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A patient advocate’s impassioned plea to care for the caregiver, too

holding handsWe celebrated my dad's 70th birthday on a warm summer night in 2011 with a big Sicilian family dinner and root beer floats for dessert on our patio. A few days later he was admitted to the hospital for what was supposed to be a routine heart valve replacement -- but what happened next was anything but routine.

The hospital became my family's headquarters for the next month. After numerous complications and multiple hospital-acquired infections, my always-healthy father finally left the hospital with a pacemaker and a walker but without his gangrened gall bladder. We cared for him, as a family, at home for nearly six months -- learning how to navigate IV antibiotics and a complicated schedule of meds. Thankfully, he survived and is once again the vibrant father I grew up with, but the experience left scars not just on him but on the whole family.

Having gone through this experience, the presentation on caregivers from Renata Louwers at Medicine X | ED this weekend was especially meaningful to me. A patient advocate, writer and former Scope contributor, her first husband, Ahmad, was diagnosed with terminal stage IV bladder cancer in early 2013. “He went from jogging in April to needing a walker in September,” she recalled.

Louwers' husband's cancer progressed quickly, and their life turned into a whirlwind of chemo, transfusions and pain management regimens; he passed away 11 months after his diagnosis at the Zen Hospice Center. In those 11 months, Louwers got a crash course in medicine, palliative care and caregiving -- and through this she saw firsthand that our medical system is simply not set up to deal with or to support caregivers.

One of the hardest parts for Louwers was feeling as if she was an inconvenience in the hospital setting. This was in stark contrast to her experience at the hospice center, where, she said, "I felt important. I felt listened to.” The hospice center had "textures, aromas, serene colors on the wall, a throw on the bed and cookies baking," and there was also always a space for her to physically occupy -- something that had been a problem in the hospital, where she was often scolded for being in the wrong place. Most importantly, she was told that she could finally “be a wife instead of a caregiver.”

She told Med X attendees that one of the primary complaints she hears from caregivers is that they're forced to tell their story (and their loved ones' medical history) over and over again in the hospital setting, especially in complex cases where there are multiple specialists. Louwers doesn't know to minimize repetitive storytelling, but she thinks it's an area that's ripe for innovation. “In an ideal world I would love to see a collaboration of caregivers, the tech industry and medical professionals try to come up with a solution together," she said.

Louwers also spoke about those caregivers with ill loved ones at home. "Many caregivers are running a one-person hospital at home and dealing with complex medical issues for which they have no training," she said. How can we support them and equip them with the necessary caregiving tools? she asked.

Louwers said she'd like to see a health-care system that provides different care for patients and caregivers dealing with chronic and complex, versus acute, disease. "A family coming in in to that scenario is highly stressed,” she told me in a follow-up interview. "What I envision is some kind of 'platinum elite' or 'concierge service' for those who are dealing with the worst of the worst.”

Louwers noted that what she and her husband went through was indeed the worst-case scenario -- "chronic and complex with a terminal prognosis" -- and it's heartening to see her use this experience to advocate for future caregivers.

Previously: On life, death and David Bowie: A palliative care physician shares words of wisdomYou never know someone else’s world and Exploring the psychological trauma facing some caregivers
Photo by Christopher

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