate as much donor tissue as possible due to a mass amount of people sustaining terrible burns. It doesn’t seem as grand as donating a heart, but it is still something incredibly meaningful to whoever needed it.

Have you ever heard the phrase “you’re not dead unless you’re warm and dead”? This means that patients who are severely hypothermic cannot be pronounced dead until they are warmed to a certain temperature and still do not show any signs of life and are not responding to life-saving efforts. Hypothermia is technically considered a body temperature under 95 degrees Fahrenheit, however, bodies only have to achieve a core temperature of 89.6 degrees Fahrenheit to be pronounced legally dead.

Medical staff are trained to not use ambiguous words like “passed away”, “went to sleep”, “passed on”, or “didn’t make it” to tell families that their loved one has died. We are suppose to use the word “died” which has a universal and obvious meaning. This isn’t to come off as uncaring or crass; it is to make sure the family does not misunderstand exactly what happened to their loved one.

Medical staff is not allowed to remove anything from the patient’s body until they are cleared by the coroner. This means leaving in all IVs and IOs, airways, chest tubes, Foley catheters, etc. until the coroner says it is okay to remove them. This often upsets families, but usually a gentle explanation and heartfelt apology can avoid the situation from escalating.

Hearing is thought to be the last sense to go during the dying process so WATCH WHAT YOU SAY. Healthcare workers who deal with death often can grow to be jaded and calloused; no matter what you are thinking, keep your comments to yourself and act like the patient can still hear you. On the other hand, encourage family at the bedside to talk to the patient and let them know this fact. It may bring some comfort to think their loved one can hear their words of comfort and last goodbyes and I-love-you’s.

Overall, anything dealing with death and end-of-life matters will be a sensitive subject and should be handled with grace. If you are in the season of life where you are figuring out what you’d like to happen in the event of your own code, I hope this information helps you decide what you would like to have done. Knowing all the information can be peaceful and help bring comfort and a sense of control when thinking of such an overwhelming subject. If you are a healthcare worker dealing with code situations regularly (or not so regularly), I hope this information helps you understand the laws and best practice ways to make what can be a very stressful situation much more manageable. As always, please post questions in the comments section!

Well-planned Travels <3