Patient advocate – new father
My daughter’s neonatologist and I stood close facing each other, cramped at the foot of my daughter’s isolette in the NICU. She was only 2 days old and on a ventilator. He had just finished updating me on her bilirubin and other labs, as well as her imaging. I honestly didn’t care.
Most physician parents would have wanted to know all the data, all the lab values, etc. I had complete confidence in a level 3 NICU to replete potassium, manage a ventilator, and correct neonatal jaundice. All routine things in a NICU.
I was steeling myself for a more difficult conversation, one I had had dozens of time before. But before, the conversation was about a patient, someone behind the emotionally safe distance of the doctor-patient relationship. This time, the end-of-life discussion was for my own daughter.
I felt I could broach this subject with our neonatologist early. He had told my wife and me that our perfect, beautiful, newborn daughter was in fact not healthy. He had done it in a straightforward and kind way.
After the first two or three questions from my wife he stopped her and said, “Those are good questions. We will answer them as we can, but right now, you need to go fall in love with your daughter.” So we went to her bedside and did just that.
So, I stood in front the neonatologist, both a father and a physician. I started to speak.
As a clinician, you never know when you are going to stumble across a gift that a patient has given you. Sometimes they are obvious, even physical. Other times the gift is knowledge and insight you would never have gained if not for the intimacy of caring for them.
Jeb gave me and my wife one such gift, and in a round about way, our daughter as well. Jeb was a very sick toddler who was frequently in and out of the pediatric hospital I trained in. He had been born very early, a twin. His brother, Alex, had fared better than him. Alex had developmental delay, but otherwise a fairly healthy 2 year old.
Jeb was a very cute kid. His language skills were not well developed for his age. His only verbal communication was limited to blowing raspberries in various tones that correlated to his mood.
As residents, we would walk into the rooms gowned in protective clothing. Once into Jeb’s room, we would turn to see Jeb standing in the hospital crib, nasal canula secured to his nose, belly protruding outwards, blowing raspberries to get our attention. Heart=melted, every time.
Jeb had bronchopulmonary dysplasia (poorly developed lungs as a result of his premature birth), he was chronically oxygen. Additionally, he had Hirshsprung’s Disease (improper nerve development in the colon), this could lead to bouts of constipation and bloating so severe that it would compromise his lung function.
Jeb’s illness put an extreme burden on his mother. She was a single parent who lived about 90 minutes from the hospital in a small town. Any slight cold or virus would send Jeb into the hospital. His mother did all she could for him. His health was so fragile that she lived her life around him and his illnesses.
During one of his hospitalizations, Alex was with him. Alex had a small tricycle that he was riding around in the hospital room. He rode it up to all the hospital staff, stopped, smiled and waved. He occasionally even spit out a few words. His mom never took her eyes or attention off of Jeb.
In that moment, I saw all the sacrifices this mother was making for Jeb. Time, money, energy, sleep. Also, I could see she was sacrificing Alex’s share to Jeb.
Alex was still in need of extra support and therapy, yet compared to his brother, was the picture of health. Even if a mother’s love is infinite, nothing else in this world is. At some point, she had to take from Alex to give to Jeb.
Jeb was so sick. His lungs weren’t going to “heal,” this is the way they were. The airways would get bigger, but he would never have healthy lungs. His colon would never develop the nerve endings that it lacked. I left the hospital that day a little devastated.
I couldn’t get over the image of Alex, who needed so much, being ignored because his brother needed so much more. The collateral damage Jeb’s health was causing seemed obvious. I even talked to his pulmonogist at one point, whose statement, “Jeb is a very sick, complicated case,” seemed to say it all.
Jeb wasn’t going to get better, we were just “managing” his illnesses. All the doctors knew, Jeb would probably at some point die of the complications of his birth. Indeed, about a year later, he did succumb to complications of a respiratory infection.
This does not mean Jeb’s life did not have purpose and was not worth living. On the contrary, Jeb clearly brought a great deal of joy to those around him. However, that joy came at a very real human cost, to both his mother and brother. Like so many other parts of life, there is no such thing as a free lunch.
That night, I staggered into the house, emotionally punch-drunk from the existential quandaries I had dissected during my shift. I laid down next to my wife in our bed and told her Jeb’s story.
We laid on our backs staring at the dark ceiling. I asked my wife, “What if we have a baby like Jeb? Are we going to hook our child up to machines and oxygen, knowing what we know? Is any life for our child worth any sacrifice? Both our child’s and ours?”
We discussed this at length. My wife cried and hugged me. In the end, she said, “No, if we have a child like Jeb, we will love him or her sooo much, and let him or her go. That is no life for our baby.” We hugged again, rolled over, and drifted off to an unnerved sleep.
Neither of us had any inkling that 3 years later we would be sitting next our daughter’s bedside in NICU and thanking Jeb for that conversation. We continue to be so grateful for the gift he gave us.
back in the nicu
Back the foot of our daughter’s isolette, I started the conversation with our neonatologist.
I began, “I know we still don’t know much. But, you don’t have to do what we do for a very long to see a lot of therapeutic creep. More than anything, I am worried about her ending up on long term ventilation, with a G-tube, never being able to live without a machine.”
Continuing, “Again, I know we are waiting for more information from tests and imaging to see if we get more answers. I also know a significant chance exists that we will have to make a decision without a discrete answer. As an experienced physician you get a feeling, a gut feeling, about how things are going to turn out. That might be the best information we get. I just ask you to tell us when you have that feeling, because we are ready to have the conversation.”
His response was measured, but honest, “I am not there yet, but I am glad you are bringing this up. Certainly, the possibility of tubes and long term ventilation are real. I want to know I agree with you. Just because we can do something, doesn’t mean we should. I will let you know when we have to have that conversation.”
being your daughter’s palliative care doctor
That was my first, but not last, instance of feeling like I was my daughter’s palliative care consult. I spent a good bit of our time in the NICU having similar discussions with nurses and, eventually, the hospice team. Frequently, I felt like I was in between two worlds.
I was translating our values and emotional state into medical speak, because I knew that was the best way to advocate for my daughter. Code-switching back and forth between the human and medical seems to be beyond many clinicians.
It took a great deal of effort to be both a physician and father in those days. Yet, it was a rare ability and gift I was able to offer my daughter. I want to give a shout out to my counselor for teaching me to view it that way, instead of the burden I had felt it to be.
In the end, when we said we wanted to take our daughter home to pass, it was a groundbreaking request for that hospital. It had never been done. Nonetheless, our neonatologist and the hospice team were amazing.
My wife and I decided that we didn’t want 100% of our daughter’s life to have been lived in a windowless NICU. At one point, I said that if we could at least get her into the parking lot, where she could feel the sun, I would have been satisfied.
Yet, we were able to take her on a 45 minute drive through the mountains to our home. Our neonatologist came on his own time, the one who extubated and pronounced her.
We sat in the dappled shade under the pines, holding our daughter for the first time without the ET tube or ventilator to worry us. He told that us that some of the nurses had asked him if we were doing the right thing.
He had apparently told them, “This is the ONLY right thing.”