Patients routinely treated disrespectfully?
The need for trust and support
Dr. Auguste Fortin, a professor at the Yale School of Medicine, identified a circumstance in which a patient does have the opportunity to mention a symptom (he also used a headache, as an illustration) but not what concerns the patient about the symptom. If the patient “worries that that headache is due to a serious condition, but does not have a chance to convey that to the doctor, the patient winds up leaving the office with the same worry.” Furthermore, he added, “The result is that the patient does not feel fully heard, understood and cared for. The patient feels disempowered, stymied, unsupported and alone.”
Dr. Calvin Chou, a professor at the UCSF School of Medicine, emphasized the barrier to trust that can develop when a patient doesn’t feel that his or her time, effort, and complaints are being taken seriously or does not feel that he or she is being treated with respect. He said that from a “personal standpoint,” when he is a patient, he trusts physicians more when they “look at me, hear my issues, and resolve to do something about it.” On the other hand, when he finds himself “talking to the physician’s back trying to explain how my symptoms are affecting me,” that physician does not earn that trust, and consequently, does not earn a return visit: “I have not been back to those latter physicians, and, unfortunately, they have been more numerous than I would hope for.”
Negotiating the system
The Empowered Patient Coalition’s Hallisy, speaking both from her personal experience as the mother of a seriously ill child and from her years as an advocate, emphasized the difficulty that many patients have when they are forced to navigate a complex “hospital hierarchy” on their own.
“I struggled just to understand how all of these people fit together and what their title and role actually meant,” Hallisy said. It was, she continued, very difficult to “find the appropriate person to turn to,” and consequently she “spent a lot of time asking the wrong person [her] questions.”
Furthermore, doctors and nurses weren’t always helpful when it came to explaining the hierarchy.
“Often there are a lot of resources in hospitals to help patients,” Hallisy said. “But patients need to know about them, and that needs to be done in a more explicit way than simply handing them a brochure when they’re signing in, at a time when they’re already nervous, when maybe they haven’t eaten all day, and aren’t prepared to process that information.”
If no one helps patients figure out the system, she said, “they’ll never get up to speed. They’re always going feel behind the eight ball, struggling to understand and comprehend what they’re being told.”
Please tell me what is going on
Sometimes, the problem is not finding the right person to speak to, but the unwillingness of the right person either to be answer questions fully or to give the patient a concrete and understandable treatment plan.
“When you’re dealing with a critically ill patient, like we were, you want to understand the illness, to know what to look for at the bedside, what to alert the doctors about,” said Hallisy. “Those answers are difficult to get.” (See box below.) “Sometimes it was just withheld, sometimes it was given to us in a very confusing way, sometimes people were just too busy. Even when we got the information, it was often in a very piecemeal way, which was not effective. In that situation, you feel desperate, panicked, like you’re begging for information.”
Adding to a family’s burden: the battle to get information
Julia Hallisy, founder of the Empowered Patient Coalition, has first-hand experience dealing with navigating complex hospital systems. Her daughter, Kate, was diagnosed with cancer as a baby, and was in and out of the hospital until she died at age 10.
At one point, Kate developed a hospital-acquired infection. Hallisy relates that Kate “was on life support in the pediatric intensive care unit for seven weeks, often hanging on by a thread.”
“We were panicked, we were terrified. I told people at the time it felt like I was in quicksand, and someone was throwing me a rope, but I just kept sinking.” She continued, “Being a parent, you feel that it’s your responsibility to take care of your child. We really felt like we were crying out for help, that we were desperate for information.”
That information, however, often eluded them. “Sometimes the information was just withheld, sometimes it was given to us in a very confusing way…sometimes people were just too busy.”
“Even when we got the information, it was often in a very piecemeal way…In that situation, you feel desperate, panicked, like you’re begging for information.”
A particularly difficult part of the experience, Hallisy said, was trying to convey to doctors that they “just wanted to understand what was going on, how to help, what kinds of things to look out for.”
Hallisy described her emotions at the time as “beyond frustration,” more akin to “emotional trauma.”
Elizabeth French, a lecturer in Health Behavior and Health Education at University of North Carolina at Chapel Hill, argued that, often, the “culture of health care organizations” led patients to feel “as if it’s not their place to push.” While the problem, according to French, is particularly acute for “vulnerable, more marginalized patients [such as] those with less education, lower income, those for whom English is not a primary language,” it remains an issue that “affects all patients.” Patients feel as though “they don’t know what to ask, or they know they need to ask questions but they don’t know when or to whom,” French said.
The impact, French continued, is that patients “feel helpless, hopeless.” Even though patients who do have the temerity to ask questions, French said, sometimes find that they are “slapped down by health care providers,” causing them to “feel embarrassed or stigmatized [or] disempowered.” This feeling, French said, leads patients to think, “I’m not going to stand up again.”