Struggling with cancer - and government forms

Struggling through what might be the last year of her life, Laura DeLong Smith heard some good news in late May.

A counselor from the American Cancer Society told her she qualified for a Social Security program that gives monthly disability checks to people with terminal cancer. She was elated.

The counselor coached her on what to say so that processors at the federal agency would steer her to the Compassionate Allowances Program. Smith made the call, sat for a lengthy phone interview and went down to the Social Security office to sign a medical release form.

Then it got ugly.

She received an eight-page form at her Virginia Beach home asking question after question that seemed strange for someone with a terminal illness: Was she left- or right-handed? What were her hobbies? Did she have pets? Did she make her own meals?

The form asked about her shopping habits, her household chores. Did she walk, ride a bike, drive or ride in a car or do all of them? It asked how her illness affected her ability to dress, bathe, care for her hair and use the toilet. It asked how she got along with police, bosses, landlords and other authority figures.

The "function report" also wanted her to describe in a narrative the details of her day "from the time you wake up until going to bed."

Smith, who tries to maintain a cheery disposition despite her illness, was outraged.

"My hobbies? My hobby is trying not to throw up after chemo," she said. "What does it matter what I eat every day? I'm dying."

Her two-year battle with ovarian cancer became terminal earlier this year. Chemotherapy took away all her hair, and the accompanying nausea stole her appetite. She spends a lot of her day lying on her couch, exhausted.

Worst of all, she's had to make plans for someone else to raise her 5-year-old son.

She's grappled with how much to tell him about her illness and how to prepare him for what is coming next. She is not sure she'll see her 49th birthday in October.

Before her illness, Smith had been a clinical medical assistant for 25 years and had some experience with childhood cancer patients.

She thought the Social Security form was sent to her by mistake. She called the local office - twice - for an explanation.

She was told that she had to fill it out or she wouldn't get the money. Everyone has to do it, she was told.

Smith complied, but was blunt in her descriptions of her life.

She wrote that she can't describe what she cooks. "I don't prepare food because I don't eat."

When asked if she "noticed any unusual behavior or fears" Smith responded, "I'm pretty sure all my fears are normal for someone dying of cancer."

To a question about which hand she favors, she wrote, "Does it help you to know this?"

Smith said she doesn't want anyone's pity - she just hopes that going public will provoke Social Security officials to change their rules.

"I hope that the next person who comes along with terminal cancer doesn't have to put up with this humiliating experience," she said.

Smith's story isn't unique, said Sean Powell, Smith's patient advocate at the cancer society.

Powell said he coaches clients to make clear when they call Social Security that theirs are "TERI" cases - terminal illnesses that require special handling.

But clients often end up talking to someone "who doesn't understand the process at all," he said. "The joke with us who work with Social Security is that you call them 10 times with the same exact question and you get 10 different answers.... It's very frustrating."

Mae Novak, a Social Security Administration spokeswoman who looked into Smith's case, said the function report is used to determine eligibility for many programs, not just those serving the terminally ill.

She described it as a "shotgun approach" to collecting information about prospective clients, used when Social Security officials haven't received medical evidence that they qualify for a benefit. The questions about daily activities help determine what level of disability payments a person should receive.

If Social Security already has a terminally ill client's medical information, the client shouldn't have to fill out the form.

But Novak said it's possible that in Smith's case, different people at the agency were doing similar tasks without each other's knowledge. The agency has a mandate to process terminally ill patients' claims rapidly, she said.

For example, one official may have automatically mailed the function report form to Smith without knowing that another already had the medical information needed to make the decision, she said.

Novak said it's important to remember that Smith was able to get her application processed quickly and will start getting payments this month.

"The agency is pleased at the speed at which she was being serviced."

Bill Bartel, (757) 446-2398, bill.bartel@pilotonline.com