It's Time. The Part We Never Told.
On January 2, 2019, the day after Chandler died, I wrote in my daily blog post, "So many thoughts and emotions I want to share, and also some things I'm pissed off about, but my body, mind, and soul are spent."
The next day, I resumed writing about everything...as if wringing the grief from my heart into a jar that I could pick up and hold whenever I wanted. A jar that would ultimately sit on my shelf in the form of a book chronicling my first year without Chandler. But that middle part...the part about being "pissed off." That part was never shared.
Today my son Chance released "Change of Heart," a song about his brother Chandler's last day. His song and the words he wrote on his Instagram post were my clear mandate -- the time has come for me to tell my story of Chandler's last day. That part about being pissed off.
From that day on December 15, 2018, when Chandler was hit by a car, throughout his time in the hospital, until today, I have been an open book about our story, about his story. Literally. I wrote a book about it. The one chapter of the story I did not tell is, arguably, the chapter that will be indelibly imprinted in our minds like a lingering scar from a white-hot torch. And what makes it so? It was entirely preventable.
It is one kind of nightmare to see your son lying paralyzed, coursing with tubes, surrounded by a forest of machines, inhabited by breath from a respirator. The result of an accident. It is another kind of nightmare to see your son suffer in the worst way imaginable. The result of deliberate action. And inaction.
I will endeavor to use "I" rather than "we" when it seems appropriate, since I don't presume to be an accurate historian on behalf of Chip, Charli, Chance, and Chase. We each have our own internal landscape that was laid down that day.
The story of Chandler's accident, his 18 days in the hospital, and the first year of my own day-by-day processing of life without Chandler after his passing on January 1, 2019, are detailed in my book First, Brush Your Teeth--Grief and Hope in Real Time. I am ready to release the part of the story that I have never told publicly, a dark cave in my internal landscape accessed only by those I have chosen to allow entry.
I ask myself why I want, or need, to tell this story. Is it because I hope for some sense of catharsis? Yes. Is it to try and prevent this from happening to another family? 100% yes. Is it to bring awareness to the importance of organ donorship? Yes. Is it because I hope and pray to God that somehow those who caused Chandler's suffering will read this and face, possibly for the first time, the reality that what they did was unconscionable? Hell. Yes.
At Christmastime 2018, we had just gotten home from the hospital and were about to go to bed when we received a call from Chandler's neurosurgeon. He said he had hoped to deliver better news, but the latest imaging showed severe diffuse axonal injury, carrying the worst possible prognosis. He told us that comfort care would be an appropriate choice to consider. Comfort care, sometimes known as end-of-life care, aims to control pain and other symptoms so the patient can be as comfortable as possible.
Our family agreed without reservation that Chandler would not want to simply exist. We also agreed without reservation that he would want someone else to be given the gift of life because of his healthy organ donation.
The next day we had the necessary conversations at the hospital. The staff, the nurses, and Chandler's doctors appeared supportive and compassionate.
Chip and I endured the long, painful interview with One Legacy, the organ donor organization brought in by the hospital. I had no idea how grueling the process would be. But we knew this is what Chandler would want.
The hospital worked with One Legacy to coordinate staffing and scheduling of the operating room where Chandler would be taken at the appropriate time. The day was set. January 1, 2019.
The morning of December 31, 2018, as I was driving to the hospital, I received a call. It was the hospital's spiritual care director. "Everyone is talking about your decision and disagrees with it. Do you know that Chandler will die alone on a cold, steel operating table?"
This woman, this spiritual care director, had the audacity to speak these cruel words to me in an attempt to manipulate my emotions and change my mind about a decision that was made by Chandler’s family. The people who truly know him. Adore him. Would move heaven and earth to see him wake up and take life by the horns like he did during his 25 vibrant Chandler years.
I learned later that she had called Chip first. Having made no headway with him, she then called me.
When we arrived at the hospital, one of the doctors who had been part of Chandler's care since the night of the accident called us into the conference room on the Surgical ICU floor, our home for the past 16 days. She told us she had to recuse herself from the case as she had a conscientious objection to our decision. She urged us to trach him, PEG him, and put him in a long-term acute care facility, a common protocol for patients with severe brain injury, wherein the patient is dependent on tubes inserted for feeding and breathing. At one point in the conversation, she asked, "If Chandler were born like this, would you be doing this?"
Just let that sink in for a minute.
My resolve collapsed. I was confused, terrified, angry, distraught.
I called One Legacy, sobbing, and told them I didn't know if I could go through with this. I recounted what was said to us. They told me that this was absolutely not true. Chandler would not be alone -- if I wanted to be with him in the operating room, I certainly could be. Chandler's aunt, there with us the whole time in between her duties at Cedars-Sinai as a physician, said that she would be honored to be with Chandler. The person from One Legacy also informed me that what the doctor had done in having a meeting with us to recuse herself was completely unnecessary and uncalled for. She could have quietly stepped aside from the case. Shame on her.
January 1, 2019. Out of the corner of my eye, I saw the New Year's Day parade on TV.…just as the organ donor float was passing. It was like a sign, a glimmer of light on the darkest of days. We are losing Chandler. And in our loss, someone else, maybe more than one individual, will live.
We entered the conference room, once again, for our first, and only, meeting with the doctor who would step in for the doctor who had recused herself. He sat down at the table in the conference room where we had sat multiple times before to hear news that never got any better. He flippantly remarked, "It's really not that bad."
Let that one sink in.
It appears he had not even seen Chandler. He had no idea whether or not Chandler had been "trach-ed and PEG-ed.” He went on to say that Chandler was young and strong and encouraged us to consider, and here we go again, that we "trach him, PEG him, and put him in a long-term acute care facility" to see if he would improve. Because, of course this doctor who just breezily popped into the conference room knew Chandler's situation better than the neurosurgeon who had watched Chandler repeatedly fail to respond to stimulus and who had read the latest imaging, informing us as gently as he could, "Chandler's injury is diffuse throughout his brain and brainstem -- it's like someone took a paint brush and splattered paint onto a canvas."
The Struggle
Shortly after noon, we were instructed to say our goodbyes to Chandler. We left the room knowing that the next news we would hear would be that Chandler had passed peacefully and his organs were on their way to their recipients. We did not get our Christmas miracle. Someone else would.
The process for preparing for organ donorship would be to remove medications that would hinder the harvesting protocol and replace them with a different medication to keep the patient comfortable. In order to avoid a gap in pain control, a calculation must be made to start the new medication at a dosage that will afford equal pain control as the current medication. This did not happen. I'm saying this in simple layman's terms, but Chandler’s aunt, who remained in the room to accompany her nephew to the OR, witnessed everything and knows exactly what went down. She watched Chandler begin to be in distress.
As Chandler lay there struggling, his physical body reacting to pain, the doctor at the helm instructed the nurse, "Go get the family...when they see how strong he is, maybe they'll have a change of heart."
A change of heart.
We surrounded Chandler's bed. Confused. Terrified. This was not at all what we were told would happen. He would be kept comfortable.
The minutes ticked by, and he continued to struggle despite our begging for something to be done. The doctor was long gone. The nurses had to text him to give him updates.
At one point, we —his family—were told to hold him down so he would not rip out his tubes.
We watched Chandler suffer. Struggle. Choke on yellow mucous. The sounds.
We. Will. Never. Forget.
Never unsee.
At some point, it was determined by the doctor, present for perhaps a total of 10 minutes the entire day, that they could not go through with the organ donor process.
Now there was only one obective. Stop his suffering.
I had to chase down the doctor and beg him to please make Chandler comfortable. He had instructed the nurses that they could only titrate up the medication every 10 minutes. So I watched the clock and implored the nurse at every 10-minute mark to please increase the medication.
Chandler passed on January 1, 2019, late in the afternoon. His last hours were spent in needless suffering.
I watched my mom pass in the hospital from lung cancer. It was peaceful. I watched my father pass in the hospital after a broken hip. It was peaceful. They were not in pain or agony. When we talked with the doctors at the hospital, we were assured that Chandler would be kept comfortable. That, and knowing his vital organs would give life to others, provided us some semblance of strength moving through those last days and hours. Until it didn't.
I now know that there is a thing called a Hero Walk. As organ donors are wheeled to the OR, staff and family line the hallway to honor that individual. Chandler was deprived of his Hero Walk. Instead, his last hours were marked by agony and suffering. We, his family, were deprived of a meaningful point of redemption as we said goodbye to Chandler. And someone, maybe more than one person, was told they would be getting a new, healthy organ on January 1. They were deprived of that gift of life. I hope they ultimately received the organ they needed. If they did not, that is on shoulders of the man at the helm of Chandler's care that day. Shame on him.
Now What?
And so, as we began putting the pieces of our lives back together after Chandler, we did not speak publicly about the details of his last day. We did not share about the egregious efforts of the staff to persuade us not to do what we knew full well Chandler would want done.
In the summer of 2021, after much back-and-forth and bringing in others who had more "pull" than the Espinoza family, we were finally granted a meeting with the CEO and the head of the ethics department at the hospital. We spoke the words to them that had been said to us — by the doctor who had recused herself, by the spiritual care director, and by the doctor directing Chandler's care on his last day. As we recounted our story, they were visibly shocked. They assured us that nothing like this had ever happened at the hospital and that they are in full support of the organ donor program.
The meeting ended with the CEO saying, "If there's anything else you need, please let us know." I was naive enough to believe he meant it.
After the meeting and having some time to process the discussion, we wrote the following email to the CEO:
___________________________________
Chip and I want to extend our deepest appreciation for the time you took to meet with us regarding our experience at ****** Hospital with our son Chandler Espinoza. We truly felt heard and understood, and we accept your sincere apology that the hospital let our family down in the worst situation imaginable. We also believe that had you been at the helm in December of 2018, our story would have been different. We left our meeting with an assurance that there is no policy or procedure in place that would lead to another family experiencing what we experienced. As you said, it was a "person-specific" situation. Which leads to my next point.
You had graciously expressed that if we wanted or needed to address anything more, we could contact you. Our family would like you to know that there is a significant unfinished piece of business for us and, in reality, for the hospital.
Since Chandler's suffering on January 1, 2019, was tied to specific persons (and specifically executed at the hands of Dr. --------), this individual should be held to account. This doctor's words, attitude, and actions were egregious and should not go without notice and correction by your institution. This doctor must be confronted with the reality of his actions on January 1, 2019, and the life-altering impact they had on our family. We not only have to live with missing Chandler, we also have to live with horrific images of Chandler suffering in his last hours unnecessarily. Chandler was robbed of a peaceful passing; our family was robbed of the ability to sit with him and see him pass peacefully; Chandler was robbed of the opportunity to give life to others with his vital organs; our family was robbed of knowing Chandler's legacy lives on through his organ recipients; and donors waiting for his organs were robbed of precious life-giving gifts on January 1, 2019. All at the hands of Dr. ---------.
Therefore, the Espinoza family is asking that Dr. -------- be subject to whatever in-house peer review process the hospital has in place. In reality, we would like to see this doctor dismissed from his duties at ----------- Hospital as he is a stain on the institution. But we are aware that such action must be precipitated by thorough investigation and review of his actions. We assume that this doctor is not immune to such a review.
We assert that either Dr. --------- 1) Was incompetent in knowing how to provide adequate comfort care to alleviate suffering, or 2) Had an agenda that was counter to what our family knew Chandler would want and, therefore, refused to administer the appropriate drug protocol in order to keep our son comfortable and eligible for organ donation. Either way, it does not bode well for this doctor, and it is imperative that he be held to account.
I am including an account from Chandler's aunt, who is an OB/GYN and critical care doctor. She witnessed all of this firsthand from the standpoint of being Chandler's aunt, knowing him from birth, and also from a medical standpoint, knowing the end-of-life protocols she had enacted as a physician. She stated to me that even in South Sudan where she had volunteered her services, she had never seen anything like what she saw happen with Chandler.
_________________________________________
The letter from Chandler’s aunt documented in concise medical terminology what she witnessed that day, in particular the actions of the doctor directing Chandler's care. I will not include it here.
Like I said, I was naive enough to think the CEO of the hospital meant what he said when he told us to contact him if there was anything else we needed. Multiple follow-ups. No response. I even emailed just before the anniversary of Chandler's death, imploring him that it would bring some sense of healing or release to know that the person who caused Chandler's suffering was at least confronted, reviewed, reprimanded….something!.
No response.
So this is it. The part of the story we never told.
Honestly, I can't even venture a guess as to what, if anything, will come of releasing our story. Here is what we would we like to see as a result of bringing this story out into the light.
1) Hospitals will communicate clearly and in a timely manner their policy and protocol with regard to end-of-life or comfort care. If there is any conflict with a family's wishes, the family is then able to transfer care to a different facility. We did not know what we didn't know until it was too late.
2) Doctors who cannot support a family's end-of-life wishes will remove themselves from the case or be held accountable by the hospital for their actions that result in undue suffering for the patient and the family.
3) Staff members will honor a family's decision for end-of-life care by withholding manipulative language aimed at forcing a counter agenda.
4) People will become aware of the power of organ donorship. Yes, it is a difficult process for a family, but it is a pinpoint of light and hope in a dark time. Chip is alive today because he received a healthy liver from a donor whose family endured the pain of the process.
5) Families who, God forbid, are facing a situation such as ours will be empowered to ask questions regarding all aspects of end-of-life care and make decisions they are comfortable with.
6) The doctor who directed Chandler's care on January 1, 2019, will be reviewed, and he will reap appropriate consequences for his actions.
This story is not just our story. I spoke with a social worker who has seen it happen as well. I know there are countless others who carry with them images they will never be able to erase, memories of their loved ones suffering, because an institution, or an individual, was either incompetent or committed to an agenda in opposition to that of the family and the patient.
Please share this story. Our voice is louder together.
