We've all been there. We've waited for results from some medical test that could change the rest of your life. After Debbie Phillips underwent a biopsy on a lump in her neck, she had to wait more than a week to get her results.
"It really was torturous,” she said.
The stress of waiting fro a diagnosis isn't imagined, according to a study by Dr. Elvira Lang. She compared levels of the stress hormone cortisol in women who were waiting for biopsy results.
“We found women that who had not been told what their results are five days after their biopsies were as stressed as women who had just been told that they have cancer,” explained Lang.
Under federal rules, doctors are required to share results within 30 days, unless a patient is notified of extenuating circumstances.
“If you get an x-ray it’s typically read the same day but that doesn’t mean you can will get those results the same day. If you have a test of a biopsy it may be necessary that it has to be processed in a very special way which may take several days,” said Lang.
But what if several days becomes several months? Or what if you never hear? A recent study found up to 36 percent of test results were delayed as long as 90 days, or patients were never notified, including some with possible malignancies.
Now, the Department of Health and Human Services wants to make sure that doesn't happen. The agency is proposing a rule change that would mean labs would send results directly to the patient as soon as they were available.
“There’s a big movement to give patients access to more and more information and on the whole that can be a fantastic thing,” said Guy Montgomery, PhD, a psychologist with Mount Sinai School of Medicine.
The advantage to that is less wait time.
“You don’t want to be on a Friday evening not having heard about what your result is,” said Lang.
However, the lab work may be technical and confusing so the American Medical Association wants a disclaimer attached to the results, along with a directive to discuss results with your physician to find out what they really mean.
Montgomery agrees adding, “We want to be very careful that we don’t send those patients into a heightened level of anxiety when that’s not really appropriate.”
The proposal is still under review with no date set yet for it to take effect. Meantime, Montgomery cautions patients not to let the waiting consume them.
“Although it’s natural to worry, let’s make sure this is not interfering with things that you want to do in your life,” said Montgomery.
After eight long days, Phillips' test results showed she needed immediate surgery. Even after that she says she had to wait six weeks or so to learn she did not have cancer.
The proposed changes to federal regulations would override existing state laws and give patients access to laboratory test results without having first to talk with physicians who ordered the tests.
Currently, lab results may be sent to patients but only with physician approval: California, Connecticut, Florida, Massachusetts, Michigan, New York, Virginia
Lab results may be sent directly to patients without physician approval: Delaware, Maryland, New Hampshire, New Jersey, Nevada, Oregon and West Virginia, the District of Columbia and Puerto Rico
No state law governs patients' access to lab results: Alabama, Alaska, Arizona, Colorado, Idaho, Indiana, Iowa, Kentucky, Louisiana, Minnesota, Mississippi, Montana, Nebraska, New Mexico, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Texas, Utah, Vermont, Guam, Northern Mariana Islands and the Virgin Islands
The Department of Veterans Affairs does have a policy in place regarding test results:
Results are communicated to patients no later than 14 calendar days from the date on which the results are available to the ordering practitioner. Significant abnormalities may require review and communication in shorter time frames and 14 days represents the outer acceptable limit. For abnormalities that require immediate attention, the 14-day limit is irrelevant, as the communication should occur in the time frame that minimizes risk to the patient.