How Out-of-Towners Stay in the Loop

The challenges of caregiving from a distance. 

BY MARC SILVER
PUBLISHED: MARCH 10, 2008
Two things were bugging Annette Clark: endometrial cancer and a dirty chandelier in her San Francisco home. Every six weeks or so, devoted daughter Kim Clark would fly in from Maryland to lend support in her mother’s battle against cancer and to attend key doctor’s appointments. But when Annette asked Kim to clean the bedroom fixture, Kim figured it wasn’t such a high priority. 

Then Annette’s son and daughter-in-law came in from Norway, where they’d been living, for a visit. Annette mentioned the chandelier; the daughter-in-law started cleaning.

“I wasn’t listening,” Kim says. “Her daughter-in-law was more objective. She listened, and that made my mom happy.” For Annette, the dirt on the chandelier was a reminder that coping with cancer made it harder to keep up with household chores. “You don’t want to see a downsliding of care in your home,” Annette says.

“The long-distance caregiver is often behind, but needs to be ahead of the game,” says Hester Hill Schnipper, chief of oncology social work at Beth Israel Deaconess Medical Center in Boston. Getting ahead requires asking very specific questions about all sorts of matters. Is getting to doctors’ appointments a problem? Is the patient eating enough? Taking all the pills prescribed? And what’s the prognosis?

In the best of circumstances, an on-scene family member or friend can brief out-of-towners via phone calls, e-mail blasts, or a personalized website. Still, a long-distance caregiver might want to plan a visit to coincide with initial doctors’ appointments. The patient gets an extra pair of ears, the caregiver puts a face to the doctor, and the doctor gets to know the patient’s family.

On subsequent visits when decisions about treatment are discussed, an out-of-towner who has taken on an advisory role can ask to be conferenced in on a speaker phone. That’s what Kim Clark does. She’s frustrated, though, when conversations occur in the phone-less examining room. Julia Bucher, RN, PhD, a nursing professor at York College of Pennsylvania and co-editor of the American Cancer Society’s Complete Guide to Family Caregiving, proposes the cell phone solution: Make sure the patient has one and knows how to use the speaker option. 

The question isn’t what technology is available but what are the needs of the person in treatment. 

Then there’s the HIPAA privacy form, a document that both long-distance and up-close caregivers should know about. If the patient signs, the doctor can speak directly about the case to designated family members. So the caregiver can ask questions the patient may not be willing to ask.

If a doctor is hard to reach by phone, a distant caregiver might try making an appointment for a 20-minute call. In any discussion with a doctor or nurse, you don’t want to waste time going over basics that can easily be obtained elsewhere. Cancer websites that dangle .org, .edu, or .gov suffixes are more apt to have the most accurate information. 

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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