The health care system has become increasingly complicated, especially when you layer on the isolation and other challenges brought on by COVID-19 distancing, notes Linda Beck, principal and founder of Square One Elder and Health Advocacy. We asked Linda and other professional health advocates to share tips for people advocating for a loved one as they navigate the system.
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Too often, under any scenario, the medical system can feel impenetrable for families advocating for loved ones. As a result, families reach out to specialists like her—paid patient advocates who can help with finding the best specialist or treatment trial for a rare condition, get answers from a hospital on a patient’s behalf or be a virtual health care manager.
“While each provider may have a fix on their particular area of care, for many patients, no one is keeping an eye on the big picture,” Beck says. “Seeing six, eight, 12 specialists opens up the patient to conflicting diagnoses. While electronic records were supposed to solve the issue, they’re too often open to inputting and access errors.”
How to Advocate on Your Own
A first key step to advocating for family members effectively is to pull together every medical record you can find, Beck and other advocates say. Each treating physician needs to be made aware of the patient’s prescription list, other specialists they’re seeing and any tests they’ve already had. A family can put that on a thumb drive and carry it electronically to appointments, but it’s also good to hand an old-fashioned copy to a provider, Beck says.
Barbara Abruzzo, president of Livingwell Care Navigation, which is based in New York and offers services nationwide, suggests adding an even shorter cover page or client profile—a paragraph or two to hand to a doctor, just like the one she’d prepare when working as an intensive care nurse.
“When you say to a patient, ‘Tell me about your case,’ they go into a story rather than answer the question. This is a simple paragraph—how old they are, what are the key issues the patient is dealing with from a diagnostic perspective and what are their medications,” Abruzzo says.
When more help is needed, family members can look first for free support, notes Jacqueline O’Doherty, a certified patient advocate and geriatric health manager with Health Care Connect. Most hospitals have social workers with whom you can make a virtual or in-person appointment. You can ask that they be part of a virtual care meeting and pull in the case manager, doctors on the case, physician therapists—anyone treating the patient.
Every county has an office on aging, a federally funded program that can be a great resource. Also, don’t forget about hospital chaplains and hospital-provided patient advocates. Most work for the hospital’s risk management department, O’Doherty notes, with a goal of making sure the hospital doesn’t get sued. But many, including Cornell, have great patient advocacy programs that look out for the patient.
“The bottom line is that people (and families) have to be active participants to get the health care they want and to protect themselves against many of the misadventures that can happen,” Beck says. “You don’t need your own MD degree, but you do need the ability to communicate with health care providers, ask good questions and educate yourself. I say Dr. Google is informative, even if she’s not infallible.”
Additional Tips for Advocating
- If hiring a professional health advocate, consider looking for one with expertise in the appropriate diagnosis area, especially if dealing with a rare disorder or disease. To find one who works in the appropriate state, start with the Alliance of Professional Health Advocates.
- If you can’t be with a family member in person because of COVID-19 isolation or another reason, Abruzzo advises that you picture yourself sitting at that bedside and do what you would be doing if you were there—that might be playing the person’s favorite music or just keeping a phone line open and hanging out.
- Communicate regularly with the hospital or appropriate physician, and escalate concerns when necessary. Establish a good time to check in with floor nurses (note: not during shift change). If unhappy with communication with the health care team or care, Nicole Rochester, CEO of Your GPS Doc LLC, advises that you ask to speak to the charge nurse or the unit director, particularly if you have a concern about nursing care. With concerns about the care plan or lack of progress, go to the department chair or the chief medical officer. “Be polite but persistent,” she says. “Your loved one needs you to be their voice now more than ever.”