The Cleveland Clinic's Taussig Cancer Institute: Patient Experience Reigns Supreme

The Cleveland Clinic’s Taussig Cancer Institute

The Cleveland Clinic has long been at the forefront of cutting-edge medicine and research. The center’s reputation as a world leader in a multitude of fields, including oncology, is undisputed, and it is consistently ranked as one of the top hospitals in America by US News & World Report.

Founded in 1921, the nonprofit, multispecialty academic medical center includes a main campus near downtown Cleveland with 1300 staffed beds, 9 community hospitals with an additional 3300 beds, and 15 Family Health Centers in Northeast Ohio. Cleveland Clinic also has outposts in Florida, Las Vegas, and Toronto, and it will open an outpost in Abu Dhabi in 2013.

With more than 250 cancer specialists treating some 26,000 patients each year, the Taussig Cancer Institute is one of 26 institutes at Cleveland Clinic that group together clinicians and scientists from multiple specialties. The result is a collaborative approach to care aimed at providing patients with the most effective diagnostic and therapeutic tools and techniques for achieving long-term survival and improved quality of life.

Brian J. Bolwell, MD

Brian J. Bolwell, MD, Cleveland Clinic’s vice chief of staff, former director of the Bone Marrow Transplant (BMT) unit, and newly appointed chairman of the Taussig Cancer Institute, acknowledged that a large institution known for its cutting-edge medical care can sometimes be perceived as cold when it comes to dealing with the emotional needs of its patients. With this in mind, Bolwell has made it his mission to ensure that Taussig, and indeed the entire Cleveland Clinic community, delivers its state-of-the-art care with an underlying patient-centric approach.

To this end, the Clinic is one of the nation’s first academic centers to have an Office of Patient Experience created to focus on and provide the resources needed to develop novel ways to address patient and family needs, shining a light on what Bolwell calls the patient experience.

Among the many examples of this patientcentric approach to care are Taussig’s new BMT Unit and Leukemia Floor, its Brain Tumor Support Group, and the CARES program.

Bone Marrow Transplant and Leukemia Floor

In August 2009, more than 100 Taussig Cancer Institute staff members attended a ribbon-cutting ceremony to mark the opening of a new state-of-the-art BMT Unit and Leukemia Floor on the hospital’s main campus. Extensive renovations were carried out to convert what was once a cardiac unit to a 44-bed, 25,000-square-foot floor designed to meet the highly specialized medical and psychosocial needs of patients with hematologic malignancies. A rooftop laminar airflow apparatus provides continuous centralized air treatment, removing 99.98% of potential pollutants and allowing immunocompromised patients to move freely about the floor.

“Research, including that of the Clinic, has shown that the presence of a caregiver, usually a family member, actually improves survival after allogeneic bone marrow transplantation,” said Bolwell. “The new BMT Unit and Leukemia Floor is an example of the way in which we’ve tried to capitalize on this type of benefit.” The new floor was designed with a number of features intended to make family members feel welcome and comfortable, including sofas or reclining chairs in patient rooms, as well as private restrooms, showers, kitchenettes, and laundry facilities for family members— amenities that also help to safeguard the health of immunocompromised patients. The floor also has its own dedicated lab and is fully wired for telemetry.

The Patient-Centric Philosophy in Action

To date, Cleveland Clinic physicians have performed more than 3750 bone marrow transplants and tout some of the highest BMT survival rates in the world. The new floor has seen an influx of patients with hematologic malignancies requiring BMT; this has resulted in the creation of more than 50 new nursing positions.

As researchers strive to improve survival for patients with hematologic malignancies (see “Research Generates Hope”), patients deal with a lengthy list of varied and complex needs related not only to their physical condition, but to their emotional well-being as they battle their illness.

“Dealing with a patient’s emotional needs is a top priority for its own sake,” said Bolwell. “But there’s little doubt that a patient whose emotional needs are met is in a much better position to deal with the physical rigors of cancer and its treatments.”

Cleveland Clinic Timeline

1921

1920s

1928

1930s

Early 1950s

The Cleveland Clinic is founded.

Cleveland Clinic cofounder George Crile, Sr, MD, establishes his reputation as a pioneering thyroid surgeon, with many of his surgeries performed to treat thyroid cancer. Cofounder William E. Lower, MD, is one of the first to perform suprapubic prostatectomy

U. V. Portman, Otto Glasser, PhD, and Valentine Seitz invent the dosimeter, leading to the formation of the allied health specialty known as dosimetry.

Urological surgeon Charles C. Higgens, MD, pioneers cystectomies for patients with bladder cancer.

George Crile, Jr, MD, pioneers conservative surgical techniques for treating breast cancer and becomes the leading American proponent for conservative surgery for most breast and thyroid cancers.

Continued below

A Safe Place to Share

Few things are more frightening than a cancer diagnosis, and a brain tumor is arguably the most frightening diagnosis of all. This is something well understood by the staff of the Cleveland Clinic’s Rose Ella Burkhardt Brain Tumor and Neuro-Oncology Center, who are as much dedicated to meeting the emotional and psychosocial needs of their patients and their families as they are to providing state-of-the-art medical and surgical care.

Founded in 1987 by oncology social worker Rene Barrat-Gordon, MSSA, and neurosurgical nurse Michelle Magdinec, RN, the Brain Tumor Support Group provides patients and their family members with a safe and nurturing venue for expressing their fears and sharing their experiences with others dealing with similar issues. “Patients with cancer, and certainly those with brain tumors, often feel a sense of isolation, believing that no one else could possibly understand what they’re going through,” said Kathy Lupica, MSN, CNP, who has been facilitating the group since 1991. “First and foremost, the support group lets patients know that they’re not alone,” she said.

Kathy Lupica, MSN, CNP

The monthly, hour-long meetings are open to all brain tumor patients and their loved ones, both from the Cleveland Clinic and other hospitals. The meetings are publicized on a variety of regional and national cancer-related Websites and resource lists. Support-group fliers are included in the binders given to all new brain tumor patients and also are posted in patient rooms and throughout Taussig.

Lupica, who facilitates the sessions with the help of oncology social worker Barb Savage, LISW, makes sure the participants understand that the meetings “belong” to them and will take the direction they choose. “We sit in a circle and, one by one, the participants tell their stories,” she said. “Invariably, that generates discussion about anything and everything, from medications and side effects, to symptoms, to the ways in which their illness and treatments affect their families, work lives, activities of daily life, and overall quality of life. Patients share their coping strategies and usually end up staying beyond the close of the formal meeting, talking, consoling one another, and exchanging contact information.”

Every session is different, but Lupica noted that even patients who were initially reluctant to participate never regret having attended. “There’s nothing like being with others who are dealing with the same issues you’re struggling with,” she said. “These patients relate to one another in a way that no one else can, and provide a kind of support that can be found nowhere else.” She added that there is as much benefit in giving as in receiving. “Patients who feel helpless and in need of support often find themselves helping their fellow participants. This is, no doubt, profoundly therapeutic.”

Currently, efforts are underway to quantify the benefits derived from such groups, and Lupica notes that a workshop on support groups is being planned for next year’s American Association of Neuroscience Nurses conference.

Scott Hamilton CARES Initiative

One of the most public and successful examples of the Cleveland Clinic’s patient-centered approach to care was launched by one of the country’s most public figures.

After being successfully treated at the Cleveland Clinic for testicular cancer and then a benign brain tumor, Olympic figure skating champion Scott Hamilton parlayed his gratitude into an opportunity to help others with cancer, becoming a lifetime spokesperson for the Taussig Cancer Institute, where in 1999 he founded the Cancer Alliance for Research, Education, and Survivorship (CARES) Initiative.

Brad Fellows

“What began as a life-altering diagnosis for Scott has turned into a lifelong mission to ensure that all cancer patients receive not only the best medical care, but also the best possible patient experience— all the while tirelessly supporting research aimed ultimately at finding a cure,” said CARES Initiative director Brad Fellows. The CARES program comprises 3 major components: the 4th Angel Mentoring Program, which matches newly diagnosed patients with trained volunteers who are also cancer survivors; Chemocare.com, a unique Website designed to help patients better understand the chemotherapy experience; and research funding.

“Scott is an advocate for the patient experience,” said Fellows, who explained that the skater speaks highly of his Cleveland Clinic caregivers, and wants every patient—celebrity or not—to receive the same level of care.

4th Angel Mentoring Program

Through the CARES 4th Angel Mentoring Program, newly diagnosed cancer patients and their caregivers are given the opportunity to share their most personal questions and concerns with someone who best understands what they’re going through: a cancer survivor or former caregiver of a patient with cancer.

Patients and caregivers in need of a mentor are referred to the free phone-based program by physicians, nurses, and social workers, at which point a 4th Angel program coordinator conducts an assessment before searching the program’s database for an appropriate mentor. The mentors, who are all screened and individually trained, are matched with their mentees according to type of cancer and treatment regimen, but also may be matched based on demographics such as age, work life, or family situation.

Cleveland Clinic Timeline Continued

1977

1980s

1990s

1992

1997

1999

2000

2008

2009

Cleveland Clinic Cancer Center performs its first bone marrow transplant and becomes a founding member of the National Marrow Donor Program.

Urological surgeon Andrew Novick, MD, proves that partial nephrectomy can be a successful long-term treatment for some patients with kidney cancer.

Cleveland Clinic researchers pioneer the application of novel growth factors to stimulate hematopoietic stem cells, revolutionizing autologous bone marrow transplants.

Cleveland Clinic’s Palliative Medicine Program receives World Health Organization designation as a demonstration center.

Cleveland Clinic opens one of the nation’s first Gamma Knife Centers, which today still serves as an international training center.

Olympic ice-skating champion and cancer survivor Scott Hamilton becomes a lifelong supporter of Cleveland Clinic by establishing The Scott Hamilton CARES Initiative to fund patient education, support programs, and research.

Taussig Cancer Institute opens on Cleveland Clinic’s main campus.

Charis Eng, MD, PhD, discovers 2 genes linked to cancer.

New state-of-the-art Bone Marrow Transplant Unit and Leukemia Floor opens.

Rather than answering medical questions, the mentors are there to guide patients through myriad emotional and day-to-day real-life issues that ensue from a cancer diagnosis, said Fellows. “Talking with physicians, nurses, and social workers is one thing. But there’s no substitute for being able to talk with someone who has ‘been there and done that’ and survived, and to hear what they did to cope,” he said. “It gives patients hope that they, too, can make it through what promises to be a difficult journey.”

At any given time, 4th Angel boasts roughly 400 active mentor—mentee relationships in 35 states and in Canada, and partners with multiple facilities, support groups, and hotlines, including that of the National Cancer Institute.

Josette Snyder, RN, MSN, AOCN

Questions Asked and Answered

As most patients can attest, the fear that comes with a cancer diagnosis is followed by a multitude of questions—questions that evolve over the course of the illness and treatments.

For those undergoing chemotherapy, Chemocare.com lists 300-plus chemotherapy agents, discusses potential side effects and management strategies, and includes information on other related topics, such as nutrition. “Rather than having to search the Web for their specific chemotherapy drug and then conduct additional searches to find out what to expect during treatment, patients have all this information on one easy-to-navigate Website,” said Josette Snyder, RN, MSN, AOCN, who manages the Chemocare.com Web site and is part of the CARESfunded Patient Resource Center.

Now in its 10th year of operation, the Website, which is routinely updated, gets approximately 900,000 visits each month— a number that is expected to grow to more than 1 million over the next year. The site’s content, all of which is generated by oncology specialists, is written in patient-friendly language but is often used as a resource by chemotherapy nurses, said Snyder.

Research Generates Hope

Currently, only about 40% of those in need of allogeneic bone marrow transplantation have a matched sibling able to donate the needed marrow. While the number of those eligible for transplantation has increased due to the 50-million-plus donors of marrow and peripheral stem cells registered through the National Marrow Donor Program, many patients continue to wait for a suitable donor.

The Cleveland Clinic is dedicated to speeding this process and making it safer, more effective, and more viable for larger numbers of patients in the following ways:

• Double cord transplants are currently the focus of a great deal of research at the Cleveland Clinic and throughout the country. Rather than relying solely upon retrieval of approximately 100 cc of cord blood prior to delivery of the placenta for use in allogeneic transplants, investigators are examining the feasibility of using an additional source of cord cells. The challenge associated with unrelated umbilical cord blood (UCB) transplants is slow engraftment; each cord has a relatively modest number of cells. While using additional matched, unrelated UCBs will add more cells to potentially facilitate engraftment, it may also be accompanied by an increased risk of graftversus- host disease—a concern that, to date, has not been realized.
• Investigators are exploring new ways to make allogeneic transplantation more feasible for older patients, who are more likely to have comorbidities that might otherwise make them poor candidates for the procedure. Rather than the large doses of chemotherapy typically administered prior to transplantation (with or without radiation), investigators are examining the safety and efficacy of reducing the toxicity of the treatment by substantially lowering the dosage of the entire regimen.
• Currently underway is a novel trial involving infusion of additional hematopoietic precursor cells with what are typically slow-growing umbilical cord cells. It is hoped that this will speed their growth.
• Also underway are studies designed to improve the efficacy of autologous transplants. As a national leader in the area of stem cell mobilization, the Clinic is involved in research aimed at novel ways to optimally treat patients to enable collection of sufficient donor cells for planned autologous transplant procedures.

As the hub of the Patient Resource Center, the Cleveland Clinic Cancer Answer Line connects patients and caregivers with advanced-practice nurses who field questions about anything related to their diagnoses and treatments. Snyder, who for the past 10 years has been one of 2 advanced-practice nurses in the Patient Resource Center, noted that calls come from Cleveland Clinic patients, as well as from those being treated at other facilities. She said the Cancer Answer Line is an invaluable resource, especially for those dealing with the wide range of questions that arise after diagnosis.

Research and Beyond

CARES was launched with an endowment and is now funded through an annual ice show and gala that are planned and hosted by Scott Hamilton. “Scott’s passion, energy, and charisma are infectious,” said Fellows.

To date, CARES has awarded 23 research grants that target first-time clinical and translational investigations being conducted by Cleveland Clinic researchers. “The idea,” Fellows explained, “is to give new researchers a jumpstart on their work, helping them to conduct preliminary research that will ultimately be funded by larger grants.” Fellows, who noted that an additional 3 to 5 grants will likely be awarded in the coming year, said the program has had a huge impact on the ability of new researchers to pursue their work.

There is no doubt that Hamilton feels a special connection with Cleveland, and with the Cleveland Clinic and its oncology staff in particular. It was in Cleveland where, 5 years after his diagnosis, he skated again for the first time. And it is every year in Cleveland where he holds “An Evening with Scott Hamilton & Friends,” the primary fundraising vehicle for his CARES Initiative. Now in its 12th year, the 2011 event, which is planned for November 5, will feature 9-time Grammy award-winner Sheryl Crow as the musical guest.

Fellows noted that the skater never misses an opportunity to visit with patients and staff when he comes to the Clinic, all while convincing his fellow celebrities to jump on the bandwagon and support his cause. “He’s been an inspiration to us all, and his national celebrity has truly shone a light on patient care and research and the need to continue on in our quest to improve both survival and quality of life,” Fellows said.

Laura Bruck is a Cleveland, Ohio-based freelance writer and editor who has specialized in healthcare reporting since 1987.