I grew up understanding the concept of separation of church and state, and as I grew up in the medical profession I soon learned about the concept of separation of patient and family. As a young nurse in the Emergency Department I was shocked when a full arrest came through the ambulance doors and the wife of 60 years was rushed into a corner of the waiting room while she
waited for someone to update her on his condition. I worked with one physician who had absolutely no interest in talking to the family so when he was working I became the bearer of bad news. I always felt it was so sterile and inappropriate to have the one person who cared the most about the just another “full arrest” on the gurney in the other room, sitting in a corner, often times, all alone.
The general wisdom at that time was to give periodic updates where you “primed the pump” so to speak. We learned to use phrases that were practically memorized, “We are doing everything we can for them right now, they have the very best care and resources working on them, he hasn’t responded to our treatments so far, but we are continuing to try, we are hoping the next round of medications will stimulate his heart etc.” You will notice the complete and absolute absence of the word “dead” but more importantly no mention of “what would they have wanted in this situation, or have you talked about resuscitation efforts with your loved one?” Sometimes, even after we had stopped resuscitative efforts, we would go out to the waiting room and offer further information indicating we were still working on them. This was all designed to give them time to accept what was often the inevitable. The folly in this is the actual belief that waiting another 10 minutes to tell them their loved one is dead would ease them into this shocking news. There we go again, thinking as medical professionals we could affect and or control human emotions to the most devastating news they would ever receive. Eventually we would inform them that our efforts were unsuccessful (without mentioning what those efforts were) and inform them their loved one had _______fill in the blank with whatever word makes you feel better. Again, we felt we could soften the blow by using more acceptable terms including “passed away, failed to respond.” As I write this I am astounded at how inappropriate, archaic and delusional our thought processes were. We may have tried to find a quiet place to talk to the family but often we were forced to go through this whole dance in the corner of the emergency room waiting room.
What happened next was very team specific – should we let them in the room to see the body? The prevailing thought was that it would probably be best to wait to see them in the more controlled setting of the mortuary, especially if they were a coroner’s case and we were required to leave all the medical devices in place, the IVs, the arterial lines, the endotracheal tubes etc. This practice was severely challenged one night as a young adult male was brought in by paramedics to the ER. He was sitting behind the driver of a motorcycle when a sudden stop sent him flying onto the car in front of them and his neck was sliced open down to his sternum from the sharp edged rain gutter that used to adorn cars. His eyes were open, his mouth was open while his tongue had been cut in half by his teeth. It was shocking for all of us to see.
A few hours later, a woman arrived indicating she had heard that her son may have possibly been brought in from a motorcycle accident. We finally established that the John Doe in the back room was in fact her son. I showed her his identification we had found in his wallet and she was stoic. I explained there was significant trauma involved and that it would be best to see him at the mortuary. She left. She returned. She left, and she returned three more times, always with
essentially the same dialogue. Finally, she implored that she needed to see him, because “I just can’t believe it’s really him and that he’s really dead.” Silence. I asked for a few moments and did my best to cover up the gaping holes in his neck and chest. I had unsuccessfully tried to close his eyes earlier. I prepared her for what she was about to see, and took her back to be with her son. She wept, instinctively my arm was around her. She whispered “it really is him. Thank you.” She survived, and had taught me, a young nurse, a most valuable lesson. I really didn’t know what was best for her.
Gratefully institutions began exploring the presence of family members during resuscitation and procedures, especially in the pediatric population that eventually spread to adult patients. The literature is replete with favorable and studied rationale behind this practice, despite some practitioners still swimming against the tide. With this newly acquired enlightenment many practices started going by the wayside including strict limited visiting hours, age restrictions on visitors, allowing more than 2 people in the room at the same time and forbidding anything that resembled or tasted like home into the hospital.
I arrived at a small community hospital in Orange County, California to transport a 64 year-old male patient with a dissecting thoracic aortic aneurysm. The helicopter flight was only 12 minutes, but the preparation and loading process would take significantly longer. His blood pressure was dropping quickly as the dissection extended. Pharmacological interventions to reduce the pressure and drop the heart rate had proven ineffective. As is often the case, the staff had scattered, grateful for our arrival and the reprieve from caring for a patient typically out of their comfort zone. His construction worker son was seated next to him, fresh from a muddy job as evidenced by the mud on the floor and his boots. He appeared to have no idea how sick his dad was. It soon became clear that he would not survive the flight. By now he was profoundly bradycardic and hypotensive enough to require a Doppler to get the pressure. He was drifting in and out of consciousness and his distal pulses were absent. I pulled up a stool and talked to them both about the seriousness of his condition and the options we had before us. We could load him and fly him to the receiving University hospital with the high probability that he would go into full arrest and require resuscitation and likely not survive to get to the operating room. Or, we could sit with him, and allow his son to be with him and allow him to die in as peaceful a way as possible. His son quickly chose the latter.
I remained with them, and encouraged the son to lean down, touch his dad and tell him those things he wanted to say. I was honored to witness a most poignant and tender scene as this burly construction worker wept as he apologized for his teen age antics, for his absence during his rebellious years and professed his absolute love and admiration for his dad who had provided a safe and loving life for him. As his heart neared asystole, I asked if he wanted us to start resuscitation efforts that would include medications and CPR. He looked up and shook his head in the affirmative. His son kept talking into his dad’s ear, apparently there were more sentiments he needed to express. After five minutes, I asked again and this time, he simply said “No, I am ready to let him go now.” I was moved and as we hugged, tears flowed. I was humbled by what had just transpired and grateful that we had moved far from the days of separation of family and patient.
Patients’ families relive the worst day of their life over and over. They replay our actions, our attitudes, our facial expressions, their feelings and their feelings about us, as caregivers. They talk about “that day” at family get togethers, and at holidays. It’s vital to continually assess whether we are merely health care providers, or we are caregivers. For me, I want caregivers on my family members’ team. I want caregivers who follow the theory of relativity, where they treat patients like they are their relative, for they are indeed someone’s mother, wife, sister, daughter… I wouldn’t want my mom to die in the presence of only strangers, or to have all decision making left in the hands of those strangers, or to not have her pain addressed at consistent intervals, or fail to recognize that she is and was a vital and vibrant woman who contributed much to the world. True caregivers will do all of that and more.