Jons February 2014 by The Oncology Nurse

FeBRUAry 2014 • Vol 5, NO 1

QUALITY, OUTCOMES, AND PERFORMANCE IMPROVEMENT (QOPI) COMMITTEE Mandi Pratt-Chapman, MA

FOURTH ANNUAL AONN+ CONFERENCE Music & Medicine: A Dynamic Partnership Breast Cancer Navigation and Survivorship

ONCOLOGY NURSE EXCELLENCE AWARD Libby Daniels

YE A R A NNI V ERSARY

www.AONNonline.org

LETTERS FROM LILLIE

Editor-in-Chief

Lillie D. Shockney, RN, BS, MAS University Distinguished Service Assoc Prof of Breast Cancer, Depts of Surgery & Oncology; Admin Director, The Johns Hopkins Breast Center; Admin Director, Johns Hopkins Cancer Survivorship Programs; Assoc Prof, JHU School of Medicine, Depts of Surgery, Oncology & Gynecology and Obstetrics; Assoc Prof, JHU School of Nursing shockli@jhmi.edu Lillie D. Shockney, RN, BS, MAS

Section Editors

Breast Cancer Sharon Gentry, RN, MSN, AOCN, CBCN

Hello everyone! This issue of the Journal of Oncology Navigation & Survivorship provides continued information and knowledge learned at the 2013 Fourth Annual Navigation and Survivorship Conference. Music & Medicine is one of the featured sessions in this issue. It was an amazing experience to witness, as we all learned the power of music for our patients (and for ourselves). There is also a summary of information gleaned from the Breast Cancer Navigation and Survivorship breakout, where Vinnie Myers, a famous tattoo artist, joined me on stage to discuss 3-dimensional nipple tattooing for women who had mastectomies. Also in this issue is the final part of my series about resources available from pharmaceutical companies, featuring Merck & Co., Inc. this month. We are also continuing to provide more details about each of the members of the Quality, Outcomes, and Performance Improvement Committee, showcasing Mandi Pratt-Chapman, MA, this month. There is an article that provides further validation of the value of navigators within the oncology team (called A Navigator Is Key) and perspectives from the patient (called The Patient’s Voice). You will also find an article focused on the issues of malnutrition for oncology patients. There is an article regarding the ONE (Oncology Nurse Excellence) Award that was formally presented at our 2013 conference. Last, but surely not least, is information about what AONN+ is taking on next as a major initiative on your behalf. We have heard you. We believe you. We know of its importance—the need for formal certification of oncology navigators. So keep your eyes on the lookout for more information regarding this important undertaking. It is not a small task that can be cranked out in a matter of a few months, but it is a priority for us to develop and implement it for you! With kind regards,

Breast Health Navigator Novant Health Derrick L. Davis Cancer Center

Cancer Rehabilitation & Survivorship Julie Silver, MD Assistant Professor Harvard Medical School

Genetic Counseling

Cristi Radford, MS, CGC Gene Mavens, LLC

Healthcare Disparities Linda Fleisher, PhD, MPH

Asst VP, Office of Health Communications and Health Disparities Asst Prof, Cancer Prevention and Control Fox Chase Cancer Center

Health Promotion and Outreach Iyaad Majed Hasan, DNP, CNP

Director and Nurse Practitioner Survivorship Clinic and Program Cleveland Clinic, Taussig Cancer Center

Patient-Centered Care Mandi Pratt-Chapman, MA Director GW Cancer Institute

Prostate Cancer Frank delaRama, RN, MS, AOCNS

Clinical Nurse Specialist Oncology/Genomics, Cancer Care Clinic Palo Alto Medical Foundation

Thoracic Oncology Pamela Matten, RN, BSN, OCN St. Joseph Hospital

AONN Research Committee Marcy Poletti, RN, MSN

Nursing Operations Supervisor Wake Forest University Baptist Medical Center

Elaine Sein, RN, BSN, OCN, CBCN Senior Project Manager Fox Chase Cancer Center Partners

Lillie D. Shockney, RN, BS, MAS Editor-in-Chief

Penny Widmaier, RN, MSN Oncology Nurse Navigator Botsford Cancer Center

Mission Statement

The Journal of Oncology Navi gation & Survivorship ( JONS ) promotes reliance on evidence-based prac tices in navigating patients with cancer and their caregivers through diagnosis, treatment, and survivorship. JONS also seeks to strengthen the role of nurse and patient navigators in cancer care by serving as a platform for these professionals to disseminate original research findings, exchange best practices, and find support for their growing community.

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THE LYNX GROUP President/CEO Brian Tyburski Chief Operating Officer Pam Rattanonont Ferris Vice President of Finance Andrea Kelly Human Resources Jennine Leale Associate Director, Content Strategy & Development John Welz Associate Editorial Director, Projects Division Terri Moore Director, Quality Control Barbara Marino Quality Control Assistant Theresa Salerno Director, Production & Manufacturing Alaina Pede Director, Creative & Design Robyn Jacobs Creative & Design Assistant Lora LaRocca Director, Digital Media Anthony Romano Web Content Managers David Maldonado Anthony Trevean Digital Programmer Michael Amundsen Meeting & Events Planner Linda Sangenito

Table of ConTents

february 2014 • Vol 5, NO 1

NAVIGATOR CERTIFICATION

Is It Time for Certification?

Sharon Gentry, RN, MSN, AOCN, CBCN

Lillie D. Shockney, RN, BS, MAS

RESOURCES FROM PHARMACEUTICAL COMPANIES

esources of Potential Benefit to You and to the Patients You R Navigate: Part 5 of a 5-Part Series

Lillie D. Shockney, RN, BS, MAS

QUALITY, OUTCOMES, AND PERFORMANCE IMPROVEMENT (QOPI) COMMITTEE

Mandi Pratt-Chapman, MA 8 FOURTH ANNUAL AONN+ CONFERENCE

Music & Medicine: A Dynamic Partnership 10 Lisa A. Raedler, PhD, RPh 14 Breast Cancer Navigation and Survivorship Lisa A. Raedler, PhD, RPh The PATIENT’S VOICE

Can I Trust You?

MMA

Commentary

A Navigator Is Key

Iyaad Hasan, DNP, CNP NUTRITION AND CANCER

Malnutrition in Patients with Cancer: An Often Overlooked and Undertreated Problem

Abby C. Sauer, MPH, RD Abbott Nutrition

ONCOLOGY NURSE EXCELLENCE AWARD

Libby Daniels Named Award Winner at AONN+ Conference 26

Lisa Neuman

Senior Project Managers Andrea Boylston Jini Gopalaswamy Project Coordinators Jackie Luma Deanna Martinez IT Specialist Carlton Hurdle Executive Administrator Rachael Baranoski Office Coordinator Robert Sorensen

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February 2014 • Volume 5, Issue 1

Journal of Oncology Navigation & Survivorship, ISSN 2166-0999 (print); ISSN 2166-0980 (online), is published 6 times a year by Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. Telephone: 732.656.7935. Fax: 732.656.7938. Copyright ©2014 by Green Hill Healthcare Communications, LLC. All rights reserved. Journal of Oncology Navigation & Survivorship logo is a registered trademark of Green Hill Healthcare Communications, LLC. No part of this publication may be reproduced or transmitted in any form or by any means now or hereafter known, electronic or mechanical, including photocopy, recording, or any informational storage and retrieval system, without written permission from the publisher. Printed in the United States of America. EDITORIAL CORRESPONDENCE should be addressed to EDITORIAL DEPARTMENT, Journal of Oncology Navigation & Survivorship (JONS), 1249 South River Road, Suite 202A, Cranbury, NJ 08512. E-mail: jbrandt@the-lynx-group.com. YEARLY SUBSCRIPTION RATES: United States and possessions: individuals, $50.00; institutions, $90.00; single issues, $5.00. Orders will be billed at individual rate until proof of status is confirmed. Prices are subject to change without notice. Correspondence regarding permission to reprint all or part of any article published in this journal should be addressed to REPRINT PERMISSIONS DEPARTMENT, Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. The ideas and opinions expressed in JONS do not necessarily reflect those of the editorial board, the editorial director, or the publisher. Publication of an advertisement or other product mention in JONS should not be construed as an endorsement of the product or the manufacturer’s claims. Readers are encouraged to contact the manufacturer with questions about the features or limitations of the products mentioned. Neither the editorial board nor the publisher assumes any responsibility for any injury and/or damage to persons or property arising out of or related to any use of the material contained in this periodical. The reader is advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify the dosage, the method and duration of administration, or contraindications. It is the responsibility of the treating physician or other healthcare professional, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Every effort has been made to check generic and trade names, and to verify dosages. The ultimate responsibility, however, lies with the prescribing physician. Please convey any errors to the editorial director.

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Navigator certification

Is It Time for Certification? Lillie D. Shockney, RN, BS, MAS Sharon Gentry, RN, MSN, AOCN, CBCN

avigation is now being recognized as a professional category, with acknowledgment that different types of people fulfill various aspects of the navigation role. Currently, there are no specific required competencies or standards for nurse or patient navigator training, and there is no certification to declare a “certified nurse or patient navigator.” There are several navigation and survivorship training programs for navigators. Some provide a certificate of attendance or program participation documents, but there is no such thing as a “certified oncology nurse navigator” or “certified oncology patient navigator.” As the leading nurse and patient navigation organization, the Academy of Oncology Nurse & Patient Navigators (AONN+) believes the time has come to consider the development and implementation of certification programs for navigators. We strongly believe there is a need to demonstrate that this is a “certified” profession as well as help ensure that those who are navigators have certain skills

and a knowledge base to serve their patients effectively. In early 2014, AONN+ will form a certification examination subcommittee for the purpose of creating the infrastructure needed to develop an evidence-based examination to launch in the future. The beginning point for development of a certification examination will be to provide a general oncology navigator certification program. In recognition of different professional levels of navigators as well as different organ site navigators, the vision is to launch into more specific certification areas in the future. Throughout 2014, we will keep you apprised of the timing and development of our certification program and welcome your input as we continue to pave the way for nurse and patient navigators in their careers. There will also be additional information provided at our Fifth Annual Conference, September 18-21, 2014, in Orlando, Florida, and we look forward to seeing you there! For more information, please visit www.AONNonline.org/conference. g

Y E AR A N N I V E R S A RY

A forum for nurse and patient navigators to discuss the day-to-day operations of navigating patients with cancer. The goal is to share ideas and practices and to provide a resource to help navigate patients and improve care.

JOIN OUR LinkedIn GROUP TODAY

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Resources from Pharmaceutical Companies

Patient Resources from Merck & Co., Inc. Part 5 of a 5-part series of resources available from various pharmaceutical companies Lillie D. Shockney, RN, BS, MAS, Johns Hopkins University School of Medicine, Baltimore, Maryland Merck & Co., Inc. provides a wealth of educational information and practical resources for cancer patients that you may wish to inform them about. Below is a list of these resources and programs: • Eating Well Through Chemo Cookbook • Chemo Companion • “Overcoming Fatigue” brochure The Merck Academy, a special division within this company, also provides educational programs on topics listed below, presented from an oncology perspective: • Adherence to Prescription Medications • Applying Evidence-Based Medicine to Clinical Practice • Associated Versus Causation/Observational and Interventional Designs • Critical Application of Biomarkers in Drug Development • Bringing Medications from Bench to Bedside: Myths and Realities • Overview of Vaccines • Preclinical Drug Discovery and Development • Principles of Clinical Trials • Safety and Pharmacovigilance • Understanding Absolute Risk, Relative Risk, and Number Needed to Treat in Research and Practice • Understanding Comparative Effectiveness Research • Understanding Statistical Versus Clinical Significance To learn more about these topics and how to access them, go to: www.merck.com/searchresults/search?strSearchterm=cancer+treatment

ABOUT THE COVER

Walking with Angels Acrylic by a Person Diagnosed with Cancer Artwork from the Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition www.LillyOncologyOnCanvas.com I am walking with angels in a place I am unfamiliar with. It’s ok, though, because the angels know where they are and where they are going. All around me, I encounter what appears to be an abstract illusion. But, the angels hold my hand and gently lead me along, careful to try to avoid all danger zones. I am their assignment. It’s a journey unlike any I’ve ever taken before. It’s just like viewing abstract art. I am left with a vastly unique interpretation of what I have just experienced. Thank God for angels.

February 2014 • Volume 5, Issue 1

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We Will

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• Prescription status • Celgene free medication program • Celgene products and restricted distribution programs 4 out of 5 patients who requested assistance from Celgene Patient Support ® received their medication.

Quality, Outcomes, and Performance Improvement (QOPI) Committee

Mandi Pratt-Chapman, MA Director, George Washington University Cancer Institute Leadership Council of the Academy of Oncology Nurse & Patient Navigators Editorial Board, Journal of Oncology Navigation & Survivorship

y experience with cancer began when I was told as a teenager that my stepbrother had osteosarcoma. I was very confused. The idea of my sibling having a life-threatening illness was beyond my comprehension. We lived in rural Maine, and I did not understand why my stepdad had to repeatedly take my stepbrother to Boston for treatments. My second formative experience with cancer was just after I finished college. Only weeks into my first “real job,” I abruptly left to nurse my Nana in her final weeks of life. After 2 mastectomies, she ultimately succumbed to metastatic breast cancer. Six years later I was finishing my PhD in English literature when my stepdaughter’s mom fell ill. I vividly remember a neurosurgeon declaring with the utmost confidence that she would fully recover within days of the surgery for a brain tumor. She ultimately never regained consciousness following her brain surgery. This experience with the healthcare system left me angry and determined to improve the experience of others. For both financial and emotional reasons, I left my PhD program to take a position at The Children’s Inn at the National Institutes of Health (NIH). There I met children and families who inspired me with their ability to take 1 day, indeed 1 test, and 1 treatment at a time. One little girl who had spent years away from her father and siblings would visit me each morning with a smile and a new piece of art to hang on my wall. Maria had come to the NIH in the hope that scientists there could help her with a disease that typically affected older people—chronic myelogenous leukemia. I spent years with this child, where the Inn truly became her home away from home. As she lay in the inpatient unit at NIH never to be discharged, Maria smiled at the sonogram of my daughter, Iris. Maria’s funeral was the first of Iris’ month-old life. After several years at The Children’s Inn, I took a position as Community Outreach Manager for the Leukemia & Lymphoma Society’s National Capital Area Chapter. In that position, I was responsible for healthcare professional education as well as advocacy, including educating school personnel about the physical, psychosocial, and cognitive impacts of cancer on children returning to school following treatment. My experience there taught me much about educating healthcare professionals and the staggering needs of children and families following a diagnosis of cancer. One of my proudest accomplishments was spearhead-

February 2014 • Volume 5, Issue 1

ing grass-roots efforts that led to the passage of the 2008 Clinical Trials Insurance Coverage Act in Washington, DC (D.C. Law 17-166). In 2008, I left the Leukemia & Lymphoma Society to become Founding Director of the Division of Survivorship at the George Washington University Cancer Institute (GW Cancer Institute). In that capacity, I was humbled by the pioneers of the field who so generously spent time talking to me and sharing lessons learned as I created a survivorship program at the GW Cancer Institute. Together with clinicians at the GW Cancer Institute and Children’s National Medical Center, I helped establish the first comprehensive, multidisciplinary cancer survivorship clinic in Washington, DC, for adults. I also had the privilege of launching and directing a new Center for the Advancement of Cancer Survivorship, Navigation, and Policy (caSNP)—a training and research center built in collaboration with the George Washington University School of Public Health’s Department of Health Policy.

Together with clinicians at the GW Cancer Institute and Children’s National Medical Center, I helped establish the first comprehensive, multidisciplinary cancer survivorship clinic in Washington, DC, for adults. In 2011, I was promoted to Associate Director of Community Programs for the GW Cancer Institute and, recently, I was designated the Director for the institute. As Director, I am responsible for strategically planning and implementing prevention, community health, patient navigation and survivorship programs, as well as overall fiscal management and development for the institute. I am Principal Investigator for a Centers for Disease Control and Prevention (CDC)-funded cooperative agreement (U38DP004972-01) to enhance technical support for comprehensive cancer control (CCC) implementation across the country. The CDC established the National CCC Program to support a coordinated approach to pre-

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Quality, Outcomes, and Performance Improvement (QOPI) Committee

venting and controlling cancer in local communities. As technical support partner for this program, the GW Cancer Institute helps CCC coalitions create policy, systems, and environmental changes; sustain partnerships; and communicate program successes. The GW Cancer Institute provides monthly webinars, develops free trainings, and shares evidence-based interventions and best practices for CCC. We are currently converting our popular live training for patient-centered program leaders, the Executive Training on Navigation and Survivorship, to an online environment. We are also building an online training for unlicensed patient navigators that will be the first developed from consensus-based patient navigation competencies. We have established consensus-based functional domains for patient navigators, working in collaboration with the Academy of Oncology Nurse & Patient Navigators, the Association of Community Cancer Centers, the National Association of Social Workers, the Association of Oncology Social Work, the Oncology Nursing Society, and with patient navigators in various settings across the United States. We will next develop competency statements and validate those through a national survey prior to developing the free online navigation training. I am also Co–Principal Investigator for a Patient-Centered Outcomes Research Institute–funded study evaluating cancer survivorship care models in collaboration with LIVESTRONG, the American College of Surgeons Commission on Cancer, the American Cancer Society, and the Cancer Support Community. The research study seeks to determine which healthcare delivery model best meets cancer survivors’ prioritized needs and outcomes. Through focus groups across the country and a national patient survey, we are developing a framework for quality cancer survivorship care. We are simultaneously conducting an en vironmental scan of the nearly 1500 Commission on Cancer–accredited institutions in the United States to discover what survivorship services they are providing, how, and by whom. We will then compare the effectiveness of different models of survivorship care using the framework of quality cancer survivorship care developed directly from survivors’ articulated concerns. This study is poised to have a major impact on the healthcare services offered to cancer survivors across the country. Since 2010, I have served as Project Director for the National Cancer Survivorship Resource Center, a collaboration with the American Cancer Society funded by a CDC cooperative agreement (#1U55DPOO3O54). The center aims to reduce health inequities and improve health outcomes of cancer survivors at a national level. Through this project, I have led the development of a policy landscape analysis for cancer survivorship, led focus groups to better understand primary care providers’ needs and preferences

for posttreatment cancer survivorship practice guidelines, and supported the development of guidelines for breast, prostate, colorectal, and head and neck cancers. My team at the GW Cancer Institute has also developed a free Cancer Survivorship e-Learning Series for Primary Care Providers available at www.cancersurvivorshipcenteredu cation.org. Free CME is provided for physicians, physician assistants, nurse practitioners, and nurses. Finally, I am Principal Investigator for the GW Cancer Institute’s Avon-funded Safety Net program, the Komen-funded Citywide Survivorship Initiative, and the DC Citywide Patient Navigation Network (CPNN).

I have been blessed with a dedicated team and amazing colleagues. I have a supportive supervisor and top-notch resources available to me at George Washington University. Through steadfast support from Avon and Komen, we have provided seamless patient navigation for patients with cancer across the breast care continuum at the GW Cancer Institute, and we have made quality improvements to the healthcare system. Through CPNN, primary care clinics, community-based organizations, and cancer centers have collaborated to remove over 26,000 barriers to healthcare experienced by more than 7000 patients at various points along the cancer continuum from August 2010 through July 2013. Most individuals served by the network are racial or ethnic minorities. Top barriers experienced by patients are financial challenges, social/practical support needs, system challenges, and language barriers. Other major barriers to care are transportation, geographic location of healthcare facilities, fear and communication barriers, and employment concerns. We are currently seeking support to sustain core costs for the network. I have been blessed with a dedicated team and amazing colleagues. I have a supportive supervisor and top-notch resources available to me at George Washington University. However, what drives me is still extremely personal. A few years ago, my closest friend since kindergarten lost her first husband to metastatic melanoma. Her grace, strength, and resilience as a caregiver continues to astound me. These are the people who keep me focused every day—my sibling; my Nana; my stepdaughter’s mom; my little friend, Maria; and my closest childhood friend. I carry them with me always, and they inspire me every day. It is truly humbling and gratifying to have a career that allows me to continually improve patient-centered care locally and nationally. g

JONS-online.com journal of Oncology Navigation & Survivorship

Fourth Annual AONN+ Conference

Music & Medicine: A Dynamic Partnership Lisa A. Raedler, PhD, RPh

Memphis, TN—The final address of the Fourth Annual Conference of the Academy of Oncology Nurse & Patient Navigators (AONN+) in Memphis, Tennessee, was delivered by Deforia Lane, PhD, MT-BC. Dr Lane is the Associate Director of the Seidman Cancer Center, and Director of Music Therapy at University Hospitals of Cleveland, Seidman Cancer Center, and Rainbow Babies & Children’s Hospital. She is also an opera singer and breast cancer survivor. Dr Lane earned her PhD in Music Education from Case Western Reserve University, and is board certified as a Music Therapist. She is nationally renowned for developing music therapy programs for diverse populations, including the mentally handicapped, abused children, geriatrics, psychiatric patients, adult and pediatric patients with cancer, and the terminally ill. She is a spokesperson for the American Cancer Society, the organization for which she composed and recorded the song, “We Can Cope.” In 1994, Dr Lane received honorary membership into the Oncology Nursing Society. When introducing Dr Lane, Lillie Shockney stated, “You are in for a treat! A major treat!... You have expressed a lot of interest in complementary and alternative medicine…[Deforia] is an amazing individual whom I have had the wonderful opportunity to hear before.” Before launching her presentation titled “Music & Medicine: A Dynamic Partnership,” Dr Lane proffered an eloquent “Deforia-devised” definition of oncology nurse navigators: “You are an eclectic group of women and men who have efficiency in their DNA; multitasking skills galore; the ability to navigate physical, social, psychological needs of patients and families; and who balance ever-changing, everchallenging personalities of a multidisciplinary team.” Dr Lane expressed respect and gratitude for nurse navigators, who “carry the weight of care upon broad shoulders.”

What Is Music Therapy?

Dr Lane introduced nurse navigators to what she termed “a most magnificent profession”: music therapy. Music therapy is the clinical- and evidence-based use of music interventions to accomplish specific patient goals. Music therapists—credentialed professionals who have completed an approved music therapy program—customize their approach to each patient as they develop therapeutic relationships. They help clients improve their health in several domains, including cognitive functioning, motor skills, emotional development, social skills, and quality of life.

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The music experiences that therapists use to achieve their treatment goals range from free improvisation and singing to listening to, discussing, and moving to music.

How Are Music Therapists Trained and Certified?

Dr Lane indicated that more than 7000 music therapists are board certified in the United States. They are educated at 1 of 70 colleges and universities with bachelors-, masters-, or doctoral-level music therapy programs. A degree in music therapy requires proficiency in guitar, piano, voice, music theory, music history, reading music, improvisation, as well as varying levels of skill in assessment, documentation, and other counseling and healthcare skills depending on the focus of the particular university’s program. To become board certified, a music therapist must complete a music therapy degree from an accredited American Music Therapy Association (AMTA) program at a college or university, successfully complete a music therapy internship, and pass the board certification examination in music therapy. The credential Music Therapist-Board Certified (MT-BC) is granted by the Certification Board for Music Therapists (CBMT) upon successfully passing the board certification examination.

This beautiful thing called music can literally adjust your behavior. It can stimulate past memory. The Impact of Music Therapy

Dr Lane is enthused about the ubiquity of music. “Music is our first cry and our last breath. It is a part of our culture. It is a part of our ethnicity. For many of us, it is a part of our celebrations. It is everywhere!” By asking the audience to participate by clapping and singing, Dr Lane demonstrated just how relevant music is to our mood and physiologic functioning. “Music, with its rhythms, can lower blood pressure, heart rate, and respiration rate…. This beautiful thing called music can literally adjust your behavior. It can stimulate past memory…. People who cannot talk can sing.” Using the example of a woman with metastatic breast cancer, Dr Lane described how music therapists assess patients, formulate treatment goals and concrete intervention plans, and then collect data regarding patient outcomes. With a music therapist’s help, Dr Lane’s hypothetical breast cancer patient–—who is also a mother and wife and who feels depressed and anxious—learns to

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Fourth Annual AONN+ Conference

write a song for her daughter, including lyrics and rhythms. Music therapists collect and document data about how long the patient engages, her attitude, her degree of involvement in the song-writing activity, her ambulation, and pain scale ratings. Clinical outcomes associated with music therapy can be significant. Dr Lane stated, “This is a magnificent time to be a music therapist.” She highlighted examples of Nathaniel Ayers, a Julliard cellist diagnosed with schizophrenia and for whom “music has been an anchor,” and Representative Gabrielle Giffords, who was critically injured by a gunshot wound to the head. “[Ms Giffords’s] music therapist used a neurologic music therapy technique, called melodic intonation therapy, to address her speech.”

shows the patient’s faltering gait and his lack of arm swing. Later in the session, this patient’s music therapist uses rhythmic auditory stimulation—a simple metronome ticking, no music. When the metronome is on, the patient walks more comfortably, his arms swing in a coordinated manner, and he is steady. While viewing the video with the audience, Dr Lane smiled proudly. “This is magnificent to watch!” Dr Lane explained that clinical research shows that hospitalized patients who walk, “IV poles and all,” while listening to live music of the genre they prefer, walk farther and perform more exercise repetitions. “They are propelled by the music, which synchronizes the body.”

Using personal examples and referencing literature, she explained that babies can be conditioned to respond to music before they are born. Crying babies will calm to the same music that was played to them in utero.

Shifting her focus to the cancer arena, Dr Lane recalled a randomized controlled study of music therapy and its effects on chronic pain in hospitalized patients. This study randomized 200 palliative care patients to standard care alone, which included medical and nursing care plus scheduled analgesics, or standard care plus music therapy. The study objective was to reduce the amount of pain that patients experienced as measured by validated pain scale ratings. Patients in the experimental group met with a music therapist who conducted a single 20-minute music therapy intervention that was directed at lowering pain. The intervention included guided imagery, followed by live slow-tempo harp music. (The goal of guided imagery is to employ mental images, as well as effective breathing and relaxation techniques, to minimize pain.) Dr Lane noted that the researchers used standardized pain assessments pre- and postintervention, including use of a 0 to 10 numeric rating scale (NRS). The research to which Dr Lane referred was recently published by Kathy Jo Gutgsell, PhD, the music therapist who played at the bedside of all patients in the experimental group (J Pain Symptom Manage. 2013;45:822-831). This study demonstrated that both the music therapy and control groups showed significant declines in pain using the NRS from pre- to posttest (mean change of 1.94 for music therapy and 0.56 for control). However, a significantly greater change (P <.0001) was seen in the music therapy group. Dr Gutgsell and colleagues concluded that, based on these data, “palliative care clinicians may confidently refer trained music therapists to treat pain in this vulnerable population.” As Dr Lane reviewed these findings at the AONN+ meeting, she exclaimed, “Look at that P value! Now that made me hoop, holler, and shout!”

The therapeutic effects of music have already been investigated in a variety of clinical scenarios and healthcare settings. “There is a great deal that we know about how we respond to music. We take evidence-based studies and theories, and use them to help our patients,” according to Dr Lane. Using personal examples and referencing literature, she explained that babies can be conditioned to respond to music before they are born. Crying babies will calm to the same music that was played to them in utero. At the other end of the age spectrum, Dr Lane introduced the audience to a gentleman with late-stage Alzheimer’s using a video recording. “You can see that he cannot find his way to his room or tell you his name. He mumbles and does not look at [the music therapist]. But, the minute she started playing, what happened? The video shows how the man calms down. He makes eye contact with his therapist, and then he says to her in a very clear and lucid voice. ‘I like it! Don’t you?’” Other poignant examples of the effects of music therapy were illustrated in a series of video recordings of stroke victims who were unable to ambulate effectively. Dr Lane explained that rhythmic auditory stimulation, a neurologic music therapy technique, can help such patients as they undergo rehabilitation. One of the patients, a young man who suffered a stroke, is very unsteady at the onset of the video. His physical therapist works with him, while the music therapist simply watches from a distance. The video

Music Therapy in Palliative Care Patients

Music Therapy and Preventive Medicine

Shifting to the role of music in facilitating communi-

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Fourth Annual AONN+ Conference

ty-level relationships and outreach, Dr Lane recalled statistics related to the higher rate of mortality associated with breast cancer in African American women. “When given an opportunity to speak with women of color who were 60 years and over using music therapy, I said ‘yes!’ I did not have a clue how I was going to do it, but I said yes.” Dr Lane and colleagues, both of whom were also breast cancer survivors, created Project Temple, an outreach program in which music therapists visited churches, inner city apartment buildings, and senior citizen homes to talk about breast cancer screening through use of a musical skit. “[In the skit,] we talked about [cancer and cancer screening] as though we were sitting around a kitchen table. We sang the songs that helped us through our journey…. We called it ‘Sing, Sister, Sing.’ And each of us gave our personal testimony, if you will, at the end [of the skit].” Dr Lane smiled as she recalled Project Temple participants. She noted that many were initially very skeptical (“I’ll listen to this, but...”), ultimately asking her and her colleagues, “Can you put your finger right here? Do you think that is cancer? I’ve had that for a couple of months.” She laughed, “Are those 44DDs? I have stroked many a breast!” Project Temple was a real success: Dr Lane described that participants loosened up, sang along, and asked many questions. They also agreed to free mammograms and were

able to have the procedure conducted in the mobile van that accompanied the actors. In all, Dr Lane estimated that she and her colleagues have reached more than 3000 women. “It was wonderful!”

“To me, the most beautiful part of using music with people is communicating from the heart and giving them a voice.” “Communicating from the Heart”

Dr Lane concluded her presentation by singing a poignant spiritual that was taught to her by her mother. “To me, the most beautiful part of using music with people is communicating from the heart and giving them a voice.” Lillie Shockney, the program chair, agreed. “We may see hundreds or even thousands of cancer patients, but that patient only sees one of us. That patient will remember you forever. If you did the right thing, as an advocate and a navigator…that patient will remember it forever.” To learn more information about music therapy and to find a certified music therapist, visit www.musictherapy.org. g

Call for Papers The Journal of Oncology Navigation & Survivorship® (JONS), launched in 2010, is the nation’s first peer-reviewed clinical journal for Oncology Nurse and Patient Navigators. As this critical area of specialty and expertise grows, research and sharing of best practices are integral to both improving the clinical care of cancer patients as well as expanding the existing literature and knowledge base. Our goal at JONS is to help facilitate that growth.

Papers can be in the following forms: • Original Research • Case Study • Review Article (a synopsis/review of current • “How To” article designed to transfer literature in a specific area of research) successes to fellow practitioners Each manuscript is subject to an internal review to see that it fits the scope and mission of our journal. Papers that pass the initial review could be subject to a blinded peer review; final acceptance is based on that review. If you are interested in submitting a paper or have any questions, please feel free to visit our website www.JONS-online.com or e-mail our editorial department at jbrandt@the-lynx-group.com.

February 2014 • Volume 5, Issue 1

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Now enrolling Investigating ABT-199 (GDC-0199) in Chronic Lymphocytic Leukemia Phase II Open-Label Study of the Efficacy and Safety of ABT-199 in Patients With Relapsed or Refractory Chronic Lymphocytic Leukemia Harboring the 17p Deletion N=100

ABT-199 is an investigational agent that has not been approved by regulatory agencies for the use under investigation in this trial. Primary Endpoint

Secondary Endpoints

• Overall response rate

• • • • • • • •

Complete remission rate Partial remission rate Duration of response Progression-free survival Time to progression Overall survival Percentage of patients who move on to stem-cell transplant Safety and tolerability of ABT-199

Key Inclusion Criteria • Adult patients ≥18 years of age • Diagnosis of CLL that meets 2008 IWCLL NCI-WG criteria (relapsed/refractory after receiving ≥1 prior line of therapy and 17p deletion) • ECOG performance score of ≤2 • Adequate bone marrow function • Adequate coagulation, renal, and hepatic function, per laboratory reference range

NCT#01889186 Reference: ClinicalTrials.gov.

To learn more about this study, please visit www.ClinicalTrials.gov.

Fourth Annual AONN+ Conference

Breast Cancer Navigation and Survivorship Lisa A. Raedler, PhD, RPh Memphis, TN—One of the most popular breakout sessions at the Fourth Annual Conference of the Academy of Oncology Nurse & Patient Navigators (AONN+) focused on breast cancer navigation and survivorship. This session featured 2 speakers, Karen Meneses, PhD, RN, FAAN, and Vinnie Myers, a tattoo artist.

Breast Cancer Survivorship Initiatives

After recalling a hilarious personal anecdote related to her experience with stick-on nipples for her breast prostheses, Lillie Shockney introduced Dr Meneses, Professor and Associate Dean for Research at the University of Alabama at Birmingham (UAB) School of Nursing. Dr Meneses is an internationally recognized nurse scientist in cancer survivorship. In 2013, she was appointed to the Centers for Disease Control and Prevention (CDC) Advisory Committee on Breast Cancer in Young Women. Most recently, Dr Meneses created the Young Breast Cancer Survivorship Network (YBCSN), which aims to improve the quality of life (QOL) for young breast cancer survivors and their loved ones through education, personal support, distance learning, and networking.

Over 13.7 million people in the United States or 4% of the population have survived cancer. Of these, approximately 22% had breast cancer... During the AONN+ meeting, Dr Meneses, an oncology nurse who has been in practice for nearly 40 years, shared her unique experience developing and evaluating educational interventions for breast cancer survivors in the Southeast. To underscore the need for breast cancer survivorship initiatives, Dr Meneses reminded the audience of the growing number of breast cancer survivors. Over 13.7 million people in the United States or 4% of the population have survived cancer. Of these, approximately 22% had breast cancer, making breast cancer survivors the largest group of cancer survivors in the United States. These numbers will only continue to grow; the National Cancer Institute (NCI) projects more than 18 million cancer survivors in 2022. Dr Meneses then introduced navigators to the research approach that she and her team use when evaluating programs directed toward breast cancer survivors. These research efforts, known as behavioral studies, are led by

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multidisciplinary teams. Their goal is to determine if a given intervention, such as a multicomponent educational program, enhances patients’ long-term health and QOL. Using data from surveys and secondary databases, researchers document patient behaviors and health outcomes. They are ultimately looking for differences between women who participated in the educational program and women who did not. With her colleagues at UAB, Dr Meneses has been involved with several NCI-sponsored behavioral studies. One of these studies, the Breast Cancer Education Intervention (BCEI), which was published in Oncology Nursing Forum in 2007,1 was recognized as a national model of cancer survivorship education. This randomized controlled trial of patient-directed, nurse-led QOL interventions was also cited in a 2012 Cochrane Database of Systematic Review’s article of psychosocial interventions to improve QOL. Notably, the BCEI study was the only one in the Cochrane review with nurse-led educational interventions that resulted in improved QOL. The BCEI study, which was conducted in the early 2000s, targeted women in central Florida who were in their first year of survivorship after primary treatment for breast cancer. The primary study goal was to determine whether a 6-month program of nurse-led education and support affects patient-reported outcomes related to QOL. Participants in the experimental arm of the study received the BCEI, which was delivered in 3 face-to-face sessions and 5 monthly follow-up sessions (3 by telephone and 2 in person). Those in the control group received 4 monthly attention control telephone calls and the BCEI at month 6. When describing the educational sessions associated with the BCEI, Dr Meneses recalled, “Maintaining good contact and good communication made a huge difference. We nurses worked with patients to ensure that they called and talked to their physicians, talked to their oncology nurses, to their team, about health concerns that they had…. It is so important for nurse navigators to listen and really hear survivors’ specific needs.” The 261 breast cancer survivors who participated in the BCEI study were primarily middle-aged with a median age of 54 years. Most were Caucasian, college educated, married, working full- or part-time, and had moderate family incomes. All had been treated with surgery, radiation, and/ or chemotherapy at a regional cancer center that employed National Comprehensive Cancer Network guidelines and participated in breast cancer clinical trials.

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Fourth Annual AONN+ Conference

The results of the BCEI study were highly encouraging. At 3 months, the experimental group reported improved QOL, whereas the control group reported a significant QOL decline. At 6 months, the experimental group reported continued maintenance of QOL. Although the control group also reported improved QOL, significant differences continued to exist between the 2 groups. Dr Meneses summarized the key lessons learned in the BCEI study: • Consistent support and education, “which we now call navigation,” makes a positive difference in the QOL of breast cancer survivors. • Consistent support, education, and engagement of a motivated breast cancer survivor results in effective and long-term patient commitment to cancer surveillance and other health behaviors. • This intervention required face-to-face contact, which is not inexpensive. Women in at-risk groups, including residents of rural areas of Florida and Spanish-speaking Latinas, were unable to participate in this program. These groups also deserve support and education. “Just because you have a great study, a great intervention, so what if it is effective? Who even reads [these journals]? Our perspective is that you cannot hold on to effective evidence-based programs. You need to disseminate your work in ways that everyone can use.... How can we get these materials and this intervention into the hands of women who need it most?” Dr Meneses stated. Dr Meneses shared details of 3 more recent “spin-off” projects that target at-risk breast cancer survivors. All of these programs were built using the framework of educational materials and interventions that had been proven in the BCEI study to enhance survivors’ QOL. • Rural Breast Cancer Survivor (RBCS) Study: This study examined the effectiveness of a telephonebased, psychoeducational support intervention for rural breast cancer survivors. Working with the Florida Department of Health, the RBCS project used a population-based approach to recruit more than 500 breast cancer survivors living in rural Florida. Participants were randomized into an experimental and control group, and agreed to participate on a monthly basis for 12 months. The RBCS intervention is a multicomponent initiative consisting of individualized telephone education and support supplemented by written materials and tip sheets (English and Spanish). Education sessions focus on common problems faced by breast cancer survivors including cancerrelated fatigue, lymphedema, and pain. Nurses teach participants about physical changes after breast cancer, how to live a healthy lifestyle (ie, physical activity,

nutrition, diet), and about cancer surveillance and follow-up (ie, bone density testing, mammograms, gynecologic care, routine healthcare provider visits). “Over 430 women have participated [in RBCS] over the past 4 years.… We are really excited about the dissemination potential of this project, which is now coming to a close.… Our preliminary results show that at-risk survivors benefit from survivorship support and education. These women are engaged as advocates for their care,” Dr Meneses said.

According to the American Cancer Society, only 5% of all breast cancers diagnosed in the United States each year occur in women younger than 40 years of age. • Reach Out to Breast Cancer Survivors in North Central Alabama: In an initiative funded by the Komen Foundation, Dr Meneses and her colleagues targeted rural breast cancer survivors in Alabama. They adapted the educational materials used in the RBCS study, altering them from an eighth-grade to a fifth-grade reading level, and identified champions within identified Alabama counties. Dr Meneses noted that these champions were critical to the success of the Reach Out program, highlighting the example of a nurse and lymphedema specialist who passionately advocated for the program in her community near Birmingham. • Young Breast Cancer Survivorship Network (YBCSN): According to the American Cancer Society, only 5% of all breast cancers diagnosed in the United States each year occur in women younger than 40 years of age. Dr Meneses stated that these young women often feel “invisible,” as patient support services, educational materials, and social networking sites typically target and depict middle-aged and older women. Recognizing that many of the young breast cancer survivors in Alabama are African American with triple-negative breast cancer, Dr Meneses and her colleagues performed a community assessment among this subpopulation to learn their specific concerns. The team also identified a program manager, a young survivor herself, who understands the needs of young women because she lived them personally. YBCSN has grown to a network of 19 partners, including cancer centers, with a website (www.youngsurvivors bhm.org) and the support of 2 national organizations, Living Beyond Breast Cancer and the Komen Foundation. “We owe a debt of gratitude to breast cancer survivors.

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Fourth Annual AONN+ Conference

Figure 1

Before 3-D nipple tattooing. No nipple reconstruction.

After 3-D nipple tattooing.

What we know today, as far as survivorship research and advocacy [across tumor types], is largely attributable to them,” Dr Meneses said. Dr Meneses concluded her presentation by recommending the searchable database Research-Tested Intervention Programs (RTIPs). Supported by NCI and the Substance Abuse and Mental Health Services Administration, the RTIPs database (http://rtips.cancer.gov/rtips/index.do) allows healthcare professionals to access research-tested cancer control interventions and program materials, including materials used in the breast cancer intervention programs spearheaded by Dr Meneses. The RBCS study and the YBCSN initiative offer timely and relevant demonstrations of the very real value associated with breast cancer care navigation. Dr Meneses explained, “[Navigators] are the heart of transitioning care for [breast cancer] patients and families.… You look into each patient’s future and say, ‘Here is where we would like to be. These are our benchmarks in the next 5, 10, 15, 20 years.’”

Three-Dimensional Nipple Tattooing

The second half of the breast cancer survivorship breakout session at the AONN+ conference focused on the growing use of 3-dimensional (3-D) nipple tattooing for patients with breast cancer who have undergone breast reconstruction. After recounting her personal experience with nipple tattooing, Lillie introduced Vinnie Myers, a self-taught tattoo artist from Finksburg, Maryland. Vinnie gracefully thanked Lillie and the audience stating, “The fact that a tattoo artist is here [at your meeting] is a testament to how far tattooing has come. You must be on to something when Lillie Shockney introduces you!” After leaving the Army, Vinnie opened a tattoo shop in

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a town north of Baltimore prepared to live out the American dream of owning a small business. In 2002, an unplanned encounter with a surgeon who performs breast reconstruction procedures for women who have undergone mastectomies, Vinnie’s life “changed forever.”2 Over time, and after study and experience, Vinnie has developed a technique of tattooing that recreates the shadowing and vasculature of a natural areola. Although the skin surface of the reconstructed breast is flat, his approach gives the appearance of a 3-D nipple. “I think it is critically important that ladies complete themselves. What has been done in the past by nurses and doctors is not adequate. We need to change gears a little bit and think a little more artistically,” Vinnie stated.

Over time, and after study and experience, Vinnie has developed a technique of tattooing that recreates the shadowing and vasculature of a natural areola. Using photographs to illustrate (Figure 1), Vinnie explained, “We create the illusion of projection where there is none.… This is the result that we would like to see on every woman who has breast reconstruction all over the world. It is a big task, but that is the mission.”

Traditional versus 3-D Nipple Tattooing

To illustrate the uniqueness of his nipple tattooing approach, Vinnie reviewed the history of nipple tattooing and the differences between “traditional” methods and his approach. He explained that plastic surgeons have approximately 2 hours of training during residency. Surgeons then train their nurses or medical aestheticians to perform tattooing after they have established their surgical practices, an approach to which Vinnie objects. “Why is it acceptable to have a nurse who has essentially zero training in tattooing do this final step of a reconstruction procedure?” Vinnie also outlined “disconnects” in the tattooing equipment, including inks and dyes, and techniques used by the medical tattooing industry compared with the traditional tattooing industry. Because these groups have remained distinct, “There is no line of communication, no sharing of ideas [between medical and traditional tattoo artists].” When talking about contrasts in artistic approaches used by surgeons performing tattoos relative to his personal approach, Vinnie clarified, “Let’s not take a washer, trace it, fill in the hole in the middle, and then tattoo that [on a breast]. This is an actual method being used right now by nurses and doctors in plastic surgery practices.”

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Fourth Annual AONN+ Conference

Vinnie illustrated the results that he can achieve with one 3-D nipple tattooing session using an example of a patient with breast cancer who underwent a bilateral mastectomy (Figure 2). He noted that the patient underwent flap surgery, which resulted in a vertical scar that conveniently caused natural-looking projection of the breast tissue. While it rarely happens today, proactive communication among breast surgeons, plastic surgeons, and tattoo artists can ensure that the surgical procedures, including skin closures, are optimized for subsequent nipple tattooing procedures. “The patient is happiest [when] everybody along the line communicates. Maybe it is a little more difficult, maybe it is a little harder to work that way. So what? The patient is happy in the end, which is what we are looking for,” Vinnie said.

While it rarely happens today, proactive communication among breast surgeons, plastic surgeons, and tattoo artists can ensure that the surgical procedures, including skin closures, are optimized for subsequent nipple tattooing procedures. Vinnie then compared dermabrasion nipple tattooing techniques with his tattooing method. Dermabrasion nipple tattoos use a high-frequency vibrating probe to push pigment into the skin. To achieve full color, several sessions may be needed. The range of colors available for dermabrasion can be limited and dermabrasion tattoos tend to fade over time. According to Vinnie, “[Dermabrasion] does not work. You are chopping up the dermis and you end up with scars. That tissue regenerates and pushes the pigment out. Very little pigment gets to the dermis, which is where you need it for good retention.” FAQs for Oncology Navigators and Patients with Breast Cancer Who is a candidate for 3-D nipple tattoos? Vinnie explained that all breast reconstruction patients are candidates for 3-D nipple tattoos: unilateral, bilateral, deep inferior epigastric perforator flap, stacked flap, and silicone gel implants. When can a patient receive a tattoo? Vinnie recommends at least a 5-month window between the final breast reconstruction surgery and nipple tattooing, presuming the scar tissue is in the center of the breast. “Not 3 months, not 2 months, not what they’ve been telling you before.” Wait-

Figure 2

Close up before.

Close up after.

ing at least 5 months allows tissue to heal and ensures good pigment retention. If the procedure included expander exchange using an inframammary fold incision, such that there is no scar across the center of the breast, a 3-month time delay is viable. What are the dangers in nipple tattooing? Based on his experience to date, Vinnie highlighted several challenges associated with nipple tattooing and patient selection. Skin quality, tissue depth, and scarring due to surgery and radiation are just some of the factors that affect aesthetic outcomes of 3-D nipple tattooing procedures. He noted, however, that this body of knowledge is evolving; “I am learning more and more that there is a whole lot to this [process]. This is a real procedure that needs to be addressed and approached just like any other procedure. We are trying to work out all the bugs so that the end result is optimal for the patient.” Should the patient undergo nipple reconstruction? Nipples can be tattooed regardless of prior nipple reconstruction. The most important question for the patient is whether they prefer nipple projection. Vinnie argued that optimal aesthetic results are achieved when the patient does not undergo nipple reconstruction. “It looks real to have areola tattoos with 3-D Montgomery glands, if you want them. That is not a problem. But the asymmetry that’s created, the unusual shapes, the flattening, the lack of flattening [with nipple reconstruction]; those play a part in what will look realistic. I do not recommend [nipple reconstruction], but it is really up to the patient,” Vinnie commented. Can failed nipple tattoos and nipple reconstruction tattoos be fixed? Yes! Pointing to photographs of a failed nipple reconstruction (Figure 3), Vinnie explained that the patient has had one nipple flatten while the other has not. Using the 3-D technique, he was able to make both nipples appear to be the same size and projecting. Vinnie illustrated his work using photographs of a patient with a unilateral breast and nipple reconstruction. The nipple tissue was scarred from the previous surgery and tattoo. “With not a whole lot of work, you can get a result

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Fourth Annual AONN+ Conference

Figure 3

Failed nipple reconstruction.

3-D nipple tattooing used to correct asymmetry.

that looks good, even after the patient has had a really bad tattoo and a really bad nipple reconstruction.” “The bottom line is, a really bad reconstruction can look so much better with a good tattoo. And a really good reconstruction can look horrible with a bad tattoo.… You have to think ahead. Who do I want to go to? How do I want to go about it? Do I want nipple reconstruction?” Nurse navigators can help women learn about these options and consider these important questions. How do you find a tattoo artist? Only a handful of tattoo artists claim to be experienced in 3-D nipple tattooing, including Vinnie Myers. “3-D tattooing is still relatively new. You are not going to be able to find somebody in every state who does it. It is just not that readily available. I am going to work my heart out to change that.” Vinnie’s advice to patients and navigators was to explore the subject with respectable local tattoo artists, keeping in mind the following: • Finding a respectable tattoo artist and shop is not difficult today. “Modern tattoo shops are not like the ones that your granddad visited when he was in the

Navy. What you should expect is an edgy but professional, clean shop.” • Ensure that the shop uses “universal precautions,” including an autoclave that has recently been spore tested. “If you ask about universal precautions and they have no idea what you’re talking about, go back to your car.” • Look at photographs and examples of their work. Ask for referrals to people who they have tattooed, and talk with those people about their experience. Vinnie reminded the audience that higher costs do not translate to better-quality nipple tattoos. Vinnie charges $400 for a unilateral nipple tattoo and $600 for bilateral tattoos, a price that he characterized as “reasonable.” Is the cost of nipple tattooing reimbursed? Vinnie indicated that insurances that pay for nipple tattooing typically reimburse half of the artist’s fee. However, the payment process is not simple or straightforward. “They always kick it back. You have to stay with it. You have to be willing to submit the paperwork.” Vinnie and his office personnel are currently developing a “form letter” for submission to payers that includes all relevant terminology to facilitate reimbursement. Vinnie concluded his portion of the Breast Cancer Navigation and Survivorship presentation by thanking Lillie and the audience for their interest in and support of his efforts. He reiterated his goal: to ensure that all women who undergo breast reconstruction have the opportunity to consider 3-D nipple tattooing that is performed by trained professionals. “With Lillie on my side, I think I have the best advocate. We are going to get something going!” g

References

1. Meneses KD, McNees P, Loerzel VW, et al. Transition from treatment to survivorship: effects of a psychoeducational intervention on quality of life in breast cancer survivors. Oncol Nurs Forum. 2007;34(5):1007-1016. 2. Vinnie Myers: Tattoo artist Vinnie Myers, making breast cancer survivors whole again. Washington Times. October 25, 2013. http://communities.wash ingtontimes.com/neighborhood/metro-news/2013/oct/25/tattoo-artistvinnie-myers-making-breast-cancer-su/#ixzz2q2R1BcVz. Accessed January 27, 2014.

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THE PATIENT’S VOICE

Can I Trust You? MMA

do not think my situation is unique. I live in a large city with horrendous healthcare. If you do not live in such a city, you may not believe that I live in the United States. I do. Most of you, I imagine, live in places—urban, suburban, or rural—similar to mine. Hopefully, because you have not been seriously ill, you do not know it. I started going to an oncologist a full year before I was told that I was really sick. He was recommended as the best oncologist in the city. For a full year, even after he got a biopsy result that said I was really sick, he told me on my monthly visits that one morning I would wake up and all my tumors would be gone. He constantly asked me, “Do you want me to give you chemotherapy?” “Only if I need it,” I would reply, assuming that as a board-certified doctor he would know. I never got chemotherapy in my home city. In September, he recommended I go to a major cancer center 700 miles from my city, the closest reputable cancer hospital that my insurance covers. I asked if it was an emergency. He told me it was not. Due to work considerations, I decided to go in December and kept seeing him every month. By the time I got to the cancer center, my cancer had turned highly aggressive (studies say this happened in September, but I was never alerted). I am still in treatment with an uncertain prognosis.

When my story got out through the grapevine, I heard other tales of healthcare woe from numerous friends and acquaintances. After 8 months living in another city to get care, supporting 2 households, uprooting some of my children and forcing others to pass almost an entire school year without their mother, modifying my employment conditions, and accruing tens of thousands of dollars in medical and living expense debt, I am back in my home city because I have to be: my employment and my younger children are here. When my story got out through the grapevine, I heard other tales of healthcare woe from numerous friends and acquaintances. For example, a friend in my city brought her toddler daughter in to her pediatrician suspecting she had diabetes and was told to give the child apple slices with honey on them, which sent the toddler into a comatose state, requiring a frantic transport to the hospital, where she was diagnosed with diabetes. An acquaintance’s mother had lost most kidney function and was given medicine

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by the specialist treating her for her kidney problem—this medicine further reduced her kidney function. My son’s friend’s mother was given medicine for her supposed bipolar disorder (apparently diagnosed based on the doctor’s “extensive experience” in detecting the disorder), fell asleep for 3 days without moving, was brought back to her doctor who conducted no tests and told the family not to worry, still did not wake up, was rushed to the hospital 24 hours later by her son, and died of an aggressive brain tumor 3 months after her wrong diagnosis. The stories kept piling up, and the outcomes kept being the same: those who stayed in my city got worse/died, and those with the resources (insurance coverage, time, and money) traveled hundreds of miles and accrued debts big and small, to get treated. Mind you, I live in a city, not in a rural area. So, now I am back here. I am shellshocked, nervous, and sick. I have prescriptions that are running out and need to be filled. I called my local pharmacy to transfer my prescriptions. The assistant told me he would call me in a few hours when he confirmed the transfer. He never called. I called back the next day to find out what had happened. Another person answered the phone this time. She told me my prescription was ready. I went to the drive-through window. I got my prescriptions through the metal drawer, placed in the drugstore’s marketing-laden bag, stapled shut. “Do you want to talk to the pharmacist?” the teller asked me. I saw no reason to do so. I had been taking these medicines for almost 8 months, now. What would I have to ask the pharmacist? When I got home, I realized I should have asked some questions. The medicines I was used to had been substituted with, I imagine, ones that are generic. I did not recognize any of the names. I opened the bottles. The pills looked nothing like the ones I normally took; mine had both been white, and one of these was blue. The label did not have the same instructions as the original bottle. I started to panic. Had some sort of mistake been made? My interaction with the medical establishment in this city had conditioned me to not trust the work of the medical experts. I called the pharmacy. The recording told me to hold on as the pharmacy was “serving other customers.” My call, it said, was very important. I waited. Five minutes passed. Ten minutes passed. I got annoyed and hung up. The comment of a pharmacist at my cancer center rang through my head. “There are retail and research pharmacists,” he told me. “Obviously, research requires higher qualifications.” I called back. I heard the same recording. This time I vowed to wait. Eventually, after almost 15 min-

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THE PATIENT’S VOICE

utes waiting, someone answered. “Hold on for the pharmacist,” she said. I waited another 2 minutes. The pharmacist finally answered. Upset because of both the labeling issue and the long wait time, I had little patience left. “Are these the correct medicines or are they not?” I demanded. Kindly, he had me read the labels on the 2 bottles, one from my cancer center, one from the retail outlet that employed him. “Yes,” he told me. “They are the same medicines.” “Thank you,” I told him and hung up. This experience did little to encourage my trust in the pharmacies/pharmacists in my city. I know that for whatever reason, not all pharmacists want to go into research or become a doctor of pharmacology. For many, the PharmD degree and other legal requirements to be a pharmacist suffice. This is probably better for patients, too, who may not always need someone with a PhD. I know, too, that no medical research takes place in my city; everything is retail based. But, regardless, it would be really nice if pharmacists (research or retail) could acknowledge a few basic facts:

ly a priority. If even in a retail establishment part of your job requires serving patients, please do so by not making them wait for extended periods of time. Disgruntled customers can really eat away at profits! 2. Dealing with the familiar helps patients, most of whom have nowhere near your knowledge of their medicines. Within the legal requirements, when working with a transferred prescription, include as much similar information on one bottle as on the next. Since you have to call to confirm the prescription anyway, can you simply ask for what information is on the previous bottle’s label? For example, on my original prescription bottle, the instructions said “Take on Monday, Wednesday, and Friday.” The new label contains none of that information. However, because I kept both the new and the old bottles, I know it. 3. Train the frontline window people to explain a little bit about the medicines they are giving out. Much of my concern could have easily been averted had I been told that one medicine had been replaced by a generic one. I know it is legal to do this and supposedly causes no harm to the patient, yet I still would have liked to have been told that it had been done. Also, I would have liked to have known that one of my medicines could come in different colors. If I had simply been told at the drive-through window something like, “This medicine comes in different colors. I do not know what color your other pills were that you got from your previous pharmacy, but these are blue,” my doubts would have been allayed. I may have still called the pharmacy to double-check that all was as it should be, but I also certainly would have appreciated a little additional information right from the start.

Even though as a pharmacist at a retail outlet you may be under lots of pressure to make a larger profit by getting out as much medicine as possible to as many patients as possible, please make answering phone calls promptly a priority. 1. Patients, by the time they get to the pharmacist, have often been traumatized. Perhaps they have just found out they have cancer or another life-threatening illness. Perhaps, as in my case, they have had horrific experiences with the medical establishment in their region. Perhaps their lives have been changed and then changed again, over and over, as they look for the alternatives they can afford for care. Regardless, even though as a pharmacist at a retail outlet you may be under lots of pressure to make a larger profit by getting out as much medicine as possible to as many patients as possible, please make answering phone calls prompt-

Principles in Value and Market Access

Trust between the patient and his/her medical team is crucial. Pharmacists, as part of that team, need to build trust. I do not even want to feel that the question “Can I trust you?” is one I need to ask. I want to have complete confidence in your abilities. Help me build it. g MMA is undergoing treatment for cancer. She wishes to use her initials.

4TH ANNUAL CONFERENCE

May 6, 2014 Loews Hollywood Hotel • Los Angeles, CA

Gary M. Owens, MD

Grant Lawless, RPh, MD, FACP

President Gary Owens Associates

Program Director Associate Professor University of Southern California CO-CHAIR

CO-CHAIR

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THE PATIENT’S VOICE

Commentary

A Navigator Is Key Iyaad Hasan, DNP, CNP Cleveland Clinic Taussig Cancer Institute

dvances in cancer care and treatment have led to excellent success in the “fight against cancer.” Millions of lives have been saved through the use of more targeted treatments and medications. The transitioning of care to the outpatient setting has been shown to increase a person’s quality of life during treatment. Patients are now more educated with easier access to information than ever before. Often they walk in with more knowledge of what treatments and resources are available, their chances for survival, and what past patient experiences were. Our expertise on programming to educate the public and use of better screening tools has also increased the number of cancer patients entering the healthcare system. Sadly, many of these individuals are underserved or uninsured with added barriers to their care. Improvements, information access, and changing healthcare coverage have made cancer care more complex. Patients today have more decisions to make and more options to consider than in past years. Patient engagement in treatment decisions, as was seen with the physician asking MMA about chemotherapy, has become a more accepted concept in healthcare. The responsibility of the clinician is to make patients comfortable and engaged in their care. But with so many demands on the clinician’s time, it can make patients feel like they are in a “fast food” line while they are being treated. Patients each have their own issues, concerns, or barriers. However, there are commonalities that occur among all patients. Coordination of care is key to having limited frustration while on cancer treatment. Therefore, if patients have a point of contact that can guide or “navigate” them through their specific cancer care, then patients will be less frustrated, empowered, and most of all supported when issues occur. Looking at MMA’s experience, I wish that she had a nurse or patient navigator to guide her through all the issues that presented themselves during her cancer journey. Although the use of navigators has been increasing, many ask what is a nurse or patient navigator. The idea of patient navigation was developed during the 1980s in Harlem, New York, by Dr Harold Freeman. He was able to utilize nonclinical individuals, what he called “navigators,” to help African American women obtain breast cancer screenings and treatment. The “culturally competent” individuals worked with the patients to eliminate

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barriers to the diagnosis and treatment of early-stage disease. Patients enter the oncology world shocked from the diagnosis and confused at which way to go. Having people who have the experience of cancer care and understand the possible challenges of the journey ahead can help patients remove roadblocks, and provide supportive services when needed. A navigator would have been able to answer the questions that have left MMA confused and infuriated with her healthcare. For example, understanding the reason it was necessary to use a different medical center over MMA’s hometown location. These individuals set up multiple appointments and truly help patients make informed medical decisions. Having access to the correct services helps the patient when there are issues or barriers around family, employment, and other personal issues that can distract the patient on treatment. Navigators help with medication issues, education when appropriate (ie, when MMA had a medication that was from a different manufacturer), and direct the patient to support services related to their barriers. They help patients find community support networks that will assist the patient and family to cope with the new diagnosis. If frustrations occur during the clinical care, navigators can be a voice for the patient when dealing with physicians, pharmacists, or other team members. Even if care is completed, the navigator can continue the follow-up support into the survivorship phase with questions about cancer screening, prevention, and surveillance. Navigation programs have been added in many hospitals across the country. Funding has been created from both private and government sources to help support these programs. New standards and guidelines for navigation programs have been created for cancer centers that would like to be accredited by the Commission on Cancer by 2015. Sadly, as we move into the new age of healthcare, the patient is becoming more of a customer. Although we can provide a diagnosis, it is the service that we provide and the patient’s opinion that count the most. If this is true, then having the right “customer service representative” to help patients when there are issues is key in making the patient feel satisfied and confident that everything possible was done to help them. Navigators are those people and navigators would have helped with this patient. g

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Y EA R A N N I V E R S A RY

FIFTH ANNUAL

Navigation and 5 Survivorship Conference YEAR

A N N I V E R S A RY

September 18-21, 2014 Walt Disney World Dolphin Hotel • Orlando, Florida

TO DATE, THE CONFERENCE HAS HAD MORE THAN:

1,700

Total Attendees

Abstracts

Thank you again for a wonderful conference on the conference to my administration each year to help me get funding for the following year and so far...so good. I attend various national conferences throughout the year and stand amazed at your ability to continue

Expert Speakers

60 Abstracts Submitted

(only missed your first year). I submit a report

to provide new and motivating presentations. – 2013 Conference Attendee

93%

108

93% of 2013 conference attendees said they intended to change their practice as a result of participating in the AONN+ Conference

50 40 30 20

20 10 0

9 2010

2011

2012

2013

Year of Submission

“WOW! I am so impressed with the growth of AONN. Lillie, Sharon, and their team are awesome. The speakers were knowledgeable about their subject matter and all the presentations were relevant to my practice. I will use the pearls of wisdom shared by the speakers to my team at

97%

97% of 2013 conference attendees rated the AONN+ Conference as Above Average or Excellent when compared with other continuing education activities

home. I arrived feeling we have a pretty good program and I am leaving with ideas to share to make it even better!” – Donna Moore Wilson, BSN, RN, CBCN Oncology Nurse Navigator Bon Secours Cancer Institute Richmond, Virginia AONN+ A-SIZE_11414

www.regonline.com/AONN2014

Nutrition and cancer

Malnutrition in Patients with Cancer: An Often Overlooked and Undertreated Problem Abby C. Sauer, MPH, RD Abbott Nutrition

atients with cancer face many challenges, including eating well to maintain a good nutritional status and avoid weight loss and malnutrition. Research shows that the majority of patients with cancer suffer from nutritional deficits, and up to 85% of patients with certain cancer types experience some form of weight loss and/or malnutrition during their cancer treatment.1 For some patients, the nutritional deficits can progress to cancer cachexia, a specific form of malnutrition characterized by loss of lean body mass, muscle wasting, and impaired immune, physical, and mental function.2 Poor nutritional status and weight loss can lead to poor outcomes for patients, including decreased quality of life, decreased functional status, increased complication rates, and treatment disruptions.1,3,4 Fortunately, early nutrition intervention can improve patients’ nutritional status and help patients to maintain body weight, maintain lean body mass, better tolerate treatment, and improve quality of life.3,5-8 Therefore, all healthcare professionals who care for patients with cancer need to recognize the signs of malnutrition and provide early and effective nutrition intervention to improve outcomes. The continuum of cancer includes diagnosis, treatment, recovery, and survivorship. Each stage in this continuum is associated with specific nutritional challenges to patients. Changes in nutritional status may begin prior to diagnosis,

Figure Impact of Malnutrition3 Cancer-Related Malnutrition Increased Infection Rate

Increased Risk of Postoperative Complications

Reduced Tolerance/ Response to Treatment

Increased Cost

Reduced Performance Status

Social Burden

Decreased Quality of Life Reprinted from Clinical Nutrition, 26(3), Marín Caro MM, Laviano A, Pichard C. Nutritional intervention and quality of life in adult oncology patients, pg. 292, 2007, with permission from Elsevier.

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when physical and psychosocial issues commonly have a negative impact on appetite and food intake. At cancer diagnosis, half of patients present with some form of nutritional deficit.9 Nutritional status also often declines further during cancer treatment due to various treatment-related side effects such as anorexia, mucositis, and nausea and vomiting. The incidence of malnutrition and weight loss in people with cancer ranges from 31% to 87%.1 Patients with cancer of the lung, esophagus, stomach, colon, rectum, liver, and pancreas are at greatest risk.10 Weight loss has been found to lead to poor outcomes, with as little as a 5% weight loss predicting decreased response to therapy and decreased survival.1 Malnutrition also leads to numerous negative outcomes, including decreased quality of life, increased complication rates, decreased treatment tolerance, and increased mortality (Figure).3 Of people who die from cancer, up to half have been malnourished.11 Furthermore, up to 20% of patients die from the effects of malnutrition rather than from the cancer itself.12 In addition to malnutrition and weight loss, patients with cancer often experience loss of lean body mass, or muscle mass. Loss of muscle mass can result in outcomes that are similar to those of malnutrition and include decreased immunity, increased infections, increased skin breakdown, decreased healing, and increased mortality.13 A study of patients with head and neck cancer who were starting treatment with concurrent chemotherapy and radiation found that weight loss began 1 week after the start of treatment.14 On average, the subjects lost almost 15 pounds over the course of treatment, and of that weight loss, lean body mass accounted for 71.7%.14 In some patients, malnutrition can progress to cancer cachexia, which is “a multifactorial syndrome defined by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment.”2 Its pathophysiology is characterized by a negative protein and energy balance driven by a combination of reduced food intake and abnormal metabolism.2 Due to the high prevalence of nutritional issues in these patients, nutrition screening, assessment, and intervention are crucial to preventing or minimizing the development of malnutrition. Many studies have demonstrated that maintaining a good nutritional status through nutrition inter-

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Nutrition and cancer

vention can help individuals with cancer improve outcomes, including3,6-8,15-17: • Increase energy and protein intake • Maintain and gain body weight • Improve quality of life • Improve strength and energy levels • Manage treatment-related side effects • Avoid dose reduction and treatment delays • Reduce unplanned hospital admissions. Nutrition intervention in patients with cancer can involve many strategies, including diet education and oral nutritional supplementation. The goals of nutritional support in patients with cancer are numerous and include maintaining an acceptable weight and preventing or treating malnutrition, leading to better tolerance of treatment and its side effects, more rapid healing and recovery, reduced risk of infection during treatment, and enhanced overall survival.3,18,19 Research has demonstrated that nutritional intervention in patients with cancer can result in positive outcomes. A recent systematic review and meta-analysis of oral nutritional interventions in malnourished patients with cancer showed that nutritional intervention, including nutritional counseling and oral nutritional supplementation, was associated with statistically significant improvements in weight and energy intake compared with routine care and had a beneficial effect on some aspects of quality of life.17 Another recent study showed that patients undergoing chemoradiotherapy for esophageal cancer who had participated in a nutrition intervention program experienced better outcomes than those who had received usual care. The patients receiving nutrition intervention had greater treatment completion rates and fewer unplanned hospital admissions; those who were admitted to a hospital had shorter length of stay compared with the patients receiving usual care.7 Additionally, expert nutrition groups including the American Society for Parenteral and Enteral Nutrition (ASPEN) and The European Society for Clinical Nutrition and Metabolism (ESPEN) have both issued clinical guidelines for nutritional treatment of patients with cancer. These guidelines state that patients with cancer should undergo nutrition screening and assessment and receive early nutrition intervention to improve outcomes.18,19 Research and expert recommendations support a preventive, rather than therapeutic, approach that encompasses nutrition screening as early as possible and treatment of nutritional problems through nutrition intervention.2,12,18,19 The entire healthcare team needs to work together to identify cancer patients at risk of malnutrition early in order to plan the best possible intervention and follow-up during cancer treatment and progression.20 Poor nutritional status, weight loss, and malnutrition are common in patients with cancer. These nutritional challenges significantly increase morbidity and mortality in these

patients, and severe cases can lead to cancer cachexia. Early nutrition screening and intervention is vital to help these patients prevent this nutritional decline and to better tolerate their treatment regimen. Research has demonstrated that early nutrition intervention in patients with cancer, including oral nutritional supplementation, improves outcomes such as nutritional status, weight, treatment tolerance, and quality of life. A multidisciplinary approach among all healthcare professionals involved in cancer care is necessary to identify at-risk patients early in the process and provide appropriate and effective nutritional interventions, so that malnutrition does not remain an overlooked, underrecognized, and undertreated problem. g

References

1. DeWys WD, Begg C, Lavin PT, et al. Prognostic effect of weight loss prior to chemotherapy in cancer patients. Eastern Cooperative Oncology Group. Am J Med. 1980;69:491-497. 2. Fearon K, Strasser F, Anker SD, et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol. 2011;12:489-495. 3. Marín Caro MM, Laviano A, Pichard C. Nutritional intervention and quality of life in adult oncology patients. Clin Nutr. 2007;26:289-301. 4. Andreyev HJN, Norman AR, Oates J, et al. Why do patients with weight loss have a worse outcome when undergoing chemotherapy for gastrointestinal malignancies? Eur J Cancer. 1998;34:503-509. 5. Isenring EA, Capra S, Bauer JD. Nutrition intervention is beneficial in oncology outpatients receiving radiotherapy to the gastrointestinal or head and neck area. Br J Cancer. 2004;91:447-452. 6. Bauer J, Capra S, Battistutta D, et al. Compliance with nutrition prescription improves outcomes in patients with unresectable pancreatic cancer. Clin Nutr. 2005;24:998-1004. 7. Odelli C, Burgess D, Bateman L, et al. Nutrition support improves patient outcomes, treatment tolerance and admission characteristics in oesophageal cancer. Clin Oncol. 2005;17:639-645. 8. Nayel H, el-Ghoneimy E, el-Haddad S. Impact of nutritional supplementation on treatment delay and morbidity in patients with head and neck tumors treated with irradiation. Nutrition. 1992;8:13-18. 9. Halpern-Silveira D, Susin LR, Borges LR, et al. Body weight and fat-free mass changes in a cohort of patients receiving chemotherapy. Support Care Cancer. 2010;18:617-625. 10. Capra S, Ferguson M, Ried K. Cancer: impact of nutrition intervention outcome—nutrition issues for patients. Nutrition. 2001;17:769-772. 11. Capra S, Bauer J, Davidson W, et al. Nutritional therapy for cancer-induced weight loss. Nutr Clin Pract. 2002;17:210-213. 12. Ottery FD. Cancer cachexia: prevention, early diagnosis, and management. Cancer Pract. 1994;2:123-131. 13. Demling RH. Nutrition, anabolism, and the woundhealing process: an overview. Eplasty. 2009;9. www.eplasty.com/index.php?option=com_content& view=article&id=272&catid=170:volume-09-eplasty-2009. Accessed September 9, 2013. 14. Silver HJ, Dietrich MS, Murphy BA. Changes in body mass, energy balance, physical function, and inflammatory state in patients with locally advanced head and neck cancer treated with concurrent chemoradiation after low-dose induction chemotherapy. Head Neck. 2007;29:893-900. 15. Bozzetti F. Nutritional support of the oncology patient. Crit Rev Oncol Hematol. 2013;87:172-200. 16. Isenring EA, Bauer JD, Capra S. Nutrition support using the American Dietetic Association Medical Nutrition Therapy protocol for radiation oncology patients improves dietary intake compared with standard practice. J Am Diet Assoc. 2007;107:404-412. 17. Baldwin C, Spiro A, Ahern R, et al. Oral nutritional interventions in malnourished patients with cancer: a systematic review and meta-analysis. J Natl Cancer Inst. 2012;104:371-385. 18. August DA, Huhmann MB; American Society for Parenteral and Enteral Nutrition (ASPEN) Board of Directors. ASPEN clinical guidelines: nutrition support therapy during adult anticancer treatment and in hematopoeitic cell transplantation. JPEN J Parenter Enteral Nutr. 2009;33:472-500. 19. Arends J, Bodoky G, Bozzetti F, et al. ESPEN Guidelines on Enteral Nutrition: non-surgical oncology. Clin Nutr. 2006;25:245-259. 20. Santarpia L, Contaldo F, Pasanisi F. Nutritional screening and early treatment of malnutrition in cancer patients. J Cachexia Sarcopenia Muscle. 2011;2:27-35.

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Oncology nurse excellence award

Oncology Nurse Excellence Award Winner Sponsored by

Libby Daniels Named Award Winner at AONN+ Conference Lisa Neuman

t the Academy of Oncology Nurse & Patient Navigators (AONN+) Fourth Annual Conference in November, one outstanding nurse was recognized by her peers for her dedication and commitment to the profession. The 2013 ONE Award winner was Libby Daniels, RN, OCN, from Lexington Medical Center in West Columbia, South Carolina. Nominated by a colleague who is studying to be a nurse practitioner, Ms Daniels made a lasting impression on her in a very personal way. “Libby’s exceptional knowledge and patient skills became even more evident to me when the oncology experience became personal after my grandfather was diagnosed with stage IV lung cancer,” the colleague wrote. “Libby heard about my grandfather’s diagnosis, and even though he was not one of her patients, she immediately offered her assistance. Libby has been there for my whole family around the clock offering information, guidance, or just a listening ear—clearly illustrating that being an oncology nurse navigator is a way of life to her and not just a job. Some might say that oncology nursing is her ‘calling,’ and I would certainly agree.” In a phone interview held after she returned home from the conference, Ms Daniels reflected on the case that led to her nomination. “My colleague’s grandfather had recently been diagnosed with stage IV lung cancer. They were having some family dynamics going on about whether to do treatment or not. I basically said to my colleague, ‘That’s what I do. I’m a nurse navigator. I can meet your family, be the mediator, and explain all the pros and cons of the different courses of treatment for you.’ We held a family meeting where we let each family member talk about how they felt and what they thought would be best for their loved one,” she explained. “In talking to her grandparents, I found that he wanted to try chemotherapy for his family. Through the process

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of talking to and getting to know the family, one of the main goals that I learned her grandfather had was that he and his wife were soon going to celebrate their 60th wedding anniversary. “His main concern,” Ms Daniels continued, “and he just kept saying it over and over, was ‘I don’t want to be a vegetable.’ He kept talking about his anniversary, how he and his wife had been married for 60 years, how they had always been together. They didn’t know what life was going to be like not being together.” There was a particularly heart-wrenching moment when the grandfather asked her, “Can the chemotherapy cure me?’’ and Ms Daniels had to tell him that it would not. That’s when the 3 of them—the patient and his wife and Ms Daniels—talked about his goals and how important his quality of life was to him. Ultimately, his “treatment goal” was to be married for 60 years. “I went back to my colleague and I said, ‘I really feel like the reason why he’s doing this chemotherapy is because he’s got a goal. His goal is to be married for 60 years.’ He ended up doing the treatment until he reached that goal, and he passed away on the day of their 60th wedding anniversary,” Ms Daniels reflected. Anyone can imagine what that experience would be like for the family of that patient. But what was that experience like for the nurse who navigated that patient to the end of his life, a patient who passed away on the very day of his 60th wedding anniversary? “When you’re in your 80s, you know life can come to an end, but life isn’t always about our lifespan. It’s about reaching goals and fulfilling dreams. That was the closest goal that he knew he was going to be able to reach. That was very important to him,” Ms Daniels explained. “It was very emotional for me, because my parents are not much younger than he and his wife. I know what it’s

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Oncology nurse excellence award

like to have spent that many years with someone. You’re celebrating spending your life together but at the same time you’re saying goodbye to one another. That’s very difficult,” she said. “When he asked me if he could be cured and I told him he couldn’t, yes, I cried, because you can’t lie to your patient,” Ms Daniels continued. “You just can’t lie. It was hard for his son to hear that because the grandfather was the family patriarch. But he did it the way he wanted to. He did it with dignity, he reached his goal, and he was able to pass away on his terms.” “I feel like in nursing—and especially in oncology nursing—a lot of times you just have to listen because sometimes it’s not about wanting to live for 6 more months, it’s about the goals that the patient wants to reach and that’s very important,” Ms Daniels explained. “None of us know how long our life is going to be. But if there’s something big to look forward to—a wedding, or a grandbaby about to be born, or a grandchild about to graduate from college, they’re goals that these patients with cancer strive for, a reason to do that extra chemotherapy, to get a little bit stronger, to tough it out so they can reach their goal.”

“I was very humbled when a nurse from California, or one from Canada, or one from Minnesota, came up and said, ‘I voted for you.’” After the initial shock of hearing her name called as the ONE Award winner wore off, Ms Daniels had an amazing experience at the conference. “I was very humbled when a nurse from California, or one from Canada, or one from Minnesota, came up and said, ‘I voted for you,’” she shared. “I don’t know these nurses. To have that said to you by complete strangers is very, very humbling. I’ve met some new friends that I would have never met. And it’s just really cool to be able to sit and talk to other nurses and it’s OK to say all the gross things that we nurses talk about, because we all speak the same language.” Ms Daniels’ trip home from the conference was more than memorable as well, and not just because of weather delays. “I didn’t get home from the airport until after midnight,” she recalled, “and my parents were sitting there at the gate and they walked up to me and they could not stop hugging me. They said, ‘You will never know how proud we are of you.’” Her mother is a breast cancer survivor, and her father is a lung cancer survivor. “I am 52 years old, and my parents are my everything,” Ms Daniels explained. “They’re

The ONE Award presentation (left to right): Sharon Gentry, RN, MSN, AOCN, CBCN; Lillie D. Shockney, RN, BS, MAS; Pamela Cook, BSN, Bayer HealthCare; Libby Daniels, RN, OCN; and Emily Acland, Patient Access Network Foundation

the reason why I do the things that I do. So when they said to me, ‘We couldn’t be prouder and we couldn’t wait to see your award,’ and that they had been sitting there in the airport until after midnight when they’re 75 years old and should have been at home in bed—they waited 2 hours because my plane was late—that moment was just priceless to me.” In addition to the plaque she received at the conference, Ms Daniels will be given $250 to donate to a charity of her choice. She’s chosen the Lexington Medical Center Foundation. The foundation, which recently celebrated its 20th year of operation, is funded by the medical center’s employees. The hospital holds fundraising events such as Women’s Night Out and Cancer of Many Colors, where money is raised to help not just patients with cancer but any patients within the hospital’s community who might need assistance. It even helps with employees who may have had a hard time or have gotten really sick. “A big part of the foundation’s success is because of employees giving back,” Ms Daniels explained. Ms Daniels wished to express her gratitude to AONN+, award sponsors Bayer and the PAN Foundation, and all the nurses who voted for her. “You don’t often get a chance to be in a room with that many powerful women at one time,” Ms Daniels said. “So I am very grateful to the conference organizers and the sponsors for giving me the chance to attend the conference, and for the award that has made my parents so proud.” g

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A legacy of innovation, partnership, and patient care

Lilly Oncology is committed to making a meaningful difference for patients by answering the complex questions of cancer care. Weâ&#x20AC;&#x2122;re partnering with organizations all over the world to provide valued resources and support. To learn more, visit www.LillyOncology.com.