It was just after 7:30 a.m., when I hit “send” on an email addressed to my husband’s radiologist, physician’s assistant and radiation nurse.
He wasn’t ready to have a conversation about getting a feeding tube last week. But he’s ready now. He needs one ASAP. He can’t eat. He hasn’t had any fluids in 48 hours. It hurts too much for him to swallow water, and he’s agreed to get the tube placed. Please advise.
My husband Gavin had lost a lot of weight by that point in his cancer treatment. In his mind, getting a feeding tube meant he was giving up. But finally, in his own time, he came to realize having nutrition fed to him through a tube placed directly in his stomach was better than being dead.
Monday morning came, and we got up and out of the house, ready to have that conversation with his physician’s assistant. Gavin moved slowly and could barely keep his eyes open, partly because he was so high from all the narcotics prescribed to deal with the intense pain he was in from radiation, and partly because he was dying.
Adrenaline had taken over my body. The morning was typical. A tech took his vitals, and we were led back to an examination room. Gavin and I sat on a bench next to the staff desk in the room. But this time, he didn’t have the strength to stay sitting upright. He laid down and put his head on my lap.
The physician’s assistant came in and looked at Gavin. As soon as she took her seat, I told her I wanted to schedule him for a feeding tube, expecting her complete understanding and compassion. Instead, she laughed.
“I recommended a consult for a feeding tube last week, and you declined it,” she said sharply. “Now I have to start over from scratch and reach back out to the GI team to see how we can get him in.”
My mouth dropped open. I stared at her, bewildered.
“I wasn’t ready last week. I’m ready now,” Gavin mumbled, barely audible.
“What did he say?” the physician’s assistant snarled.
I very calmly repeated what Gavin said, my heart breaking for him and rage racing through my body.
“Well, you certainly have made my job harder. And now I’ll have to see what I can do for you. You’ll hear from me about your next steps, and you better follow them. It might be too late because of your attitude,” she barked.
I leaned in, looked at her straight on, meeting her nasty tone, and said, “No. Your attitude has made this harder. And it’s very much not appreciated right now. He’s in pain, and your job is to help us. In fact, you took an oath to do no harm, and what you’re doing in this room is harmful.”
She didn’t say a thing. We stared at each other for several seconds. Gavin grabbed my arm and kissed it. He squeezed my hand.
“Hey,” he said softly. I looked at him. “It’s OK. I’ll be fine,” he said.
“No, you won’t, Gavin,” I laughed. “You need to get a feeding tube today.”
I looked back at his PA and waited.
“You better just hope you’re lucky and that I can work some magic to get him into an emergency surgery. It might be too late for him,” she said again.
“I can’t believe you,” I said firmly as I helped Gavin stand.
I didn’t look back at the PA as we left the room. I felt like screaming down the hallway, but I remained quiet as I helped Gavin inch his way out to the lobby, moving at a snail’s pace because he could barely walk and refused to use a wheelchair.
I helped him into one of the reclining chairs where he fell asleep within seconds. I tried to calm myself down by taking deep breaths and forcing myself to yawn. After a while, a radiation technician came to get him for his treatment.
In a blink of an eye, I looked up to see Gavin in a wheelchair with fresh gauze wrapped around his neck. He was asleep again. The technician said that Gavin had a panic attack in the radiation machine, and they needed to administer anti-anxiety medication before he could go through. He was a zombie the rest of the day, unable to walk or talk. I ensured he got to where he needed to be for his bloodwork and infusion, always on high alert, just waiting for the physician’s assistant to call me about his feeding tube. She didn’t call.
A hospital staff member helped me get Gavin into the car, and I helped him to the couch as soon as we got back to the house. I opened the fridge to get something to eat for the first time that day, and my phone rang. It was the radiologist’s nurse, who was always helpful and friendly to us both. She called to tell us that she had spoken to all the team members, including the physician’s assistant, and the radiologist put in an order for Gavin to go to the emergency room to get his feeding tube.
“Right now?” I asked, looking at Gavin, who had passed out on the couch.
“Right now. We already called ahead to let the ER know you were coming over and ordered Gavin’s feeding port surgery to happen as soon as the ER can fit him in. From what the team said today, Gavin needs to get in fast,” she said.
I loaded Gavin in the car again, and we returned to the hospital within the hour. We were brought back into a room right away, and within minutes, he was hooked up to a monitor and had his blood drawn, a bag of saline solution pumping into one arm, and potent drugs flowing through the other. He was getting ready to get a CT scan as well.
The new drugs turned him into a chatterbox, but due to a radiation side effect of his, he developed thick ropes of mucus in his mouth, and nobody understood what he was saying but me. The nurse gave him a motorized suction tool to use, but it didn’t help. After a while, he gave up trying to talk, and when asked questions, he would point to me to respond.
The emergency room attending came in to let me know his CT scan hadn’t shown any surprises, and I had gotten him there just in the nick of time. The hair on my arms stood up as I asked the attending physician what he meant by in the nick of time.
The room spun when I learned that Gavin’s white blood cell count was dangerously low, his immune system markers were even lower, and if he hadn’t been brought in, his body most likely would have started to shut down.
The attending physician nodded at me and smiled quickly, reassuring me that Gavin was in the right place and everything would be fine. I forced myself to sigh and smiled back at the doctor.
Not long after, Gavin was admitted to the long-term cancer wing of the hospital. I followed behind as a staff member pushed Gavin’s hospital bed through the hallway. I waited outside his room as the nurse helped get him situated and hooked up to an oxygen machine. I asked for extra blankets and a pillow, and made myself comfortable in the recliner.
Over the next eight days, the reclining chair in his small hospital room became my office and bed. I made health care decisions from that chair while witnessing appalling behavior from medical professionals as my husband struggled to talk, swallow, stand, and sometimes even breathe.
I hoped being a patient in the hospital would give us a reprieve from his physician’s assistant. We didn’t see his regular radiologist or any other member of that team, but his physician’s assistant showed up in Gavin’s hospital room the morning after he was admitted, shaming him for not going to radiation earlier that day. The next day, she laughed at him when Gavin told her the way she wrapped his neck wound hurt him. Finally, she refused to call in an order for anti-anxiety medication in liquid form to push through his feeding tube, saying it would be “too hard to get.” She kept asking him to just swallow it since he had better painkillers.
When I caught her talking negatively about him outside his room to a nurse and a palliative care team member, I had finally had enough. I marched past the three of them and found my way to the patient advocate’s office.
I requested the physician’s assistant be removed from Gavin’s case immediately.
I requested no more than one staff member be in his room at a time.
I asked that the doctors talk to me instead of him.
I was given a form to sign that said I could speak on Gavin’s behalf. After that, everything I advocated for was accepted and carried out. And the very next morning, the liquid anti-anxiety medicine showed up for him.
When he was released from the hospital, he had 10 more radiation sessions and two more chemotherapy sessions left to do. I, on the other hand, wasn’t anywhere close to being done advocating for his needs.
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Gavin is now eight months post-treatment, and gratefully, no recurrence has shown up. Before becoming Gavin’s advocate and caregiver, I assumed being an advocate meant asking for a second opinion or ensuring the right medication was sent home. The idea that I would have to speak up for my cancer-stricken husband to be treated like a human being never crossed my mind until I was sitting across from the patient advocate manager, reviewing his patient’s rights.
We were lucky that I was able to be present and speak up for my husband when he was unable to do so for himself. Imagine the experience of the many patients who aren’t so lucky. At the very least, no one should have to fight to be treated with kindness and empathy.
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