A caregiver’s tips on navigating the healthcare system
Part 1 of 2 My father has dodged death more than once. So many times, in fact, that we’ve lost count. He survived a heart attack at age 36, and two open-heart surgeries by the time he was 38. By the time he was in his 50s, he suffered from debilitating, chronic pain as a result of damage to his saphenous nerve from his bypass surgery and underwent a pioneering thoracotomy heart valve repair. In his 60s, he survived a rare epidural abscess that resulted in a four-week hospital stay after his first of many complex spinal surgeries. Now in his mid-70s, he’s facing a daunting trifecta of heart failure, chronic inflammatory demyelinating polyneuropathy (CIDP), and chronic obstructive pulmonary disease (COPD).
Given the above, my family has had more than our fair share of interactions with the US health care system. Our latest (ongoing) encounter, which has included two heart catheterizations and a stent placement at a world-class hospital, has been particularly eye-opening. Since I happen to work in health communication and patient advocacy, I feel compelled to share some key takeaways with patients, their families, and the health care professionals who treat them.
1. Patients need someone – be it a family member or friend – who can advocate for them.
While we’re enormously grateful for the surgeons, doctors, nurses and other health care professionals who have helped my dad survive, the most important member of his health care team is my mom. She has stayed by my dad’s bedside for weeks at a time; caught countless mistakes with his many medications; flagged serious infections before they show up in his bloodwork or x-rays; advocated non-stop for visits with appropriate specialists or hospital minders to watch my dad overnight; and kept track of his vitals, diet, medications, side-effects, and follow-up appointments.
2. Patients (and their advocates) shouldn’t be afraid to speak up, and health care professionals need to listen rather than dismiss their concerns.
I know health care professionals, particularly those who work in a hospital, are busy and overwhelmed. Nonetheless, when someone tells you that their loved one isn’t acting normally, this should be taken seriously. During the latest hospital stay, I believe my dad’s delirium was chalked up to normal old age and/or hospital-induced delirium. My mom was the one who discovered during some late-night research that it was most likely a result of withdrawal from a drug that was removed before my dad’s procedure and hadn’t been started up again. It took us days to get a consult with a psychiatrist who confirmed our assessment. By that time, we had thankfully already implored the Physician’s Assistant to restart the medication. Sure enough, my dad’s mental state improved quickly. In the past, my dad has displayed confusion as the first sign of a systemic infection, which we’ve also had to alert his medical teams to. The bottom line is that you know your loved one best and have to speak up if something about their physical or mental status doesn’t seem right.
3. If you have a loved one who is hospitalized or sick, don’t underestimate the power of online and offline networks.
I have never been more awed by the willingness of both friends and strangers to jump in to help. I have frequently, and somewhat desperately, posted on local Facebook groups asking all sorts of questions. While they can’t give direct medical advice, complete strangers have given me the names of doctors, aides and home nurses, and more than one local doctor has responded to my posts with advice about navigating the health care system and their perspectives on various hospitals. Many have been willing to hop on the phone. Friends who work in health care have offered to get involved and one even made time to see my dad right away, given the urgency of the situation. I know not everyone is in a position to pull this lever, but most everyone can join disease or condition-specific support groups or neighborhood Facebook pages, and ask, ask, ask.
4. If you’re a patient, or supporting someone who is, take notes, do your own research and write down your questions.
Unfortunately, many health care professionals have not necessarily been trained in health literacy best-practices. Fortunately, I’ve been able to act as a translator for my parents when they need it, but my mom takes real-time notes so we can reference the doctor’s terms and instructions later. While I would never suggest using ChatGPT for actual medical advice, if you aren’t familiar with medical jargon, it can be helpful in explaining procedures and terms in plain language. In addition, my family collaborates on keeping a list of questions as they arise, which we print out and bring to appointments so we don’t forget to ask anything in the heat of the moment.
While these tips