The patient care navigator’s role has been increasing over the past few years. Indeed, it is now an integral part of many breast health centers and other clinical programs. It is a critical role that deals with the psychosocial dimensions of effective cancer care. Indeed, the navigator function is a very necessary component for delivering truly seamless care. And, of course, it adds tremendous value and support for patients and their families.

As part of its Women’s Health Services, Lexington Medical Center (LMC), a 292-bed community hospital in West Columbia, South Carolina, offers a major initiative in the fight against breast cancer through their Breast Health program of rapid diagnosis, education, and support. Breast Health Services was designed to help women navigate the LMC medical system, to avoid the delays and roadblocks that too often occur in a busy hospital.

The chief navigator and advocate for breast cancer patients at LMC is Deirdre Young, Nurse Coordinator for Breast Health Services. She is a trained breast health specialist but her job is a multidisciplinary one. Young has spent the past 18 years working with cancer patients and currently reports to the vice president of Patient Care at LMC. "My purpose is to be available to our patients, to facilitate rapid scheduling for women who need it, make sure nothing goes awry, and assure that they have full access to all of the services and support they need," explains Young.

The Breast Health program was piloted in May 1998 and became a permanent program in August of that year. There are currently more than a thousand patient names in Young’s database.

A steering committee oversees the breast health program. Members include the President, Chief Operating Officer, Vice President of Patient Care, directors of Pathology, Radiation Oncology, Medical Oncology, Physical Therapy, an OB-GYN, and Young. This group meets quarterly while a Multidisciplinary Breast Conference committee, the same group less the CEO and COO, meet for a weekly breast health conference to review the most recent cases. "Any woman diagnosed with breast cancer within the past seven days has her chart reviewed. We often have very spirited discussions in terms of what is really best for the patient, the options that are truly viable, and we do not leave the room until we reach consensus on each patient. The patient is thus given the benefit of a second opinion by some 7-12 professionals at no cost to her. For me, the beauty of this process is that I don’t have to send my patients all over town seeking medical opinions. The patient receives the benefit of a thorough multidisciplinary review of her case," reports Young.

A patient is referred to Young through a collaborative network that includes Women’s Imaging, Pathology, Radiation and Medical Oncology, Surgery, and Social Services. She explains that "I am able to intervene with the patient before she reaches the biopsy stage to provide education, emotional support, and answer questions for the patient and her family and/or support persons. I am available at the entry level, not just when she has been diagnosed with breast cancer. We have done everything we can to make absolutely sure that no patient comes to LMC without my being aware that she is here and may need assistance. I am her primary resource. I am available to each and every patient by phone, email, or appointment for any support or questions. My beeper is on 24/7 and patients have my home phone number so they can reach me anytime they need me. This has not been abused and actually works very well for patients and myself. It gives them an important safety net."

If a patient calls LMC with a breast problem or concern but doesn’t have a physician, Young moves quickly to locate a doctor to see her, schedule her for a screening, and, if needed, provide access to financial assistance, all within 24 hours. LMC promises a patient a five-day process from detection to diagnosis. "Our hospital expects that our patients be given a definitive answer within five working days," notes Young.

Also, when a woman is scheduled for a diagnostic exam, she is automatically set up for a time slot that will accommodate an ultrasound or biopsy if she should need it. "The idea is to eliminate as many unnecessary steps as we can and give our patients an answer quickly and take very good care of them," she says.

Young normally interfaces with 25-45 patients at a time. In addition, she also maintains contact with patients who were diagnosed at LMC but who elected to have their surgery somewhere else because of insurance or physician’s place of practice.

With a continual flow of new patients, Young has a constant turnover in her patient load. Normally, she will follow a patient for approximately two months on a one-to-one basis. By this time, her patients usually feel confident in dealing with their situation. It is now unusual, however, for patients who have been out of contact for two years to get in touch with her.

Young passionately explains that "I am always their nurse. I am always available to them. I keep my records active so if someone calls and needs help I can easily pull her file. Most women will seek assistance through the first 6-8 months and then they have finished the active component of their treatment and are ready to solo, to go on to phase two, close surveillance. But I am always available, there is no drop-off point. The hospital put me here because it is morally and ethically the right thing to do. I am here to improve the quality of care." Young orchestrates a full array of clinical and support services for her patients.

Recognizing, like many other centers, that support groups provide an important dimension of cancer care, LMC has developed a network of support groups for their breast cancer patients. There is a group for recently diagnosed patients, one for long term survivors, and a newly implemented group for women with recurrent breast cancer. For one-to-one emotional support, patients are teamed with a peer buddy, a breast cancer survivor who volunteers to provide counsel and support. LMC also holds "Look Good, Feel Better" classes sponsored by the American Cancer Society and works with "Reach for Recovery" volunteers who are on the LMC staff. Young works hard to make sure that peer buddies are available to see patients on the same day they are at LMC for other appointments.

A registered dietician is also available to consult with patients regarding their nutritional needs. Also, important to breast cancer patients, there are three lymphedema therapists on site for management and massage therapy. A medical library is available for cancer patients and includes not only a wide selection of educational materials but Internet access with the key information sites, including major cancer centers, bookmarked to help patients find the information they need. "Our patients are by far the heaviest users of the Internet," notes Young.

LMC has recently opened an Appearance Center to provide extended support for cancer patients. Linda Koucky, Vice President of Patient Care, had a vision of bringing everything a woman needed to support her illness into one special, beautiful place within the hospital. The purpose: To provide a one-stop convenience for prosthetics, lingerie, wigs, anything she needs to enhance her feeling of self-esteem, to feel good about herself. "A lot of my patients hide when they have to wear a turbin because their hair is falling out, they feel very conspicuous, and they feel that their appearance marks them as a cancer patient. It is hard for them to go out and shop for a prothesis or wig because their self-esteem is so damaged they really don’t want to go anywhere," says Young.

Koucky thought that it "would be wonderful if everything were available in one beautiful setting where a woman could go right from her doctor’s appointment or treatment and get what she needs in an atmosphere of support, privacy, and to be able to shop without having to run all over town. To be served by someone who truly understands her problem." The Appearance Center manager is trained to fit wigs and prostheses on site and oversees a staggering array of merchandise.

The medical center wanted the Appearance Center to be a service to women who use LMC, not only breast cancer patients but anyone whose treatment requires appearance products and services. As expected, cancer patients are among the most frequent users. Linda Secher, owner of Appearance Center Consultants was the consultant (see The Ireland Report, May/June 2000). Secher views the Appearance Center as an extension of every medical practice whose patients need appearance products in a supportive, warm, one-stop environment.

"The very first thing I tell my patients is that knowledge is power. My first priority is to give them as much information as appropriate for their learning level and educational background so they will clearly understand what their disease involves. I explain treatment guidelines so that they know their options and the criteria for determining their treatment. This process, of course, includes the spouse and family and anyone who is impacted. Most women want as much information as possible, they want multiple opinions from the treatment planning conference, and they want to network with other women. They want the ‘full-court press’ because the more they know, the more control they will have over what happens to them. I tell them that although you did not have any control over whether or not you got breast cancer, you can control what you know, how you feel, and the decisions you’ll make," explains Young.

Regarding patients with recurrent breast cancer, Young explains that "For a long time there was a misperception that a woman diagnosed with recurrent cancer already had all the information she needed. But in reality, she often goes back to searching for the latest information. And she will examine what the initial treatment was and what she needs to do differently. Very likely she will feel angry, that something in her first treatment failed her, that something went wrong. I carefully review everything with her and we start over. We go back to the breast cancer conference and look at all the data, her complete record of care. But her case is reviewed as that of a new patient. Also, understandably, these women do not feel comfortable venting their anger and frustration on their personal resource supporters (spouses/family/clergy) so they look outside their circle to us in order to find someone they can work with."

More and more women are being diagnosed in Stage O or 1 because the LMC breast health program has been very aggressive in getting out into the community with breast screening programs. "We are doing a better job in educating physicians to not ignore a woman with a lump in her breast because she appears to be in a demographic category that is low risk. We know that 75 percent of women diagnosed with breast cancer had no risk factors. So it is the woman who doesn’t seem to be a problem that you need to really worry about. I am sometimes like gum on their shoe. But that is really okay. I can live with being a little aggressive if that is what it takes to help my patients. I just cannot live with the feeling that I may have failed my patients because I may have lacked the courage to say that this is not good enough, we can do better," Young explains.

In the future, Young expects to expand her community outreach and go into outlying areas to let women know that the breast health program is available. She anticipates that a lot more breast conservation surgery will be done. "Our treatment is better and more efficient. And the cosmetic result is better with the patient, of course, being much happier. All of this has been the direct result of our breast health program," she reports.

Regarding her breast health program, she concludes that "We deliver better care, in a much more efficient system of services, and most importantly, it meets patients’ needs."

Deirdre Young is a special person, in a special place, giving her patients all that they need and much more. She is an exemplar in providing support, advocacy, and navigation for her patients.

§§§

More information is available on the LMC Breast Health Program and Women’s Imaging Center www.lexmed.com/breast.htm.

From The Ireland Report on Succeeding in Women's Health, September/October, 2000.

© The Ireland Corporation/The Snowmass Institute, 2001. All Rights Reserved

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