This post is the fourth
in an ongoing series.
In this post we highlight a professional organization
that specializes in patient-
and family-centered care
|Joanna Kaufman is a woman with stories. When she visits hospitals and other healthcare organizations across the country or answers numerous phone calls and emails sent to her employer, she will often illustrate her meaning with narratives and examples. Some stories depict good endings and others not so good endings. But they all communicate one message: patients and families should be at the center of their own medical care. This message has been championed for the last twenty years by Joanna’s employer, the Institute for Patient- And Family-Centered Care (IPFCC), a not-for-profit organization that offers consultation, training, and technical assistance to hospitals, clinical practices, educational institutions, architecture firms, community organizations, and government agencies. Although they work with a plethora of groups, they are absolute experts in patient- and family-centered care (PFCC). |
IPFCC was started in 1992 by Bev Johnson, the current president and CEO, who has received national recognition and several awards for her work. Joanna, who is a nurse by training, and Bev actually crossed paths back in the early 1980s when they both received grants from the Surgeon General on projects related to PFCC. Their paths crossed again over the years until 2006 when Joanna decided to leave the nursing field and found a job as the information specialist at IPFCC. She is responsible for the website content, writes a monthly newsletter, trains nurses and physicians in PFCC, and responds to all inquiries sent to the Institute. Altogether, there are 11 women who work at the Institute which Joanna describes as an organization that is "tiny but with great representation”.
|When training others in PFCC, Joanna shares many of the experiences and anecdotes she and her colleagues have collected over the years. For example, when designing a new section of the hospital at the Medical College of Georgia, an architect met with several former patients and family members to decide how best to meet the needs of patients at the hospital. They suggested to the architect that he design all the tables, chairs, and desks to accommodate the height of the many patients with spinal cord injuries who would use them. |
In another example, patients and family members were invited to come to a hospital to take photographs of all the signs in the hospital that were hard to read or understand. This group took many pictures, created a photo demonstration of all the pictures, and presented it to the hospital CEO who then asked the group to redesign all the signs and messages they had found confusing. Joanna likes this story because it’s a great example of how hospital leaders can close the gap between medical/hospital culture and patient culture.
Sometimes the biggest challenge for Joanna and her colleagues is to help nurses and physicians catch the vision for PFCC. When meeting with hospitals across the country, Joanna and her colleagues will often request that patients from those very medical centers attend training meetings so that providers can hear the good and the not-so-good stories of their very own patients. Some providers, though, will say to Joanna "But then patients will hear and see our dirty laundry!” Her reply: "They already know your dirty laundry. When a medication is forgotten or when a physician fails to identify himself appropriately, the patient sees this”.
"Patients have a perspective that we can’t have” says Joanna. "I am a nurse and I have a certain mindset that I was trained to have. Even as much as I think I know their perspective I don’t. I have a bias … When you sit down at the table [with a patient or family], the conversation changes because then you get my perspective, their perspective, and our perspective together”.
Joanna shares a story in which a hospital in the Baltimore Washington corridor decided to open ICU visiting hours to loved ones that patients could choose, including gay and lesbian partners. Although the chief nursing officer (CNO) believed this was an important step, many nurses disagreed and resisted the change. So, the CNO created a committee of nurses and volunteers that met together bimonthly for a year. They also held town meetings and invited patients and families invested in the issue to attend. During this time, nurses voiced their concerns about what they imagined would happen if the visitation policy was changed. The CNO often replied "Yes, but how would you feel if this was your loved one?” During that year, not one committee member missed a meeting and eventually the policy change was made and accepted.
For those who want to learn more about the IPFCC, Joanna suggests checking out the Institute’s website which offers an enormous amount of information, hospital profiles, videos, testimonials, and learning materials. The videos alone cover topics ranging from bedside rounds to cultural competency to health information technology. Joanna also encourages those who are curious about PFCC to attend one of the Institute’s conferences. The next conference is slated for April 15-18th in Annapolis, Maryland. "I promise you that you will be amazed” says Joanna.
|Matt Martin is a licensed marriage and family therapist and is currently working as a post-doctoral fellow with the Chicago Center for Family Health and the Illinois Masonic Family Practice Residency Program. He received a master’s degree in Marriage and Family Therapy from Brigham Young University and just recently a doctoral degree in Medical Family Therapy from East Carolina University. His interests include integrated primary care, behavioral health, and family medicine residency education.|