The Final Hour

What was once a topic I greatly feared has become a reigniting fire that has brought forth many new perspectives, questions and growth. It was quiet in our room, the Doctor had just come in to tell me she was leaving. At this time Legend was “stable” (whatever that means as he was unconscious and in the ICU) and that in the morning we would be doing an angiogram to look at the Arterio Venous Malformation (AVM) and make a game plan for what our “NEW NORMAL" would be. To be honest I was hopeful, not in denial just hopeful that I would not have to say Goodbye to my son just yet; that there was a glimmer of hope that something could be done, that maybe just maybe a miracle! As the doctor gave us her last update and my husband and family were in the room it was recomended that my husband go home and get some rest because our future would involve us switching on and off at the hospital and taking care of our girls at home. I hesitated with that advice, something deep down did not feel right. I resisted because I felt although he was stable now anything could go wrong and it is just a mere amount of seconds before what we thought would be could ultimately come crashing down! With quite a bit of convincing I made it clear I was not going to leave, I begged to sleep in bed with my son but was told that sleeping in his room was an exception. His stint in his cranium, his intubation tubes, IV’s and catheters were all sustaining him in that moment. It seemed to me they were saying that any disconnection could render him lifeless. In complete shock I just nodded unable to imagine all that was happening yet scared of how alone I felt in the moments when everyone left. Bundled in fleece jackets, blankets and heating pads I rolled over holding Legends hand for the last time and trying to get some sleep. Repeating mantras over and over in my head, begging to awaken from this fucking nightmare, I almost fell into a peaceful state, until….. That was until my ears rang with the horrific sounds of monitors alerting a reality I had feared most.

Right as I was about to fall asleep alarms of every kind went off. Legend’s hand was ripped from mine and it that moment I knew intuitively it was bad but I all I could do was scream! Screaming for answers when I was picked up and taken to a family waiting room to be left alone in a hallway while a team of 20 individuals tried to sustain my sons life! The cold floor seemed to fill my bones as I kneeled upon the waiting room floor screaming at the top of my lungs. Someone would come out every 5 minutes to tell me they are trying to resuscitate but don’t have answers yet. It seemed like forever I was alone on that floor until I was suddenly embraced by some woman. I still to this day have no idea who she is or where she came from. I am not even sure she is a real person but she made me feel safe in what was the worst time of my life, in those moments where I felt so alone. She held me for what seemed like hours as I just screamed and cried why, over and over again. She did not tell me it was going to be ok or try and comfort me with empty promises she just held me and then was gone. I would later learn that those ear piercing alarms were the sound of my sons heart no longer beating. I would learn that the room of people were all a team of respiratory therapists, crash team, doctors and specialists trying to figure out what the HELL just happened. I would learn a bunch of fancy terminology, processes and procedures that went into sustaining his life but ultimately failing. What I would not learn was what happened next to my son or in what ways could we be a part of this process. It seemed the work ended and so did the direction of what lies ahead when time of death was called.

I demanded to go into the room, terrified to see what was truly happening. As I approached his room I watched in horror as huge men were trying to resuscitate my three year old son. I watched the chaos whirling all around me, I heard the obnoxious alarms and intuitively just started screaming STOP STOP STOP! It was clear in that moment that my son had passed away, that no amount of CPR, science, doctors or procedures would bring him back. It felt like a lifetime I was kept from him, waiting in an empty room screaming on a cold floor, I couldn’t bare another second. After my son passed I would go on to learn that the effort that goes into resuscitating a child once they CODE is far greater than that of an adult. I am grateful for the efforts that went into keeping my son alive yet I cannot help but wonder how these final hours of his life could be different for both him and our family. They were traumatic in a sense his condition was unknown but also traumatic in a sense of the way everything was handled.

Not to discount medical professionals as I am so grateful and applaud doctors and nurses for all their work but I think that after my experience it is clear there is a gap in the human experience and the professional experience in and around healthcare in general. So much so that the moment I demanded the hospital staff to Stop, I jumped onto the bed with Legends lifeless body and held him as his flesh changed from a golden tan to a cold blue and THIS was the most peaceful moment I had experienced all day. The moments his body went from being warm and soft to hard and rigid. I couldn’t help but wonder if the smile across his face was him saying, “ Mommy I feel you I am ok.” There is so much I wish was in place to help families navigate these final hours so that they can make the best decisions possible and not have any regrets or last wishes. In the same way that we ask a dying patient what their final wishes are we should also be asking all loved ones. As a grieving mother I cannot deny the fact that a large part of me died with my son, yet here we were with no road map of what’s next. I could have only wished that I felt comfortable to talk about death so that I could make a decision or choice of what happened in the following hours after his death or how I could be gently lead to a place where I could forever feel confident in the steps I took next.

My desire now is not to change the past, in the past two years I have done things that I feel are ceremonial, intentional and purposeful in the wake of Legends life. Not to erase what happened but to bring peace to something I felt was so stark and routine. But these experiences, this loss has also opened my eyes to what so many people will experience if the narrative isn’t changed around death. And after a deeper dive I’m learning it is not just loved ones affected but also healthcare professionals as well. In order for us to understand what could be different I have chosen to use my story as a catalyst not because it brings me comfort in retelling these intimate final moments but because I feel if I don’t I am not sure who will. Death is the only certainty amongst all mankind a universal similarity we all will partake in yet we know nothing about. From what it looks like, smells like, feels like and the aftermath that ecompasses people left in its wake.

According to Arica A Brandford and Deborah Reed: “nurses suffer from depression at almost twice the rate of individuals in other professions. Major depressions affecting employees and organizations”. She goes on to write the importance of a healthy happy workplace being a vital part of quality patient care and outcomes. So why is it we are not addressing the human connection when we are dealing with professionals whose work revolves around sustaining life? A life that will ultimately end and most likely be experienced at some point throughout their profession. Is it because a surgeons ego is affected when a patient can not be saved by the work of his hands; or is it because we have taught medical professionals to go into each room as a professional and not a human? I am not sure the answer to that question but I feel the answer is a vital piece of the current narrative. Encouraging medical professional to not connect too much, so that the outcome does not cause them emotional discomfort. Unfortunately this is theory that has been echoing throughout the halls of hospitals and in the lectures of medical schools for far too long. I believe it is the reason I felt completely lost as the doctor called time of death as I held my sons hard cold body for the last time. I believe it is the reason that they can come in and tell me I have 4 hours with my son and set a timer without any emotion towards how gut wrenching that is to hear and how it would take me years to ever sort out these experiences. Why? Because death in the medical profession is looked at as a failure and there is no teaching of what is next or what can be done to provide care that encompasses the whole experience rather than the procedural routines. Doctors and nurses learn science, policy and procedure but are not being readily equipped to handle the aftermath of death for themselves or their patients. This is not to discount that doctors are not humans or do not feel because I would be completely wrong to say that my sons medical team was not compassionate. They were compassionate but also just as shocked, unprepared and untrained for the aftermath of what seemed like a perfectly healthy little boy otherwise to die in their care. The result of being in a facility that knows how to treat patients but not how to handle death resulted in my family and I feeling completely lost and agreeing to things we thought we didn’t have a say in. It meant that this uncomfortability of death and this ignorance around death prevailed both in and out of the hospital. It meant that my sons team will look back at this case as just that: a sad case shoving the emotions down into a place where they were taught it is all in a days work. But really is that what this is: just work? Is that why these humans spent a large part of their 20’s in grueling school or why they sacrifice so much time away from their families for the money, for the esteem or title. I beg to differ, I would like to believe these doctors, nurses and medical professionals are highly empathic humans that feel just like we all do and that went into a profession to contribute their talents to the world at large.

After going to the END Well conference this weekend I was fortunate to meet many medical professionals who have awoken to a human centered care giving experience. Who are advocating and learning how to be more connected and the tools and practices that can be implemented to process end of life. Doctors who are passionate about offering more human centered care to their patients, not because it reaps a higher paycheck but because people are healthier and happier when they are met. As Barbra Beskind says I quote: “What must I do to live presently and die happily.” The discussion around death is not to focus on death only but instead to talk about the present moment and what we must do as doctors, nurses, healthcare providers, lovers, friends, communities and nations to address the inevitable and move forward with an understanding and awareness of what it means to live presently and die happily.

After much thought and a thirst to continue down this path I cannot help but devise a plan for a better outcome, to actively pursue a generation that is equipped and knowledgable and not afraid to talk about death. It was within these peoples stories I was able to see death from a place of dying but more so about life and living presently. In my own personal experience I have come to realize there were still minor shifts that could have taken place had I not been so afraid to talk and learn about death or had the hospitals been better trained or equipped. One thing would be the hospital allowing loved ones to somehow be next to (lie in bed with, hold) there loved ones when they are in intensive care. I know above all the goal is that they will recover but in my situation that was not the case and the last hours of my sons life were spent observing him like a fish in a fish tank. I wish I could have held him selfishly but also because though he was unconscious I truly believe he could feel me there all along. Calling time of death is insensitive as it feels more procedural than humanistic. It would have been nice to implement something like the work of Jonathan Bartels who has developed the Pause after his own experiences with death as a trauma nurse. It is an app that allows medical professionals to pause and acknowledge the work they have done and the life that has been lost. It is a way for a professional to also be human and has been so successful that the Cleveland Clinic has implemented it across the East Coast. A small gesture with massive benefits to both patients, loved ones and professionals. My hope is that these practices are not just apart of cutting edge clinics and hospitals but all spaces that serve patients so they may live well but also die well.

Although the aftermath of death isn’t a medical profession it is a human experience that medical professionals have a front row seat in. It seems that we have progressed in medicine and science so much so that we think death is few and far between so we only teach to sustain life. Maybe its the naivety of our existence or the fear of death in and of Itself. I truly believe the narrative must change in order to offer care that is whole and focused on not just attempting to keep someone alive but accepting death is real, untimely and inevitable. By doing so we can open up conversations and train our medical professionals while preparing patients and loved ones on what it means to live well but also what it means to die well.

To learn more about the pause you can go to www.thepause.me

To learn more and for resources on death and dying you can visit www.endwellproject.org

** Cited article: Depression in Registered Nurses: A State of Science

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