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 to Conquer the Fear of Cancer Recurrence

Fear of recurrence is the number one reported fear of cancer survivors. A cancer patient laments, “I thought that once I completed cancer treatment I could go on with my life. Instead, I have found myself hypersensitive to every ache and pain and dreading my follow-up visits to the oncologist.”

This cancer survivor’s confession is all too common. Having escaped a death sentence, many survivors are now serving a new life sentence in a prison of fear. The fear of cancer recurring has robbed them of their joy and energy. To heal completely, survivors often find that they have to relearn how to live. This should be a major goal of a Navigator—helping patients gain a new perspective on life after cancer.

Having cancer is similar in some ways to other traumatic experiences such as the death of a family member or being in a car wreck. Facing the suddenness and severity of life and death issues changes something deep within. One thing that changes is one’s outlook on life. One survivor said it was like “repricing everything around her with new price stickers.”  Surviving cancer makes one conscious of what was almost lost and what can never be regained. This awareness makes some afraid that they may again face the trauma of cancer. Some survivors develop Post Traumatic Stress Disorder (PTSD), a state in which life is significantly altered by these fears.

In the same way, someone does not stop driving after a car wreck or having friends after someone they love dies, a person cannot stop living and working towards a positive life after cancer. A survivor must find ways to overcome their fears and return to a sense of “normalcy.”  However, what one decides is normal will have to be redefined because cancer has changed the way they see things.

Cancer interrupted a life already in progress. Old dreams and goals may have died along the way. It’s important that survivors grieve for those very real losses. Those with a heightened sense of fear may not have sufficiently dealt with the trauma that cancer caused in their lives. Since they are dealing with both present fears and issues from the past, their coping measures may not be sufficient. Identifying their losses and making peace with them will help them live a fear-less life.

Navigator Tips for Helping Patients Overcome Their Recurrence Fears

Challenge Survivors To:

  1. Identify exactly what you fear and do all that you can reasonably do to prevent it. Make a plan to improve your health. Write your planned changes down so you can review them and work your plan.
  2. Schedule and keep regular check-up appointments to monitor your body.
  3. Write a letter to fear. This may sound silly, but it works. Write it with a “revengeful attitude” and tell FEAR that you will no longer listen to its constant taunting. Tell fear how you chose to think, believe and live instead. Without an “instead” plan you will rubber-band right back into fear.
  4. Try an experiment. Write down every little thing you enjoy and are grateful for. See how you feel after five full minutes of writing. Schedule time to be reflective and grateful every day. Develop your attitude of gratitude. Plan to start writing short notes to people who touched your life for the better. Tell them now grateful you are for what they did and for what they mean to you.
  5. Develop an emergency kit. This kit can be a letter to yourself reorienting you on how you want to live and what you will think and believe. Ask a friend to be your emergency kit. Teach them to let you vent and then remind you of your chosen beliefs.
  6. Make a plan for what you will do if cancer does recur and how you will live if it happens. This sounds hard, but when you face this mentally and make plans there is a sense of power knowing you have plans, no matter what happens.
  7. Determine to live a positive, faith-filled life. It is has a positive effect on your immune system. Build, buy or make something that reminds you of your choice to live positively in the present.

Fear paralyzes a person. Conquering the fear of recurrence is essential for a cancer patient to reenter life as a triumphant cancer survivor. Many survivors are living life free of disease, but prisoners of their fears of recurrence. Navigators can be the catalyst to help change her perspective of recurrence into a manageable fear. Navigators can coach the patient on how she can transform her fear into knowledge and empower her to live life as successfully after cancer as she did before cancer.

These are some of our suggestions that our Nurse Navigators and patients alike have found helpful. What other steps have worked for you?

 

 

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.     

Can Exercise Reduce Breast Cancer Risk?

We know you’ve heard about the many benefits of exercise to your overall physical and cardiovascular health. But do you know the relationship between exercise and your immune system, and its’ role in minimizing risk of getting certain types of cancer? Today we’ll explore how exercise can help minimize your breast cancer risk.

Exercise increases the body’s ability to provide adequate oxygen to your cells, which is essential for cell metabolism.  Increased oxygenation boosts the immune system, elevates  mood, and helps control obesity.  Evidence continues to mount that exercise later in life may become a factor for reducing breast cancer incidence.

A recent study recruited women with breast cancer from 31 hospitals in or near New York City. These cases were aged from 20 to 98 years old, and were diagnosed with breast cancer between 1996 and 1997. The controls were women who had never been diagnosed with breast cancer, and were matched to cases based on age. This is important, as age is a significant risk factor for breast cancer. The study included 1,508 cases and 1,556 controls to collect data for impact of exercise on breast cancer occurrence.

Study Outcomes:

When adjusting for age, the researchers found that:

  • Regular physical activity during adolescence was not associated with a difference in risk of developing breast cancer.
  • Women who reported engaging in 10 to 19 hours of physical activity during their reproductive (pre-menopausal) years had a 33% reduction in the odds of developing breast cancer after menopause, compared with women who reported no regular activity during these years (odds ratio 0.67, 95% confidence interval 0.48 to 0.94). No significant differences were seen at other activity levels.
  • Women who reported engaging in approximately 9 to 17 hours of physical activity during post-menopausal years had a 30% reduction in the odds of developing breast cancer after the menopause, compared with women who reported no regular physical activity during these years (odds ratio 0.70, 95% confidence interval 0.52 to 0.95).

How did the researchers interpret the results?

The researchers concluded that women can “reduce their breast cancer risk later in life by maintaining their weight and engaging in moderate amounts of physical activity”.

Back to the Basics

With all the vast number of treatments for breast cancer, most having numerous debilitating side effects, it may be time that we go back to the basics of good health and include exercise as a treatment recommendation to reduce breast cancer incidence. Exercise in moderation, based on the individual’s health, comes with many benefits and usually has no cost associated, unless one decides to join a gym or exercise class. Exercise may be the best value in reducing breast cancer incidence.  One thing is certain: Participating in regular exercise later in life will increase one’s overall health, improve mood, and control obesity.

Do you, as a Nurse Navigator, recommend exercise for your breast cancer patients? Does your Breast Center offer any programs to help facilitate patients’ exercise during treatment?