Caroline Etland, right, oncology clinical nurse specialist at Sharp HealthCare, discusses a treatment schedule with patient Glenda Shekell. Patients and family members are given special links to Web sites, such as cancernavigator.org, which navigates through the cancer care system in San Diego.

A road trip in a foreign country can be easier to navigate than cancer treatment in a health care system for one simple reason — someone has provided a map. The good news is hospitals are getting better at helping patients navigate the journey between and after diagnosis and treatment.

Being told you have cancer often is just the beginning of a difficult and confusing time. Treatment crosses multiple hospital departments, physicians and has many phases. After a doctor gives a patient the bad news, what happens next can greatly influence the desired recovery. When it happens right, the doctor, the patient and the patient’s family or close support network work together cohesively on a treatment path.

Scripps Treatment Team Includes Family Members

Scripps Hospitals treat more cancer patients than any other health system in San Diego County. When a patient first sees Oncologist William Stanton, associate director of the Scripps Cancer Center, that cancer diagnosis already has been delivered. Dr. Stanton works with, and relies heavily on, clinical social workers, “who literally see every new diagnosis within the hospital and those people we refer from our office practice,” to assist him and his patient toward treatment and recovery.

Stanton says treating patients today is very different from a decade ago. Not only is medicine treating the whole patient, rather than just the disease symptoms, but patients are more involved. They tend to bring with them information they have downloaded from the Internet or have obtained from books.

Cancer patients at Scripps take an active role in helping determine their treatment. “It used to be that if a woman came in with a breast lump, she was told she would be going in the hospital tomorrow and going to maybe have her breast removed,” Stanton says. “Now there is no end of discussion of therapeutic options.” Doctors look at the patient and where they are in life and their goals. Treatment of a 30-year-old with three children may seek every option to extend life while an 80-year-old with the same diagnosis will want only to be comfortable.

To better understand the options, Stanton suggests his patients visit with others already undergoing treatment. With permission, Stanton will invite a newly diagnosed patients into the treatment room to speak with whoever may be in at the time.

Oncologist William Stanton, associate director of the Scripps Cancer Center, says he works with clinical social workers and his patients in deciding treatment options. Scripps Hospitals treat more cancer patients than any other health system in San Diego County. (photo/alandeckerphoto.com)

Because that initial session can be overwhelming, people like Mary Callaghan, an advance practice nurse at Scripps Cancer Center, are around to later translate and reiterate the physician’s counsel. Callaghan says care is much more integrated, with the focus on the patient and their family. The treatment team is made up of the patient, their family, physicians, nurses and social workers who work together to come up with the plan for care.

Scripps also is using its nurses and social workers to expand a patient mentorship program. “All the hospitals and physician offices have key patients they can hook up with newly diagnosed patients,” Callaghan says. Scripps social workers also work with the American Cancer Society to team new patients with recovery patients.

For a single point of contact, Scripps has opened a cancer help line — (877) 226-2374 — staffed by Susan Grady, a cancer information specialist. “In August the phone lines went live,” Grady says. “It’s been slow to start but things are picking up. The concept is to integrate all cancer treatment areas of the five hospitals. A lot of my calls have been from people calling out of state; wanting second opinions. I think because of Scripps’ reputation and going online, it is starting to build.”

Grady has immediate access to physician referrals, support groups and patient assistant programs. She is building a community services data base that will encompass everything from how to get a ride to the doctor’s office to a referral to Scripps social workers. “This is a place for people to call one number and be able to get information on where to go next.”

Funding for the health line and nurse training comes from the Scripps Cancer Center. A lot of the programs in the center rely heavily on the fund-raising efforts of Scripps Health. “The giving of Scripps Cancer Center has grown annually for the last several years,” says Stanton. “We are very lucky.”

Scripps information can be found at scripps.org/41.asp.

Screening Tool Uncovers Biggest Concerns

At the Rebecca and John Moores UCSD Cancer Center, Matthew Loscalzo, clinical associate professor of medicine, says patients usually have concerns and questions even before receiving the results. “We recognize that seeing an oncologist is always scary,” he says. “So we attend to these concerns in advance: who you should bring with you, driving and parking directions, the name of someone with whom to speak if you are anxious, and what information to bring with you. All of these pieces begin the relationship with the patient knowing that they are part of a knowledgeable and caring team.”

Loscalzo was hired about four months ago as part of center director Dennis Carson’s overall vision for the Cancer Center, which includes a strong focus on enhancing clinical services for patients, particularly as UCSD moves closer to the opening of its new cancer center in spring.

At the time of diagnosis, the patient first needs to know what comes next in clearly defined practical steps. UCSD’s oncology social worker is available to all patients and family members to provide emotional support, counseling, information about the disease, coping and community resources “such as the American Cancer Society if the person wants to speak to a cancer survivor,” Loscalzo says. “At diagnosis, the patient generally does not want to attend a support group. That usually happens when treatment is over. When diagnosis occurs, people need one-to-one attention.”

UCSD Cancer Center has a program that uses a unique screening tool that allows new cancer patients to communicate their needs on the first visit. The form takes about two minutes to complete and was pioneered at Johns Hopkins by Loscalzo and James Zabora, dean of the School of Health Sciences at Catholic University of America in Washington, D.C. “This is presently the only program of its kind in the country,” Loscalzo says. “These needs may be physical (pain, fatigue, etc.), emotional (managing feeling) about control, impact on family, guilt, shame, fear), practical (insurance problems, transportation, etc.), psychological (anxiety, stress, depression, etc.) or spiritual (giving meaning to the cancer experience). Depending on the needs identified by the patient, a referral is made to the correct person or resource.”

Matthew J. Loscalzo, clinical associate professor of medicine at the Rebecca and John Moores UCSD Cancer Center. (photo/alandeckerphoto.com)

The treatment path at UCSD begins with nurse case managers and a social worker providing a Cancer Center orientation. Social workers also maintain a comprehensive book, available to all patients, that lists community cancer services and resources. In addition, the orientation booklet lists community support groups and resources. However, Loscalzo says, national studies show support groups are attended by less than 10 percent of cancer patients and most people want information and support that is carefully tailored for their unique situation. “Men especially do not attend support groups unless there is a very strong educational component,” he says.

The patient and family are seen as the unit of care. Family members are strongly encouraged to participate at all stages and levels of interaction as it relates to the giving of medical information and treatment. For patients alone at the crossroads, referrals are made to community organizations that provide mentor programs. “Cancer is hard,” Loscalzo says. “The big story in humanistic care is psychosocial screening of all new patients for common problems and symptoms. By asking at the first encounter, patients are oriented to the fact that the Cancer Center cares about them and sees them as persons within a social milieu, and they have strengths to be used and enhanced to support their coping efforts.

“California has lagged behind the rest of the nation in providing for the psychosocial needs of cancer patients and their concerned loved ones,” Loscalzo says. “The commitment of the Moores UCSD Cancer Center to reintroducing the humanistic care as an essential element of cancer medicine serves as a bridge for cancer patients to maintain their connection to their families, to their communities, and to return to normalcy as soon as possible. Psychosocial services are the connective tissue between medicine and society that minimizes the sense of fear and isolation all too common to the person confronted by cancer. Psychosocial services puts the person back into the patient.”

UCSD offers more information online at cancer.ucsd.edu.

Palomar Pomerado Directs Resources

Palomar Pomerado Health in North County helps its patients feel comfortable seeking direction in cancer treatment and directs them to Pomerado Hospital’s Cancer Resource Center. Books, pamphlets, videos and audiotapes on all cancer diagnoses and every aspect of cancer care are available. More importantly, says Kay Kimball, center coordinator, an oncology certified nurse is available to speak with patients and families Monday through Friday to answer general questions regarding diagnosis, up-to-date treatment, survival issues and community resources.

Kimball says the clinical approach to treating cancer has changed as more information about the way cancer behaves — and how to treat it more effectively — emerges. “Because we are able to use that information, we can increase cure rates and survival times in a way we could never have done 10 years ago. Because we have gotten so much better at treating cancer, we have had to identify and respond to the concerns and issues of cancer survivors. This is why Palomar Pomerado Health is vested in providing support and resource information for patients and families alike, through the resource centers.”

Assistance and guidance is provided for the patient. Options and specialized programs are growing. For patients needing special help, Partners for Community Access provides a free bilingual and bicultural patient navigator.

In the community, PPH sponsors ongoing women’s cancer support groups in Escondido and Poway. A Susan Komen Foundation grant, providing breast diagnostic services for underserved women, is directed through the PPH Resource Centers. The PPH Women’s Health Connection Boutique provides wigs, caps, hats and mastectomy products at discounted prices for women undergoing treatment for cancer. PPH sponsors a breast cancer support group, a women’s cancer support group and a survivors’ exercise group. In conjunction with the American Cancer Society, PPH hosts the Look Good, Feel Better Program several times throughout the year.

For information on Palomar Pomerado Health cancer care, visit pph.org or call (858) 613-4044 or (760) 739-3943.

Sharp Gives Patients Treatment Snapshots

When the final diagnostics and pathology tests are confirmed at Sharp HealthCare, the patient meets with the physician to discuss the options and a treatment schedule is planned out, says Caroline Etland, Sharp oncology clinical nurse specialist.

“In many cases, the patient’s physician and/or treatment nurse is the advocate for the patient,” Etland says. “Patients also have access to a social worker or educator for the duration of their treatment to ask questions and receive support. Patients are also given special tasks to help empower them to make changes for themselves.”

To ease the patient’s way, Sharp provides a snapshot of steps to be taken throughout the treatment process. “Patient and family teaching is ongoing, and a list of names and phone numbers is provided so patients can call anytime to schedule time or ask questions about their treatment and receive emotional support,” Etland says.

Family is an important part of treatment and recovery. It’s also understood that dealing with an ailing family member is hard on everyone else. Members are given written information and special links to Web sites and pages to educate and help them cope with their feelings about the situation. Teaching is consistently reinforced by the social workers and nursing staff by reminding patients and their families there is no way they can remember everything told to them during the process and they are encouraged to keep asking questions.

Knowledge is important, so Sharp makes available classes and pamphlets, and provides information about Web sites for patients. Many classes are free and offered at Sharp Hospital’s different sites. Patients also are given contact names and numbers at the American Cancer Society to help find groups of patients in their same situation and disease state.

Sharp Grossmont has specialized support groups that meet at the hospital several times a month. Specialized programs are done on a case by case basis with the social worker and/or clinical nurse specialists of patients and families who need special support. “Depending on the needs of the patient, they can have as little or as much education and help finding things through the social worker or clinical nurse specialist assigned to them,” Etland says.

“Our care of cancer patients at Sharp Grossmont Hospital has evolved over the years to provide more comprehensive treatment and education in one place,” Etland says. “Cancer is a chronic illness, and because the drugs and treatment are getting better and prolonging life, we have had to learn how to manage the symptoms and keep the education channels open for all patients and families. The oncology nurses are also better trained and provide psychosocial support to teach patients and families how to cope and live with the disease and treatment.”

Sharp information can be found at Sharp.com.

Outside The Hospital

All of the hospitals work with the American Cancer Society and encourage patients to look into what the organization offers. One program that frequently comes up is called “I Can Cope,” an eight-week wellness class conducted three times each year. These free classes cover topics pertinent to maintaining health following a cancer diagnosis.

Also available for county residents is Cancer Navigator, a program supported by tobacco settlement funds that serves as a resource for cancer information, services and clinical trial. Cancer Navigator has a Web site, cancernavigator.org, and is a call center that serves as a central repository of links to cancer information and services in San Diego County and nationally. Information is available in English and Spanish.

With all that is available, all roads to cancer treatment are becoming better traveled. More options and more ways to find these resources are available. The best part: Nobody, patient or family member, has to go it alone.