How hospitals can better educate patients and families

When you go into a hospital, or a family member does, you are suddenly a stranger in a strange land.

People rush around speaking languages you don’t understand, and you lose a measure of control over your life. There are medical staffers you’ve never met coming into your hospital room and medical terms being tossed around that you’ve never heard. You are awakened in the middle of the night so someone can check your blood pressure.

The solution? Learning to communicate. Medical and nursing schools are spending more time teaching clinicians how to better communicate with patients, and I have worked — through two books and these weekly columns — to teach nonmedical people how to make the most of communication with their doctors.

In my experience helping patients and their loved ones navigate the health care system, a lot of poor outcomes are not the result of poor care, but of poor communication. Hospitals are trying to connect with patients through blog articles on their websites and newsletters, which is great. But I think they can do a better job at — to use a term from the retail world — the POS, the point of sale. In other words, in the hospital itself.

There is a nonprofit organization doing something about it and I wish more hospitals would take notice.

The Care Partner Project is a Chicago-based nonprofit Karen Curtiss started in 2009 to promote patient advocacy and provide PFE (Person and Family Engagement) materials to hospitals. PFE is not new in the health care arena. The Centers for Medicare and Medicaid Services (CMS) describe it as “proactive communication and partnered decision-making between health care providers and patients, families and caregivers. It is about building a care relationship that is based on trust and inclusion of individual values and beliefs.” PFE is a measure of quality in a health care system.

“Safe and Sound” PFE materials give hospitals another avenue for educating their patients and achieving their goals for patient-centered care. The materials consist of easy-to-use checklists, written in layman’s language not medical jargon, that cover topics including:

• Preventing falls

• Caring for a loved one from afar

• Avoiding blood clots and urinary-tract infections

• Pregnancy and childbirth

“The checklists put patients, families and providers on the same page with clear information for a shared goal: safe and sound care,” Karen says.

The Care Partner Project is her way of channeling the grief she experienced at the death of her father following a series of preventable medical lapses. She believes that if she had access to such a checklist, her dad might be alive today.

What began as a lifesaving lung transplant in a top-ranked transplant unit ended seven agonizing months later with his death. First, he had a post-transplant fall. After spending a long time in traction, he developed pneumonia and a blood clot in the new lung. These were followed by recurring hospital-acquired infections, MRSA and C. difficile, which, as his body weakened, eventually proved fatal.

“My dad spent seven months in the hospital,” Karen says. “It opened my eyes to the cracks in the health care system, and the need for expert advocacy and guidance.”

Though her background is in consumer research and not health care, she has worked with experts on her staff and advisory board to ensure the Safe & Sound “how to” checklists for patients and families conform to best practices for patient-centered care. They support many of the key measures hospitals are responsible for, including Medicare engagement goals, Agency for Healthcare Research and Quality engagement guidelines and National Quality Forum patient safety guidelines.

They are also written at about a sixth-grade reading level, which is consistent with American Medical Association guidelines.

The Care Partner Project’s materials are in use in several hospitals around the country, and I hope more hospitals will give them a try. Any channel we can use to improve communication between hospitals, patients and families is a plus. As a patient advocate, I believe in the power of patients and their families to improve health care outcomes.

Meanwhile, the checklists available for download from the Care Partner Project website,

Like Karen, I have immense respect for the doctors, nurses and other hospital staff who work hard to take safe care of their patients.

But the staffing shortages that were exacerbated by the pandemic haven’t gone away, and that’s a potential recipe for poor health care outcomes. We are both working hard to turn the situation around, one patient at a time.

• Teri (Dreher) Frykenberg is a board-certified patient advocate. A critical care registered nurse for 30+ years, she is founder of NShore Patient Advocates ( Her book, “How to Be a Healthcare Advocate for Yourself & Your Loved Ones,” is available on Amazon. She is offering a free phone consultation to Daily Herald readers; email her at

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