Nothing in life prepares us to navigate the health care world for ourselves and the people we love.
We provide tools for preparation and peace of mind.
We are dedicated to demystifying health care with plain language and simple “to do” checklists so all of us can support our loved ones’ care – with confidence and grace. The result?
Vulnerable patients have informed, capable and proactive Care Partners.
providers can rely on their patients’ Care Partners as “2nd eyes and ears” to monitor care.
Do you agree that partnering for patients is a win-win? Let’s collaborate!
Partner with us for patients — here’s how!
Use our simple step-by-step checklists to help you navigate health care — with confidence!
Hospital Stay "To-Do's"
How to safeguard loved ones’ care at bedside – and when to get a nurse!
Critical questions to ask for fully informed decisions for recommended surgery.
Covid lessons: when you can’t be there, how to monitor your loved one’s hospital care.
Pregnancy, Birth and Recovery
Critical “to-do’s” to safeguard mother and child their Care Partners need to know.
Questions to ask to help make sure you get the correct diagnosis and/or 2nd opinon.
It pays to prep for emergencies. It can make a big difference in the ER experience and care.
20% of patients end up back in the hospital in weeks. Know how to prevent a round trip.
Doctors have limited time! Know how to get value out of every minute together. (Coming 10/22)
A big move and a big decision. Know questions to ask and what to watch for. (Coming 9/22)
Meet our team
Karen Curtiss BCPA
Founder, Director, Content Development, Speaker
Mary Foley RN, PhD
Workshop Co-Trainer, Content Review, Clinical Practice Review, Speaker
Sue McWilliams DNP, MSN, RN
Clinical Content, Advocate Education
Grateful for our Volunteer Content Task Force
Professional patient advocates dedicated to health care education for everyone
Vik Anantha, Founder, PeerHealth
Bob Aydt, Executive Director of Operations, First Capital Group, Inc.
Deidra Kindred, RN, BSN, LNC, FCN, BCPA, Owner at Your Nurse Advocates PLLC
Steven McGeady, Co-Founder, Intel Architecture Labs
Michael Millenson, Author, Demanding Medical Excellence: Doctors and Accountability in the Information Age, President of Health Quality Advisors LLC, Adjunct Associate Professor, Feinberg School of Medicine, Northwestern Medical School
Cari Oliver, MD, Founder, Oliver Center for Patient Safety, University of Texas, Medical Branch
Pat Rullo, Weekly Host, I Heart Radio, Speak Up and Stay Alive Patient Safety Radio, Author, Highway to Heart, Humor and Honesty in Healthcare
Robin Shapiro, Co-Founder, Health AdvocateX
Our Family’s Story
It Could be Yours
It starts with a blessing
On an icy February day, a young man suffered a severe brain injury in a motorcycle accident. One of his healthy lungs was gifted to my dad, who was near death from pulmonary fibrosis.Dad’s nine-hour surgery at “Super Star” medical center, the #1 transplant unit in the world, went so well his doctors predicted he’d be out on the golf course by the 4th of July. A dozen entirely preventable medical complications later — seven months after he got his priceless 2nd chance at life — Dad died, never having left the hospital.
Nothing in life prepares us
We knew that patients should have someone with them during a hospital stay, so my 5 siblings, mother, and I arranged for one of us to always stay by Dad’s bedside for a recovery period estimated at six weeks — tops. We had a vague idea that we might be called upon to speak up as advocates on dad’s behalf, but frankly, we had no idea what that might entail. We simply trusted ourselves to “figure it out”. After all, we were all college educated and seemed to navigate life pretty well.
Though I didn’t know the term “patient-centered” at the time, we assumed Super Star, a leading academic medical center, offered such care — that is, care in which the entire system centers on what’s best for patients. This flawed assumption tripped us up over and over again.One other thing we didn’t know at the time: with Dad’s discharge on the horizon, his fate was sealed with a fall. He was confined to horizontal traction until a neurologist could evaluate him “in an hour or two.” Instead, a full 57 hours passed before the neurologist came to administer a 5-minute test that confirmed Dad hadn’t suffered anything more than a bad bruise. The next morning, Dad was rushed to the intensive care unit with a raging fever and pneumonia, the inevitable result of prolonged horizontal traction.
Our plea to help
A few weeks later, a blood clot was discovered in Dad’s arm on a Friday afternoon. His doctors decided to “wait and see what happens over the weekend.” So terrified that the clot would travel, Dad barely budged a muscle over the weekend, but even so, the clot landed in his new lung, compromising its function. I asked for a group meeting with his doctors and pleaded: “Please, tell us how can we get in front of anything else that could hinder Dad’s recovery? How can we help?” Arms crossed, their response was that there was nothing we could do.
Infections claim hope
Then came the infections: MRSA, a deadly staph infection. Then, C. difficile, yet another potentially fatal infection. Both were treated, then re-occurred — relentlessly. On the 4th of July, Dad was nowhere near a golf course.In September, he was diagnosed with yet another infection, this one untreatable. Mom and Dad held hands for the final time in those final hours.Despite everything, my mother wanted to thank Dad’s transplant surgeon for giving him a second chance at life and say goodbye. His staff alerted him, and Mom waited three hours, beside the body of her husband of 51 years, just to end their last journey together on a gracious note.The surgeon never came and never called. Finally, she left for home. Dad’s casket was carried in the belly of her plane back home to Florida.
No one should be a statistic
When Dad died on September 23rd, he was one of a thousand deaths that — and every day — from common medical complications that could have been prevented. I joined The Care Partner Project to help other families be more informed, engaged, pro-active and confident when their loved ones are counting on their help through medical care. It’s my way of transforming our family’s grief into something good for other families. I know that’s what dad would have wanted.
Get the care you want for the people you love.
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