Being a Product of the Product: Pilates and Breast Health Navigators

Used with permission from Balanced Body

“Be a product of  the product.” That’s the mantra of EduCare founder and registered nurse Judy Kneece. And it’s solid advice for those who believe they should practice what they preach. But it takes on a different meaning when you discover what business EduCare is in.

EduCare founder Judy Kneece on a Reformer at the company’s headquarters

 “We train breast health navigators,” says Judy. “These are nurses who meet with patients as soon as they hear the understandably scary words ‘You have breast cancer.’” EduCare’s navigators coach the patient for the entire continuum of breast cancer care, from pre-surgery through surgery, chemotherapy and beyond.

EduCare has trained over 2,300 navigators who work in hospitals and breast centers all over the world since it opened its doors in 1994.

Three keys to recovery

Judy says it is crucial for a navigator’s patients to understand that there are some things in recovery that no one can do except themselves. After that steely mindset has been established, a breast cancer patient must understand three principles for recovery:

1.       Positive thought

“Every thought we have causes a cascade of chemicals that washes through our body. They can have a positive impact when we think of joyful, peaceful, helpful thoughts. But when we think of negative things like anger, fear and worry, these thoughts actually have a paralyzing effect on the immune system. It impairs recovery. The patient has to realize that they alone can determine what and how they think.”

2.       Nutrition

“Patients are responsible for everything they put into their mouths. Chemotherapy and radiation therapy “kill” cancer cells but “damage” healthy cells that have to be repaired. Only nutrients can do this and only the patient can really dictate what she eats. Every spoonful has to count.”

3.       Movement

“Exercise is a necessary component of healing. The body’s cellular waste sits in the lymphatic system until we move it out. Unlike the vascular system, the lymphatic system does not have a pump. Without exercise to help move fluid through the lymphatics, we actually become a toxic waste dump – particularly for patients in chemotherapy. It is the muscular contractions around the lymphatic that cleans our body and greatly facilitates recovery. Exercise also reduces fatigue, helps alleviate pain and elevates the mood of patients.”

Being a product of the product

For Judy, it’s not just the patients who have to comply with these principles; it’s the navigator’s responsibility as well. “You can’t teach what you don’t do yourself. It comes off as insincere,” she says. “During my training sessions I create a positive environment where the navigators experience exactly what we want them to teach their patients.”

At the four days of intensive training, the navigators eat nutritious meals, learn to think with a positive thought foundation, and are introduced to gentle movement. All of this helps them switch from the clinical focus ingrained in most nurses to actually building a healthy, healing environment in their own bodies.

Pilates is a big part of that.

“I have done Pilates for ten years,” Judy says. “I know what it has done for my body and I have seen magnificent results in other people as well. It is my first recommendation to patients as a method of exercise. Pilates empowers the breast cancer population because it is extremely effective yet gentle on the body. A breast cancer survivor has to move in order to heal, but many types of post-surgery exercise can hurt them. Pilates is the exception.”

Throughout the EduCare training session, Judy employs a trainer (also a Pilates instructor) to introduce Pilates and yoga to the navigators. They learn mat exercises and are encouraged to find a mind-body exercise program near their home or work. Judy also uses a DVD with specific exercises for breast cancer patients to restore range of motion to the surgical arm. “The video is key, because the navigators can buy it and loan it to patients for home use,” she says. “Or – if approved by the patient’s doctor and physical therapist – they can actually design a home exercise program for their patients.”

Pilates has become such a big part of EduCare’s program that Judy recently bought two Reformers for the EduCare office. “We have them in our “energy break” room and we are thrilled to be able to use them,” she says. “It is so good for both the body and the mind and really refreshes us so that we are at the peak of our game.

“And we really are playing a life-changing game.”

EduCare Announces the Release of the Eighth Edition of Breast Cancer Treatment Handbook

EduCare is pleased to announce the release of the eighth edition of the Breast Cancer Treatment Handbook. First published in 1995, this easy-to-use book features the newest treatments, continuing research about survivorship, graphic illustrations and practical tips for helping the patient navigate the cancer journey.

With more than 295,000 copies in use, the Breast Cancer Treatment Handbook is a trusted patient navigation guide for up-to-date clinical information, clear explanations of tests and treatments and recommendation-free guidance. The new edition now offers additional material on emotional recovery, survivorship and healthful living. Eighteen tear-out worksheets help a patient prioritize and organize the questions she must ask her medical team in order to actively participate in her treatment. An expanded glossary, a drug reference section and an updated resource list further empower patients.

“Understanding the disease, treatments, emotions and recovery from breast cancer is just as important as the medical treatment a woman receives,” says Judy Kneece, R.N., OCN, President of EduCare. “We wrote this book for every woman diagnosed with breast cancer to inform and empower them with a complete road map for their journey from diagnosis to recovery.”

EduCare Inc., a dedicated breast health education company, was founded in January 1994 by Judy C. Kneece, RN, OCN. In the past 18 years, Judy has trained over 2,200 breast health navigators to guide patients through their cancer journey.

The eighth edition of Breast Cancer Treatment Handbook is available directly from EduCare. Orders may be made through the company website at www.EduCareInc.com or by phone at 843-760-6064.

Access to Oncofertility Options for Rural Cancer Patients

Cancer Navigators working in smaller rural cancer centers often face a challenge in arranging a timely fertility consult for a newly diagnosed cancer patient. Time constraints due to the need to begin cancer therapy, along with the distance required for the patient to travel for the consult, frequently cause patients to forgo the fertility preservation options discussion before treatment. Following cancer treatment, many patients want to investigate their fertility options.

Cancer Navigators not working in a facility with a fertility specialist, now have access to an online  Fertility Patient Navigator, providing the opportunity to better educate young patients about fertility options.  The new website, hosted by the Department of Obstetrics and Gynecology at Northwestern, has been designed to assist young patients in learning about their reproductive options in the midst of a cancer diagnosis or after treatment for cancer. The website, Patient Navigator for Fertility Preservation, provided by the Oncofertility Consortium of Northwestern University, has a Fertility Patient Navigator, Kristin Smith, available to answer questions about reproduction options surrounding a cancer diagnosis. She is experienced in talking to patients and providers about the best reproductive options for cancer survivors at all stages of treatment.

The web site has an interactive tool to provide information for patients before or after puberty, and before or after cancer treatment.  At his/her convenience, the patient can watch tutorial videos explaining how fertility is impacted by chemotherapy, radiation therapy or surgery.  Personal stories from others who have selected different types of fertility preservation are also available for viewing. This new website should be an excellent resource to help Cancer Navigators educate their patients about fertility options.

Have any of you working in rural areas dealt with this issue? How have you managed it?

Breast Health Navigator Challenge: Overseeing Patient’s Surgical Arm Range of Motion Restoration

One of the major roles of a Breast Health Navigator is to see that each post-operative patient, after undergoing a lumpectomy or mastectomy, has her physical range of motion restored to her surgical arm.  Most often, the patient is given written instructions and instructed to perform a set of recommended range of motion exercises at home until their physical range of motion is restored.  She is then expected to perform the recommended exercises at home under her own initiative.

Some women accept the challenge and perform the exercises as instructed, while some find it difficult to read the instructions and perform the exercises.  Having a coach, either a support partner or a healthcare professional, increases the likelihood the patient will be consistent and achieve full range of motion before they discontinue the program either from boredom or frustration.

Failure to perform the exercises and restore range of motion can result in future limited use of the arm.  This can cause difficulties with everyday tasks, such as zipping a back zipper or combing hair using the surgical arm. Occasionally, failure to exercise can result in a frozen shoulder which extremely limits normal movement and causes stiffness and pain.  Frozen shoulder occurs from scarring, thickening and shrinkage of the capsule that surrounds the normal shoulder joint.

Treatment of a frozen shoulder usually requires an aggressive combination of anti-inflammatory medication, cortisone injections into the shoulder and physical therapy. Without aggressive treatment, a frozen shoulder can be permanent. Physical therapy is often essential for recovery and can include ultrasound, electric stimulation, range of motion exercise maneuvers, stretching, ice packs and eventually strengthening exercises. Physical therapy can take weeks to months for full recovery, depending on the severity of the scarring of the tissues around the shoulder.

It is essential that patients are encouraged to comply with the stretching and range of motion exercises to avoid either limited movement or having a frozen shoulder.

Some large breast centers address the problem of compliance by referring patients to a Physical Therapist or to a post-surgical group exercise program for patients.  Patient compliance increases with increased encouragement from the personal interaction when attending a group or from the personal coaching provided by the Physical Therapist.  But what about the woman who has time and travel constraints and this is not a viable option?  For these women, achieving maximum rehabilitation can be a challenge.

A good solution is a new DVD, the Breast Cancer Survivor’s Guide to Physical Restoration, written and directed by a Dr. Suzanne Martin a Physical Therapist.  It is now available for breast cancer patients for at-home coaching. Dr. Martin’s video provides instruction for a complete physical rehabilitation program through a 30-minute daily workout program. The DVD includes nutritional guidelines along with a daily Pilates workout to increase core stability and strength. The video is designed for post-op rehab from breast cancer related surgeries including lumpectomy, mastectomy and reconstruction. Dr. Martin includes a self-test to measure surgical arm range of motion, a chest wall lymphatic massage demonstration and the foundation for restoring core strength and posture. The video is 108 minutes in length.  The cost is $19.95, making it affordable for most patients.

For Breast Health Navigators, this is an excellent answer to the challenge of surgical arm physical rehab and an excellent tool to recommend to patients. For women who cannot afford to purchase the video, it could be purchased by the facility and loaned out to patients during their arm rehab period after surgery and then returned to the facility. The DVD can be ordered here. Or, you may contact Balanced Body by phone at 1-800-745-2837.

Have any of you used this video yourself or with your patients. What are your thoughts on it?

 

Commission on Cancer Distress Assessment Recommendation Impact on Navigators

The Commission on Cancer (CoC) has recommended regular on-site psychosocial distress screening for all cancer patients outlined in Cancer Program Standards 2012: Ensuring Patient-Centered Care. The CoC emphasizes the importance of screening patients as a critical first step to providing high quality healthcare. According to Institute of Medicine, distress is any psychological, behavioral or social problems of a patient that interferes with their ability to participate fully in their health care and manage their illness and its consequences.

“Distress should be recognized, monitored, documented and treated promptly at all stages of disease,” recommends the CoC. The goal is to identify patients with distress or barriers to care and provide them with resources or referral to healthcare providers prepared to modify their identified problems.

The CoC recommendation is a huge advancement in keeping with up the great strides in medical treatment over the past decade. Now cancer patients can be ensured that their psychosocial needs will also be addressed.

Like any new mandate, the question arises, “Who will be responsible for implementing the standard?”  It seems fairly obvious that the responsibility will fall mainly to nurse navigators because of their continuous relationship with the patient across the continuum of cancer care. Other appropriate caregivers for patient assessment include oncology social worker, clinical psychologist or other mental health professional.

The Nurse Navigator’s role has traditionally included reducing patient barriers and relieving psychosocial stress through education. The major difference with the new recommendations for most Navigators will be that these assessments now have recommended criteria on time of administration, documentation of referral and follow-up.

Implementing Process Requirements:

A distress assessment should be made soon after a patient enters into care to remove any barriers that could prevent them from receiving adequate medical treatment for their disease.

Timing:

  • Recommended distress screening times are at major transitions in care: diagnosis, presurgical and postsurgical visits, first visit with medical oncologist, first visit with radiation oncologist, post chemotherapy or radiation therapy treatments, and any major transitions during and after treatment.
  • The results of the assessment should to be documented and referral to an on-site or outside care facility should be made to address problem.
  • A report on findings and referrals should be made to the cancer committee annually.

Method:

  • The assessment can be a written patient questionnaire or a clinician-administered questionnaire.

Distress Assessment Tool:

  • The distress assessment tool should be a standardized, validated instrument with established clinical cutoffs. Each facility can determine the cutoff score used to identify distressed patients.

Distress Referral:

  • Patients identified with distress (barriers) should be addressed with appropriate interventions by the Navigator or referred to resources either on-site or to community resources.

Documentation of Distress:

  • Screening, referral or provision of care and follow-up should be documented in the patient medical record to facilitate integrated high-quality care.

Facility Guidelines for Meeting Compliance:

  • Cancer committee develops and implements a process to provide assessment and monitor on-site psychosocial distress screening.
  • Conduct a community needs assessment at least once every 3 years.

 

Facility Decisions:

  • Select distress tool*
  • National Comprehensive Cancer Network has a distress assessment tool available free by contacting them and asking for permission to use tool.
  • Determine clinician to administer
  • Determine major care transitions of care to conduct assessments
  • Cancer committee referral for provision of psychosocial care and follow-up
  • Review all barriers to care and establish referral methods
    • Social Work
    • Psychosocial services
      • On-site
  • Outside facility

Documentation:

  • Screening assessment, referral or provision of identified barriers to care and outcomes of referral should be documented in patient record.

 

Facility Decisions:

  • Documentation:
    • Pen/paper/chart
    • Navigation software program

The new CoC accreditation standard for regular distress assessment is a major advancement in providing patient-centered care.  You can download it here. Nurse Navigators will play a major role in facilitation of this new standard. How do you see it impacting your role in caring for your patients?

 

How EduCare Taught Me to Start a Breast Center

In late 2010, I was approached about developing, de novo, a NAPBC-accredited breast center at a hospital in downtown San Antonio.  At the time, I had been retired from pathology for eight years and was living on a ranch in the Texas Hill Country.  Understandably, I was reluctant about returning to work (and the big city), particularly since I had only a hazy idea about what a breast center actually was.  Before dismissing the offer out of hand, though, I visited five accredited breast centers—two in Montana and three in Texas.  I was particularly impressed with the breast center at Community Hospital in Missoula, Montana.  The nurse navigator there used the COPE Library as her main source of patient educational material and NurseNav software for tracking patients.  She also showed me the big notebook that she had received during her EduCare training and called it her bible.  I was very impressed with her approach to navigating patients.  In fact, I loved the concept of a breast center with its chief purpose being to assist patients throughout their breast cancer journey.  I decided to accept the job.

In May 2011, I was hired at Metropolitan Methodist Hospital to be the Director of the Breast Center.  On my first day, I was shown to a windowless, closet-sized office on a patient floor.  There were some empty shelves, an empty file cabinet, and sheets of dust on the countertops.  There was no computer; there was no fax machine; there was no printer; there was a phone, but it was not activated.  I was to soon learn that there would be no significant secretarial or marketing support and, most troubling of all, there were no plans to hire a nurse navigator.  What’s more, the person in Administration who had championed the idea of a breast center (and with whom I had interviewed) had just been promoted to CEO at another hospital; the remaining people in Administration had even less knowledge about breast centers than I did—and, as far as I could tell, their other responsibilities were more pressing than the new breast center.

To many people this would have been an unacceptable departure point for establishing a new breast center, and, truth told, a part of me wanted to call it quits right then and there.  But, another part of me was drawn to this seemingly insurmountable challenge.  For starters, no one else in San Antonio had been successful at developing a hospital-based, accredited breast center.  What did I have to lose? Besides, I liked the idea of being my own boss.  That I was the boss of no one in a dusty little room was beside the point—sort of.

Despite my lack of experience, I did have enough sense to know that the glue of any breast center is a nurse navigator.  Soon after I was hired—before there was even an acceptable place to meet with patients—I was able to convince Administration that a nurse navigator was, indeed, essential and began searching for someone who was qualified and might be interested in the position.  At the time, Lorraine Infantino had, among her other duties, the responsibility for administering conscious sedation to patients undergoing stereotactic biopsies.  She seemed like the perfect candidate.  Unlike me (a pathologist who had spent most of her professional career behind a microscope), Lorraine had vast experience with direct patient care.  Much of her career had been as an OR nurse, but she also had past administrative experience, including being the Director of an oncology floor.  Lucky for me, she was interested in the position of nurse navigator but agreed that specialized training was indicated.  Taking at face value the solid recommendation of the nurse navigator in Missoula, we signed up for the August 2011 EduCare training sessions in Atlanta.

That trip to Atlanta turned out to be a watershed event for Lorraine and me.  After just four days with Judy Kneece and her colleagues, we had a much clearer idea about how to proceed with our fledgling breast center—a sharper big picture, you might say.  For me, one of the most important realizations was that no two breast centers are the same.  People involved with developing a new breast center must be creative and resourceful, because what works at one center may not work at the next.  That seemingly self-evident concept gave me the confidence to trust my own instincts and to use old-fashioned common sense when I encountered a problem or identified a need.  Interestingly, this also made me less afraid of making mistakes.  When I was a pathologist, there was zero tolerance for error, but when starting a breast center, trial and error is okay, maybe even essential.  After all, administrative flexibility ultimately furthers the goal of never compromising patient care.

Lorraine came away from her training in Atlanta with a much better grasp of her role as a nurse navigator.  The experience also helped her refine her philosophy for navigating patients:  (1)   while providing emotional support and education, she avoids directly influencing the patient’s treatment decisions or interfering with the recommendations of the patient’s physician(s); (2)   while helping the patient surmount barriers to health care and services, she also attempts to empower the patient during this difficult time by helping her to help herself.  This is done by providing individualized, accurate information and by “greasing the skids” for the patient with phone calls and emails.

So, where are we now?  Well, for one thing, we’ve been out of the closet, so to speak, for nearly a year.  We have a little suite of offices with a patient library and a break room and some nice artwork on our walls.  We have computers and printers and a fax machine.  We hold bimonthly Category 1 CME breast cancer conferences that are well-attended by medical staff and hospital personnel.  Arguably most important, though, is that we now have a champion in Administration.  The significance of this cannot be overemphasized.   And, as a concrete measure of just how much progress we’ve made:  Metropolitan Methodist Breast Center will have an onsite survey for NAPBC accreditation on August 22, 2012.  If successful, ours will become the first hospital-based, accredited breast center in South-Central Texas.  Not bad.  Not bad at all.

Deborah Douglas, M.D. is the Director of Metropolitan Methodist Hospital Breast Center in San Antonio, Texas.  She is an eleven-year survivor of breast cancer, a retired pathologist, and is the author of Foot Soldiers:  Stories from the Breast Cancer 3-Day Walk.     

Nurse Navigators Ease the Journey of Uncertainty

Cancer transforms a person’s life from one of general well-being and confidence to one of enormous anxiety and uncertainty about the future. A pervasive sense of uncertainty characterizes the journey more than anything else.”  Dr. Jimmie Holland

Shocked, helpless, numb, confused, hopeless and seeking direction as to what she needs to do next describes the patient after hearing she has a breast cancer diagnosis. The patient, who most often is feeling physically well, has just heard words that will forever change her life. The diagnosis has just given her an entrance ticket into the world of cancer treatment—a world of unknowns, a scary place filled with many physical and emotional challenges. These challenges create a mental journey that is characterized by an evasive feeling of uncertainty.

Uncertainty is described in the dictionary as: doubt, unpredictability, indeterminacy and indefiniteness. After a cancer diagnosis, most patients feel that their body has betrayed them. Can they dare trust their own body again, or will it betray them again?  This is combined with the uncertainty of treatments. “What is the best treatment?  Will treatment work?  How can I get answers to my questions?  How long will this last? Will my cancer come back? Does anybody care about what happens to me?”

It is at this time of uncertainty that the Cancer Navigator comes into the patient’s life to help them deal with their overwhelming sense of uncertainty. As a trained Cancer Navigator, you can step into their world of fears and act as an anchor to hold on to. You come to their emotional rescue as a knowledgeable person who will navigate them through the unknowns of cancer treatment. You are a trained guide. You know the general direction of their treatment path. You know the various stops along the journey of treatment—surgery, chemotherapy and radiation therapy—and what they require. The overwhelming good news for the patient is that you are committed for the entire journey.

In a sense, you are like a GPS helping to map out their predicted journey. Like a GPS, if they get off course, you are there to help them find their way back or to find a suitable detour that will still get them to their destination. Just as a GPS serves as a sense of direction and safety when we are on a trip, we serve as a prepared guide for their cancer journey ready to offer directions without demands.

As a Navigator, your very presence and commitment for the journey reduces a patient’s uncertainty to a manageable level. You calm their emotional anxiety and reduce their fears with your navigation skills. Your presence is as valuable as any medical intervention to their recovery.