"I advise you to rip up the DNR form in front of them."
I once shadowed a palliative care physician colleague (read Post 1: What Exactly Does a Palliative Care Specialist Do?) for a patient visit. The patient said, "I don't want CPR. I don't want them pounding on my heart. What kind of half-life would I come back to?" (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ).
She then asked, "If I sign this Do Not Resuscitate form, they'll still treat me, right? I'll still be taken to the hospital if I get sick, right?" (read Post 6: Who Do I Tell If My Mom Does Not Want Resuscitation Attempts? - A Three Step Process).
Most colleagues would have reassured her and said, "Yes, you'll still get the same treatment as anyone else. You still get medical care. You can still get ICU level of care. This form only kicks in once a person's heart stops pumping blood and they've technically died."
My colleague replied with some passion, "That's how the form is supposed to work, and it does most of the time. However ignorance exists, and people make assumptions. If you or your family member ever encounter a paramedic, nurse, or doctor who are not giving you the level of care you want and who are not REALLY listening to you, I advise you to rip up the DNR form in front of them. Do Not Resuscitate does not mean do not treat. Unfortunately, you might encounter a healthcare provider confusing the two."
Most healthcare providers know that a DNR order in the hospital or an Out of Hospital DNR form at home only refers to a person's wishes for no CPR (cardiopulmonary resuscitation) attempts after cardiopulmonary arrest (that is, after the heart stops beating and is no longer pumping blood throughout the body and to the brain).
Occasionally I meet individual healthcare providers who have misconceptions or have learned erroneous definitions from their supervisor, mentor, or colleague. The Out of Hospital DNR form, which looks different for every state, and the actual meaning of the DNR order is not usually formally taught in school. They are usually learned on the job. Sometimes individual healthcare providers understand the definition of DNR, and yet they also make assumptions regarding the entirety of a person's wishes for medical care based on a single DNR order.
This is when a person or their family member has to speak up and communicate the type of medical care they would want. A person with an Out of Hospital DNR form at home may not want to go to the hospital for a sudden severe illness and instead choose to remain at home with family and focus on being comfortable with hospice support at home (read Post 2: Five Major Ways Palliative Care Differs from Hospice).
Or, a person with an Out of Hospital DNR form at home may want to go to the hospital for a sudden severe illness and undergo as many tests, procedures, and labwork necessary to determine the diagnosis and receive whatever treatment is necessary to manage the illness, including ICU (intensive care unit) level of care with life support medications, dialysis, feeding tube, and even temporary intubation (that is, breathing tube) for a respiratory illness such as severe pneumonia.
The purpose of any medical treatment and advance directive is to help a person get the "right" medical care to help them realistically achieve what is most important to them (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2). Most times a conversation with the medical team is enough to clear misconceptions and clarify assumptions.
However, if an Out of Hospital DNR form at home is preventing a person from obtaining the type of medical care they are looking for, that may be a time to consider hiding the Out of Hospital DNR form (and then re-posting the DNR form on the refrigerator door or someplace visible for paramedics to see after the situation has passed). If a DNR order in the hospital is preventing a person from receiving the type of care they are willing to undergo for treatment, that may be a time to consider revoking DNR wishes (and then expressing DNR wishes again after the situation has passed).
When would a person consider tearing up their Out of Hospital DNR form?
1. If paramedics and other first responders are not providing the level of care you or your family member want at home
Patients have told me about unwanted resuscitation attempts, either on themselves or on family members, because they did not have an Out of Hospital DNR form at home. Occasionally, patients have also described instances when the Out of Hospital DNR form did not help them as intended.
Ben was at work when he received a phone call. "Hello? This is Ben." The man on the other line introduced himself as a first responder at his mother's home. "It looks like a neighbor called 911 when your mother was sitting on the doorstep confused. We see a Do Not Resuscitate form on the refrigerator. Do you want us to keep her at home?"
"No, no! If she's confused or sick, she needs to be looked at. Please take her to the ER! I'll get there right after work, " Ben replied with alarm and confusion. "Why wouldn't you take her to the ER? Her heart's still beating and she's alive. She needs care!"
"I wanted to check," the paramedic replied, "because she's a DNR."
Ben was so shaken by this experience that the next time he visited his mom's house, he removed the Out of Hospital DNR form from his mom's refrigerator door. "I know that may have been a one time experience with a paramedic who doesn't know what the DNR form means, but it could happen again. I want to honor my mom's wishes, but I'm going to keep the DNR form hidden for now."
2. If emergency room physicians and other healthcare providers are not providing the level of care you or your family want in the hospital
"I saw the Out of Hospital DNR form you brought in. Your mom doesn't need to go to the ICU. She should go to the medicine floor. They can give her antibiotics and keep her comfortable there," the ICU nurse practitioner told Patricia in the emergency room.
Patricia paused and replied, "The emergency room physician told me she would need ICU level of care because she needs so much help breathing. They said she might even need to be intubated. They said probably she would be able to get off the ventilator after a couple days of antibiotics to treat her pneumonia. What has changed?"
The nurse practitioner held up a piece of paper and pointing to it, replied, "I saw the Out of Hospital DNR form. It says your mom wouldn't want any of that."
"That's not at all what my mom meant when she signed that. The way we were explained the Out of Hospital DNR form works is that my mom would get the same intensive medical care she would get regardless of that form. It's only if her heart stops and she dies despite the intensive care, that she would then not want resuscitation attempts. It wouldn't make sense at that point."
"Let me discuss this with my team," the nurse practitioner started to turn back towards the doorway.
Patricia snapped, "You know what? Let me make it easier for you. Give me the form please." The nurse practitioner handed the Out of Hospital DNR form to Patricia. Patricia held the form up to the nurse practitioner's face and tore the paper in half. "Okay, now please admit my mom."
Patricia knew she had multiple copies of the signed Out of Hospital DNR form at home. When she returned home, she left a copy on the refrigerator door for paramedics to see in case of emergencies. At the same time, she decided that if her mother ever needed to enter the hospital again, she would not bring a copy to the hospital. She decided she would withhold her mother's DNR wishes until she had spoken with the medical team personally and impressed upon them that her mother would want any intensive level of medical care necessary for medical treatment. She would then let them know that her mother would not want resuscitation attempts if her heart were to stop beating despite intensive medical treatments.
Many times CPR is attempted on people who have verbally expressed to their loved ones that they would not want CPR, however had not known to complete an Out of Hospital DNR form that would have converted their wishes to a doctor's order.
Occasionally a person might encounter a healthcare provider who has misconceptions about what the Out of Hospital DNR form is truly ordering or assumptions about the type of medical care a person would want based on a glance at this one form. The purpose of any medical treatment, procedure, or advance directive is to help a person obtain the medical care THEY want - not cookie cutter treatment - so if a medical treatment, procedure, or advance directive is doing the opposite, consider stopping it, foregoing it, letting it go, or reversing it (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2).
If a healthcare provider's ignorance, assumptions, or bias towards a person with a DNR order is preventing that person from obtaining the level of medical care they want (for example, life support medications in the ICU, short term breathing mask, short term ventilator attachment, dialysis, electric shocks to the chest to reverse certain fast heart rhythms, pacemaker placement), they should communicate their goals and expectations with the healthcare provider (read Post 60: What Does a DNR Do if Only My Lungs Are in Trouble?) . Usually a frank conversation is enough to clear misunderstanding.
Just as a person who is frail may need a loved one to strongly advocate AGAINST medical treatment that is excessively invasive and burdensome and not in line with the comfort and rest the person wants, so a person who WOULD want aggressive medical treatments, who views these treatments more beneficial than burdensome, may need a strong advocate as well.
A person must constantly communicate the type of medical care they wish to receive for a severe illness or medical crisis. The purpose of the Out of Hospital DNR form is to take effect after a person's heart has stopped beating. Their life prior to this moment is open to interpretation.