Are you a ‘complex’ patient?

With more people living longer, it’s becoming likelier that an individual will be dealing with more than one chronic health condition, such as heart disease, hypertension, diabetes, cancer, any number of autoimmune disorders (such as lupus) — the list is practically endless.

Your doctors — you probably have more than one — may not tell you to your face that you are “complex” or “complicated,” so how do you know if you are? What are the possible implications of complexity, and what can you do about it?

Here are some typical characteristics of complex patients, in addition to having multiple health conditions:

• You take multiple medications.

• You have a lot of health care providers, including specialists.

• You are in the hospital frequently.

• You struggle to manage your own health care because of its complexity.

• You lack the family or social network you need to manage your health care.

Health care providers are seeing more patients with complex conditions than ever, but there’s little consensus among doctors about how to deal with them. Aside from the characteristics I listed above, patient complexity is aggravated by a number of other factors.

• Our health care and social care systems are fragmented, and the gaps are continuously growing.

• The scope of individuals’ needs are constantly growing.

• More patients are living alone, as family and community connections weaken.

• There is a global shortage of caregivers in the workforce.

Researchers have also noted the impact of socioeconomic factors, such as lack of nutrition, poverty and access to care.

“All of this poses great challenges and the need for a paradigm change in proposing possible solutions and interventions,” three European researchers wrote in 2023. “We have to invest, mobilize and implement harm reduction interventions in the care of complex patients.”

Easier said than done, obviously.

One positive I’m seeing is the emergence of patient-centered care as a pathway to better health outcomes. Using a patient-centered assessment lets providers understand not only a patient’s physical health, but also their mental health, lifestyle, behaviors, social factors (education, employment) and ability to understand their symptoms and treatments.

As a patient advocate, I have to take all of these factors into consideration when working with a client and communicating with their care team. Even the smallest problem in any of these dimensions can dramatically worsen a patient's health outcome.

But patient advocates and health care providers cannot do the job by themselves. If you fall within the definition of “a complex patient,” it’s important for you to take the bull by the horns and participate in your own health care to the best of your ability. The same goes for your loved ones, your primary care provider and caregivers.

This is not easy in our fragmented health care world. Still, there are actions a complex patient can take to help themselves and (one hopes) improve their health outcomes.

• Coordinating care. Each health care provider has to know what the others are diagnosing, treating and prescribing. It’s likely that one or more of your providers is accessible through a patient portal that also contains test results, notes and electronic health records.

Will they have time to read everything? Maybe not, but you should, so you can convey your understanding of what other doctors are saying. This is where medically-trained patient advocates provide a valuable service, by reviewing the records and then conveying that information to doctors in medical terminology.

• Being honest. As humans who want to appear competent and in charge of our lives, we sometimes hesitate to tell our providers everything that’s going on. Maybe there’s an emerging mental health issue. Maybe you’re taking a drug that hasn’t been prescribed. Maybe there’s been a breakup in a marriage. Maybe you’re drinking more. All of these things can impact your well-being, and your doctor needs to know about them.

• Taking notes. I’ve said it before and I’ll say it again. Take someone with you to medical appointments and have them take notes, or even keep a journal yourself. You can keep track not only of doctor discussions, but also note your mental, emotional and physical symptoms on a daily basis to share with your provider.

If you are a “complex patient,” or you know someone who is, recognize that fact and take a stronger hand in your care. You may be helping yourself or a loved one live their best life.

• Teri (Dreher) Frykenberg is a board-certified patient advocate. A critical care registered nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). Her book, “How to Be a Healthcare Advocate for Yourself & Your Loved Ones,” is available on Amazon. She is offering a free phone consultation to Daily Herald readers; email her at teri@northshorern.com.