The Puzzling Partnership of Cancer Parent and Social Worker

NatSick
By Suzanne Leigh

Of all the hospital staff that crossed our path during Natasha’s brain tumor treatment, our relationship with social workers was the most confounding. Our interactions were typically prolonged, awkward and empty, and usually ended with us flubbing our way through a polite response to open-ended questions.

I understand the value of the open-ended question from working as a local newspaper reporter. Generally, it is more likely to prompt a response that reflects one’s true feelings. And from a reporter’s perspective, it’s more probable that it will lead to a good quote (and once you had a good quote, that took care of your intro and when that was out of the way, the rest of the story would follow relatively effortlessly).

“I’m over the moon and ready to take the vacation of a lifetime!” would be the response to an open-ended “how are you” to a lottery winner. Whereas the closed-ended approach might get you no more than a “yeah.” Not the best quote for the front-page story that you hoped would regenerate the sluggish advertising revenue of the Boondock Daily Bulletin.

When open-ended fails

But the open-ended technique can tank in the context of the hospital social worker checking in with the parents of pediatric cancer patients.

 “Is there anything you need?” was the question that followed the tentative knock on the door when Natasha was hospitalized. This seemed about as helpful as a waiter asking us what we wanted for dinner when no menu was presented.

“No, thank you,” we would say.

[Long pause …]

“Are you sure – anything at all?”

“Yes, we’re sure.”

[Another long pause …]

“Well, if something comes to mind, let me know.”

“OK, thank you.”

“Thank you!”

Sigh.

(Yes, I did fantasize about ending that exchange with a toss of my car keys and a request to go home,  change the kitty litter, do a couple of loads of laundry, find a clean shirt that matched my pants and bring back a towering cappuccino. Oh and pronto, please.)

Actually, our concerns were numerous and onerous. We worried that our health insurance would stop covering our daughter’s treatment; we worried about living expenses now that both of us had had to quit work; we worried that our younger child was getting short shrifted and above all, we worried that our daughter would die. But sharing this with a stranger with an ambiguous job description — albeit one with “LCSW” on their business card — is contrary to how many of us seek solutions to the obstacles that overwhelmed us in the years of dealing with Natasha’s diagnosis.  Closed-ended questions to gauge interest in resources such as financial aid, food banks, paid family leave, drug companies’ compassionate use programs and nonprofits that make wigs for children with cancer would have been much more helpful.

Off the radar parents

Two-and-a-half years after Natasha’s initial diagnosis, I noticed a fellow cancer mom with a disabled parking placard. We had been paying $3.50 per hour in the hospital parking lot during Natasha’s many appointments and hospitalizations. In fact, Natasha had qualified for a disabled placard much earlier on in her treatment, but that information — which would have saved us $$$$ — was never given to us.

A conversation with an RN shed light on why social workers let many cancer parents roam off their radar (save for the perennial “anything you need” question). The hospital’s focus is the patient’s health and welfare. So a social worker’s priority has to be those parents with issues that might jeopardize the patient’s care: an undocumented resident who had hopped the border in a desperate attempt to save their child’s life at an American hospital, those with no medical insurance coverage, those with addictions or embroiled in a child custody tussle that could threaten access to treatment. That leaves out a lot of us.

‘Anything you need?’

When Natasha’s care was transferred to hospice, we were disheartened to learn that another social worker would be visiting us at home. Our family of six, which included two adult relatives, sat in the living room waiting with trepidation.

“Is there anything you need?” said our new social worker.

“Mom, how about you?” she asked, turning to me.  “Is there anything you need?”

“No, thank you.”

“Dad, how about you? Is there anything you need?”

This dialogue lumbered on with all six members of the family for an uncomfortable 25 minutes, while Natasha sat on the couch mute and motionless in a place where nobody could reach her.

A week later she called and asked if she could stop by and check in with us again. We declined. Our time with our daughter was painfully precious and painfully limited.

 Two weeks later, Natasha passed away. Strangely, but mercifully, the social worker never called.

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