Almost all new parents go through it: the distress of hearing their child scream at the doctor’s office. They endure the emotional torture of having to hold their child down as the clinician sticks them with one vaccine after another.

“The first shots he got, I probably cried more than he did,” said Remy Anthes, who was pushing her 6-month-old son, Dorian, back and forth in his stroller in Oakland, California.

“The look in her eyes, it’s hard to take,” said Jill Lovitt, recalling how her infant daughter Jenna reacted to some recent vaccines. “Like, ‘What are you letting them do to me? Why?’”

Some children remember the needle pain and quickly start to internalize the fear. That’s the fear Julia Cramer witnessed when her 3-year-old daughter, Maya, had to get blood drawn for an allergy test at age 2.

“After that, she had a fear of blue gloves,” Cramer said. “I went to the grocery store and she saw someone wearing blue gloves, stocking the vegetables, and she started freaking out and crying.”

Pain management research suggests that needle pokes may be children’s biggest source of pain in the health care system. The problem isn’t confined to childhood vaccinations either. Studies looking at sources of pediatric pain have included children who are being treated for serious illness, have undergone heart surgeries or bone marrow transplants, or have landed in the emergency room.

“This is so bad that many children and many parents decide not to continue the treatment,” said Stefan Friedrichsdorf, a specialist at the University of California-San Francisco’s Stad Center for Pediatric Pain, speaking at the End Well conference in Los Angeles in November.

The distress of needle pain can follow children as they grow and interfere with important preventive care. It is estimated that a quarter of all adults have a fear of needles that began in childhood. Sixteen percent of adults refuse flu vaccinations because of a fear of needles.

Friedrichsdorf said it doesn’t have to be this bad. “This is not rocket science,” he said.

He outlined simple steps that clinicians and parents can follow:

• Apply an over-the-counter lidocaine, which is a numbing cream, 30 minutes before a shot.
• Breastfeed babies, or give them a pacifier dipped in sugar water, to comfort them while they’re getting a shot.
• Use distractions like teddy bears, pinwheels, or bubbles to divert attention away from the needle.
• Don’t pin kids down on an exam table. Parents should hold children in their laps instead.

At Children’s Minnesota, Friedrichsdorf practiced the “Children’s Comfort Promise.” Now he and other health care providers are rolling out these new protocols for children at UCSF Benioff Children’s Hospitals in San Francisco and Oakland. He’s calling it the “Ouchless Jab Challenge.”

If a child at UCSF needs to get poked for a blood draw, a vaccine, or an IV treatment, Friedrichsdorf promises, the clinicians will do everything possible to follow these pain management steps.

“Every child, every time,” he said.

It seems unlikely that the ouchless effort will make a dent in vaccine hesitancy and refusal driven by the anti-vaccine movement, since the beliefs that drive it are often rooted in conspiracies and deeply held. But that isn’t necessarily Friedrichsdorf’s goal. He hopes that making routine health care less painful can help sway parents who may be hesitant to get their children vaccinated because of how hard it is to see them in pain. In turn, children who grow into adults without a fear of needles might be more likely to get preventive care, including their yearly flu shot.

In general, the onus will likely be on parents to take a leading role in demanding these measures at medical centers, Friedrichsdorf said, because the tolerance and acceptance of children’s pain is so entrenched among clinicians.

Diane Meier, a palliative care specialist at Mount Sinai, agrees. She said this tolerance is a major problem, stemming from how doctors are usually trained.

“We are taught to see pain as an unfortunate, but inevitable side effect of good treatment,” Meier said. “We learn to repress that feeling of distress at the pain we are causing because otherwise we can’t do our jobs.”

During her medical training, Meier had to hold children down for procedures, which she described as torture for them and for her. It drove her out of pediatrics. She went into geriatrics instead and later helped lead the modern movement to promote palliative care in medicine, which became an accredited specialty in the United States only in 2006.

Meier said she thinks the campaign to reduce needle pain and anxiety should be applied to everyone, not just to children.

“People with dementia have no idea why human beings are approaching them to stick needles in them,” she said. And the experience can be painful and distressing.

Friedrichsdorf’s techniques would likely work with dementia patients, too, she said. Numbing cream, distraction, something sweet in the mouth, and perhaps music from the patient’s youth that they remember and can sing along to.

“It’s worthy of study and it’s worthy of serious attention,” Meier said.

This article is from a partnership that includes KQED, NPR, and KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice.

Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the run-around that so many people face when they interact with America’s uncoordinated health care system.

Gilliam’s orthopedic surgeon, who managed previous difficulties with her left knee, saw her that afternoon but told her “I don’t do ankles.”

He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience’s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)

“The burden of arranging everything I need — it’s huge,” Gilliam told me. “It leaves you with such a sense of mental and physical exhaustion.”

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

“The good news is we know so much more and can do so much more for people with various conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is the system has gotten overwhelmingly complex.”

That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems — say, heart disease, diabetes, and glaucoma — interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)

That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year.

“Some of this may be very beneficial and valuable for people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the “treatment burden” that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.

Four years ago — in a paper titled “Is My Patient Overwhelmed?” — Montori and several colleagues found that 40% of patients with chronic conditions such as asthma, diabetes, and neurological disorders “considered their treatment burden unsustainable.”

When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.

Older patients’ difficulties are compounded by medical practices’ increased use of digital phone systems and electronic patient portals — both frustrating for many seniors to navigate — and the time pressures afflicting physicians. “It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do. “We often have little sense of the complexity of our patients’ lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021 while shopping at Walmart.

At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett explained. “An incredible amount of coordination needed to happen.”

Hartnett moved in with her parents during the last six weeks of her father’s life, after doctors decided he was too weak to undertake dialysis. He passed away in March 2022. Her mother died months later in July.

So, what can older adults and family caregivers do to ease the burdens of health care?

To start, be candid with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School. 

“Be sure to discuss your health priorities and trade-offs: what you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important in terms of keeping you healthy, and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits, and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or a patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of going to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that might be of help. (Most medical centers have staff of this kind, but physician practices do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’” said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit http://kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.