Raylyn Clark’s 3-year-old daughter, who has Type 1 diabetes, was hospitalized in March 2023 after her tonsils were removed. Clark expected the medical staff to have a general understanding of her daughter’s diabetic needs, especially since she had received her diabetes diagnoses from the same hospital in 2022.
But this time things were different.
Clark, a Kansas mother of three who was with her daughter throughout her hospitalization, says she had to advocate extensively to ensure her daughter received the right diabetic care.
At one point, when her daughter’s blood sugar levels plummeted, Clark asked for the doctor to be paged but was taken aback by the hospital staff’s nonchalant response.
“They needed to understand that she could have serious complications — and the doctor just sauntered in — and then it took a good 30 minutes until they brought her the glucose bag,” Clark said.
Clark reported that she had a Glucagon shot that she always carries with her and was going to use it if they didn’t bring the glucose, but she never expected to have to rely on her daughter’s emergency medication while in a hospital.
Her experience is not an anomaly.
Though patients report they generally trust their primary care doctor, concerns over patient care in U.S. hospitals have risen. Recent studies show medical errors are a significant problem in hospitals nationwide. A study in The New England Journal of medicine found that nearly 1 in 4 patients experienced a harmful, adverse event in the hospital — many of which were preventable. Staffing shortages compound the situation, with many health care workers leaving the field after working in grueling conditions during the height of the COVID-19 pandemic.
Concerns over medical gaslighting — when medical professionals invalidate or dismiss patients’ questions, symptoms or complaints — are also rising. This can lead to delayed diagnoses, treatment and adverse health outcomes.
“There is a spectrum patients can experience, from feeling like their concerns are being dismissed all the way to patients being told outright that what they are feeling is not actually real,” said Caitlin Donovan, senior director of the Patient Advocate Foundation.
Donovan says this can happen to all patients, but marginalized patients are particularly at risk. Research shows that traditionally marginalized patients face additional barriers when accessing comprehensive medical care and that women’s pain is frequently dismissed.
“They needed to understand that she could have serious complications — and the doctor just sauntered in — and then it took a good 30 minutes until they brought her the glucose bag.” ― Raylyn Clark, a Kansas mother of three
Aileen Weintraub, the New York author of “Knocked Down: A High-Risk Memoir,” told HuffPost that she recently had an endoscopy in the hospital and after she was discharged she fainted in her kitchen. Her doctor was dismissive. “He said I was probably just dehydrated — I wasn’t dehydrated, I already had three full glasses of liquids — but he just said I will be fine.”
Weintraub developed excruciating pain and later went to the emergency room. After multiple tests, they couldn’t identify the problem. Weintraub then switched to another doctor, who ordered additional imaging and found the cause of her pain: her spleen had been punctured during the endoscopy. “My new doctor said I was very lucky. A punctured spleen could lead to sepsis, other infections and serious consequences,” Weintraub said.
With patient concerns rising, public health experts report it’s important that patients and caregivers feel empowered to address potential challenges they may experience in a health care setting. Here’s how:
Know your rights.
Patients and caregivers should familiarize themselves with their state (and the hospital’s) policies on patients rights.
The American Hospital Association has created a patient’s bill of rights that serves as a guideline for hospitals nationwide. Many states have also enacted laws to protect these rights.
Patients and caregivers who are engaged in the process and are informed about their rights often have better health outcomes, and even if certain rights aren’t enshrined into law in a patient’s state, patients and caregivers should still review these guidelines in case they need to advocate for better care.
Be the squeaky wheel.
Patients have the right to advocate for themselves, but sometimes they may be hesitant. They don’t want to be seen as difficult or a “bad” patient, but patients shouldn’t have to accept subpar care, Donovan said. “Be the squeaky wheel while maintaining diplomacy” she said.
Family members and close friends also play a crucial role in helping patients by asking questions, taking notes and ensuring the right medication is being dispensed.
“Caregivers can and should be prepared to advocate for loved ones. Don’t be afraid to speak up and ask questions. People going through a difficult medical situation don’t always have the ability to think quickly or make split-second decisions. I was lucky enough to have a family member meet me at the ER and support me through that difficult night,” Weintraub said.
Know your care team.
Dr. Heather Bartos, a physician in Frisco, Texas, told HuffPost that it’s important to know who your providers are. The patient’s nurse should be listed on a board in every patient’s room, and Bartos recommended taking a photo of this or writing it down each day, in case there are any follow-up questions or concerns.
Bartos also recommended creating a one-page health summary to have on hand. “Include the most important details: allergies, surgical history, medications, emergency contact. Use neon-colored paper so it’s visible, and cover it in a plastic sleeve and keep this in the patient’s room for medical staff to see.”
Bartos also suggested talking with children, particularly as they get older, about medical questions they may be asked and have them practice how to answer so they learn how to advocate for themselves in age-appropriate ways.
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Communicate in a clear and concise manner.
It’s important to be concise, quantify symptoms (level of pain, frequency) and give specific examples of how a medical issue affects the quality of the patient’s life, Donovan said.
Donovan also suggests that patients and caregivers document who they speak with and photograph paperwork they sign.
Patients and caregivers who feel their concerns are being dismissed have a right to know why their provider may think something isn’t a more serious issue (maybe sufficient testing was done, the patient is low risk, etc.). “Ask them to explain why they think this is something the patient doesn’t need to be concerned about,” Donovan added.
Work with an advocate.
Most hospitals have patient advocates (titles vary by facility — advocate, liaison, patient representative) or a hospital social worker who can provide assistance.
They can’t change a medical diagnosis, but they can help with issues that arise, including concerns over a patient’s discharge from the hospital.
“Advocates can be a good starting point for addressing problems, and it creates a record that an issue has been reported, but oftentimes patients may not know these resources exist,” Donovan said.
After a complaint is made to an advocate, it’s important to follow up. “Be the squeaky wheel in the beginning and in the end,” Donovan added.
Ultimately, advocates do work for the hospital, and if they’re unable to assist in a resolution, patients can go up the chain of command. Weintraub took her concerns to hospital administrators and said steps should be taken to prevent this from ever happening again. Her complaint is pending.
Depending on the circumstances — external agencies have their own criteria for what they investigate — patients may be able to file a complaint with the health department, the medical board and the Joint Commission (an organization that investigates patient safety in the U.S.). Since insurance companies pay the providers, patients also have the option to file a complaint with Medicaid, Medicare or a private insurance company.
Patients and caregivers looking to explore legal options can contact the American Bar Association to locate resources in their community.
Bartos said that ultimately communication is key. “It’s important for patients, caregivers and medical staff to have open communication and for patients to have agency in their health care.”