Nursing & Patient Care
A circle of care
Keeping patients and families at the center
Rosemary Costello, RN, OCN (right), meets with patient David Cushing and his wife, Mary.
In mid-September 2003, Rosemary Costello, RN, OCN, a nurse in the Head and Neck Multidisciplinary Care Center at Dana-Farber Cancer Institute, received a call from David Cushing and his wife, Mary. David had just been diagnosed with cancer of the tongue. Stunned by the news, he called Costello to see if he could obtain a second opinion from a physician at DFCI.
"Rosemary listened carefully to our story," Cushing recalls. "She agreed that getting a second opinion is always a good idea. Rosemary was tremendously reassuring and projected a confidence that the team at Dana-Farber was familiar with my kind of cancer and knew how to manage it. At that moment, I needed that sense of confidence more than anything else in the world." Within minutes of speaking with Costello, the Cushings called to schedule an appointment at DFCI for the next day.
Adult patients at Dana-Farber have access to the resources of both Dana-Farber and Brigham and Women's Hospital. While ambulatory care is provided at DFCI, inpatient care and some diagnostic services are provided at Brigham and Women's. This partnership is recognized as the Dana-Farber/Brigham and Women's Cancer Center.
In booking their first appointment, the Cushings started a journey that would bring them into contact with a wide circle of caregivers. Although the path was unfamiliar to them, it was well-charted and had been traveled by many patients and families before. The Cushings would soon discover why the Dana-Farber/Brigham and Women's Cancer Center is a model for multidisciplinary, patient- and family-centered care.
Multifaceted care, multidisciplinary planning
"Cancers of the mouth and throat can have an impact on a person's ability to talk, to swallow, and to breathe," explains Robert Haddad, MD, clinical director of the Head and Neck Oncology Program at DFCI and David Cushing's medical oncologist. "We typically use a combination of treatment modalities, including chemotherapy, radiation therapy, and selective surgery, and carefully plan treatment so that, whenever possible, we preserve important functions like eating and speaking."
Because a number of different clinicians can be involved in one patient's treatment plan, teams at Dana-Farber have been finely tuned so that the patient and family remain at the center of what is often a broad circle of care. Haddad notes, "In our work with patients who have head and neck cancer, our multidisciplinary approach to care starts with the very first visit."
During their first appointment at Dana-Farber, the Cushings met with Costello, Haddad, surgeon Laura Goguen, MD, and Anand Mahadevan, MD, a radiation oncologist. "I expected we would meet with each of the physicians in separate appointments," said Mary Cushing. "Instead, we met with Rosemary Costello and all three physicians together. The team was very direct and didn't hedge. At the same time, they were always supportive and offered a positive message when there could be one." At the end of the visit, the team discussed their findings with the Cushings and laid out the anticipated plan of treatment.
Over the next few months, Costello became an important resource for the Cushings. She spoke with them often by phone and e-mail, responding to their worries, answering their questions, and informing them of next steps. "From the start," says Costello, "we focus on helping the patient and family learn about their cancer and its treatment. It can be overwhelming for them, but I think the more they understand, the easier it is."
Sequencing treatment
After the first appointment, a well-choreographed sequence of events began. Five days after his first visit, David Cushing had a surgical biopsy to confirm his diagnosis and had an indwelling intravenous catheter placed in preparation for chemotherapy, which started two days later.
Infusion nurse Beth Cooley, RN, and David Cushing
The Cushings began each five-day chemotherapy cycle in the Dana 10 infusion unit, then went home with an infusion in place for the remainder of the cycle. "Going home with an infusion running can be overwhelming for a family," notes Beth Cooley, RN, the Cushing's nurse in the infusion unit. "During the six hours David and Mary spent with us at the start of each cycle, we taught them about managing the infusion and potential side effects. We emphasized that we were available 24 hours a day in case they had any questions." Costello arranged to have a home care company visit the Cushings regularly to check on the infusion, offer additional instruction, and provide needed supplies.
Although things were going smoothly, the Cushings found this early period emotionally exhausting. "The first few weeks were an incredibly emotional time," recalls David Cushing. "Things got easier as treatment fell into a routine and I saw things begin to progress. The biggest boost came after I completed chemo when we were told there was no longer any visible or palpable evidence of the tumor. Mary and I were ecstatic. The treatment team was happy as well."
Matching care to patients and families
As the weeks passed, Costello monitored David Cushing's progression through treatment, calling in different providers as needed. "All of us work as a team, and any one of us alone can't do the job," she explains.
Social worker Mary Ann Holcombe, LICSW, met with the Cushings early on to help them cope with the stress of the first weeks. After learning that the Cushings have a 14-year-old daughter, Holcombe turned to the resources of the Family Connections Program. Offered by the Department of Care Coordination in collaboration with Patient and Family Education, this program is designed to help parents and children cope when there is cancer in the family. Family Connections offered the Cushing's daughter a folio that included a journal and special reading materials tailored for teens.
The Cushings also worked closely with dietitian Stephanie Vangsness, RD. Because head and neck cancers and their treatment often affect swallowing, a dietitian typically becomes involved soon after diagnosis. Radiation therapy in particular, which David Cushing was scheduled to receive, can cause problems with eating and swallowing. Vangsness explains, "Patients typically experience significant mouth and throat pain during radiation therapy and often need to rely on tube feedings for nourishment." Vangsness met with the Cushings to assess David Cushing's nutritional status and to prepare them for the transition to tube feedings. After a feeding tube was placed, Vangsness stayed in touch, addressing additional nutritional needs as they arose.
Coordinating care across settings
Although much of David Cushing's care was provided by the team at Dana-Farber, clinicians in other settings also played an important role. At one point, Cushing was admitted to Brigham and Women's Hospital for a short stay. Although he was initially anxious, he was soon reassured by the way the inpatient care team and providers at Dana-Farber communicated with one another. He recalls, "Dr. Haddad visited me daily, and I could tell that he and Rosemary communicated regularly with the doctors and nurses in the hospital." During his stay, Cushing's nurses and physicians worked with a nurse care coordinator to plan a smooth return to home and ambulatory care.
The team's ability to coordinate across settings was put to the test again once radiation therapy began. The Cushings opted to have radiation therapy at North Shore Medical Center (NSMC) because of its proximity to their home. During the weeks of treatment, the Dana-Farber team communicated with the providers at NSMC and saw the Cushings during their weekly visits to DFCI.
One step at a time
Today, the Cushings face the future optimistically. Notes David Cushing, "Both Mary and I have worked in health care for many years. We've been so impressed by our care at Dana-Farber. From the start, it was clear that our team had a package all ready for us and that it would be tailored to meet our needs. It was so well organized, and this has been very reassuring." Adds Mary Cushing, "As anticipated by the team, the treatment has been quite difficult at times, especially during and following radiation. And David still faces a surgery and a gradual recovery over the coming months. Our team of nurses, doctors, dietitians, and others is helping us get through it all one day at a time."
Our thanks to David and Mary Cushing for their help in developing this story.
