Advocating for Loved Ones During a Medical Crisis

Prepare for the unexpected

After countless ER trips with her parents and mother-in-law, Debbie DeMoss Compton learned to keep a “hospital bag” packed and ready at a moment’s notice. She kept it in her car to reduce stress during frequent medical crises, including her mother’s dangerous blood pressure spikes that needed quick medical attention.

The bag held essentials for long waits — snacks, a phone charger, toiletries, a change of clothes and a book, along with critical documents such as insurance cards, Social Security information, medication lists and a medical power of attorney or health care proxy. She tucked in warm socks and a small photo album for comfort, plus a simple, large-print devotional she created that became her mother’s favorite distraction during hospital stays.

Compton, author of several books including Sonshine for the Soul and The Caregiver’s Advocate series, brought hard copies of key documents because she had learned, often the hard way, that hospitals don’t always have immediate access to accurate records. Even when documents like the medical power of attorney had been scanned during previous visits, staff frequently couldn’t locate them. Without proof of legal authority, clinicians could refuse to share information or accept Compton’s input. “Having physical copies in hand eliminated delays and prevented roadblocks in those stressful moments,” she says.

Dr. Sonia Sehgal urges families not to wait for a crisis to have the right legal documents and paperwork in place. Her advice includes completing advance directives, designating a health care proxy and ensuring the documents are both current and easily accessible. She agrees with Compton that they should be brought to hospital visits. “Copies should be shared with key family members and uploaded to patient portals, when possible,” says Sehgal, chief of geriatric medicine and gerontology at UCI Health, a health care system in Orange County, California.

Peter's advice to other caregivers navigating medical crisis situations: "remember that you carry invaluable experiences about your loved one, giving you 'caregiver authority.'"

Rebecca Stumpf

Working with hospital staff

In hospitals, care is delivered by a rotating team of professionals — doctors, residents, nurses, nurse practitioners, social workers, case managers and therapists — all working across staggered shifts. Even in high-performing systems, information can be lost during handoffs. Each patient’s clinical details are technically captured in the electronic health record, but not every provider reads the entire chart before entering the room.

Never assume the next clinician walking into the room knows the full story, says Kelly Ott, a certified senior adviser who worked in hospital administration for 30-plus years. Her professional and lived experience, particularly during her father’s three open-heart surgeries, shaped her belief that outcomes improve when families refuse to sit quietly on the sidelines.

During shift changes, typically at 7-7:30 a.m. and 7-7:30 p.m., caregivers want to be there to ensure a smooth handoff. “At the start of every new encounter, restate your loved one’s current condition. Point out what’s changed since the last shift. And don’t hesitate to ask, ‘Is this documented in the chart?’ to ensure it is officially captured,” says Ott.

When dealing with hospital staff, Compton learned that persistence pays off. “At first, it was exhausting and uncomfortable to confront staff,” she admits. “But I realized that for my parents to get the care they needed, I had to step up.”

She gradually earned respect with repeated, clear communication. By calmly restating observations, asking clarifying questions and insisting on her role as the person who knew her parents’ behaviors and needs, she became a trusted voice in their care. Whether it was questioning why a medication was being given, double-checking vitals or correcting assumptions about cognitive ability, her diligence ensured that her parents received individualized attention.

Still, Rosenberger cautions caregivers to pick their battles wisely. Not every encounter goes smoothly. Over the years, Rosenberger challenged dismissive doctors, escalated concerns to administrators and called time-outs before risky procedures. He corrected ICU doctors who didn’t realize Gracie was a double amputee and pushed back when specialists minimized his concerns. During one crisis when Gracie coded, he helped summon the team that stabilized her. In another grueling stretch in 2025, which began as two scheduled operations and dominoed into 11 surgeries over nearly five months in the hospital, “I warned the surgeons in advance that complications would come, and they did.”

Hospitals are busy, high-pressure environments, and not every perceived slight or dismissal demands an immediate escalation, Rosenberger points out. Instead, he says to focus energy on moments that directly impact patient care — particularly crises in which intervention could change outcomes. Smaller frustrations, such as administrative delays or minor communication breakdowns, are better addressed afterward with hospital administrators or social workers. “Know when to push, when to step back and how to navigate the system in a way that protects both the patient’s care and the caregiver’s own stamina,” he says.

For families without medical experience, Compton emphasizes preparation and self-education. Learn about the conditions, medications and typical procedures your loved one is facing. Take notes during rounds or visits. “It’s not about confrontation. It’s about protecting your loved ones and making sure someone hears you,” she says. “The system is designed for efficiency, not for individualized understanding, and sometimes you have to be the one to fill in those gaps.”

Peter has been by Gracie's side through countless surgeries and hospital visits since a 1983 car crash that eventually led to a double amputation.

Rebecca Stumpf

Inviting caregivers into the care equation

Breanna Hetland, a critical-care nurse and researcher at the University of Nebraska Medical Center in Omaha, admits that the landscape of family engagement in hospitals can sometimes be like “the wild west.” Families are often thrust into high-stakes critical-care situations with little preparation, and there are few consistent protocols to help them navigate the experience.

Hetland has firsthand knowledge: She witnessed her father’s ICU stay in 2013 and highlighted the lack of structured support for families, inspiring a decade-long research and development effort to find a solution.

To address the gap, Hetland and her team developed a structured, family-centered digital platform called Familyroom.health that guides caregivers through the hospital journey. Families begin by scanning a QR code, which launches daily tailored tips cowritten by nurses and families with ICU experience. The platform is available to all caregivers regardless of hospital location and provides practical guidance, from simple bedside actions, like personalizing the patient’s space, to questions to ask during rounds. It also offers emotional support through features like a virtual healing garden.

The program integrates with the health system’s electronic health record, allowing information from family members to be visible to clinicians, a first-of-its-kind approach. Relatives can complete structured care check-ins, assessing symptoms like agitation, pain and anxiety, trying nurse-recommended comfort interventions and recording what they observed and whether it helped. That information flows directly into the patient’s medical record, giving clinicians documented insight into the patient’s experience between clinical visits that might otherwise never be captured.

“Families know the patient’s history, their personality, emotional patterns, pain cues and the subtle behavioral shifts that signal something isn’t right,” explains Hetland. “They often see what we can’t. But unless we intentionally invite them into the process and provide a clear pathway to share those observations, that insight goes overlooked.”