Painful Consequences of an Unverified “Do Everything” Order

“Choices are the hinges of destiny.”   Pythagoras

The following blog explores the consequences when careful End-of-Life (EOL) planning goes awry, even when you or your representatives assume you have done everything right.  

You have all your EOL documents in place. You created an Advance Directive outlining your wishes in your Living Will and have chosen a strong, assertive surrogate to speak for you when you can’t speak for yourself. You have a signed Do Not Resuscitate (DNR) order. However, someone's carelessness or arrogance can cause your advance directive or DNR order to be ignored. What follows is that you are brought back to life and hooked up to machines, waiting to die. The following is a note I received from a family who lived through this nightmare. Except for minor editing, the words are theirs. 

Mom was a robust 81-year-old residing in a care home in rural New York.  Upon enrolling her, we gave them all the important paperwork from our attorney, clearly stating her last wishes and directives ordering that no resuscitation, devices, or drugs were to be used upon her descent from this life. The directives were placed in her file in the care home’s office, where all managers and aides had access to the information if needed. 

She’s a Full Cod; No, She’s Not

One night in May, Mom took a turn for the worse following a bout of pneumonia. We got a call from the home, and according to the aide on shift, Mom was incapacitated and unresponsive. The aide stated she called the paramedics to take her to our local ER. As I informed her that Mom was not to be resuscitated, the aide turned away from the phone and yelled to the paramedic, SHE’S A FULL CODE.  I screamed into the phone, NO, SHE’S NOT!  She is not to be kept alive against her will. The girl ignored me, her legal surrogate, and the directives of Mom’s living will.  The anguish and agony of our mother are indelible. This haphazard personal care home wrote on a chart that she was a full code without asking the family or going into the office to pull her file. The aide never checked her written documents, only the chart. 

Being Kept Alive Against Her Wishes 

What occurred after that is unthinkable. Mom was taken by ambulance, tied to the gurney, and given epinephrine to restart her heart. She was taken to the ER, where the EMT told them she was FULL CODE. They intubated her twice and gave her blood pressure medicines to force her heart to beat. Instead of calling us first to ask her code status, the ER nurse called AFTER they had applied all extreme measures. We stated NO! Don’t do anything else until we get there. When we entered the ER, our mother was strapped to a gurney, drugged, and on a respirator, being kept alive against her wishes. As soon as we showed them her documents, the hospital apologized profusely and removed the tubes and medications.

Mom couldn’t eat, drink, talk, move, make fixed expressions, or hold her urine or bowels. She was catatonic and lived in agony and misery for two weeks. We had hospice take the helm with comfort care until she finally passed.  She would have died quietly, peacefully, and with dignity on that given night in May if it weren’t for the incompetence and neglect of this inept care home. The rejection of the legal surrogate’s order and living will by the home led to a chain reaction that caused insurmountable pain to Mom and this family. When Mom woke up for a brief time, she looked at me as if to say, “Why am I here? How could you let this happen to me?” I have to live with this guilt for the rest of my life. 

What can we learn from this? 

President Ronald Reagan famously said Trust but Verify. The aide was just reading from Mom’s medical chart that listed FULL CODE, even though that was incorrect. When the family told her about the DNR, she should have verified the information; instead, she argued with them and gave the EMTs the wrong status.

When you visit a loved one in any care facility, always verify their code status in their chart at the front desk rather than trusting that the staff has entered it correctly. Often, if a patient is in and out of the hospital, their chart defaults to FULL CODE upon their return. It’s up to the patient or family to verify the status. Leave nothing to chance, and you or your loved one may have your wishes honored, preventing a living nightmare and horrible death. 

Bio: Althea P. Halchuck, EJD, CT, BCPA has more than 20 years of experience advocating for the vulnerable and dying. I assist aging seniors and their families, as well as those nearing the end of their lives. I offer support and guidance, including EOL counseling, advance care planning, professional healthcare POA surrogacy, end-of-life doula/vigil services, after-death resources, and bereavement.  Visit Althea's website at endingwellpatientadvocacy.com or call her at (978)-618-7150