Too Much and Not Enough Help

We had just settled into the hospital room when the phone rang. I answered it.

“Is this Ms. Khoshroo?” a perky female voice asked. “Yes,” I said, while mentally calculating how few hours of sleep I’d gotten the last few nights while my husband was in the ER and then the ICU.

A call from a health insurance case manager

“Hi,” she continued. “This is Meghan from your health insurance. It has come to our attention that your husband…” long pause, papers shuffling in background…”Ahmad has had a serious illness and hospitalization in the last few days.”

“Yes,” I said.

“I am a case manager nurse and am calling to find out how I might be able to help you during this difficult time. Now what, exactly, was his diagnosis, and what is the treatment he has received since being admitted…” long pause while more papers shuffled… "with deep vein thrombosis?”

“I appreciate your call,” I said. “But now is not a good time. We just got into a hospital room, we are both exhausted, and I just don’t have the energy to talk with you right now.”

“I understand, but I am here to make things easier for you.”

Calling at the most inconvenient time

“Thank you, but what would make things easier right now is if I could get off the phone and take a nap before a technician comes in a little while to take my husband for an ultrasound,” I explained.

“We just want to be sure that he is receiving appropriate and necessary care,” she said.

In my mind, I heard, “We just want to be sure we don’t have to pay too much for this hospital stay.”

The irony

“Again,” I said, “I appreciate the call but now is just not a good time. You know, it’s ironic, I have called you guys multiple times over the last few days to try to clarify details about benefits and coverage. After long waits, it is still difficult to get someone on the phone who can answer my specific questions. But yet, it is impressive how you tracked me down in our hospital room. I wish someone would answer the phone that quickly and answer our questions.”

“Well”…throat clearing… "member benefits receives a high volume of calls and cannot facilitate answering every…”

I cut her off.

“I understand,” I said. “But if you want to help me, get me some answers to the questions I’ve been asking, and please don’t ask me to recount all the details of the last four days when I am sleep deprived and sitting in a hospital room. I am hanging up to take a nap now.”

Homework assignments under the guise of "help"

I thought about her call. I thought about how the health care system often managed to be full of well-meaning, hard-working people who truly seem like they want to help patients and families. And yet, at the same time, full of faceless voices who materialize at the least convenient moment and seem to be assigning me homework under the guise of “helping.”

Some weeks later, I was contacted by a nurse navigator who worked for a third-party company that contracted with our insurance to provide navigation assistance to patients with serious illnesses. It was a voluntary program, she explained, and she could help me figure out how to get what I needed from the system.

Working with a nurse navigator

I signed up and appreciated the help for the first couple of months. But then my calls with Wendy really started to feel like work. A home-care nurse would be showing up in 20 minutes, and Ahmad needed another dose of Oxycodone to manage pain, and he needed something to eat before that, and we had to be at the lab in an hour-and-a-half, and all the towels were dirty, and I had no clean socks, and then Wendy would call.

“So, what’s happened in the last week since we last talked?” she asked cheerfully.

I told her about the tip I got from the home-care nurse last week to use an Ace bandage with Velcro as a compression sock if the socks were too tight.

“That’s a great idea!” she exclaimed! “I’m going to share that with all my patients.”

Lamenting a mistake by a chemo nurse

I lamented a mistake by a chemo nurse a few days earlier when she forgot to include the anti-nausea drugs in the chemo bag and then called at 6 pm and left me a breezy voicemail about the oversight. I was livid.

“Well, it happens,” Wendy said, after I told her the story. I pictured her filing her nails as she said it.

“I once forgot to give a patient his anti-seizure med and he had a seizure.”

At that moment, I knew Wendy and I were through.

True help for overburdened caregivers

Our healthcare system is starting to pay lip service to helping caregivers. And it’s starting to offer tangible help. But true help is something that doesn’t add another “to do” to an already overburdened caregiver. Hearing from caregivers, supporting caregiver research, and giving feedback to healthcare systems are small, specific steps advocates can take.