Challenges & Choices is an ongoing series where we tackle the most difficult questions in cancer care. From finances to end-of-life care, we will explore how you can be prepared with practical information, ways to find emotional support, and stories from people who have been there.
It was spring 2010, and Julie Meyer Taylor, a mother of three boys in Phoenix, Arizona, was living through a parent’s nightmare. Taylor had noticed that one of the eyes of 2-year-old Andrew, her youngest, appeared to be bulging. She hoped for a benign explanation. But when she asked a neurologist friend to take a look, the alarm bells went off.
“I would take him to the hospital today,” the friend told her.
There, the diagnosis came in: Ewing sarcoma, a cancer that develops in bone or soft tissue, usually in children, was positioned behind Andrew’s eye, wrapped around his optic nerve. Fortunately, Taylor says her son was able to receive quality medical care from a top children’s hospital in the region, where a surgeon carefully removed the tumor and oncologists started chemotherapy and radiation treatment. But unfortunately, everything else about the hospital left Taylor emotionally distraught, she says, including cold bedside manners from care providers, limits on family visitors and frequent interruptions at night.
“When your 2-year-old has cancer, you kind of expect empathy and some compassion,” Taylor says. “But it was so cold and uncaring that it was shocking to me.”
Taylor’s dissatisfaction grew so great that her family made the difficult decision to switch treatment to another hospital that had just opened, where she knew someone on the nursing staff. In retrospect, Taylor says it paid off. Andrew’s treatment was successful, and the family liked the new hospital better. But at the time, it felt risky.
“It was kind of, am I going to be making the right decision?” Taylor recalls. “We’re leaving the preeminent pediatric oncology hospital to go somewhere else.”
Experts familiar with the reasons why cancer patients change care providers say such decisions are fraught with complexity.
On one hand, seeking out a different provider can result in life-changing outcomes, says Anne Schott, a medical oncologist at the University of Michigan’s Rogel Cancer Center. Because Rogel is a National Cancer Institute-designated cancer center, a significant number of the 800 breast cancer patients seen there each year come from another practice, especially patients with advanced cancers, Schott says.
For Schott, there’s nothing wrong with patients in such precarious situations deciding to pursue consultations or even treatment with other providers. “One could argue that everybody should get a second opinion if they have an advanced or lethal cancer,” she says.
In 2011, Sabrina Mayhew was preparing to have chemotherapy when she was referred to oncologist Anne Schott at the University of Michigan’s Rogel Cancer, who changed the course of her treatment.
But seeking out a new care provider also comes with risks, says Marij Hillen, a researcher and associate professor at Amsterdam University Medical Center in the Netherlands.
One may encounter practical pitfalls, such as increased travel distances or medical costs, which can be particularly perilous for patients with financial hardships. But some concerns aren’t as obvious. Data from Hillen’s research shows that while nearly two-thirds of cancer patients who sought a second opinion expected medical advice that diverged from what they received from their first provider, only one in 10 patients received different advice.
That gap leads Hillen to question to what extent second opinions can be psychologically disappointing for patients, add costs, or even result in meaningful delays in starting treatment.
“There’s a lot of discussions about second opinions [in the Netherlands]: Should we keep funding this?” Hillen says. “What is the actual value in medical terms? … I can’t give a conclusive answer to that.”
Schott says that, in her experience, patients seeking a switch from another provider to her care are motivated just as often by nonmedical reasons as by treatment decisions. In addition to concerns about a facility’s policies—which is what motivated Taylor during her son’s treatment—some cite delays in care, offices not responding to calls and other points of friction with their doctors or health system.
Changing oncology centers can be disruptive to care. Consider the risks and alternatives before making the move.
Experts offer the following recommendations before a cancer patient looks for a new care provider.
- Talk to your current provider. Research shows a lack of communication can be a big reason why patients switch care providers, sometimes unnecessarily. It’s OK to ask your doctor for more information about why they selected a particular course of treatment, which often is based on standard medical guidelines.
- Manage expectations. Studies have found patients expect a different treatment recommendation from a second opinion or that they’ll switch care providers far more often than actually occurs. That can cause disappointment and anxiety in the patient.
- Consider the pros and cons. Traveling further distances to receive care from a new provider can be more stressful than some patients anticipate, experts say. Delays in treatment can also be detrimental. Anne Schott, a medical oncologist at the University of Michigan Rogel Cancer Center, says second-opinion providers will sometimes recommend against a transfer for these reasons. Or they’ll recommend waiting for a time when a change will be less disruptive to care, such as at the conclusion of a particular treatment, to make a switch.
- Confirm the details. A significant increase in costs is a paramount concern. Experts say patients should always check to see whether a prospective treatment facility and the doctors who would be providing care are in-network with their medical insurance. Different health systems also rely on different software, which can sometimes lead to delays in the transfer of medical records.
When a patient has a problem with their doctor’s recommendations, Schott says, it often comes down to a communication issue. She’ll recommend the exact same treatment method as the first clinician, based on the same medical guidelines, but it’s apparent the patient did not clearly receive or understand the reasons behind the original care provider’s recommendation.
“A lot of times, it’s because the doctor doesn’t communicate,” Schott says. “Then the reason they want to change is, ‘Well you explained it to me … I feel more comfortable.’”
Hillen says data back this up, with one of her studies finding that while 25% of cancer patients said they sought a second opinion because they needed more information, only 5% of oncologists anticipated that motivation.
“There’s a lot to be gained in communicating with your medical team,” Hillen says. “Not everyone is always made aware by the health care professionals that many things a clinician says are not their personal opinions but based on really solid guidelines.”
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