How to Navigate Our Fragmented Medical System

Be prepared to advocate for yourself and for those you love

For three years, Lil Banchero’s 86-year-old mother struggled with pain due to advanced arthritis. She tried yoga. Doctors prescribed medications and tried injections. Nothing worked. The pain got worse, and her mother became depressed. 

“Months passed,” said Banchero. “Nobody was paying attention anymore.”

Finally, Banchero accompanied her mother to a doctor’s appointment and insisted, “There’s got to be something else out there we can try.” 

The doctor prescribed another medication, and that—combined with meditation, walking and yoga—finally made the pain manageable.

“My mother is a different person now,” Banchero said. “She went out and got a pedicure today. It’s been life changing.” 

Banchero knew how to advocate for her mother because she’s a nurse and program coordinator for the Institute for Healthy Aging at the Luminis Health Anne Arundel Medical Center in Annapolis, MD. But more and more older adults who are not medical professionals will need to learn that skill, too. That’s because, just as the population of older Americans is ballooning, several factors are conspiring to make getting good medical care even harder.

Older adults often have multiple chronic conditions involving a multitude of specialists. (A third of older adults see at least five different specialty medical providers each year.) The fragmented, siloed nature of the American health care system delegates the task of coordinating that care to primary care physicians (PCPs), who are overworked, pressed for time and in short supply. There’s an even greater dearth of geriatricians, who specialize in caring for older adults. And projections say it’s only going to get worse.

The bottom line: just showing up for appointments and following doctors’ orders doesn’t guarantee good care.

Said Banchero: “You’re the pilot of your own care.”

 Quarterbacking Care

That reality shocked Tina Sadarangani, PhD, an assistant professor at New York University’s Rory Meyers College of Nursing. When her parents developed serious health conditions, she discovered how much responsibility falls on patients and their families. Even though she’s always treated patients, and although both parents are retired physicians, quarterbacking their care has proven exhausting. 

Spurred by her experiences, Sadarangani created CareMobi, an app for coordinating care, and the Enlightened Caregiver, an Instagram with tips for patients and their care partners.

“We may not be able to fix the broken system, but we can figure out how to work within the system,” she said. 

Her advice: make the most of medical visits, which may run only five minutes. Consider recording conversations with the doctor to help remember details. Bring a family member or friend to the appointment.

“Plan your story ahead,” she said. “Lead with your most pressing problem and get the timeline of your symptoms straight with as many specifics as possible. It makes a big difference to your doctor if your cough has been going on for several months instead of two weeks, for example.” ⠀

When describing a symptom, Sadarangani said, tell the doctor how it’s affecting your ability to function. Instead of just saying “My back hurts,” be specific: “I was playing golf five times a week until this back pain started, and now I can’t get out of bed.” 

Keep track of basics, like your numbers if you have high cholesterol, and what direction they’re moving in. 

Specific information helps ensure the doctor doesn’t dismiss your symptoms as “just getting old,” Sadarangani added. 

“If you want the doctors to be proactive and to help you maintain the level of functioning you want, you need to be clear about that,” she said. “You need to say, ‘I want to be back in my golf game. What can you do to help me get there?’”  

If you have questions, write them down in advance and frame them carefully. 

“If you’re not precise with an ask, the physician is probably not going to pay attention,” Banchero said. 

Before leaving a doctor’s office, make sure you are clear on your next steps. If the doctor ordered a test, for example, ask: How and when will you get the results?  Depending on the test results, will you need another test, or to schedule another appointment? If you’ve seen the doctor for a new symptom or acute illness, ask when you should expect improvement, and what new or continued symptoms warrant a call to the doctor’s office or even a trip to the ER. Find out the best way to contact the doctor or a nurse after hours, if the need arises. Assume the ball is always in your court because, in most situations, it is. 

Consider yourself the central repository for your medical records. In theory, after an exam, each specialist sends the records to your primary care physician. Don’t count on that. If you see a specialist, follow up with your PCP’s office to confirm that the record was received and reviewed. Keep your own record of each visit, too.

Banchero encourages patients to educate themselves on some medical basics. For example, if you have high cholesterol, keep track of your numbers and understand what they mean. That way you’ll know whether you’re improving or getting worse and can discuss that with your doctor if needed. 

Many experts noted that patients can ask for an annual Wellness Visit—an extended, 45-minute visit, covered by Medicare, that includes a review of your medical and family history and current prescriptions, as well as advance care planning and a cognitive assessment. That in-depth visit can ensure that your health care plan is personalized. 

Managing Multiple Meds

In her previous job as executive director of a senior living community, Jenni Knutson, CDP, always made sure that residents were prepared for medical emergencies. Any time a resident was taken to the ER, Knutson handed paramedics a list of the person’s medications, insurance information and other documents. 

But that didn’t always work, as Knutson discovered when visiting a resident who’d been taken to the hospital in an ambulance and admitted. Family members were puzzled because the patient hadn’t eaten in days. When Knutson asked the nurse on duty at the hospital to check, they discovered that the patient’s medication record wasn’t updated in the hospital system. No one at the hospital was aware that the patient had been taking a strong anti-psychotic medication daily before she was admitted. As a result, the patient had gone “cold turkey” during the six days she’d been in the hospital, which explained the appetite loss. 

“Likely a doctor in the ER reviewed her medication list, then set it down on a counter, and no one updated the computer system,” said Knutson, who is now a senior life care manager with Olive Branch Seniors based in the Dallas, TX, area. 

Knutson said that many missteps in medical care for older adults relate to medications. About half of adults 65 and older report taking four or more prescription drugs daily. One study showed that one in seven cases of emergency department visits by older adults were medication related—and over three-quarters of them were preventable. Medication-related problems included adverse drug events (side effects) as well as those due to noncompliance—taking too much or too little of the medication, or stopping the drug entirely without medical supervision.

To help avoid these missteps, keep an updated list of all medications, including the name, dosage, date, number of refills and instructions (such as whether to take with or without food). That list should include prescriptions, over-the-counter medications, supplements and herbal remedies. 

Also, know that it’s also up to you to make sure every provider has the most updated list.

As you grow older, medication side effects can become more common or severe. Ask your doctors whether you really need all the drugs you’re taking. 

“Share your medication list with all of your health care providers, especially when you see a new doctor, get a new prescription or have a change in your condition,” said Erin Inman, PharmD, vice president of Corewell Health in Grand Rapids, MI. Ask the doctor to review the list for possible interactions. 

Pharmacists can also serve as an excellent resource between doctor visits, Inman adds. 

“Your pharmacist can answer any questions you may have,” she said. “You can request a review of your complete medication list for potential interactions or duplications. This is what pharmacists are trained to do.” (Call ahead to make sure the pharmacist has time to review the medications or to schedule a time.)

Inman recommends filling all your prescriptions at a single pharmacy, if possible. Anytime a new medication is prescribed, she advised, ask the doctor: “Is this medicine additive or is it replacing something else? How long do I need to take it—for a period of time or is it going to be lifelong?” 

Geriatricians review patients’ medication lists with an eye toward “deprescribing,” because side effects may become more common or severe as patients get older. Don’t hesitate to ask your doctor about this.

“You can ask your providers about de-prescribing, especially if you suspect a medication or medication interaction is causing an adverse symptom or no longer helping,” said Kylie Meyer, PhD, assistant professor at Bolton School of Nursing at Case Western Reserve University in Cleveland, OH. 

Enlisting Care Partners

Many experts advise bringing a care partner—a trusted friend or family member—along on appointments to serve as a second set of eyes and ears. That’s especially important for patients who may have cognitive impairment. Care partners can work with the primary provider to keep the dots connected, said Denise Lucas, PhD, clinical associate professor and chair of advanced practices at Duquesne University’s School of Nursing in Pittsburgh, PA.       

The care partner should also obtain access to the patient’s online medical records. Banchero can log onto her mother’s account for MyChart, the health care system’s patient portal, to check on test results and other developments. (Patients are permitted to share their log-in info if they so choose.) 

A care partner can be especially helpful for older patients who aren’t comfortable asking questions, said Erica Stevens, DO, department chief of primary care at Corewell Health in Grand Rapids, MI.

[Older adult patients] may feel like asking questions is disrespectful,” she said. “But it’s actually welcomed, from a provider’s lens, because I don’t know what’s happening in your home.” If a patient is forgetting things, or having trouble getting out of a chair, she wants to know, especially if the problem has worsened recently. 

For older adults without family nearby, some community agencies may be able to help with this role. “Contact your local Area Agency on Aging and request help from publicly funded Care Coordination Services,” said Dennis Meyers, PhD, chair for the residential care of older adults at Baylor University’s Garland School of Social Work in Waco, TX. “Organizations such as the Alzheimer’s Association and American Heart Association also offer guidance on how to access care.” 

Becoming Age-Friendly 

Some hospitals and clinics are working to improve care for older adults by becoming certified Age-Friendly Health Systems. That involves adopting practices centered on the “4Ms” of good geriatric care: What Matters, Medication, Mentation and Mobility: 

  • “What Matters” involves considering the older adult’s priorities in making treatment decisions—for example, honoring a 90-year-old patient’s desire to forego aggressive cancer treatment. Don’t hesitate to express your wishes to your doctor. 
  • “Medication” means considering your medicine and supplement needs and issues, as described earlier in this article.
  • “Mentation” issues, such as forgetfulness, can be dismissed by primary care physicians as part of normal aging. Ask for an assessment if you’re experiencing cognitive issues. 
  • “Mobility” is another area that primary care physicians might brush aside. If you’re having trouble getting around, ask about the possibility of physical therapy (which may help you regain or maintain physical function) or occupational therapy (which can help you adapt to changes in mobility and optimize functioning). 

As more hospitals adopt age-friendly measures, which Banchero’s hospital helped develop, more older patients will get the care they need in the future. But until they do, the onus falls on older adults and their care partners to be smart, educated and empowered. 

“We really do need to be advocates for ourselves,” she said. “There are so many phenomenal advancements in medicine today. I would never [accept], ‘It’s just because you’re old.’”