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“So many times a doctor makes a brief visit to a hospital room and when further questions come up they are nowhere to be found. Having a resource that will enable you to ask the right questions and get the information which will help you care for your loved one, or in some cases, help keep them alive, is invaluable.”
“These days, with healthcare so fragmented, and the nursing staff overworked, you need to know what questions to ask and what information is important.”
“Learned a lot about the health system I didn’t know.”
"In 2015, I lost my mother due to numerous medical errors.... To make matters worse, after her death, we had a horrific experience with the hospital... To this day, I am still "dealing" with this situation. If you, your experience and knowledge save just one patient and/or family from going through the hell we went through, you should be proud of that. More patients need people like you. So, I just wanted to say thank you for what you do."
"I love what you are doing. A list could have saved my mom’s life."
"I was excited to discover your organization! I believe what you're doing is so important! We need to educate the public on how folks can best advocate for themselves and their loved ones with their medical needs... how they can best navigate our complex healthcare system." RN, Patient Advocate
"Thank you for what you're doing to make a difference in so many lives!"
"These days, with healthcare so fragmented, and the nursing staff overworked, you need to know what questions to ask and what information is important. Don't go to the hospital alone! These checklists and a good friend go a long way in making sure you get the [hospital] treatment you need and make it safely home."
Progress in ’22:
Further and faster with friends!
We focused on building partnerships for patients. As we enter ’23, there are more great partnerships in the pipeline. Stay tuned!
Highlights of our progress for patients in 2022:
With a grant from The Dartmouth Institute, we produced a 16-minute “mini” documentary on implicit bias in healthcare. Entitled, The Faces of Care, Dartmouth is distributing the film to medical and nursing schools for diversity and inclusion training.
The University of Texas Medical Branch (UTMB) licensed all of our checklist guides for patient education in four of their hospitals. UTMB’s nursing leaders formally endorsed this initiative and it will be incorporated in UTMB’s application for the Malcolm Baldridge Award. Most importantly, our guides will reach the 50,000 patients cared for every year at UTMB.
In 2023, we will use this pilot to approach hospitals everywhere. (If you work for, or know of a hospital that’s deeply committed to patient centered care and patient education, please contact us!)
We formed a task force of professional patient advocates to develop additional checklist guides for patients and families. The results are impactful. Launching Jauary 2023: How to choose senior residential communities (Assisted, Memory Care, Nursing home) on quality, safety and fit for evolving aging needs. Up next, Spring 2023: How to choose palliative and hospice on quality, reliability and compassion of care.
We continued and expanded our partnership with independent patient advocates to provide services to uninsured patients who have no resources to help them through a serious illness. Just one example: severe cataracts nearly blinded a man in his fifties (rare), causing him to lose his job and insurance. Our advocate solicited the local Lion’s Club to cover cataract surgery and now, with sight fully restored, he’s back at work!
Our community education team grew from 36 markets to 42, with more coverage in our own backyard – mostly in the Midwest! We now have educators and programs in Grand Rapids, Cincinnati, St. Louis and Kansas. We also added new community programs on telehealth, preventing community infections (many more than Covid), end-of-life planning and Medicare-demystified.
Last spring we launched our Tuesday Tips newsletter – one quick “insider” tidbit every week to help demystify health care. We are happy to report that we’ve had lots of great feedback and it’s been wonderful to hear how people are using the info to help them get better care or manage medical care with more confidence. Sign up for our newsletter!
Partner for patients with us!
Why we do what we do.
Our family’s story could be yours.
Use The Care Partner Project’s guides to help you
safeguard your loved one’s care.
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 second 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 five 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. As we learned, life skills were of no use in supporting dad’s care. We were in foreign territory, where a foreign language was spoken, and no guidebook for dad’s care journey from surgery to discharge.
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 day—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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