Listen to your patients when designing a program
The success of the outpatient mastectomy program at Johns Hopkins Breast Center in Baltimore can be attributed to patient input and systematic application of findings gleaned by tracking inpatient breast surgery data starting in 1974, says Center Director William Dooley, MD. Through 1992, while inpatient mastectomies were still the norm, clinicians reduced post-surgical nausea rates from 85% to less than 3% with preoperative administration of Zofran (a chemotherapy antiemetic) potentiated by 4 mg to 8 mg of the steroid Decadron.
Next, they took on the anesthesia hangovers. They administered propofol before surgery, followed by narcotics, intraoperatively, in small doses, individually finely tuned, so patients could breathe on their own without intubation throughout surgery. They applied local anesthesia while suturing. Patients were fully awake when they reached the recovery room. With the changes in anesthetics and nausea control, patients began to surprise the staff by reporting far less pain.
"We found that nausea creates the pain, not vice versa, as we used to think," Dooley explains.
Dooley and others still were concerned about the emotional outcomes if patients went home immediately after surgery. So they asked the patients what to do. Using the results from six months of post-surgery patient questionnaires, they created a comprehensive education program.
What education do patients need?
Education, delivered by master’s level nurse practitioners, starts at diagnosis. It grows out of what patients describe as their information needs. For example, genetic counseling is now an optional component for older patients with grown children and younger ones with sisters.
"When patients and their families attend these sessions together, it strengthens the bonds of support among them," says Dooley.
The Breast Center coordinates all stages of care from admission to radiology and home visits. Previously, these functions were spread throughout the institution.
The center is standardizing its program by defining the ‘what, when, and how’ of patient care as well as the criteria for delivery. Care milestones, for example, include dietary questionnaires and counseling for patient and family immediately after diagnosis. Performance standards for the staff describe what points to teach regarding, for instance, breast reconstruction or radiation therapy. "This standardization will enable everyone to know what clinical and educational issues have been covered with a given patient at two weeks after diagnosis, for instance," Dooley says.
Address psychological, emotional issues
Just as patients receive comprehensive training to act as partners in their treatment, staff education leaves no stone unturned, either.
Home care nurses receive in-depth training in the psychological and emotional issues related to breast removal and develop relevant communication skills. Taught by Allison Schuler, BSN, MN, OCN, the six-hour sessions include walk-throughs of the preoperative and recovery room patient teaching material.
Next, nurses study the questions that typically concern patients — fear of recurrence or changes in their sexual attractiveness — and learn clinically sound, compassionate responses. They become familiar with critical pathways and the issues they must chart following their visits — review of pain medication, drain function, and patient and spouse’s reaction to the surgical outcomes. The session culminates with cancer survivors sharing what furthered or hindered their progress in terms of their best and worst encounters with home care nurses.
Dooley advises that attending the emotional and psychological needs of breast cancer patients is the most critical part of care and healing.
"Patients can direct you to new ways of meeting their needs," he says. "Be open to it."
For example, the Breast Center staff based the timing and content of their preadmission education and counseling on patients’ feedback regarding their optimal readiness points for learning about healing options.