Continuity of Care and the Benefits of Hindsight

As human beings, we often underestimate the power of denial. Denial is a human truth and one that is hard to fight when the circumstances seem to feed it. Who wants to believe that their 2-year-old son is seriously ill?

With no alarm bells from the healthcare providers closest to them, when the wait to see the specialist was eight months, and an insurance provider denying medically necessary tests, Jenn felt like this was the way it was supposed to unfold. No one said: “You can’t wait eight months; this wait time is not in your son’s best interests. We need to find another way.” In retrospect, Jenn agreed, it was striking that no one had said this to them. With 20-20 hindsight, her perspective is much different.

“I really pride myself on being this very intuitive person. When I think back I realize it must have been this coping mechanism because I just didn’t get it. I didn’t see it. I didn’t get it. Now I know that I need to be an advocate and ask more questions.”

Once their son was transferred by ambulance to the academic medical center specializing in brain tumors and brain cancers and admitted to the pediatric neurology intensive care unit (ICU), it all began to sink in.

“I looked at the nurse, and I said, ‘should we have someone take care of our dog?’ And she takes me by the hand. And she said, ‘you might want to have somebody plan to take care of your dog for a while. It might be a few days and some overnights’. And I’m like, Oh, okay. And that’s finally when it really dawned on me that there was something much bigger happening here.”

Receiving Care at the Academic Medical Center

Their son was diagnosed with a benign brain tumor that required surgery. They remained in that ICU for eight days. It took weeks to get to this place. By the time they did get here, their son was critically ill.

Remembering Bedside Manner

The surgeon who took care of Jenn’s son was amazing–great bedside manner with their young son, an expert in his field, and as Jenn put it, a “straight shooter”. He pulled Jenn and Joe aside to let them know that the tumor in their son’s brain was the size of a racquetball, which is a huge volume in the brain of a two year old.

Here’s Jenn: “And he laid it out for us and said, you know, it’s not cancer, which is good, right? It’s huge. Which is bad. Still, it’s not the worst I’ve ever seen.’ He’s the reason our son is alive.”

In characterizing the experience with the doctors and nurses in the hospital, Jenn recollects it was mostly good. However, as a mother, it’s very hard to watch as your young son goes through difficult medical procedures.

“I am feeling as his mom, he can’t take any more; he’s traumatized. Traumatized. And you get to this place where you realize the healthcare providers need to do their jobs and no matter what they do, how great the bedside manner is, they are not going to touch him in a way that he wants to be touched right now. I mean, is there a good way to do a flu swab or a throat culture in this situation?”

Transition – Discharge to Home & Continuity of Care

This part was hard for Jenn and her family. The neurosurgeon was great, but the office was not. It took several calls before appointments could be scheduled. Because of this lag, Matteo’s stitches stayed in longer than they should have.

It’s many years later, and their son has had continual follow-up. He has remained with the same doctor since the original diagnosis. In the beginning it was an MRI every three months, and now it’s once a year. And through all of this, the same neurosurgeon is reading the scans.

Here’s Jenn: “He’s had MRIs all of his life now, and it’s become part of his life. He knows and accepts that.”

It took several weeks before Jenn and Joe got the diagnosis for their son. Because they were not prepared by their doctor for something “serious” they were blindsided that day in the ER when they were told that their son needed to be admitted to a pediatric neuro ICU for a growth on his brain. By this time, their son’s condition was extremely critical. That first night, they were woken up every hour to make sure their son was still lucid and okay. By the time of admission into the hospital, he was critically ill as the tumor had grown into his brainstem. The headaches were caused by a dysregulation of the brain fluid, which created pressure on his brain. Today, because of the amazing care they finally did receive, they are filled with gratitude for their son’s life.

The Second Crisis: Managing the Bills

One of the greatest difficulties of managing this health crisis came later–as the bills came in.

Here’s Jenn: “There is so little transparency in our billing. We were uninitiated. We lost everything. Every walk to the mailbox was another “trauma.”

Jenn and her husband worked hard to pay those medical bills, and they negotiated mercilessly along the way. Untangling the stack of bills that came from a multitude of healthcare providers was a full-time job. They learned to appeal denials, negotiate for lower fees, and to pay little by little.

Their choice was not to declare medical bankruptcy; they knew they would be in a relationship with these providers for years–so they wanted to be sure they were paid. At the same time, they did not want to pay bills twice, so they set up a system to track the bills as they came in. It’s a difficult situation because the crisis itself has drained and depleted you emotionally and physically. Now the financial battle begins. “How do you fight [the financial battle] that when you have just been bulldozed by this medical issue?”

Hindsight Advice: Get an Advocate and Honor Your Intuition

Jenn’s advice: “If I, God forbid, I had to do this again, my advice would be to get an advocate. I think if you’re in a position to pay for help, pay for help. That would be my first choice. Have somebody who’s not emotionally involved in it by your side. Or ask a friend or a family member who can give a little bit of time. Because I think when you’re emotionally involved, you’re already compromised. You’re already exhausted, and I think you have to focus on taking care of yourself.” Have someone who’s willing to advocate on your behalf.

She continues: “Besides someone to be by your side through the healthcare decisions and discussions, you’ll also need help and advice in terms of the insurance coverage and the bills. I think somebody has to be able to open up the mail and look at the bills and make sure that things have been billed properly and match it with the statements from the hospital. Someone who can help with filing the appeals, pay the bills and argue that out of network stuff. It’s too hard to manage the finances when you need to get well. Your job has to be getting well, and I think even some caretakers are too close to it.”

When asked what’s the one thing she wished she had known in advance; Jenn declares she would not let money or an insurer’s denial of a test stop her from getting that test for herself or her loved one. Consider this, if a procedure is denied by insurance, ask your doctor what’s the best-case scenario and the worst-case scenario if you do not have this test or procedure. Have them lay out the options for you. Have an advocate there with you to write down the answers and ask any follow-up questions. An advocate can be your spouse, a friend, or a professional health advocate. Call your doctor’s office if you forgot a question and really want an answer.