When she broke her ankle, Kim Johnstone enlisted her husband’s help to see a doctor. Initially it was for obvious reasons — driving solo was out of the question. But Johnstone also found his presence helpful in the exam room, where he became a second set of ears and a source of emotional ballast.
“I was able to feel calmer knowing he would be there with me, and less anxious that I’d forget to ask questions or remember information that the surgeon or nurses shared with me,” says Johnstone, 40, a social media manager.
During doctor’s appointments, Hailey Hudson’s mom jogs her memory when her own recollection fails. But what Hudson appreciates most about having her mom by her side is the way it gives her the courage to find her voice.
“I might not feel comfortable asking a follow-up question, disagreeing with [doctors] on something or pushing back in any way,” says Hudson, 21, who has multiple chronic illnesses. “She helps the communication flow more smoothly.”
Bringing someone to a doctor’s appointment is an informal practice that’s been around for ages. In the medical literature, patients’ plus-ones have variously been described as care partners, family supporters, visit companions, support persons and, more recently, health supporters.
Some health supporters are trained in the role, but most are just friends or family members helping out. Their job is to be there for and with patients, not only when they need surgery (post-op escorts are often mandatory) but also during routine appointments.
“Sometimes people think they shouldn’t bring someone unless there is a dire situation or an important decision to make,” observes health-supporter researcher Dr. Ann-Marie Rosland,
an associate professor of internal medicine at the University of Pittsburgh. “But supporters can be helpful in any situation. Even the most routine healthcare can be pretty complicated these days.”
Who uses health supporters?
While anecdotal evidence points to the longstanding popularity of these plus-ones, Rosland says researchers are just catching on to the trend. So far, most studies on health supporters have focused on their use among elderly patients or those with chronic illnesses. Last year, when Rosland and a research team examined how health supporters affect patients with diabetes, they linked supporter use with better management of glucose levels and higher levels of self-care among patients.
Surveys of people with chronic illness suggest that health supporters run the gamut, from parents and spouses to friends and roommates. As patients’ health worsened, one interesting study found, plus-ones were less likely to be spouses and more likely to be friends or adult children. Study authors didn’t try to explain why.
That same paper showed that nearly 40 percent of Medicare patients routinely brought supporters to their medical visits. These patients rated their doctor’s medical abilities, interpersonal skills and communication more favorably than those who went alone. This was especially true when the helper took an active role in talking with the doctor on the patient’s behalf.
Other research underscores the variety of ways in which patients make use of health supporters. These helpers help patients remember the medical symptoms they want to share with doctors, as well as the questions they want to ask during their initial visits. Afterward, supporters are around to rehash appointments and help patients remember medical advice.
Are doctors getting on board?
Even though research shows that health supporters can be hugely beneficial to patients, some doctors would rather they stay in the waiting room. Such resistance, experts suggest, might be tied to the dwindling amount of time doctors get to spend with patients, or concerns that health supporters could interfere with the doctor-patient bond. Some providers may also have misplaced fears about privacy violations related to HIPAA, the 1996 federal privacy law that specifies what providers need to do to keep patients’ health information safe.
In response to HIPAA’s passage, Rosland says, some healthcare systems “went overboard thinking that patients shouldn’t bring others in the room.” At this point, though, HIPAA’s been the law of the land for more than two decades, and Rosland says attitudes regarding guests in the exam room are changing. Increasingly, both doctors and patients are acknowledging the benefits of shared care and shared information in medicine. Today, she adds, health supporters are also using patient portals on patients’ behalf to access medical information.
“There is more recognition that the best healthcare requires a team approach,” she says. “The best way to think about it is ’What are helpful roles for the supporter to play during the visit?’”
Do patient privacy laws apply?
HIPAA established boundaries for the use and dissemination of medical records and personal health information. Among other things, the law prohibits a doctor from sharing a patient’s medical information without their consent. But if a patient shares their own medical information with someone else, HIPAA no longer applies, notes Margaret Riley, a professor of law and public health sciences at the University of Virginia.
“The individual controls their own privacy in this context, and it doesn’t have to be in writing. They can do it through their actions,” she explains. “The moment they bring in a spouse or trusted companion [to the exam room], they’re implicitly saying, ‘I’m waiving HIPAA.’”
Even though HIPAA doesn’t preclude supporters from tagging along, some supporters say doctors make it hard for them to play an active role in patients’ care. In one national survey of health supporters, conducted by researchers at the University of Michigan, more than one-third of respondents said providers neglected to share information with them during visits, while about 20 percent said providers ignored their input.
Doctors aren’t the only source of complaints for supporters. In the survey, more than half of respondents said they thought patients downplayed their health problems to doctors, while a smaller percentage felt that patients exaggerated their symptoms. They also reported bickering with patients over doctors’ advice and feeling as though they didn’t know enough about patients’ conditions to be helpful.
Still, evidence over the years has linked social support by helpers to positive patient outcomes; most patients who invite supporters along find the extra help to be beneficial. A California Health Care Foundation report noted that more than 70 percent of chronically ill adults said they want more support, not less, from loved ones and friends in their healthcare.
Megan Lane’s experience shows the difference a loved one can make in the exam room. The 29-year-old was worried that her primary care doctor wouldn’t prescribe a medication she’d been taking for anxiety and agoraphobia. So she brought her father to her appointment.
As Lane predicted, her doctor denied her request. Then her dad chimed in. Together, they explained just how important the prescription was to Lane’s wellbeing. Having that backup in the room made all the difference. “Worked like a charm,” Lane says.