When she was six months old, Tiffany Christensen was diagnosed with “the gift of cystic fibrosis.’’
Even as a young child, “I remember having a sense that this disease is something I was given on purpose,’’ Christensen said, as she told her story to more than 200 physicians, nurses and staff at Christiana Care’s inaugural patient- and family-centered care conference on Feb. 1. She also gave a presentation the following day at the “Perioperative Perspective: Latest Trends and Practices” conference at Christiana Care.
In 1973 when she was diagnosed, Christensen’s parents were told she might live about eight years. Today, two double lung transplants and multiple hospitalizations later, she is a patient advocate at Duke University Hospital, and an author and public speaker, drawing on a lifetime of experience to improve the way patients and their medical caregivers work together by practicing patient- and family-centered care.
Offering what she called a “Bed’s Eye View of Patient and Family Centered Care,’’ she said it was during her first hospital stay of three weeks at age 12 that she got the first taste for the need to be an advocate. “I knew I needed to understand what was happening around me,’’ she said.
By age 21, Christensen was sick almost all the time. She had to give up her dreams of acting and drop out of the North Carolina School of the Arts. Cystic fibrosis, a genetic disease that affects the lungs, took over her life. She was put on the waiting list for lung transplantation.
Her first scheduled transplant was aborted at the last minute because the donor lungs were compromised by a medical error. When Christensen awoke from anesthesia, her doctor had to break the news. “He stood next to my bedside, explained it to me and apologized from the bottom of his toes,’’ she said. “It was the way he spoke to me that allowed my family and I to move forward from that day with trust.’’
In April 2000, she finally received a double lung transplant. Lying in bed and appearing to be unconscious, “I was absolutely aware of what was happening around me and to me,’’ she said. “There were staff members that understood that, and staff members that didn’t understand that.’’
Some would talk about her just out of earshot, and she would strain to hear. Others spoke to her as if she were wide awake, touched her and updated her on her condition. Those are the staff members “I couldn’t wait to see,’’ she said.
Within a couple of years, her breathing became difficult again and she was diagnosed with chronic rejection. She was told another transplant was not possible, and at the age of 30, she prepared herself to die. After a period of mourning, she said, “I found myself in a place of acceptance, with the understanding of my childhood, that cystic fibrosis was my greatest teacher, and I was grateful.’’
And then a new transplant coordinator put her back on the waiting list. Four months later, she found herself being wheeled back into the OR.
“The first time, I had the luxury of naivete,’’ she said. “This time around, I knew it was really difficult and had been prepped to expect it would be much more difficult the second time. My fear was overwhelming.’’
Everybody reacts to nervousness differently. For Christensen, it meant babbling in the operating room about her favorite TV show.
“Not one person in the OR acknowledged that I was speaking,’’ she said. “I understand everybody in the room was following a specific safety protocol … and I believe the leader in the room could have asked someone to come to my head and talk to me. It was only two minutes, but from the patient perspective, that was the most alone I’d ever felt in my life.’’
Now, nine years post-transplant, Christensen has devoted herself to making the experience of illness and hospitalization less stressful and more effective for patients and their medical teams.
“Being a patient is a lot like having a full-time job,’’ she said. The trouble is there’s no training for it. It takes the combined efforts of patient advocates and advisory councils, staff committed to the principles of patient-centered care and programs that encourage participation of patients and families in partnership with health care providers.
That idea fits perfectly with The Christiana Care Way, which is Christiana Care’s promise to “serve our neighbors as respectful, expert, caring partners in their health,’’ said Edmondo J. Robinson, M.D., MBA, FACP, physician-in-chief, Wilmington Hospital, and associate chief medical officer of Christiana Care. “These are not disparate concepts,’’ he said. “Patient-centered care enables us to live The Christiana Care Way.’’
As a philosophy of care, patient- and family-centered care incorporates the guiding principles of respect and dignity, information sharing, participation and collaboration, which shape staff interaction with patients and their families, as well as hospital policies and programs. The approach is being embraced throughout Christiana Care Health System, said Diane Bohner, M.D., FACP, medical director, Patient & Family Centered Care and Resource Management, and the challenge is to continually improve. “We will be working on this every day for the rest of our lives,’’ Bohner said.
Efforts include partnering with patient and family advisers to create more effective systems of care, and also changing the way doctors and nurses interact with patients and families at the bedside. For example, doctors and nurses are encouraging patients and their family members to actively participate in clinical conversations during hospital rounds. This partnership not only helps families to understand what’s going on; it also helps the care team to ensure that they’re considering all of the relevant information about the patient.
Christensen spoke of “gifts and privileges,’’ said Robert Laskowski, M.D., MBA, president and CEO of Christiana Care. “It is a profound privilege we have to care for our neighbors in this community. At the end of the day, it is our job to help our neighbors live the lives they want to live.’’