Indexed in MEDLINE, PubMed, and PubMed Central PRSRT STD US POSTAGE National Library of Medicine PAID 500 NE Multnomah St, Suite 100 PORTLAND OR PERMIT NO 1452 Portland, Oregon 97232 Volume 16 No. 3 — Summer 2012

Change Service Requested Summer 2012 Volume 16 No. 3

A peer-reviewed journal of medical science, social science in medicine, and medical humanities

Original Research & Contributions 4 Prostate Cancer Screening Trends in a Large, Integrated Health Care System 10 A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

18 Reductions in Pain Medication Use

THE PERMANENTE JOURNAL Associated with Traditional Chinese Medicine for Chronic Pain 25 Ultrasound Measurements in Hypertrophic Pyloric Stenosis: Don’t Let the Numbers Fool You 28 Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs 37 Sociodemographic Characteristics of Members of a Large, Integrated Health Care System: Comparison with US Census Bureau Data 42 Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class Special Report 49 A Framework for Making Patient-Centered Care Front and Center

Review Article 54 Women in Surgery: Bright, Sharp, Brave, and Temperate

Case Studies 60 Lymphoepithelial Carcinoma: A Case of a Rare Parotid Gland Tumor 63 Neurothekeoma in the Posterior Fossa: Case Report and Literature Review

Commentary

71 Solving the Emergency Care Crisis in

Printed on acid free paper. America: The Power of the Law and Storytelling

The Permanente Journal Summer 2012 Volume 16 No. 3 ISSN 1552-5767 www.thepermanentejournal.org Summer 2012/ Volume 16 No. 3 The ORIGINAL RESEARCH users, there was a short-term reduction Books published by PermanenteJournal & CONTRIBUTIONS in NSAID use—sustained as visits became less frequent. There was no indication Permanente authors: 4 Prostate Cancer Screening Trends in a that pain reduction during TCM treat- Large, Integrated Health Care System. Mission: The Permanente Journal advances ment was influenced by drug use. Lauren Wallner, PhD, MPH; Stanley knowledge in scientific research, clinical Pfenninger & Fowler’s Procedures Frencher, MD; Jin-Wen Hsu, PhD; 25 Ultrasound Measurements in Hyper- medicine, and innovative health care for Primary Care; Third Edition Ronald Loo, MD; Joice Huang, PharmD, trophic Pyloric Stenosis: Don’t Let the John L Pfenninger, Gran C Fowler; delivery. MBA; Michael Nichol, PhD; Steven Numbers Fool You. Meena Said, MD; Special Editors: Haneef Alibhai, Jacobsen, MD, PhD Donald B Shaul, MD; Michele Fuji- Jamie Broomfield, Joe Esherick, moto, MD; Gary Radner, MD; Roman In a retrospective cohort study (1998- Grant C Fowler, Theodore O’Connell, Circulation: 25,000 print readers per M Sydorak, MD; Harry Applebaum, MD 2007) of 2,061,047 men (older than 35 Dale Patterson, Mike Petrizzi quarter, and 1 million Internet hits in years) within a large integrated health In a retrospective analysis of 189 ISBN-10: 0323052673 2011 from 150 countries. care system, 572,306 (28%) had pros- patients with hypertrophic pyloric ISBN-13: 978-0323052672 tate-specific antigen (PSA) screening. stenosis (means of: 4.6 weeks, 3.9 kg, Patterns of screenings varied modestly 0.42 cm muscle thickness, and 1.89 cm , PA: Elsevier Mosby; by age, race, and physician. The low- muscle length) that were treated at a 2011 est frequencies were in men younger single institution over a 5-year period Hardcover: 1776 pages than 45 years (19%) and older than 85 (2005-2010), analysis showed a signifi- $162.95 years (13%). PSA screening was most cant relationship between both age and common in white men (33.5%) and weight and the muscle thickness. No in men seen by physicians of the same significant relationship existed between race/ethnicity (32%), compared with pyloric length and age or weight. men with physicians of disparate race/ ethnicity (26%, p < 0.001). 28 Living With Advanced Illness: Longi- The Power of Prana: Breathe tudinal Study of Patient, Family, and Your Way to Health and Vitality 10 A Colorectal “Care Bundle” to Reduce Caregiver Needs. Karen Tallman, PhD; Master Stephen Co; Eric B Surgical Site Infections in Colorectal Ruth Greenwald, MS, MA; Alice Reide- Robins, MD; John Merryman Surgeries: A Single-Center Experience. nouer, SM; Laurel Pantel ON THE COVER Waleed Lutfiyya, MD, FASCRS; David ISBN-10: 160407440X Little is known about how the needs of “Lower Falls” a Parsons, MD, FASCRS; Juliann Breen, ISBN-13: 978-1604074406 patients with advanced illness and the photograph by Gary RN, CPHQ Boulder, CO: Sounds True, Inc; Larsen, MS, was taken needs of their families and caregivers In a retrospective analysis of infection 2011 at Artist Point in the evolve, or how effectively those needs rates at Kaiser Sunnyside Medical Cen- Paperback: 189 pages Grand Canyon of are addressed. A video-ethnographic ap- ter, from the National Surgical Quality $15.95 the Yellowstone in proach was conducted to observe and Improvement Program (NSQIP) database, Yellowstone National interview 12 patients and their families the authors reviewed overall, superficial, Park. The mist rainbow before, during, and after an inpatient deep, and organ/space surgical site infec- can be seen every day palliative care consult at 3 urban Medi- tions (SSIs). As a baseline there were 430 around 9:50 am and is cal Centers. This longitudinal approach colorectal cases from January 2006 to just one of the stunning highlighted areas for improvement, December 2009. After a colorectal care sights to see in this which include clear, integrated com- bundle of interventions was implemented A Soldier’s Story: World War II magnificent place. munications in the hospital and coor- January 2010 through June 2011, there dinated, comprehensive postdischarge and the Battle at Sessenheim, Mr Larsen is a Clinical Microbiologist in the were 13 infections in 195 cases, a 6.67% support for patients not under hospice France Bacteriology Department of the Northern California overall rate. The overall decrease of care and for their caregivers. John T “Jack” Scannell; Kate Regional Laboratory in Berkeley, CA. He uses 14.49% from baseline, and the decrease Scannell, MD, editor photography as a refreshing excuse to get away of superficial SSI from 15.12% to 3.59%, 37 Sociodemographic Characteristics of from the busy laboratory to peaceful locations and were both significant (p <0.0001). The Members of a Large, Integrated Health ISBN-10: 1467990116 to indulge in his re-energizing hobby. rates for deep and organ/space SSIs Care System: Comparison with US ISBN-13: 978-1467990110 showed a nonsignificant decrease. The Census Bureau Data. Corinna Koebnick, Scotts Valley, CA: CreateSpace; NSQIP observed-to-expected ratio for PhD, MS; Annette M Langer-Gould, MD, 2011 colorectal SSI decreased from a range of PhD, MS; Michael K Gould, MD, MS; Chun R Chao, PhD, MS; Rajan L Iyer, Paperback: 104 pages 1.27 to 1.83 before implementation to $8.99 0.54 after implementation. MPH; Ning Smith, PhD; Wansu Chen, MS; Steven J Jacobsen, MD, PhD 18 Reductions in Pain Medication Use On review of sociodemographic char- Associated with Traditional Chinese acteristics of 3,328,579 members of Medicine for Chronic Pain. Kaiser Permanente Southern California Charles Elder, MD, MPH, FACP; Cheryl (KPSC) in 2000 and 3,357,959 members 78 BOOK REVIEW Ritenbaugh, PhD, MPH; Mikel Aickin, in 2010, compared with those of the PhD; Richard Hammerschlag, PhD; Silicone 80 CME EVALUATION FORM underlying population in the coverage Samuel Dworkin, DDS, PhD; Scott Mist, Carlos Meza area based on US Census Bureau data; PhD, MAcOM; Richard E Harris, PhD similarities included: neighborhood edu- ISBN: 978-0-61533-859-0 Participants (168) in a randomized trial cational levels, household incomes, sex, ISBN: 978-0-98260-510-3 of traditional Chinese medicine (TCM) age, and the proportion of Hispanics/La- Tamarac, FL: Roatan Press; 2010 for temporomandibular joint dysfunction tinos; however, KPSC members included Paperback: 270 pages had a linear decline in pain over 16 TCM more blacks. These findings suggest that $14.95 The Permanente Journal visits. This article reports an observational this setting may provide valid inference analysis of the average pain outcomes 500 NE Multnomah St, Suite 100 for clinical, epidemiologic, and health and medication use reported at every services research. Portland, Oregon 97232 TCM visit. Among the heaviest non- www.thepermanentejournal.org steroidal anti-inflammatory drug (NSAID) ISSN 1552-5767

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 CME credits are available online at www.thepermanentejournal.org. The mail-in CME form can be found on page 80.

42 Engaging Patients in Managing CASE STUDIES 67 Development of a Computerized Their Health Care: Patient Perceptions 60 Lymphoepithelial Carcinoma: Intravenous Insulin Application of the Effect of a Total Joint A Case of a Rare Parotid Gland Tumor. (AutoCal) at Kaiser Permanente Replacement Presurgical Class. Christopher G Tang, MD; Thomas M Northwest, Integrated into Kaiser Mary-Louise Lane-Carlson, EdD, MPH, Schmidtknecht, MD; Grace Y Tang; Luke J Permanente HealthConnect: Impact RD, CDE; John Kumar, MD Schloegel, MD; Barry Rasgon, MD on Safety and Nursing Workload. Most research studies on presurgical Christine Olinghouse, MPH/MSN, A 29-year-old woman presented with a FNP-BC, BC-ADM, CDE education are quantitative in nature, 10-month history of an enlarging left- preventing patients’ voices from being sided facial mass. The patient received a A review of 35 patient charts using heard. Using a success-case, narrative total left parotidectomy and a selective a computerized insulin infusion design, 24 patients (from the Kaiser neck dissection. A lymphoepithelial tool indicated 100% accuracy in Permanente Downey Medical Center) carcinoma of the parotid is a rare salivary computations with a reduction of were interviewed regarding their pre- gland tumor accounting for less than 1% nursing workload from 2 minutes to 30 and postsurgical experiences. Patient of all salivary gland tumors. Complete seconds per calculation. Development education, in the form of classes, with resection of this poorly differentiated and operationalization of an integrated recognition of the participants’ physical carcinoma followed by postoperative intravenous insulin calculator into needs, social needs, concrete supports, radiation is essential for local control. HealthConnect was successfully and psychological needs, as well as the completed at the Kaiser Sunnyside willingness of the participants to work 63 Neurothekeoma in the Posterior Fossa: Medical Center, with 97% nursing with their health care team, can promote Case Report and Literature Review. satisfaction scores, and a promise to patient engagement and improved Daniela Alexandru, MD; Radha generate data on intravenous insulin quality of life. Satyadev, MD; William So, MD therapy to refine the protocol. Special Report Neurothekeoma is a benign nerve sheath 49 A Framework for Making Patient- tumor (myxoma), though intracranial COMMENTARY Centered Care Front and Center. neurothekeoma is an extremely rare entity (only 3 cases reported in the literature): 71 Solving the Emergency Care Crisis Sarah M Greene, MPH; Leah Tuzzio, in America: The Power of the Law MPH; Dan Cherkin, PhD A case is presented of a 40-year-old man with a very large neurothekeoma present and Storytelling. John Maa, MD The concept of patient-centered care is in the posterior fossa who had no An Emergency Department visit that now considered an essential aspiration neurologic deficit on presentation. ended tragically prompted a yearlong of high-quality health care systems. journey to Washington, DC, to explore Historically, those advocating patient- the current crisis in emergency room care. centered care have focused on the CLINICAL MEDICINE A three-part solution includes 1) nation- relationship between the patient and 65 Nailing the Diagnosis: Koilonychia. ally standardizing and coordinating care, the physician or care team. Changes to Vivek Kumar, MD; Sourabh Aggarwal, MD; 2) prioritizing resources and incentives the health care system suggest that a Alka Sharma, MD; Vishal Sharma, MD in the delivery of emergency care, and multidimensional conceptualization of 3) inspiring young clinicians to careers Koilonychia is an abnormality of the patient-centered care illustrates how in emergency care. Physicians across nails that is also called spoon-shaped clinical, structural, and interpersonal America should now harness the power (concave) nails. It is primarily recognized attributes can collectively influence the of storytelling to strengthen both the as a manifestation of chronic iron patient’s experience. delivery of patient care and health care deficiency, resulting from malnutrition, reform efforts on Capitol Hill. gastrointestinal blood loss, worms, REVIEW ARTICLE gastrointestinal malignancy, and celiac 54 Women in Surgery: Bright, Sharp, disease. Other causes of koilonychia NARRATIVE MEDICINE Brave, and Temperate. are high altitude, trauma, exposure to petroleum products, and heredity. 75 Trifecta: Running on Hope. Elisabeth C McLemore, MD; Sonia Carol Redding, MA Ramamoorthy, MD; Carrie Y Peterson, 66 Image Diagnosis: Foot Pain and Fever. MD; Barbara L Bass, MD With excerpts from physicians’ notes, William C Krauss, MD, FACEP a patient-author recounts the physical In drastic contrast to the 1970s, nearly Necrotizing fasciitis is characterized by and emotional history of personal illness half of first-time applicants to medical widespread necrosis of the subcutaneous that began in 1983. schools in 2011 were women. Less than tissue and fascia (as evidenced by air 20% of full professor, tenured faculty, on this patient’s plain films). Typical and departmental head positions are sites for this infection are the lower currently held by women. The aim of this extremities, abdomen and perineum. article is to review the history of women The incidence of such infections, in the in surgery and to highlight individual and US, is estimated at 500 to 1500 cases institutional creative modifications that SOUL OF THE HEALER per year, with a case-fatality rate of 24% can promote the advancement of women Original Visual Art and is more commonly associated with in surgery. 17 “Kayaks on the Suwannee” injection drug use, diabetes mellitus, Mark M Cohen, MD immunosuppression, and obesity. 24 “The Healing Touch” Mohamed Osman, MD 36 “The Virgin River” Fred M Freedman, MD 48 “Star Ferry, Hong Kong, 1961” J Richard Gaskill, MD

Follow @PermanenteJ

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 1

PeThrme anenteJournal

EDITOR-IN-CHIEF EDITORIAL BOARD Tom Janisse, MD, MBA Richard Abrohams, MD Catherine Hickie, MBBS ASSOCIATE EDITOR-IN-CHIEF Internal Medicine and Geriatrics, The Southeast Director of Clinical Training, Bloomfield Hospital, Greater Lee Jacobs, MD Permanente Medical Group, Atlanta, Georgia Western Area Health Service; Conjoint Senior Lecturer in Stanley W Ashley, MD Psychiatry, University of New South Wales, Australia SENIOR EDITORS Chief Medical Officer, Brigham and Women’s Hospital; Tieraona Low Dog, MD Director of Education, Program in Integrative Medicine, Vincent Felitti, MD Frank Sawyer Professor of Surgery, Harvard Medical University of Arizona; Clinical Assistant Professor, Preventive Medicine, Book Reviews School; Attending Surgeon, Gastrointestinal Cancer Center, Dana Farber Cancer Institute; Chief, General Surgery, Har- Department of Medicine, Clinical Lecturer, University Gus Garmel, MD, FACEP, FAAEM vard Vanguard Medical Associates, Boston, Massachusetts of Arizona College of Pharmacy, Tucson Clinical Medicine Thomas Bodenheimer, MD Lewis Mehl-Madrona, MD, PhD Arthur Klatsky, MD Professor, Dept of Family and Community Medicine, Core Faculty, Clinical Psychology Program, Union Original Articles University of California, San Francisco Institute and University; Director of Education and Scott Rasgon, MD Brian Budenholzer, MD Training, Coyote Institute, Brattleboro, Vermont Corridor Consult Associate Clinical Professor in the Department of Family Michel M Murr, MD, FACS Medicine at the Brody School of Medicine at East Caro- Professor of Surgery, Director of Bariatric Surgery, University ASSOCIATE EDITORS lina University, Greenville, North Carolina of South Florida Health Science Center, Tampa, Florida Maher A Abbas, MD, FACS, FASCRS Alexander M Carson, RN, PhD Sylvestre Quevedo, MD Surgery Associate Dean of Research and Enterprise at the Institute Director of Health Policy, Healthy Humans; Adjunct Mikel Aickin, PhD of Health, Medical Sciences and Society at Glyndwr Faculty, Stanford Geriatrics Education Center, Stanford Biostatistics University in Wrexham, Wales, UK University, Palo Alto, California Ricky Chen, MD Rita Charon, MD, PhD Cheryl Ritenbaugh, PhD, MPH Medicine in Society Professor of Clinical Medicine; Founder and Director of the Professor and Associate Head for Research, Department Program in Narrative Medicine at the College of Physicians of Family and Community Medicine, The University of Carrie Davino-Ramaya, MD and Surgeons of , City Arizona, Tucson National Guidelines Dan Cherkin, PhD Ilan Rubinfeld, MD, MBA, FACS, FCCP Charles Elder, MD Senior Research Investigator, Group Health Cooperative, Director, Surgical Intensive Care; Associate Program Integrative Medicine and Affiliate Professor, Dept of Family Medicine and Director, General Surgery Residency; Henry Ford Hospital, Robert Hogan, MD School of Public Health—Health Services, University Detroit, Michigan; Assistant Professor of Surgery, Wayne Family Medicine, of Washington, Seattle State University School of Medicine, Detroit, Michigan Health Information Technology Marilyn Chow, RN, DNSc, FAAN Kate Scannell, MD Eric Macy, MD Vice President, Patient Care Services, Kaiser Foundation Internal Medicine and Rheumatology, and Director Research Health Plan; Associate Clinical Professor, Dept of of Ethics, The Permanente Medical Group, Oakland, Ruth Shaber, MD Community Health Systems, School of Nursing, California; Assistant Clinical Professor, Dept of Medicine, Care Management Institute University of California, San Francisco University of California, San Francisco Amit Shah, MD Robert R Cima, MD, FACS, FASCRS Marilyn Schlitz, PhD Public Health Associate Professor of Surgery, Division of Colon and Rec- Ambassador for Creative Projects and Global Affairs, Jon Stewart tal Surgery; Vice Chairman, Department of Surgery, Mayo and Senior Scientist, Institute of Noetic Sciences, Health Policy Clinic, Rochester, Minnesota Petaluma, California John Stull, MD, MPH Ellen Cosgrove, MD Audrey Shafer, MD Spirit of Medicine Dialogues Vice Dean, Academic Affairs, University of Washington Associate Professor, Dept of Anesthesia, Co-Director, School of Medicine, Seattle, Washington Biomedical Ethics & Medical Humanities Scholarly KM Tan, MD Concentration, Stanford University School of Medicine, Continuing Medical Education Quentin Eichbaum, MD, PhD, MPH, MFA, FCAP Assistant Dean for Program Development; Associate Palo Alto, California Calvin Weisberger, MD Director of Transfusion Medicine; Associate Professor Mark Snyder, MD Cognitive Clinical Medicine of Pathology; Associate Professor of Medical Education Specialist Leader, Electronic Medical Record Winston F Wong, MD, MS and Administration; Member, Vanderbilt Institute for Implementation and Physician ; Deloitte Community Benefit, Disparities Global Health; Vanderbilt University School of Medicine, Consulting, LLP, McLean, Virginia Improvement and Quality Initiatives Nashville, Tennessee Swee Yaw Tan, MBchB (Edin), MRCP (UK), ACSM, FAMS Linda Fahey, RN, NP, MSN Associate Consultant: Cardiology; Cardiac CT Angiography EDITORIAL OFFICE Regional Manager, Quality and Patient Safety, Patient Care and Cardiac Rehabilitation, National Heart Center, Singapore Merry Parker Services, Kaiser Permanente, Southern California, Pasadena William L Toffler, MD Managing Editor Adrianne Feldstein MD, MS Professor of Family Medicine; Director of Predoctoral Lynette Leisure Clinical Director Population Care Support, Kaiser Education, Oregon Health and Sciences University, Portland Creative Director Permanente Northwest; Investigator, Center for Health Paul Wallace, MD Research, Portland, Oregon Amy Eakin Senior Vice President and Director, Center for Business Manager Richard Frankel, PhD Comparative Effectiveness Research, The Lewin Group, Professor of Medicine and Psychiatry, University of Indiana Falls Church, Virginia Max McMillen, ELS School of Medicine, Indianapolis Editor & Staff Writer David Waters, MD Carol Havens, MD Ophthalmologist, Hawaii Permanente Medical Group; Christopher Dauterman, MBA Family Practice and Addiction Medicine, Director Associate Clinical Professor, Dept of Surgery, John A Burns Web Developer & Analyst of Clinical Education, The Permanente Medical Group, School of Medicine, University of Hawaii at Manoa Ian Kimmich Oakland, California Editorial Assistant Arthur Hayward, MD Internal Medicine and Geriatrics, CMI Clinical Lead for Elder Care; Assistant Clinical Professor, Division of General The Permanente Press Medicine, Dept of Internal Medicine, Oregon Health Tom Janisse, MD, MBA, Publisher Sciences University, Portland Pauline Fox, JD, Legal Counsel The Permanente Journal is published by The Permanente Press

2 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 EDITORIAL OFFICE The Permanente Journal, 500 NE Multnomah St, Suite 100, Portland, Oregon, 97232, USA; phone: 503-813-3286; fax: 503-813-2348; E-mail: [email protected].

THE PERMANENTE JOURNAL ONLINE The Permanente Journal is available online at www.thepermanentejournal.org.

INSTRUCTIONS FOR AUTHORS Instructions for Authors and Manuscript Submission Instructions are available along with a link to our manu- script submission center at www.thepermanentejournal. org/authors.html.

ARTWORK SUBMISSIONS Instructions for Artists and Artwork Submission Instruc- tions are available along with a link to our submission center at www.thepermanentejournal.org/authors/ artwork.html.

LETTERS TO THE EDITOR Send your comments to: The Permanente Journal, Letters to the Editor, 500 NE Multnomah St, Suite 100, Portland, Oregon, 97232, Fax: 503-813-2348, E-mail: [email protected].

PERMISSIONS AND REPRINTS To obtain permission to republish, reprint, or adapt mate- rial published in The Permanente Journal, please access and complete the Reprint Permission Form available at: www.thepermanentejournal.org/about-us/reprint-per- missions.html. If you have questions, please contact Max McMillen, ELS, by e-mail: [email protected].

ADVERTISING/ANNOUNCEMENTS For rates and information about advertising in The Permanente Journal, contact Amy Eakin, 500 NE Multnomah St, Suite 100, Portland, Oregon, 97232; phone: 503-813-2623; E-mail: [email protected].

SUBSCRIPTION RATES AND SERVICE Subscription rates are shown in the table below. Subscriptions are entered for the calendar year. Advance payment in US dollars is required. For information about subscriptions, missing issues, billing, subscription renewal, and back issues, E-mail: [email protected]. USA Other Countries Institutional $70.00 $85.00 Individual $40.00 $55.00

ADDRESS CHANGES Send all address changes to The Permanente Journal, 500 NE Multnomah St, Suite 100, Portland, Oregon, 97232; E-mail: [email protected]. Please include both old and new addresses.

The Permanente Journal (ISSN 1552-5767) is published quarterly by The Permanente Press. The Permanente Journal is available online (ISSN 1552-5775) at www.thepermanentejournal.org. Periodicals postage paid at Portland and at additional mailing offices. POSTMASTER, send all address changes to The Permanente Journal, 500 NE Multnomah Street, Suite 100, Portland, Oregon, 97232.

The Editorial Staff have disclosed that they have no personal, professional, or financial involvement in any of the manuscripts they might judge. Should a conflict arise in the future, the Editorial Staff have agreed to recuse themselves regarding any specific manuscripts. The Edito- rial Staff also will not use the information gained through working with manuscripts for private gain.

Copyright © 2012 The Permanente Journal leaflet—medical lit-art e-journal: http://xnet.kp.org/permanentejournal/leaflet

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 3 ORIGINAL RESEARCH & CONTRIBUTIONS Prostate Cancer Screening Trends in a Large, Integrated Health Care System

Lauren Wallner, PhD, MPH; Stanley Frencher, MD; Jin-Wen Hsu, PhD; Ronald Loo, MD; Joice Huang, PharmD, MBA; Perm J 2012 Summer;16(3):4-9 Michael Nichol, PhD; Steven Jacobsen, MD, PhD

early detection. Given the questionable benefit of PSA screen- Abstract ing regarding prostate cancer mortality4,5 and the discussion Background: As the debate over the effectiveness of prostate- surrounding the guidelines that inform its use,6 understanding specific antigen (PSA) screening for prostate cancer continues, the utilization of this test is imperative. it is increasingly important to understand how PSA screening Central to the discussion regarding early detection of prostate occurs in general-practice settings. cancer is the inability to distinguish between indolent prostate Methods: We conducted a retrospective cohort study within cancer that does not require treatment and aggressive prostate Kaiser Permanente Southern California, a large integrated health cancer that does require definitive treatment. The issues of care system. Men aged 35 years and older at baseline, in 1998, overdetection and overtreatment of early stage prostate cancer were eligible. The proportion of men who underwent PSA are further compounded by the questionable accuracy of serum screening was estimated and compared across groups defined by PSA measurements. Current estimates of the sensitivity and patient and physician characteristics. We also evaluated trends specificity of serum PSA testing for prostate cancer screening, in screening across time and serum PSA levels for all subgroups. based on the Prostate Cancer Prevention Trial, are 21% and Results: Of 2,061,047 men, 572,306 (28%) underwent PSA 88.6%, respectively.7-9 As a result, some men with false-positive screening from 1998 through 2007. Patterns of PSA screening results undergo invasive and unnecessary work-ups (eg, prostatic varied modestly by age, race, and physician. The lowest fre- ultrasound-guided biopsy). Furthermore, many men with indo- quencies of screening occurred among men younger than age lent prostate cancer receive invasive therapies that often result 45 years (19%) and men ages 85 years and older (13%). PSA in treatment-related complications such as erectile dysfunction screening was most common among white men (33.5%) and and incontinence.10-13 in men seen by physicians of the same race/ethnicity (32%), Despite the potential limitations of PSA testing, prostate cancer compared with men with physicians of disparate race/ethnicity mortality has decreased by 4% annually since its introduction.2 (26%, p < 0.001). PSA screening increased over time for all Controversy persists nonetheless, because the influence of PSA racial/ethnic groups and among men age 75 years and older testing on prostate cancer mortality is questionable.6,14-20 Two but decreased over time for men younger than age 75 years old. recently published randomized clinical trials, the Prostate, Lung, Conclusions: Nearly 1 in 4 eligible men underwent PSA Colon, and Ovarian Cancer Screening Trial and the European screening from 1998 through 2007, and screening varied only Randomized Study for Screening Prostate Cancer suggest that modestly by patient and physician characteristics. Estimates of PSA testing does not decrease prostate cancer mortality.4,5 In the frequency of PSA screening in general-practice settings can light of these findings, the American Urological Association and inform the debate and provide useful insight as to how changes the American Cancer Society have updated their prostate cancer in cancer screening guidelines would alter practice patterns in screening guidelines. The American Urological Association rec- an increasingly integrated health care environment. ommends PSA and DRE screening begin at age 40 years, given a life expectancy of at least another 10 years, and at a younger Introduction age for men with certain risk factors (eg, African-American men Despite its importance as the most commonly diagnosed or men with a family history of prostate cancer).21 The American noncutaneous cancer and the second leading cause of cancer Cancer Society takes a more conservative stance, recommend- death among men in the US, no definitive screening tool for ing that men with low risk begin discussing the pros and cons prostate cancer exists.1-3 Digital rectal examination (DRE) and of screening with their physician at age 50 years.22 Taking this measurement of serum prostate-specific antigen (PSA) levels are conservative stance further, the US Preventive Services Task imperfect but widely used methods of early detection. Current Force recently concluded that there is insufficient evidence to patterns of use of these screening tools have not been well recommend screening.23 Further complicating the issue, payers characterized, complicating our understanding of the effects of and governmental agencies have attempted to intervene either

Lauren Wallner, PhD, MPH, is a Postdoctoral Research Fellow in the Department of Research and Evaluation for Kaiser Permanente Southern California in Pasadena, CA. E-mail: [email protected]. Stanley Frencher, MD, is a Urologist at Yale University in New Haven, CT. E-mail: [email protected]. Jin-Wen Hsu, PhD, is a Biostatistician for the Department of Research and Evaluation for Kaiser Permanente Southern California in Pasadena, CA. E-mail: [email protected]. Ronald Loo, MD, is Regional Chief of Urology for the Southern California Permanente Medical Group and Chair of the Kaiser Permanente Interregional Urology Chiefs. E-mail: [email protected]. Joice Huang, PharmD, MBA, is the Manager of Health Economics for Amgen Global Health Economics in Thousand Oaks, CA. E-mail: joice. [email protected]. Michael Nichol, PhD, is a Professor and the Director of the School of Pharmacy—Pharmaceutical Economics and Policy at the University of Southern California in Los Angeles. E-mail: [email protected]. Steven Jacobsen, MD, PhD, is the Director of Research in the Department of Research and Evaluation for Kaiser Permanente Southern California in Pasadena, CA. E-mail: [email protected].

4 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Prostate Cancer Screening Trends in a Large, Integrated Health Care System

through reimbursement policy or by requiring insurers to provide study was to characterize prostate cancer screening practices coverage for PSA testing.24-26 This ambiguity has made it difficult in a large managed health care system that promulgates and for health care systems and physicians both in the US and in enforces practice guidelines across an integrated care network. Europe to develop consistent and appropriate approaches to This study was approved by the Kaiser Permanente Southern prostate cancer screening. California (KPSC) institutional review board. Despite the discussion surrounding the use of PSA to screen for prostate cancer, estimates of PSA screening rates in the US Methods are generally limited to surveys or institutional studies.17,24,25 Setting and Study Population Furthermore, these estimates are based on samples that are KPSC is a large managed care organization that spans from small and that often lack diversity, limiting their generalizability. Bakersfield, in the southern San Joaquin Valley, to San Diego, at National guidelines can have the greatest effect in large general the Mexican border. KPSC currently serves more than 3.4 million practices, but the implementation of PSA testing in this setting members with a racial and ethnic composition similar to that of remains poorly characterized.26-29 Therefore, the goal of this Southern California. Health care is mostly delivered in 1 of 14

Table 1. Characteristics of 2,061,047 men enrolled in KPSC 1998–2007, by PSA screening status PSA test No PSA n % n % Total pa Eligible patients 572,306 27.77 1,488,741 72.23 2,061,047 Age at Baselineb (years) <0.001 <45 131,510 18.55 577,284 81.45 708,794 45–54 202,931 30.39 464,884 69.61 667,815 55–64 136,113 36.39 237,977 63.61 374,090 65–74 73,772 36.95 125,856 63.05 199,628 75–84 25,531 28.02 65,578 71.98 91,109 ≥85 2557 13.03 17,073 86.97 19,630 Race/ethnicity <0.001 White 205,817 33.54 407,738 66.46 613,555 Black 42,926 30.35 98,500 69.65 141,426 Asian 29,486 29.98 68,868 70.02 98,354 Hispanic 102,971 28.49 258,481 71.51 361,452 Other 1811 31.11 4010 68.89 5821 Language preference <0.001 English 535,258 28.97 1,312,124 71.03 1,847,382 Spanish 22,256 22.71 75,735 77.29 97,991 Asian languages 2973 25.2 8826 74.80 11,799 Other non-English 1124 29.45 2692 70.55 3816 Physician characteristics Race/ethnicity <0.001 White 233,513 30.51 531,921 69.49 765,434 Black 25,339 28.56 63,371 71.44 88,710 Asian 208,013 30.29 478,680 69.71 686,693 Hispanic 64,174 28.06 164,531 71.94 228,705 Other 52 31.52 113 68.48 165 Specialty <0.001 Family medicine 257,404 25.46 753,422 75.54 1,010,826 Internal medicine 206,487 32.87 421,696 67.13 628,183 Urology 27,400 99.99 2 0.01 27,402 Other 79,164 52.77 70,854 47.23 150,018 Unknown 1851 0.32 242,767 16.31 244,618 Race concordance <0.001 Yes 148,967 32.38 311,027 67.62 459,994 No 423,339 26.44 1,177,714 73.56 1,601,053 a χ2 test of general association. b Baseline is when the study started, in 1998. KPSC = Kaiser Permanente Southern California; PSA = prostate-specific antigen.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 5 ORIGINAL RESEARCH & CONTRIBUTIONS Prostate Cancer Screening Trends in a Large, Integrated Health Care System

Medical Centers or affiliated outpatient facilities. A small frac- PSA test during the study period. Patterns of PSA testing differed tion of emergent and specialty care is received from contracted significantly by age (Table 1), with lower proportions observed physicians or through reimbursement claims. Regardless of the in the oldest and youngest groups (p < 0.001). Men aged 45–74 setting, detailed information on all diagnoses, procedures, test years, constituting the majority of men screened, had similar and biopsy results, pathology reports, treatments, and outcomes testing proportions, approximately 36%, when age groups were is tracked in electronic data systems. divided by deciles. Only 19% of men younger than age 45 years Men who were 1) active KPSC members for at least 1 day underwent PSA tests, while 28% of men aged 75–84 years were during the period 1998 to 2007; 2) at least age 35 years on tested. The oldest subgroup, men age 85 years and older, had January 1, 1998; 3) at least age 45 years upon termination of the lowest proportion of PSA testing: 13%. In addition, the overall membership or at the conclusion of the study period; and 4) proportion of PSA testing varied slightly across racial groups, without a prostate cancer diagnosis before baseline (ICD-9 with white men (33.5%) having the highest proportion of PSA code 185) were eligible for inclusion (N = 2,061,047). PSA data screening, followed by black men (30.4%), Asian men (30.0%), were captured from electronic medical records, including tests and Hispanic men (28.5%, p < 0.001, Table 1). performed from the date of first eligibility (based on age and The percentage of men who had a PSA test differed minimally membership) until termination of membership or prostate cancer across physician specialty and race/ethnicity. PSA testing was diagnosis (censoring). more common in men receiving care from family physicians than in patients cared for by internal medicine physicians (45.0% vs Measurements 36.1%, p < 0.001). Although patients seen by black and Hispanic Demographic information was obtained from electronic medical physicians had a screening rate of 28% (28.56% and 28.06%), records. Physician race/ethnicity (white, black, Asian, Hispanic, those treated by white and Asian physicians were screened at and other) and medical specialty, categorized as family medicine, a slightly higher rate (30.5% and 30.3%, respectively). Patients internal medicine, or other, were ascertained from electronic with physicians who shared the same race/ethnicity were more provider files. During the study period, serum PSA levels were likely to be screened (32.4%) than patients with physicians of a measured in ng/mL, using three immunoassays: AxSYM (Abbott different race (26.4%, p < 0.001, Table 1). Laboratories; Abbott Park, IL; 1998–2003), Immulite (Siemens Table 2 presents rates of PSA screening during 3 progressive Medical Solutions; Malveryn, PA; 2003–5), and Elecsys time periods beginning in 1998 and ending in 2007. During the … men age (Roche Diagnostics; Indianapolis, IN; 2005–7). All serum study period, PSA testing rose from 16.4% to 20.2%, to 26.0%. 85 years and PSA measurements from tests that were performed from Screening rates increased over time for black men (19.5%, older, had the beginning of study eligibility through the end of follow- 21.9%, and 26.3%), white men (21.1%, 24.5%, 29.7%), Hispanic the lowest up (or censoring) were extracted from electronic health men (14.1%, 18.4%, and 25.6%), and Asian men (17.4%, 22.0%, plan files. To confirm the consistency of the test results, we and 27.3%). PSA testing among the youngest men (<45 years) proportion randomly selected a 100-patient sample from tested men rose from 2.1% to 18.3% during the study period. Concurrently, of PSA for chart abstraction. In addition, we abstracted DRE re- screening for men older than age 55 years consistently decreased. testing: 13%. sults, physician interpretations, and indications for testing. Most Medical Centers had initial testing rates in the range of 13.7% through 20.8% and rates ranging from 22.7% through Statistical Analysis 30.2% in the most recent period (data not shown). Demographic characteristics of men who had PSA tests dur- The distribution of PSA levels over the entire study period is ing the study period were compared with those of men who did presented in Table 3. The median overall serum PSA level was not, using the χ2 test and two-sided t test where appropriate. The 1.01 ng/mL during the study period. The proportions of initial proportion of men who had a PSA test was then calculated as serum PSA levels greater than 4.0 ng/mL or exceeding the ASRR the number of men with at least one PSA test divided by the total were 9.7% and 8.5%, respectively. Elevated serum PSA levels number of men eligible for PSA screening (as defined by the age (>4 ng/mL or >ASRR) were more frequent among black men and membership inclusion criteria) during the study period. The (13.7% and 12.8%) than white men (12.6% and 10.0%), Asians proportion of men screened was then calculated by demographic (9.8% and 8.6%), and Hispanics (8.9% and 8.4%). Older men and physician characteristics. The proportions were similarly had substantially higher proportions of elevated PSA levels than estimated over specific time periods (1998–2000, 2001–2003, and younger men (p < 0.001). We compared men younger than age 2004–2007), with each proportion based on the first serum PSA 45 years to older subgroups defined by 10-year intervals extend- measurement within the time period. The distributions of men with ing to age 85 years. The proportion of PSA results above the serum PSA values above the corresponding age-specific reference ASRR increased considerably with age (range, 3.9%–30.9%).The ranges (ASRRs) or greater than or equal to 4 ng/mL were also proportion of men with results exceeding 4 ng/mL diminished determined. All analyses were performed using SAS version 9.1 from 16.1% in 1998 to 5.0% in 2007. Comparably, 12.7% and (SAS Institute, Cary, NC), with an α-level of 0.05. 5.5% of screened men had results exceeding the ASRR in 1998 and 2007, respectively (Table 3). Results We performed validation studies of the electronic medical In this cohort of men eligible for prostate cancer screening, records via chart abstracting for a sample of 100 patients who the duration of enrollment in the Health Plan from 1998 through had a PSA test ordered and completed. Of the 46 patients who 2007 was 6.46 years. Approximately 27% of men had at least one underwent a DRE, 3 (6.5%) had abnormal findings.

6 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Prostate Cancer Screening Trends in a Large, Integrated Health Care System

Table 2. Proportions of men who participated in PSA testing, among those who were eligible, over time by age and racea 1998–2000 2001–2003 2004–2007 n % n % n % Total 248,200 16.39 312,173 20.16 417,923 26.01 Age <45 9,167 2.09 38,416 7.32 116,452 18.25 45–54 82,415 16.82 116,579 23.84 150,874 30.29 55–64 81,093 26.52 90,884 31.04 95,386 35.22 65–74 54,236 30.40 50,711 31.10 44,466 31.31 75–84 19,271 23.24 14,599 21.3 10,289 19.71 ≥85 2018 10.92 984 9.24 456 8.26 Race/ethnicityb White 111,431 21.13 126,311 24.45 147,514 29.74 Black 24,569 19.51 26,687 21.86 30,914 26.3 Asian 12,940 17.40 63,039 21.97 23,641 27.25 Hispanic 34,967 14.07 51,910 18.35 81,549 25.59 Other 846 17.5 1062 16.33 1321 28.29 a Tests for trend across time for age and race all yielded p values <0.001. b Numbers for race/ethnicity do not add up to total because of missing values. PSA = prostate-specific antigen.

Table 3. Distribution of initial PSA levels and PSA levels exceeding the ASRR or greater than 4.0 ng/mL, among men with a history of PSA testing in KPSC, 1998–2007 PSA >ASRR ≥4.0 ng/mL n Median Interquartile range n % n % Total 561,194 1.01 0.60–1.94 47,902 8.54 54,375 9.69 Age at baseline <45 130,450 0.75 0.49–1.15 5021 3.85 2262 1.73 45–54 201,063 0.9 0.56–1.53 12,221 6.08 9486 4.72 55–64 133,606 1.28 1.28–2.46 14,800 11.08 16,802 12.58 65–74 70,438 1.89 0.94–3.82 10,325 14.66 16,689 23.69 75–84 23,406 2.53 1.11–5.55 4846 20.7 8159 34.86 ≥85 2231 3.21 1.26–8.25 689 30.88 977 43.79 Race/ethnicitya White 200,595 1.11 0.62–2.28 20,146 10.04 25,311 12.62 Black 41,263 1.09 0.61–2.30 5275 12.78 5653 13.7 Asian 29,117 1.06 0.64–1.98 2500 8.59 2845 9.77 Hispanic 101,517 0.96 0.57–1.83 8544 8.42 9061 8.93 Other 1780 0.98 0.59–1.89 143 8.03 177 9.94 Calendar year 1998 107,585 1.32 0.73–2.74 13,689 12.72 17,293 16.07 1999 74,207 1.16 0.67–2.24 7114 9.59 8619 11.61 2000 59,299 1.08 1.08–2.04 5100 8.6 5885 9.92 2001 52,747 1.05 1.05–1.95 4458 8.45 4985 9.45 2002 49,955 0.98 0.98–1.81 3935 7.88 4195 8.4 2003 44,729 0.85 0.85–1.60 3066 6.85 3193 7.14 2004 42,650 0.8 0.80–1.58 2983 6.99 2991 7.01 2005 41,935 0.84 0.84–1.54 2629 6.27 2560 6.1 2006 43,202 0.89 0.89–1.52 2472 5.72 2394 5.54 2007 44,885 0.88 0.88–1.46 2456 5.47 2260 5.04 a Numbers for race/ethnicity do not add up to total because of missing values. ASRR = age-specific reference ranges; KPSC = Kaiser Permanente Southern California; PSA = prostate-specific antigen.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 7 ORIGINAL RESEARCH & CONTRIBUTIONS Prostate Cancer Screening Trends in a Large, Integrated Health Care System

Discussion liefs, and patient preferences are also proffered.24,28,42-44 Insurance In this descriptive analysis of prostate cancer screening prac- status and having a personal physician have been found to be tices in a large managed care organization with a predilection associated with the likelihood of PSA testing.45 Patient-physician for protocol and guideline-driven clinical practice, we found that concordance has been suggested to increase PSA testing rates.46 nearly one in four eligible KPSC members underwent PSA testing These factors taken together suggest a disadvantage of certain from 1998 through 2007. PSA screening increased considerably populations (eg, those of low socioeconomic status and racial over time and varied modestly across certain populations. This and ethnic minorities) in accessing or negotiating available analysis of real-world practice could prove particularly useful in services for prostate cancer detection. assessing the cost-effectiveness of prostate cancer screening as Looking to modifiable factors, patient and physician percep- it is currently applied and the impact of emerging advances in tions of the efficacy of PSA testing may affect physician screening cancer detection, and in anticipating how changes in screening practices and adherence to guidelines.32 Certainly, differences in guidelines will alter practice patterns in an increasingly coordi- screening practices can result from variability in patient demo- nated health care environment. graphics and risk factors, however individual and organizational Few population-based studies have assessed how screening knowledge and preferences must also be considered. In fact, is implemented in general-practice settings.15,30,31 Without direct in our small validation sample of men who had undergone PSA observational data on screening patterns, researchers typically testing, only 46% also had a concomitant DRE, raising the ques- rely on billing and survey data or focus on physician or patient tion of patient preferences and physician perceptions regarding attitudes toward screening.24,26,28,32-34 Estimates using Medicare the relative utility of symptomatic evaluations of prostate cancer. data put rates of PSA testing at 34% and 25% for white and Although this study characterizes the use of PSA testing in black men over age 65 years, respectively.35 The Behavioral Risk a large, general-practice setting, there are potential limitations Factor Surveillance Survey, a comprehensive national assess- that should be considered. It was not possible to differentiate ment of cancer screening, found that 49.3% of men underwent between screening and diagnostic PSA testing or to identify the PSA testing within the previous 2 years of being questioned, underlying rationale for performing a physical exam. Nonethe- in 2004.25 Despite its methodologic rigor, the Behavioral Risk less, the chart review–based validation sample demonstrated Factor Surveillance Survey was limited by its self-report design that less than half of those who underwent PSA testing also and was subject to participation bias. had a DRE, and few of them had abnormal findings. Thus, Interestingly, differences in rates of PSA testing between blacks the continued role of physical examination in prostate cancer and whites, which have been inconsistently reported in other screening may be questionable. Although the managed care studies, were not apparent in our study.35,36 Race was a very organization setting was an advantage of this study because minor factor: the proportion of whites who were screened was it provided access to data necessary to characterize the evolu- 10% greater relative to blacks, Hispanics, and Asians, all of whom tion of screening practices, the generalizability of our study is had similar rates of testing. This study does, however, highlight limited. KPSC members are a fully insured population, albeit the need to better understand patterns of testing among minor- a diverse one with coordinated care services. Additionally, we ity racial/ethnic groups. Furthermore, some may argue that the were not able to capture data for PSA testing performed outside greater risk of prostate cancer among black men should lead to of KPSC. However, managed care organizations, which provide higher rather than similar rates of testing relative to other racial similar care as universal health care systems, encourage patients groups. However, this variability could reflect appropriate differ- to obtain services through general practitioners and within the ences in screening practices that are based on our understanding system. For KPSC, this means members seek fewer tests and of prostate cancer risk factors and competing recommendations. services outside the network. Finally, because the inclusion Age was a significant factor in this analysis, with the youngest criteria specified that men only had to be members for one day and oldest men less likely to undergo PSA testing. In a study of during the study period and reach age 45 before membership self-reported data from the National Health Interview Survey, termination, the denominator of men eligible for PSA screen- Ross et al showed that the rate of PSA testing for men aged 40 to ing in this study may be inflated. As a result, estimates of PSA 49 years was 16%, whereas men aged 50 to 69 years had a rate screening rates in this study may be conservative. of 49%.37 Variability in rates of PSA testing by age may have the most potential for interventions aimed at standardizing prostate Conclusions cancer screening practices. Surprisingly, the rate of PSA testing Among this large, managed care sample, approximately one for older men (>85 years) was 13% and increased over the most quarter of eligible men underwent PSA testing from 1998 through recent study period, representing an opportunity for patient and 2007. Lower rates of screening among racial minorities and physician education based on the multiple guidelines that argue younger men and persistent testing among men age 75 years against screening in this age group. and older may be opportunities for practice-based interventions Reasons for the variability in PSA testing rates among the aimed at optimizing PSA screening practices. v various subpopulations in the present study are not immediately evident. However, earlier literature suggests that educational at- Disclosure Statement tainment, marital status, poverty, usual source of medical care, This research was supported by research grants from Beckman family history of prostate cancer, and comorbidities may all play a Coulter, American College of Surgeons, and the Robert Wood Johnson role.38-41 Clinical uncertainty, conflicting guidelines, physician be- Foundation Clinical Scholars Program.

8 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Prostate Cancer Screening Trends in a Large, Integrated Health Care System

Acknowledgments 23. Chou R, Croswell JM, Dana T, et al. Screening for prostate cancer: a review The authors would like to thank May Lui, PhD; Julie Stern, MPH of the evidence for the US Preventive Services Task Force. Ann Intern Med for their contribution to this manuscript. 2011 Dec 6;155(11):762-71. 24. Voss JD, Schectman JM. Prostate cancer screening practices and beliefs. J Leslie E Parker, ELS, provided editorial assistance. Gen Intern Med 2001 Dec;16(12):831-7. 25. Behavioral risk factor surveillance system ... survey data. Atlanta, GA: References National Center for Chronic Disease Prevention and Health Promotion; 1. Grönberg H. Prostate cancer epidemiology. Lancet 2003 1984-1995. Mar;361(9360):859-64. 26. Moran WP, Cohen SJ, Preisser JS, Wofford JL, Shelton BJ, McClatchey MW. 2. Ries L, Melbert D, Krapch M, et al (eds). SEER Cancer Statistics Review Factors influencing use of the prostate-specific antigen screening test in [monograph on the Internet]. Bethesda MD: National Cancer Institute; primary care. Am J Manag Care 2000 Mar;6(3):315-24. updated 2007 [cited 2012 Jun 11]. Available from: http://seer.cancer.gov/ 27. McKnight JT, Tietze PH, Adcock BB, Maxwell AJ, Smith WO, Nagy MC. csr/1975_2004/. Screening for prostate cancer: a comparison of urologists and primary care 3. Sakr WA, Haas GP, Cassin BF, Pontes JE, Crissman JD. The frequency of car- physicians. South Med J 1996 Sep;89(9):885-8. cinoma and intraepithelial neoplasia of the prostate in young male patients. 28. Fowler FJ Jr, Bin L, Collins MM, et al. Prostate cancer screening and beliefs J Urol 1993 Aug;150(2 Pt 1):379-85. about treatment efficacy: a national survey of primary care physicians and 4. Andriole GL, Crawford ED, Grubb, RL 3rd, et al; PLCO Project Team. urologists. Am J Med 1998 Jun;104(6):526-32. Mortality results from a randomized prostate-cancer screening trial. N Engl 29. Ross LE, Coates RJ, Breen N, Uhler RJ, Potosky AL, Blackman D. Prostate- J Med 2009 Mar 26;360(13):1310-9. Erratum in: N Engl J Med 2009 Apr specific antigen test use reported in the 2000 National Health Interview 23;360(17):1797. Survey. Prev Med 2004 Jun;38(6):732-44. 5. Schröder FH, Hugosson J, Roobol MJ, et al; ERSPC Investigators. Screening 30. Ankerst DP, Miyamoto R, Nair PV, Pollock BH, Thompson IM, Parekh DJ. and prostate-cancer mortality in a randomized European study. N Engl J Yearly prostate specific antigen and digital rectal examination fluctuations in Med 2009 Mar 26;360(13):1320-8. a screened population. J Urol 2009 May;181(15):2071-5. 6. US Preventive Services Task Force. Screening for prostate cancer: US Preven- 31. Harris R, Lohr KN. Screening for prostate cancer: an update of the tive Services Task Force recommendation statement. Ann Intern Med 2008 evidence for the US Preventive Services Task Force. Ann Intern Med 2002 Aug 5;149(3):185-91. Dec 3;137(11):917-29. 7. Thompson IM, Ankerst DP, Chi C, et al. Assessing prostate cancer risk: 32. Chan EC, Barry MJ, Vernon SW, Ahn C. Brief report: physicians and their results from the Prostate Cancer Prevention Trial. J Natl Cancer Inst 2006 personal prostate cancer-screening practices with prostate-specific antigen. Apr 19;98(8):529-34. J Gen Intern Med 2006 Mar;21(3):257-9. 8. Thompson IM, Ankerst DP, Etzioni R, Wang T. It’s time to abandon an upper 33. Purvis Cooper C, Merritt TL, Ross LE, John LV, Jorgensen CM. To screen or limit of normal for prostate specific antigen: assessing the risk of prostate not to screen, when clinical guidelines disagree: primary care physicians’ use cancer. J Urol 2008 Oct;180(4):1219-22. of the PSA test. Prev Med 2004 Feb;38(2):182-91. 9. Thompson IM, Tangen CM, Ankerst DP, et al. The performance of prostate 34. Hoffman RM, Papenfuss MR, Buller DB, Moon TE. Attitudes and practices of specific antigen for predicting prostate cancer is maintained after a prior primary care physicians for prostate cancer screening. Am J Prev Med 1996 negative prostate biopsy. J Urol 2008 Aug;180(2):544-7. Jul-Aug;12(4):277-81. 10. Bacon CG, Giovannucci E, Testa M, Kawachi I. The impact of cancer treat- 35. Etzioni R, Berry KM, Legler JM, Shaw P. Prostate-specific antigen testing in ment on quality of life outcomes for patients with localized prostate cancer. black and white men: an analysis of Medicare claims from 1991-1998. Urol- J Urol 2001 Nov;166(5):1804-10. ogy 2002 Feb;59(2):251-5. 11. Barry MJ, Albertsen PC, Bagshaw MA, et al. Outcomes for men with clini- 36. Pan CC, Lee JS, Chan JL, Sandler HM, Underwood W, McLaughlin PW. The cally nonmetastatic prostate carcinoma managed with radical prostactectomy, association between presentation PSA and race in two sequential time external beam radiotherapy, or expectant management: a retrospective periods in prostate cancer patients seen at a university hospital and its com- analysis. Cancer 2001 Jun 14;91(12):2302-14. munity affiliates. Int J Radiat Oncol Biol Phys 2003 Dec 1;57(5):1292-6. 12. Davison BJ, So AI, Goldenberg SL. Quality of life, sexual function and deci- 37. Ross LE, Berkowitz Z, Ekwueme DU. Use of the prostate-specific antigen sional regret at 1 year after surgical treatment for localized prostate cancer. test among US men: findings from the 2005 National Health Interview BJU Int 2007 Oct;100(4):780-5. Survey. Cancer Epidemiol Biomarkers Prev 2008 Mar;17(3):636-44. 13. Penson D F, Litwin MS, Aaronson NK. Health related quality of life in men 38. Steenland K, Rodriguez C, Mondul A, Calle EE, Thun M. Prostate cancer in- with prostate cancer. J Urol 2003;169(5):1653-61. cidence and survival in relation to education (). Cancer Causes 14. Concato J, Wells CK, Horwitz RI, et al. The effectiveness of screening for Control 2004 Nov;15(9):939-45. prostate cancer: a nested case-control study. Arch Intern Med 2006 Jan 39. Bennett CL, Ferreira MR, Davis TC, et al. Relation between literacy, race, 9;166(1):38-43. and stage of presentation among low-income patients with prostate cancer. 15. Lin K, Lipsitz R, Miller T, Janakiraman S; US Preventive Services Task Force. J Clin Oncol 1998 Sep;16(9):3101-4. Benefits and harms of prostate-specific antigen screening for prostate 40. Roetzheim RG, Pal N, Tennant C, et al. Effects of health insurance cancer: an evidence update for the US Preventive Services Task Force. Ann and race on early detection of cancer. J Natl Cancer Inst 1999 Aug Intern Med 2008 Aug 5;149(3):192-9. 18;91(16):1409-15. 16. Merrill RM, Lyon JL. Explaining the difference in prostate cancer mortality 41. Schwartz KL, Crossley-May H, Vigneau FD, Brown K, Banerjee M. Race, rates between white and black men in the United States. Urology 2000 socioeconomic status and stage at diagnosis for five common malignancies. May;55(5):730-5. Cancer Causes Control 2003 Oct;14(8):761-6. 17. Sirovich BE, Schwartz LM, Woloshin S. Screening men for prostate and 42. Drummond FJ, Carsin AE, Sharp L, Comber H. Factors prompting PSA- colorectal cancer in the United States: does practice reflect the evidence? testing of asymptomatic men in a country with no guidelines: a national JAMA 2003 May 19;289(11):1414-20. survey of general practitioners. BMC Family Practice 2009 Jan 12;10:3. 18. Bergstralh EJ, Roberts RO, Farmer SA, Slezak JM, Lieber MM, Jacobsen SJ. 43. Demark-Wahnefried W, Strigo T, Catoe K, et al. Knowledge, beliefs, and Population-based case-control study of PSA and DRE screening on prostate prior screening behavior among blacks and whites reporting for prostate cancer mortality. Urology 2007 Nov;70(5):936-41. cancer screening. Urology 1995 Sep;46(3):346-51. 19. Agalliu I, Weiss NS, Lin DW, Stanford JL. Prostate cancer mortality in relation 44. Farrell MH, Murphy MA, Schneider CE. How underlying patient beliefs can to screening by prostate-specific antigen testing and digital rectal examina- affect physician-patient communication about prostate-specific antigen tion: a population-based study in middle-aged men. Cancer Causes Control testing. Eff Clin Pract 2002 May-Jun;5(3):120-9. 2007 Nov;18(9):931-7. 45. Carlos RC, Underwood W 3rd, Fendrick AM, Bernstein SJ. Behavioral asso- 20. Weinmann S, Richert-Boe KE, Van Den Eeden SK, et al. Screening by pros- ciations between prostate and colon cancer screening. J Am Coll Surg 2005 tate-specific antigen and digital rectal examination in relation to prostate Feb;200(2):216-23. cancer mortality: a case-control study. Epidemiology 2005 May;16(3):367- 46. LaVeist TA, Nuru-Jeter A, Jones KE. The association of doctor-patient 76. Erratum in: Epidemiology 2005 Jul;16(4):515. race concordance with health services utilization. J Public Health Policy 21. Greene KL, Albertsen PC, Babaian RJ, et al. Prostate specific antigen best 2003;24(3-4):312-23. practice statement: 2009 update. J Urol 2009 Nov;182(5):2232-41. 22. Smith RA, Cokkinides V, Eyre HJ. American Cancer Society guidelines for early detection of cancer, 2006. CA Cancer J Clin 2006 Jan-Feb;56(1):11-25.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 9 credits available for this article — see page 80.

ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

Waleed Lutfiyya, MD, FASCRS; David Parsons, MD, FASCRS; Juliann Breen, RN, CPHQ Perm J 2012 Summer;16(3):10-16

performing worse than expected. These Abstract reports are blinded, allowing participat- Background: Kaiser Sunnyside Medical Center has participated in the American Col- ing centers to compare their risk profiles lege of Surgeons National Surgical Quality Improvement Program (NSQIP) since January and outcomes with those of peer medical 2006. Data on general and colorectal surgical site infections (SSIs) demonstrated a need centers and with national averages. As a for improvement in SSI rates. result, NSQIP has become a catalyst for Objective: To evaluate application of a “care bundle” for patients undergoing colorec- the development of quality-improvement tal operations, with the goal of reducing overall SSI rates. programs designed to advance surgical Methods: We prospectively implemented multiple interventions, with retrospective care. Several studies have demonstrated analysis of data using the NSQIP database. The overall, superficial, deep, and organ/space that institutions can improve outcomes by SSI rates were compared before and after implementation of this colorectal care bundle. directing quality initiatives in areas where Results: Between January 2006 and December 2009, there were 430 colorectal cases they seem to be outliers.6 in our NSQIP report with 91 infections, an overall rate of 21.16%. Between January Schilling et al7 examined 36 different 2010, when the colorectal care bundle was implemented, and June 2011, there were procedure groups in the NSQIP and their 195 cases and 13 infections, a 6.67% overall rate. The absolute decrease of 14.49% is relative contribution to morbidity and significant (p < 0.0001). The rate of superficial SSI decreased from 15.12% to 3.59% (p mortality, and they found that 10 procedure < 0.0001). The rates for deep and organ/space SSI also showed a decrease; however, groups accounted for 62% of all complica- this was not statistically significant. The NSQIP observed-to-expected ratio for colorectal tions. Colectomy, which composed 9.9% SSI decreased from a range of 1.27 to 1.83 before implementation to 0.54 after imple- of all procedures, accounted for the great- mentation (fiscal year 2010). est share of these adverse events. At the Conclusions: Our institution was a NSQIP high outlier in general surgery SSIs and Kaiser Sunnyside Medical Center (KSMC) had a high proportion of these cases represented in colorectal cases. By instituting a in Clackamas, OR, colorectal procedures care bundle composed of core and adjunct strategies, we significantly decreased our composed 13.4% of all general surgery rate of colorectal SSIs. operations but made up 33% of all the SSIs. We hypothesized that colorectal Introduction Interest in improving surgical outcomes operations should be targeted to decrease In the US, an individual who undergoes led to the National Veterans Administra- SSIs in general surgery. The purpose of a major operation carries a 2% risk of tion Surgical Risk Study in the late 1980s,4 this study is to evaluate the application of surgical site infection (SSI). This rate is and from that, the National Surgical Qual- a bundle of care designed to reduce SSIs in substantially higher if the patient under- ity Improvement Program (NSQIP) was patients undergoing colorectal operations. goes colorectal surgery, with reported developed in the mid-1990s.5 The Ameri- The NSQIP database was used to evaluate rates of 5% to 30%.1,2 In a recent claims can College of Surgeons NSQIP collects the efficacy of the colorectal care bundle. study by Wick et al3 with more than data on 135 variables from more than 300 10,000 colorectal surgery patients, the different institutions around the country. Methods 30-day readmission rate was 11.4%, the NSQIP is the first nationally validated, Study Design 90-day readmission rate was 23.3%, and risk-adjusted, outcomes-based program to The study design was prospective the 30-day SSI rate was 18.8%. The mean measure and improve quality of surgical implementation of multiple interventions readmission length of stay was 8 days, care. It provides participating hospitals (Colorectal SSI Bundle) with retrospective and the median cost for an SSI readmis- risk-adjusted outcomes on a biannual basis analysis of data. KSMC has been par- sion was $12,835. These reports support and expresses them as an “observed-to- ticipating in NSQIP since January 2006. the concept that interventions that reduce expected” (O/E) ratio. An O/E ratio below Patients who underwent laparoscopic and SSIs are likely to reduce length of stay and 1 indicates that the hospital is performing open colorectal operations, whose data costs. SSIs represent an important target better than expected, and an O/E ratio were submitted to NSQIP from January for surgical quality. greater than 1 indicates that a hospital is 2006 through June 2011, were included

Waleed Lutifyya, MD, FASCRS, is a Colorectal Surgeon at the Kaiser Sunnyside Medical Center in Clackamas, OR. E-mail: [email protected] Parsons, MD, FASCRS, is a Colorectal Surgeon at the Kaiser Sunnyside Medical Center in Clackamas, OR. E-mail: [email protected]. Juliann Breen, RN, CPHQ, is a National Surgical Quality Program Nurse Reviewer at the Kaiser Sunnyside Medical Center in Clackamas, OR. E-mail: [email protected].

10 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

Table 1. Current Procedural Terminology codes1 Each case of an SSI was identified and reviewed every month with regard to Procedure Code elements of the bundle. If any part of the Colectomy 44140, 444141, 44143-44147, 41450, 44151, 44160, bundle was omitted, the SSI was declared 44204-44208, 44210-44213 preventable and a standardized report Proctectomy 44155-44158, 44211, 44212, 45110, 45111, 45113, 45114, regarding the specific case was provided 45116, 45119-45121, 45123, 45126, 45395, 45397 to the surgeon. This allowed for identifica- 1 Abraham M, Ahlman JT, Boudreau AJ, Connelly JL, Evans DD. Current procedural terminology 2011, Standard Edition. Chicago, IL: American Medical Association; 2010. tion of defects, and as they were identi- fied, actions were taken, which included individual feedback and broad education in the study. Patients were identified infections were used.9 The SSI rates were to groups of providers. Some interven- using Current Procedural Terminology calculated every month, a run chart was tions were addressed more globally. One codes (Table 1).8 Data were accrued into developed (Figure 1), and quarterly reports example was production of standardized the NSQIP database by trained dedicated were established. The SSI Quality Group’s tables for prophylactic antibiotics that nurses, who prospectively collected infor- monthly meetings allowed for tracking were posted in the operating rooms and mation from the preoperative, intraopera- data and provided for opportunities to included appropriate redosing intervals tive, and 30-day postoperative periods. increase awareness for recommended SSI and weight-based dosing guidelines. prevention strategies to all appropriate In addition, to decrease variation, the Development of the Colorectal care providers. electronic medical record was leveraged “Care Bundle” At KSMC, a 300-bed hospital in a large metropolitan city, approximately 250 to Table 2. Colorectal surgery “care bundle” 300 major elective and emergency colorec- Preoperative tal procedures are performed annually. In 1. Give patient the SSI patient education sheet a review of our site-specific NSQIP data, 2. Encourage smoking cessation 30 days before surgery general surgery SSI rates were statistically 3. Use preoperative antiseptic skin cleansing: with chlorhexidine wipes (night higher (high outlier) than at other NSQIP before and morning of surgery) participating institutions. Between 2006 4. Mechanically prepare the colon the day before surgery and 2009, we received 5 semiannual 5. Administer nonabsorbable oral antimicrobial agents (neomycin and reports indicating that SSIs were an area metronidazole) the night before surgery

of needs improvement. Inspired by our 6. Screen diabetic and nondiabetic patients using HbA1C levels NSQIP risk-adjusted reports, in 2009 a Holding program to eliminate SSIs at KSMC was 1. Check blood glucose levels; if >140 mg/dL, start insulin infusion developed, called “Pathway to Zero Surgi- 2. Remove hair with clippers in holding area (SCIP 6) cal Site Infections.” There was a sense of 3. Apply forced warm air gown to maintain normothermia urgency to drive down SSI rates. Colorectal Intraoperative surgery was identified as a subset of op- 1. Prescribe appropriate antibiotic (SCIP 1) erations with the potential for high impact 2. Dose prophylactic antimicrobial agent based on weight given their high rate of SSIs. On the basis 3. Administer prophylactic antimicrobial agents IV on time (SCIP 1) of published literature, consensus views 4. Redose prophylactic antibiotic based on duration of operation on feasibility, and recommendations from 5. Use standardized antiseptic agent for skin preparation: chlorhexidine individual surgeons, the colorectal “care gluconate (Chloraprep) bundle” was proposed (Table 2). Education 6. Use at least 80% fraction of inspired oxygen of general surgery attending physicians and 7. Ensure double gloving for all scrubbed surgical team members house staff regarding elements of the care 8. Maintain perioperative normothermia (SCIP 9) bundle was done before its implementa- 9. Aggressively control glucose in all patients; start insulin infusions for any blood tion and has become a part of orienta- glucose level >140 mg/dL 10. Perform pulse lavage of subcutaneous tissues for all open operations using tion for all new staff. The colorectal care 2 L of saline bundle was implemented in January 2010. Postoperative Compliance with the steps of the bundle 1. Maintain control of serum blood glucose levels in all patients; glycemic control was not prospectively tracked in all areas. team consulted 2. Protect primary-closure incisions with silver-impregnated (Acticoat) or Data Collection and Analysis polyhexamethylene biguanide (AMD) dressing for 5 days The SSI rates were compared before 3. Use high fraction of inspired oxygen (nonrebreather mask) for 4 hours and after implementation of the colorectal 4. Discontinue prophylactic antimicrobial agent within 24 hours of surgery (SCIP 3)

care bundle. Established NSQIP definitions HbA1C = hemoglobin A1C; IV = intravenously; SCIP = Surgical Care Improvement Project SSI reduction for superficial, deep, and organ/space measure; SSI = surgical site infection.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 11 ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

Figure 1. P Chart for Colorectal Surgery SSI Rates at KSMC, January 2006 to July 2011. CL = control limit (grey straight line at bottom); KSMC = Kaiser Sunnyside Medical Center; SSI = surgical site infection; UCL = upper control limit (thin lines at top).

to standardize the preoperative orders, there were 91 infections, a rate of 21.16%. compared with 14.44% at other NSQIP which include elements such as oral anti- In comparison, there were only 13 of 195 participating hospitals, a difference that biotics and mechanical bowel preparation. overall infections in the postintervention was statistically significant (p < 0.001), Also, SSI “dashboards” were created and study period (January 2010 to June 2011), and O/E ratios ranged from 1.27 to 1.83 posted in the surgeon and operating room a rate of 6.67% (Table 3). This absolute during this 4-year period. The rate of lounges for data transparency. decrease of 14.49% was highly significant superficial SSIs was 15.11% for KSMC Every month the total number of (p < 0.0001). The rate of superficial SSIs compared with 8.44% for other NSQIP documented SSIs was divided by the total decreased from 15.12% to 3.59% after the institutions, and the difference was sta- number of patients at risk in that period intervention, and this change was also tistically significant (p < 0.0001). The rate and was expressed as the overall case rate. highly significant (p < 0.0001). The rate of of deep and organ/space SSIs was not Rates for superficial, deep, and organ/ deep incision infections decreased from statistically different between KSMC and space SSIs were calculated in a similar 1.2% to 0.5% after the intervention but was other NSQIP hospitals. fashion. Case rates were compared by not statistically significant (p = 0.066). The After the intervention (2010 to 2011), the difference of proportions test for two rate of organ/space SSI decreased from there was a significant improvement in independent samples, before and after 4.9% to 2.6% after the intervention, which the O/E ratio in colorectal surgery SSIs implementation of the colorectal care was not statistically significant (p = 0.131). at KSMC. In 2010, the O/E ratio was 0.54 bundle (test for null hypothesis: H0: P1 − General surgery Class II cases had a sig- and was the lowest since the Medical P2; 95% confidence interval limits set atα nificant decrease in overall SSI rates from Center joined NSQIP. Compared with = 0.05). QI SPC Macros (1996-2011) version 11.75% before the intervention to 5.31% 2009, KSMC was no longer a high outlier 2016.01 (KnowWare International; Denver, after the intervention (p < 0.0001; Table 4). institution. The rate of overall colorectal CO) was used for statistical analysis. For fiscal years 2006 to 2009, KSMC SSIs at KSMC was 6.67% vs 12.58% for was a statistically high outlier institution other NSQIP hospitals, and this difference Results in general surgery SSIs in NSQIP risk- was statistically significant (p < 0.001). The Between 2006 and 2009, NSQIP cap- adjusted reports (Table 4); our O/E ratios rate for superficial SSIs at KSMC was 3.59% tured 430 of the targeted Current Pro- ranged from 1.40 to 1.68. The overall rate vs 7.19% for other NSQIP hospitals, a sig- cedural Terminology codes, and overall of colorectal SSIs at KSMC was 21.16% nificant difference (p < 0.007). The rates for deep and organ/space SSIs between Table 3. Colorectal surgery SSI rates at KSMC KSMC and other NSQIP hospitals were not significantly different (p < 0.084 and p < Preintervention Postintervention (2006-09) (2010-11) p value 0.210, respectively). Figure 2 shows the graphed rates of colorectal SSIs for both No. of patients at risk 430 195 KSMC and NSQIP. In 2010, we also noted SSI rate, no. (%) a corresponding drop in the O/E ratio for Overall 91 (21.16) 13 (6.67) < 0.0001 SSIs in general surgery to 0.70, placing Superficial 65 (15.12) 7 (3.59) < 0.0001 KSMC in the low outlier category 1 year Deep 5 (1.2) 1 (0.5) 0.066 after implementation of the colorectal care Organ/space 21 (4.9) 5 (2.6) 0.131 bundle (Table 4). KSMC = Kaiser Sunnyside Medical Center; SSI = surgical site infection.

12 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

Discussion Table 4. KSMC NSQIP risk-adjusted SSI rates by calendar year: The most frequent complication after colorectal and general surgery colorectal procedures is SSI,10 and few 2006 2007 2008 2009 2010 2011 studies have been able to isolate results in Colorectal surgery such a way as to standardize care around the issue. One of the most challenging Overall (%) 19.61 24.77 16.24 24.51 6.57 6.90 a aspects of quality improvement has been O/E 1.27 1.48 1.31 1.83 0.54 N/A the identification of best practice. The CI N/A 0.98-2.09 0.81-1.95 1.20-2.69 0.24-1.02 N/A literature demonstrating direct cause General surgery and effect on relationships for a specific Overall (%) 8.13 7.51 5.93 6.82 2.89 2.72 intervention is scarce, and there are few Class II (%) 11.17 11.53 9.82 14.33 5.49 4.97 Category IA recommendations from the O/E 1.56a 1.49a 1.40a 1.68a 0.70b N/A US Centers for Disease Control and Pre- CI 1.26-2.07 1.19-1.84 1.08-1.78 1.33-2.09 0.49-0.98 N/A vention (CDC). Recently, there has been a High outlier, needs improvement. some evidence that implementation of b Low outlier, exemplary. CI = 95% confidence interval; KSMC = Kaiser Sunnyside Medical Center; N/A = not available; NSQIP = National bundles of care elements can reduce the Surgical Quality Improvement Program; O/E = observed-to-expected ratio; SSI = surgical site infection. number of SSIs.11-13 The Surgical Care Improvement Proj- ect (SCIP), developed by the Centers in appropriate time, 4) discontinuation of study involving a larger sample of patients for Medicare and Medicaid Services and antibiotics within 24 hours, and 5) main- undergoing colorectal resection, the inves- implemented in 2006, was designed as tenance of perioperative normothermia. tigators observed a significant increase in an evidence-based initiative to be applied These are so-called core strategies, based compliance with SCIP process measures broadly across selected surgical services, on high levels of scientific evidence with over 2 consecutive 14-month study peri- with a stated goal of reducing morbidity high levels of feasibility. ods (p < 0.001).16 However, this greater and mortality rates 25% by the year 2010.14 However, the overall success of SCIP compliance did not result in a significant The SSI reduction measures from SCIP has been decidedly mixed. Hedrick et al15 reduction of SSIs in patients undergoing include: 1) removal of hair with clippers, reported a 10% reduction in colorectal colorectal procedures (p < 0.92).16 In a 2) use of appropriate antibiotics, 3) pro- infection rate (26% to 16%) following retrospective study using the Premier Inc phylactic antibiotics given intravenously implementation of the SCIP protocols. In a Perspective Database (Charlotte, NC), SCIP compliance data for 405,720 patients from 398 hospitals were analyzed using a hierarchical logistic model. No relation- ship was found between adherence to SCIP process measures and occurrence of SSIs. Indeed, the authors documented an increase in SSIs despite substantial improvement in SCIP compliance over a 2-year period.13 Furthermore, the authors suggested that even if compliance had been 100%, the stated SCIP goal of 25% reduction in SSI was unachievable. At KSMC, despite following SCIP infec- tion measures, NSQIP data continued to demonstrate high SSI rates. Like other researchers, we decided that the SCIP process has considerable shortcomings as a stand-alone intervention strategy.13,17 However, SCIP is the largest surgical pa- tient safety and surgical infection reduction initiative in US history18 and should be viewed as more of a baseline to which other adjunctive strategies are added to create a total risk-reduction package. Supplemental strategies that have some scientific evidence Figure 2. Rates of Colorectal SSI Between KSMC and NSQIP. with variable levels of feasibility are the adjunctive measures we added to complete KSMC = Kaiser Sunnyside Medical Center; NSQIP = National Surgical Quality Improvement Program; SSI = surgical site infection. the colorectal care bundle (listed below).

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 13 ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

These were deemed to be critical factors controlled trials (RCTs) evaluating omis- 350Χ the minimal inhibitory concentra- to achieve success in lowering the SSI rates. sion of mechanical bowel preparation.21-23 tion for staphylococcal skin isolates.35 The SCIP infection measures were Yet two other meta-analyses have found Because of potential benefits with few the base of the colorectal care bundle. that oral antibiotics in combination with side effects, the CDC and the Association Nurses and surgeons were trained in systemic antibiotics lead to the lowest SSI of Perioperative Registered Nurses have the importance of these processes. We rates.24,25 Whether the oral antibiotics are endorsed the concept of preadmission sought to ensure consistent delivery of as effective when a mechanical bowel skin cleansing.31,32,36 We use a dual skin the interventions. Razors were removed preparation is omitted is a question that cleansing done the night before surgery from the operating room. Our anesthesia remains unanswered. Thus, we decided to and then in the preoperative holding area. group “owned” (was responsible for) the proceed with use of a mechanical bowel Similarly, some studies have shown a normothermia measure and developed preparation in addition to oral antibiotics benefit from high fraction of inspired oxy- appropriate processes. Body as part of our bundle. Mechanical cleans- gen during and after surgery in reducing warming devices were used in ing is completed the morning before sur- SSIs. A meta-analysis in 2009 examined 5 We decided all cases. The electronic medi- gery, and oral antibiotics are administered RCTs evaluating the utility of perioperative to make cal record was modified so that the night before. hyperoxia to reduce the risk of SSIs and double only approved and appropriate There is ample evidence showing showed a statistically significant reduction gloving a antibiotics could be chosen for that perioperative hyperglycemia in from 12% to 9%, without an increase in requirement prophylaxis and were given in noncardiac surgery has been associated pulmonary complications.37 The PROXI for all the appropriate time frame be- with postoperative infections, increased trial (PeRioperative OXygen Fraction—Ef- scrubbed fore surgery. We expanded this length of stay, hospital complications, fect on SSI and Pulmonary Complications 26-28 personnel. SCIP measure so that it is best and mortality. Other studies have After Abdominal Surgery), published described as antibiotic manage- demonstrated that reductions in postop- after the 2009 meta-analysis, was an RCT ment. Appropriate weight-based erative complications can be achieved that failed to show the positive influence dosing and redosing based on duration of with postoperative normoglycemia.29,30 In of hyperoxia on SSIs; however, it also the case and the half-life of the antibiotic December 2006, KSMC developed a mul- showed no increased risk of complica- was addressed.19 Standard protocols were tidisciplinary glycemic work group that tions from it either.38 Again, hyperoxia developed for the anesthesia team reflect- led to the formation and implementation is a low-cost intervention with little risk, ing these factors as well. of the “glycemic control team” in 2009. and implementation makes sense. We The SCIP does not evaluate all the im- This team is made up of pharmacists routinely use 80% intraoperative oxygen portant surgical quality issues; however, it and internists trained in postoperative and a nonrebreather mask at 15 L for 4 does begin to give surgeons infrastructure glucose control. Since then, all patients hours postoperatively. on quality improvement.20 In completing undergoing inpatient surgery at KSMC We decided to make double gloving a the bundle, we added adjunctive mea- have had a blood glucose level checked requirement for all scrubbed personnel. In sures and believe they played a critical in the holding area and 1 hour into an a large observational cohort study in Swit- role in reducing the risk for SSIs. Although operation. For any patient with a level zerland, the authors showed that without these measures have some evidence greater than 140 mg/dL, insulin infusion surgical antimicrobial prophylaxis, glove to support their use, we recognize that is started. The glycemic control team then perforation increases the risk of SSI.39 some remain controversial and they have assumes management of the infusions, To our knowledge, that was the first varying levels of feasibility. Adjunctive ensures proper transitions off the intra- study to explore the correlation between strategies included the following: venous “drips,” and maintains a glucose SSI and glove leakage in a large series 1. mechanical bowel preparation with level between 80 and 180 mg/dL using of surgical procedures.39 Other studies oral antibiotics (neomycin and met- standard protocols.31 have demonstrated the increased risk of ronidazole) Despite the limited evidence for other glove perforation as well as the increase 2. aggressive glycemic control adjunctive measures in our bundle, we in bacterial density with duration of an 3. chlorhexidine wipes, used the night approached the bundle as an opportunity operation.40 Thus, double gloving may be before and the morning of surgery for thinking outside the box to find ways beneficial in lowering the risk of an SSI 4. high fraction of inspired oxygen to reduce the risk of an SSI. For example, and is a low-cost measure. (>80%) during and after surgery (15-L although preoperative chlorhexidine has Before skin closure, the standard prac- nonrebreather mask for 4 hours) been recommended for SSI prevention,32,33 tice has been to rinse the wound with a 5. double gloving for all scrubbed staff a meta-analysis of the RCTs investigating pour of irrigation. This produces less than 6. pulse lavage of subcutaneous tissues the use of preoperative chlorhexidine 1 psi of pressure and is of little clinical before skin closure with 2 L of normal cleansing in preventing SSIs failed to value. Lavage at greater than 10 psi can saline show a benefit.34 However, one study potentially protect wounds from gross 7. standardized antimicrobial dressing. published in 2008 showed that individuals contamination.41 In one retrospective re- The role of mechanical bowel prepa- who used a 2% chlorhexidine gluconate view of laparotomies lasting greater than ration has been questioned recently in polyester cloth to cleanse with had skin 4 hours, there was a significantly lower three meta-analyses of the randomized surface concentrations that approached SSI rate when the subcutaneous tissues

14 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

were lavaged with 2 L of normal saline.42 surgeons, nursing staff, infection control, will be required to assess the degree and This measure is inexpensive, is easy to SSI Quality Committee). Although our data sustainability of risk reduction delivered do, and may further reduce the risk of SSI, between 2006 and 2009 was not favor- using this colorectal care bundle. and thus we employ this measure in all able, it provided a catalyst for all involved open colorectal cases before skin closure. parties to improve SSIs, none more than Conclusion We also decided to standardize our the surgeons who “own” these outcomes. Participation in NSQIP can identify wound dressings. Currently, the CDC Despite not monitoring all elements of the areas of increased hospital morbidity Guidelines for Prevention of Surgical Site bundle, the components that were moni- compared with peer hospitals on a na- Infection recommend the use of sterile tored (SCIP) were posted in the surgical tional basis. Through NSQIP participation, dressing to protect closed incisions for lounges and physicians’ lounge for all to KSMC identified SSIs as an area of critical 24 to 48 hours postoperatively.32,33 How- see. We reviewed process measures and need for improvement. We implemented ever, there is no evidence to support this outcomes data on a monthly basis, and a bundle of care elements incorporating recommendation, and none exists with re- perceived gaps were addressed. The out- both core and supplemental strategies gard to dressing types. Topical silver is an comes were reviewed on a regular basis at and demonstrated a significant decrease effective bactericidal agent against a broad departmental meetings, which allowed for in overall colorectal SSIs. Despite being range of microorganisms that does not ap- further opportunity to educate and share only a single-center case study, the ef- pear to induce bacterial resistance. Some knowledge and to identify more barriers fectiveness of our bundle lends strength single-center reports have demonstrated a that had to be addressed. to the argument that a bundle of care lower risk of SSI with silver-impregnated Several limitations in this study exist. can act in a synergistic manner to reduce dressings (Acticoat; Smith&Nephew; Lon- The current study is not powerful enough SSIs. As hospitals, physicians, and nurses don, UK).43,44 Antimicrobial gauze coated and was not designed to isolate specific embrace the quality movement and adopt with polyhexamethylene biguanide strategies to eliminate SSIs. We felt an preventive strategies, large reductions in (AMD) has recently been introduced as urgency to improve our SSI rates; thus, complications will likely be seen. v another alternative with effective antimi- our goal was to eliminate SSI as quickly crobial activity. We implemented use of and efficiently as possible. Ultimately, this Disclosure Statement a standard silver-impregnated (Acticoat) was a “just do it” project. Compliance with The author(s) have no conflicts of interest dressing or AMD gauze and leave it in all elements of the colorectal care bundle to disclose. place for 5 days postoperatively. was incomplete, and therefore the associ- Despite our efforts to adhere to SCIP ation of interventions with SSI prevention Acknowledgment infection measures, KSMC continued to could not be assessed. Although some ex- Kathleen Louden, ELS, of Louden Health have high SSI rates compared with other perts argue that aggregated metrics would Communications provided editorial assistance. NSQIP institutions. Thus, we hypoth- be a better representation of the quality of esized that incorporating multiple strate- care provided to each patient and would gies into a single treatment bundle that allow for better outcome comparisons, we References 1. Tang R, Chen HH, Wang YL, et al. Risk fac- involves not only these core strategies but hypothesized that patients who instead re- tors for surgical site infection after elective also supplemental measures would have ceive multiple risk reduction interventions resection of the colon and rectum: a single- center prospective study of 2809 consecutive a synergistic effect on reduction of SSIs in will have a lower risk of SSI. All or none patients. Ann Surg 2001 Aug;234(2):181-9. colorectal operations. Since implementa- metrics would capture this effectively 2. Itani KM, Wilson SE, Awad SS, Jensen tion, we have seen a significant reduction and allow for better comparison of the EH, Finn TS, Abramson MA. Ertapenem versus cefotetan prophylaxis in elective in the total number of infections in colon actual complication rates; however, this colorectal surgery. N Engl J Med 2006 Dec and rectal operations. Furthermore, we is much more difficult to perform in our 21;355(25):2640-51. have seen significant reductions in overall current system. Surgical risk mitigation is 3. Wick EC, Shore AD, Hirose K, et al. Readmis- sion rates and cost following colorectal surgery. general surgery infections and in Class multifactorial, and our observed reduc- Dis Colon Rectum 2011 Dec;54(12):1475-9. II wounds, the class into which most tion in SSI rates may have been affected 4. Khuri SF. The NSQIP: a new frontier in surgery. colorectal operations fall. The O/E ratio by an improved culture in the operating Surgery 2005 Nov;138(5):837-43. for colorectal and general surgery SSIs fell room, more attention by leadership, or 5. Rowell KS, Turrentine FE, Hutter MM, Khuri SF, Henderson WG. Use of National Surgical Qual- as well after implementation. improved skill and knowledge of the ity Improvement Program data as a catalyst In establishing a bundle of care, we surgical team. for quality improvement. J Am Coll Surg 2007 were able to decrease variability for As a result of these factors, our reduc- Jun;204(6):1293-300. 6. Raval MV, Hamilton BH, Ingraham AM, Ko patients receiving a colorectal operation. tion in SSIs may yet prove to be a statisti- CY, Hall BL. The importance of assessing both One of the key features of this project was cal aberration; however, the sustained inpatient and outpatient surgical quality. Ann sharing our data openly. NSQIP provides reduction through 18 months and the Surg 2011 Mar;253(11);611-8. 7. Schilling PL, Dimick JB, Birkmeyer JD. Prioritiz- risk-adjusted data that allowed us to ex- decrease in the risk-adjusted NSQIP O/E ing quality improvement in general surgery. J amine how our Medical Center performs ratio is very promising. It remains to be Am Coll Surg 2008 Nov;207(5):698-704. with respect to our peers. This informa- seen if this 18-month reduction in SSI 8. Abraham M, Ahlman JT, Boudreau AJ, Connelly JL, Evans DD. Current procedural tion was distributed among all involved rate is sustainable long term or can be terminology 2011, Standard Edition. Chicago, stakeholders at KSMC (administrators, reduced even more. Further investigation IL: American Medical Association; 2010.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 15 ORIGINAL RESEARCH & CONTRIBUTIONS A Colorectal “Care Bundle” to Reduce Surgical Site Infections in Colorectal Surgeries: A Single-Center Experience

9. Chapter 4: ACS NSQIP Classic, essential, Control and Epidemiology; Infectious Diseases internal.or.kp.org/ksmc/documents/policies_pro- small-rural, targeted, and Florida variables Society of America; Medical Letter; Premier; cedures/clinical/inpatient_pharmacy/glycemic_ & definitions [monograph on the Internet]. Society for Healthcare Epidemiology of control_protocol.pdf [password protected]. Chicago, IL: American College of Surgeons; America; Society of Thoracic Surgeons; Surgical 32. Anderson DJ, Kaye KS, Classen D, et al. Strate- 2012 Jan 1 [cited 2012 Jul 18]. Available from: Infection Society. Antimicrobial prophylaxis gies to prevent surgical site infection in acute http://intranet.uchicago.edu/Portals/0/Vari- for surgery: an advisory statement from the care hospitals. Infect Control Hosp Epidemiol able_and_Definitions_July_2012.pdf. National Surgical Infection Prevention Project. 2008 Oct;29 Suppl 1:s51-61. 10. Wick EC, Vogel JD, Church JM, Remzi F, Fazio Clin Infect Dis 2004 Jun;38(12):1706-15. 33. Mangram AJ, Horan TC, Pearson ML, Silver LC, VW. Surgical site infections in a “high outlier” 20. Bratzler DW. The Surgical Infection Prevention Jarvis WR. Guideline for prevention of surgical institution: are colorectal surgeons to blame? and Surgical Care Improvement Projects: site infection, 1999. Hospital Infection Control Dis Colon Rectum 2009 Mar;52(3):374-9. promises and pitfalls. Am Surg 2006 Practices Advisory Committee. Infect Control 11. Bratzler DW, Hunt DR. The surgical infection Nov;72(11):1010-6,1021-30,1133-48. Hosp Epidemiol 1999 Apr;20(4):217-77. prevention and surgical care improvement proj- 21. Wille-Jørgensen P, Guenaga KF, Matos D. Pre- 34. Webster J, Osborne S. Preoperative bathing ects: national initiatives to improve outcomes operative mechanic bowel cleansing or not? or showering with skin antiseptics to prevent for patients having surgery. Clin Infect Dis an updated meta-analysis. Colorectal Dis 2005 surgical site infection. Cochrane Database Syst 2006 Aug 1;43(3):322-30. Jul;7(4):304-10. Rev 2007 Apr 18;CD004985. 12. Dellinger EP, Hausmann SM, Bratzler DW, et al. 22. Guenaga KK, Matos D, Wille-Jørgensen P. 35. Emiston CE Jr, Krepel JC, Seabrook GR, Hospitals collaborate to decrease surgical site Mechanical bowel preparation for elective Lewis BD, Brown KR, Towne JB. Preoperative infections. Am J Surg 2005 Jul;190(1):9-15. colorectal surgery. Cochrane Database Syst Rev shower revisited: can high topical antiseptic 13. Stulberg JJ, Delaney CP, Neuhauser DV, Aron 2009 Jan 21;(1);CD001544. Update in: Co- levels be achieved on the skin surface before DC, Fu P, Koroukian SM. Adherence to surgical chrane Database Syst Rev 2011;9:CD001544. surgical admission? J Am Coll Surg 2008 care improvement project measures and the 23. Slim K, Vicaut E, Launay-Savary MV, Contant C, Aug;207(2):233-9. association with postoperative infections. Chipponi J. Updated systemic review and meta- 36. Recommended Practices for Preoperative JAMA 2010 Jun 23;303(24):2479-85. analysis of randomized clinical trials on the role of Patient Skin Antisepsis. In: Conner R, Blanchard 14. Jones RS, Brown C, Opelka F. Surgeon mechanical bowel preparation before colorectal J, Burlingame B, et al (eds). AORN Periopera- compensation: “Pay for performance,” the surgery. Ann Surg 2009 Feb;249(2):203-9. tive Standards and Recommended Practices. American College of Surgeons National Surgi- 24. Lewis, RT. Oral versus systemic antibi- Denver, CO: Association of periOperative cal Quality Improvement Program, the Surgical otic prophylaxis in elective colon surgery: a Registered Nurses; 2012. p 445-64. Care Improvement Project and other programs. randomized study and meta-analysis send a 37. Qadan M, Akca O, Mahid SS, Hornung CA, Surgery 2005 Nov;138(5):829-36. message from the 1990s. Can J Surg 2002 Polk HC Jr. Perioperative supplemental oxygen 15. Hedrick TL, Heckman JA, Smith RL, Sawyer RG, Jun;45(3):173-80. therapy and surgical site infection: a meta- Friel CM, Foley EF. Efficacy of protocol imple- 25. Nelson RL, Glenny AM, Song F. Antimicrobial analysis of randomized controlled trials. Arch mentation on incidence of wound infection prophylaxis for colorectal surgery. Cochrane Surg 2009 Apr;144(4):359-66. in colorectal operations. J Am Coll Surg 2007 Database Syst Rev 2009 Jan 21;(1):CD001181. 38. Meyhoff CS, Wetterslev J, Jorgensen LN, et al; Sept;205(3):432-8. 26. Noordzij PG, Boersma E, Schreiner F, et al. PROXI Trial Group. Effect of high periopera- 16. Pastor C, Artinyan A, Varma MG, Kim E, Gibbs Increased preoperative glucose levels are asso- tive oxygen fraction on surgical site infection L,Garcia-Aguilar J. An increase in compliance ciated with perioperative mortality in patients and pulmonary complications after abdominal with the Surgical Care Improvement Project undergoing noncardiac, nonvascular surgery. surgery: the PROXI randomized clinical trial. measures does not prevent surgical site infec- Eur J Endocrinol 2007 Jan;156(1):137-42. JAMA 2009 Oct 14;302(14):1543-50. tions in colorectal surgery. Dis Colon Rectum 27. King JT Jr, Goulet JL, Perkal MF, Rosenthal RA. 39. Mistel H, Weber WP, Reck S, et al. Surgical 2010 Jan;53(1):24-30. Glycemic control and infections in patients glove perforation and the risk of surgical site 17. Hawn MT. Surgical care improvement: should with diabetes undergoing noncardiac surgery. infection. Arch Surg 2009 Jun;144(6):553-8. performance measures have performance mea- Ann Surg 2011 Jan;253(1):158-65. 40. Eklund AM, Ojajärvi J, Laitinen K, Valtonen M, sures? JAMA 2010 Jun 23;303(24):2527-8. 28. Frisch A, Chandra P, Smiley D, et al. Prevalence Werkkala KA. �����������������������������Glove puncture and postopera- 18. Potenza B, Diligencia M, Estigoy B, et al. and clinical outcome of hyperglycemia in the tive skin flora of hands in cardiac surgery. Ann Lessons learned from the institution of the perioperative period in noncardiac surgery. Thorac Surg 2002 Jul;74(1):149-53. Surgical Care Improvement Project at a Diabetes Care 2010 Aug;33(8):1783-8. 41. Luedtke-Hoffmann KA, Schafer DS. Pulsed teaching medical center. Am J Surg 2009 29. Umpierrez GE, Smiley D, Jacobs S, et al. Ran- lavage in wound cleansing. Phys Ther 2000 Dec;198(6):881-8. domized study of basal-bolus insulin therapy Mar;80(3):292-300. 19. Bratzler DW, Houck PM; Surgical Infection in the inpatient management of patients with 42. Nikfarjam M, Kimchi ET, Gusani NJ, et al. Prevention Guidelines Writers Workgroup; type 2 diabetes undergoing general surgery Reduction of surgical site infection by use American Academy of Orthopaedic Surgeons; (RABBIT 2 surgery). Diabetes Care 2011 of pulsatile lavage irrigation after prolonged American Association of Critical Care Nurses; Feb;34(2):256-61. intra-abdominal surgical procedures. Am J Surg American Association of Nurse Anesthetists; 30. Subramaniam B, Panzica PJ, Novack V, et al. 2009 Sep;198(3):381-6. American College of Surgeons; American Continuous perioperative insulin infusion de- 43. Childress BB, Berceli SA, Nelson PR, Lee WA, College of Osteopathic Surgeons; Ameri- creases major cardiovascular events in patients Ozaki CK. Impact of an absorbent silver-eluting can Geriatrics Society; American Society of undergoing vascular surgery: a prospec- dressing system on lower extremity revascular- Anesthesiologists; American Society of Colon tive, randomized trial. Anesthesiology 2009 ization wound complications. Ann Vasc Surg and Rectal Surgeons; American Society of May;110(5):970-7. 2007 Sep;21(5):598-602. Health-System Pharmacists; American Society 31. Inpatient pharmacy manual: glycemic control 44. Epstein NE. Do silver-impregnated dressings of PeriAnesthesia Nurses; Ascension Health; protocol [monograph on the Intranet]. Clacka- limit infections after lumbar laminectomy Association of periOperative Registered Nurses; mas, OR: Kaiser Sunnyside Medical Center; with instrumented fusion? Surg Neurol 2007 Association for Professionals in Infection 2008 [cited 2012 Jun 20]. Available from: http:// Nov;68(5):483-5.

Bacteriology Every operation in surgery is an experiment in bacteriology. — Berkeley George Andrew Moynihan, 1st Baron Moynihan, KCB, KCMG, 1865-1936, British abdominal surgeon

16 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 soul of the healer

“Kayaks on the Suwannee” photograph Nikon Coolpix AW 100; f3.9, ISO 180, 1/250 sec

Mark M Cohen, MD

This photograph was taken at Stephen Foster State Park in White Springs, FL, during a Road Scholar adult learning trip.

Dr Cohen is a retired Ophthalmologist from The Permanente Medical Group.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 17 credits available for this article — see page 80.

Original RESEARCH & CONTRIBUTIONS Reductions in Pain Medication Use Associated with Traditional Chinese Medicine for Chronic Pain

Charles Elder, MD, MPH, FACP; Cheryl Ritenbaugh, PhD, MPH; Mikel Aickin, PhD; Richard Hammerschlag, PhD; Perm J 2012 Summer;16(3):18-23 Samuel Dworkin, DDS, PhD; Scott Mist, PhD, MAcOM; Richard E Harris, PhD

Introduction Abstract Chronic pain management is a growing challenge for both primary Context: Participants in a randomized trial of traditional care physicians and specialists.1 Many of the pharmacologic agents Chinese medicine (TCM) for temporomandibular joint commonly used to manage chronic pain, such as nonsteroidal anti- dysfunction (TMD) had a linear decline in pain over 16 inflammatory drugs (NSAIDs), have the potential for serious toxicity, TCM visits. including gastrointestinal bleeding and renal failure.2 In addition, Objective: To investigate whether reductions in pain recent decades have seen a large increase in the use of long-acting among participants receiving TCM can be explained by opiates for ongoing pain management. Yet, the long-term efficacy of increased use of pain medications, or whether use of pain these agents is poorly documented, and there is significant potential medications also declined in this group. for addiction and abuse.3 Clearly, additional strategies are needed Design: One hundred sixty-eight participants with TMD for managing chronic pain, especially behavioral and low-risk in- were treated with TCM or enhanced self-care according to a terventions with the potential to reduce or even eliminate the need stepped-care design. Those for whom self-care failed were for ongoing pain medication. sequentially randomized to further self-care or TCM. This Some complementary and alternative medicine (CAM) interven- report includes 111 participants during their first 16 TCM tions may be efficacious in pain management, including chiro- visits. The initial 8 visits occurred more than once a week; practic manipulation4 and acupuncture.5 Although the supporting participants and practitioners determined the frequency of evidence for these modalities has evolved to provide a basis for subsequent visits. wider acceptance of CAM as an adjunct to standard interventions Outcome measures: Average pain (visual analog scale, for chronic pain, it may be that, given the magnitude of the pain range 0-10) and morphine and aspirin dose equivalents. management conundrum, such CAM modalities remain substantially Results: The sample was 87% women and the average age underutilized. Several deficiencies in the supporting evidence may was 44 ± 13 years. Average pain of narcotics users (n = 21) partially account for this phenomenon. First, although acupuncture improved by 2.73 units over 16 visits (p < 0.001). Overall has been studied principally as an isolated modality, in practice narcotics use trended downward until visit 11 (-3.27 doses/ it is frequently offered within the context of a broader traditional week, p = 0.156), and then trended upward until week 16 Chinese medicine (TCM) multimodal intervention.6 Failure to study (+4.29 doses/week, p = 0.264). Among those using narcotics, acupuncture within the appropriate systemic diagnostic context, use of nonsteroidal anti-inflammatory drugs (NSAIDs) de- and instead in isolation from other potentially synergistic modalities clined linearly over visits 1–16 (-1.94 doses/week, p = 0.002). such as herbs and Qigong,7,8 may have produced an inherent bias Among the top quartile of NSAID-only users (n = 22), av- in the literature. In addition, acupuncture has often been compared erage pain decreased linearly over 16 visits (-1.52 units, p = with sham interventions in mechanistic studies, making it difficult 0.036). Overall NSAID doses/week declined between visits to estimate what if any benefit might be rendered to a patient 1 and 7 (-9.95 doses/week, p < 0.001) and then remained receiving community-based, standard TCM care. Finally, although stable through 16 visits. NSAID use also declined among acupuncture has proven effective for many pain syndromes,9,10 the third quartile (n = 23) and remained low and stable the question of whether acupuncture leads to reduced use of pain among the lower half (sorted by total intake) of NSAID users. medications and other potentially toxic or invasive interventions Conclusions: Among the heaviest NSAID users, we has not been adequately studied. Indeed, changes in concomitant observed a short-term reduction in NSAID use that was medication use in an acupuncture trial may confound estimates of sustained as TCM visits became less frequent. There was the effectiveness of acupuncture. no indication that pain reduction during TCM treatment In our previously published phase II clinical trial of 160 women with was influenced by drug use. temporomandibular joint dysfunction (TMD),6 participants assigned

Charles Elder, MD, MPH, FACP, is the Physician Lead for Integrative Medicine at Kaiser Permanente Northwest, and Affiliate Investigator at the Center for Health Research in Portland, OR. E-mail: [email protected]. Cheryl Ritenbaugh, PhD, MPH, is a Professor in the Department of Family and Community Medicine and Anthropology at the University of Arizona in Tucson. E-mail: [email protected]. Mikel Aickin, PhD, is a Professor in the Department of Family and Community Medicine at the University of Arizona in Tucson. E-mail: [email protected]. Richard Hammerschlag, PhD, is a Dean Emeritus at the Oregon College of Oriental Medicine in Portland. E-mail: [email protected]. Samuel Dworkin, DDS, PhD, is an Emeritus Professor from the Department of Oral Medicine, School of Dentistry, and Department of Psychiatry and Behavioral Sciences, School of Medicine at the University of Washington in Seattle. E-mail: [email protected]. Scott Mist, PhD, MAcOM, is an Assistant Professor in the School of Nursing and School of Medicine at Oregon Health and Science University in Portland. E-mail: [email protected]. Richard E Harris, PhD, is an Assistant Professor in the Department of Anesthesiology and the Chronic Pain and Fatigue Research Center at the University of Michigan in Ann Arbor. E-mail: [email protected].

18 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 Original RESEARCH & CONTRIBUTIONS Reductions in Pain Medication Use Associated with Traditional Chinese Medicine for Chronic Pain

to TCM experienced significantly greater improvements in worst were then scheduled for the other eligibility evaluations (clinical and average facial pain compared with participants assigned to examination by a project dentist using the Research Diagnostic specialty care. Criteria for Temporomandibular Disorders; and TCM diagnostic The current data analyses come from an adequately powered interview by a TCM practitioner). randomized controlled trial of multimodal TCM care compared with a validated self-care intervention for participants with Participants TMD,11 using a stepped-care design.12 One hundred sixty-eight Inclusion criteria were age 18 to 70 years, worst facial pain TMD participants received TCM or enhanced self-care. Those ≥5, research diagnosis of TMD (based on the Research Diag- for whom self-care failed were sequentially randomized to ei- nostic Criteria for Temporomandibular Disorders),14 one of 10 ther further self-care or TCM. Previous analyses have shown a TCM diagnoses (that together account for 90% of cases in the linear decline in pain over 16 TCM visits for the 121 participants earlier study),6 and completion of TMD education. Exclusion allocated to TCM.13 criteria, evaluated at the consent interview or TMD clinical evaluation, included 1) serious pathology of the temporoman- Objective dibular joint; cancer or acute infection of the teeth, ears, eyes, We provide an observational analysis limited to those TMD nose, or throat, or ongoing orthodontic treatment; 2) serious participants who were treated with TCM. In particular, we in- psychiatric conditions; 3) surgical implants for treatment of TMD; vestigate whether the reductions in pain observed in the TCM 4) bleeding disorders; 5) other life-threatening conditions, eg group can be explained by increased use of pain medications, cancer, or uncontrolled severe hypertension; 6) severe joint/disk or whether use of pain medications also declined in this group. displacement; 7) full dentures; 8) medications for which study herbs are contraindicated; and 9) current pregnancy or plans to Methods become pregnant during active treatment, because pregnancy Study Design would require different treatment approaches that are outside In brief, participants who passed a phone screening were the scope of this study. recruited, consented, and began a 4-step eligibility process Study dentists attended training sessions by one of the investi- that included 1) a baseline questionnaire, 2) clinical examina- gators (S Dworkin) to improve inter-rater reliability (calibration) tion by a project dentist using the Research Diagnostic Cri- and were recalibrated midway through the study. TCM diagnos- teria for Temporomandibular Disorders,14 3) a standardized ticians and practitioners were calibrated for TCM diagnosis by diagnostic interview by the project TCM diagnostician,15 and another investigator (S Mist) and recalibrated midway through 4) a 2-hour educational session. Interested and eligible indi- the study.15 TCM diagnosticians, one per city, participated viduals were enrolled and began participation according to throughout the entire study. a stepped-care design. Those in whom self-care failed were All eligible subjects participated in a two-hour class on the sequentially randomized to either further self-care or TCM. nature of TMD, its patterns of progression and nonprogression, At each step, participant data were collected by telephone, precipitating and relieving factors, and suggestions to improve allocations were made to the TCM or self-care arm, and par- jaw relaxation. If still interested, participants advanced to on- ticipants were treated for another 8 weeks. This continued study status and the first on-study data collection. for 2 rounds of 8 weeks each; after the third data collection, all those who still had pain exceeding criterion were offered Interventions treatment with TCM. The TCM study protocol permitted up to The TCM intervention protocol, developed in a previous 20 TCM visits. The results of the short-term randomized study study6 to provide the best individualized TCM care within the (first 16 weeks) are reported elsewhere;13 here we provide confines of a research study, included acupuncture, moxi- an observational analysis of the average pain outcomes and bustion, Chinese herbs, massage (Tuina), and lifestyle and medication use reported at every TCM visit, pooled across nutrition counseling. Briefly, participants were permitted 20 timing of initiation of TCM visits. acupuncture visits and 20 weeks of herbs within a one-year period from the first treatment visit. The initial 8 visits oc- Study Setting and Recruitment curred more than once a week; participants and practitioners Participants were recruited from Tucson, AZ, and Portland, determined the frequency of subsequent visits. This was in- OR, and all assessments and interventions occurred at commu- tended to permit the treatment schedule to adjust to remissions nity practices. There was enthusiastic response to newspaper and flare-ups throughout the year. The practitioner’s initial advertisements, because of high local interest in complemen- diagnostic assessment of each participant included a detailed tary therapies and lack of insurance coverage for TMD, which history, radial pulse assessment, and tongue examination. is generally considered a dental condition. All phone contact, This diagnosis, which benefited from interpractitioner calibra- screening, data collection, and appointment scheduling were tion,15 guided lifestyle recommendations and the selection of managed through our call center in Tucson. The initial phone acupuncture points and herbal formulas. screening addressed eligibility with regard to TMD symptoms, Acupuncture treatments included a core set of points age, and willingness to comply with the visit schedule. Those congruent with those identified in the literature,16 supple- who were eligible were scheduled for a local consent visit, mented by diagnosis-specific points, not to exceed 20 points during which they completed the baseline questionnaire. They per visit. Herbal formulas were based on a core formula for

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 19 Original RESEARCH & CONTRIBUTIONS Reductions in Pain Medication Use Associated with Traditional Chinese Medicine for Chronic Pain

each diagnosis that could be modified according to individual morphine = 7.5 mg). The advantage of using data reported presentation. Practitioners documented the exact formulation at treatment visits is that they were collected much more prepared on each occasion, and participants were asked to frequently than the standard study-administered question- keep a log of their herbal ingestion. The herbal protocol was naires; they therefore permit us to directly relate changes in submitted to the US Food and Drug Administration (FDA) pain and medication use to treatment visits. We report the as an investigational new drug (IND) application. The FDA first 16 visits, because 70% of participants made 16 or more determined that the trial design was not targeted at a specific visits, but sample sizes decrease and point estimates become formula for a specific indication and approved the protocol increasingly unstable beyond 16 visits. exclusively for evaluation of safety. All herbs were granules (Mayway Corporation; Oakland, CA). They were GMP Statistical Methods … using data (Good Manufacturing Practices) certified. Samples were Trajectories of average pain, narcotics use, and NSAID use reported at retained from each lot for examination if problems were were analyzed over the first 16 TCM visits. Since the trends in treatment detected (none were). Per FDA requirements for inves- average pain were linear, ordinary linear regression of pain on visits … tigational new drug approval, participants underwent visit number was used, with random effects terms that took into laboratory tests for aspartate aminotransferase, alanine account within-participant correlation. In contrast, medication permits us to aminotransferase, total bilirubin, creatinine, blood use had a highly positively skewed distribution within each visit, directly relate urea nitrogen, INR (protime), complete blood count, so medication doses were analyzed using the same approach, changes in and urinalysis upon assignment to the TCM protocol. after log transformation (ln [1 + x]). Moreover, the trajectories pain and Laboratory tests were repeated twice, at 6 weeks and of medication use were either flat or included an early drop fol- medication at 1 year after beginning TCM treatment. Study Medical lowed by a rise. Consequently, the dose outcomes were analyzed use to Directors at each site reviewed laboratory test results for using a quadratic spline, with one quadratic to model the early treatment out-of-range values and provided guidance to the prin- fall and a second to model the later rise, and with the knot near visits. cipal investigator and (when needed) participants when the minimum drug dose. Fitted values were transformed back to any remediation or additional treatment was necessary. the original scale (x --> exp[x] - 1) for plotting and interpreta- tion. All reported average doses were geometric mean doses, Traditional Chinese Medicine computed on the transformed scale and then untransformed, and Practitioner Qualifications and Training changes over several visits were estimated from the fitted regres- The eight TCM practitioners who provided treatment (four sions, again untransformed back to the original scale. All analyses at each site) had a minimum of five years’ experience with were carried out with Stata (version 9; College Station, TX). acupuncture and herbs; the two diagnosing practitioners each had more than ten years’ experience and were faculty members at collaborating TCM schools. Practitioners met in person or by conference call every three months with S Mist to review the protocol and discuss any unusual circumstances that were encountered.15

Outcome Measures Self-reported data were collected via study-administered questionnaires at prescribed intervals as well as at every treatment visit. We report the pain and medication data col- lected at each treatment visit. Participants completed standard self-report forms before the start of every visit, and the forms were immediately available for review by the practitioners. Participants summarized their pain and medication use over the past week. They rated their average pain when having pain on a visual analog scale with a range of 0 to 10, and reported use of “any medications for your pain” (not further defined). Reported data for pain medication were the name of the medication, amount per pill, pills per day, and number of days used in the past week. In the data analysis phase, all drugs were converted to their generic formulas. For aspirin, NSAID, and acetaminophen, we used the amount per pill, pills per day, and days per week to determine medication dose/week, which we then converted to equivalent weekly doses of aspirin (one dose of aspirin = 325 mg). For nar- Figure 1. Consort diagram. cotic analgesics, we converted similar drug-specific intake NSAID = nonsteroidal anti-inflammatory drugs; TCM = traditional Chinese into equivalent weekly doses of oral morphine (one dose of medicine.

20 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 Original RESEARCH & CONTRIBUTIONS Reductions in Pain Medication Use Associated with Traditional Chinese Medicine for Chronic Pain

Study Approvals and Safety Results The human subjects protection programs at the University Descriptive Baseline Data of Arizona and the Oregon College of Oriental Medicine TCM treatment was provided to 121 participants; sufficient approved all procedures affecting participants. The Office data were available for 111 (Figure 1). We classified the 111 of Clinical and Regulatory Affairs at the National Center for participants as narcotics users (who reported use during TCM Complementary and Alternative Medicine approved the overall visits, n = 21) or NSAID users (who reported use of NSAID but protocol. The herbal protocol operated under investigational not narcotics during TCM visits, n = 90). Table 1 summarizes new drug status through the FDA. The study was run under overall and group-specific demographics and pain history at the guidance of the Data and Safety Monitoring Board, an baseline. The overall average and standard deviation of pain independent body that met twice yearly and reported its before the first TCM treatment visit was 5.2± 1.9. Throughout deliberations and findings to the study team, the National all the visits, participants reported using a wide variety of Center for Complementary and Alternative Medicine, and medications for their pain (Table 2). the institutional review boards. Protocols for reporting and adjudicating adverse events were approved by the institutional Participants Using Narcotics review boards and the Data and Safety Monitoring Board and For the 21 narcotics users, average pain at the first TCM visit were in place at both study sites. was 5.7 ± 2.0 (standard deviation [SD]). The fitted geometric mean narcotics dose at the first treatment visit was 6.0 morphine dose equivalents (dose equivalent = 7.5 mg morphine). The average pain scores and smoothed trajectories of mean narcotics use Table 1. Baseline demographics and pain history for across 16 TCM visits are shown in Figure 2. Average pain de- patients with TMD using narcotics or NSAID creased at the rate of -0.16 units per visit (p < 0.001), for a total Variable Total NSAID Narcotics decrease of -2.73 (48%) over 16 visits. Although there were no significant changes in narcotics use from visit 1 through visit 16, TMD 111 90 21 the best-fitting model shows narcotics use trending downward Sex until about visit 11 (the knot for the quadratic spline), for a Men 14 11 3 change of -3.27 (p = 0.156) morphine dose equivalents per week, Women 97 79 18 and then trending upward across visits 11 to 16 (+4.29, p = 0.264). Race Methadone use among the 3 methadone users remained static. Native American 3 1 2 NSAID use among these same participants declined linearly, Asian 2 2 0 with a decrease of 1.94 doses from 2.5 doses (fitted geometric Black 3 2 1 mean) over the 16 visits (p = 0.002, Figure 3). White 95 79 16 Unknown 8 6 2 Participants Using Nonsteroidal Ethnicity Anti-Inflammatory Drugs Only Hispanic/Latino 14 11 3 The distribution of NSAID use was also highly skewed, Not Hispanic/Latino 92 76 16 with many participants reporting little or no use at baseline. Unknown 5 3 2 Marital status Table 2. Medications reported by 111 Married/partnered 60 50 10 participants at baseline or during Divorced/widowed/ 21 14 7 traditional Chinese medicine treatment separated Medication n Never partnered 30 26 4 Ibuprofen 99 Income, $ Acetaminophen 59 <25,000 30 21 9 Aspirin 39 25,000–50,000 34 28 6 Naproxen 22 >50,000 42 36 6 Hydrocodone 23 Unknown 5 5 0 Lorazepam 8 Pain history Tramadol 5 Duration ± SD, year 13.3 ± 13 13.6 ± 13.2 11.8 ± 9.2 Flexeril 4 Continuous 54 42 12 Valium 4 Intermittent 56 47 9 Percocet 4 Saw physician for TMD Codeine 4 Yes 99 80 19 Celebrex 3 No 12 10 2 OxyContin 3 NSAID = nonsteroidal anti-inflammatory drugs; SD = standard deviation; TMD = temporomandibular joint disorder. Methadone 3

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 21 Original RESEARCH & CONTRIBUTIONS Reductions in Pain Medication Use Associated with Traditional Chinese Medicine for Chronic Pain

Figure 2. Changes in pain (upper line) and narcotics Figure 4. Changes in pain (upper line) and NSAID dosages (lower line) per week among participants dosages (lower line) per week among participants in ever using narcotics (n = 21). the highest quartile of NSAID use (n = 22). NSAID = nonsteroidal anti-inflammatory drugs.

Figure 3. Changes in pain (upper line) and NSAID Figure 5. Changes in pain (upper line) and NSAIDs dosages (lower line) per week among participants dosages (lower line) per week among participants in ever using narcotics (n = 21). the 3rd quartile of NSAID use (n = 23). NSAID = nonsteroidal anti-inflammatory drugs. NSAID = nonsteroidal anti-inflammatory drugs.

The fitted geometric mean weekly NSAID doses correspond- visit. Average NSAID use for those in the third quartile also ing to the midpoints of the top (fourth) quartile (n = 22) and decreased linearly and significantly (-1.60 doses/week, p = third quartile (n = 23) and the lower half of the distribution 0.001, Figure 5). NSAID use did not change among those in (n = 45) at the start of TCM treatment were 13.2, 2.4, and the lower half of the distribution. 1.3 doses, respectively (1 NSAID dose equivalent = 325 mg aspirin). Figure 4 shows the changes in pain and NSAID use Discussion for the 22 participants in the fourth quartile of NSAID use at Clinicians are under increasing pressure to curtail prescrip- start of treatment. Average pain before TCM was 5.9 ± 1.9 tions for chronic pain medications. In the case of opiates, (SD) and declined linearly across 16 visits (-1.52, p = 0.036 there are concerns about potential habituation and even di- [26%]). The minimum mean NSAID dose was taken to occur version of drugs. NSAIDs can often be contraindicated in the near visit 7 for the spline analysis. Drug use dropped by 9.95 presence of cardiovascular, renal, or gastrointestinal disease. doses/week (p < 0.001) across visits 1 to 7 and was stable for Withdrawal of pain medication, however, can be difficult when the remaining visits (overall increase of 0.49 doses/week from the patient is indeed suffering from chronic pain. Viable, ef- visit 7 through 16, p = 0.567). Significant declines in average fective alternatives, possibly including behavioral modalities pain over 16 visits were also seen in the third quartile (-2.08 and CAM therapies, are needed. Paradoxically, although health units, p < 0.001 [65%]) and in the lower half (-1.39 units, p < care organizations advocate for reduced pain medication use, 0.001 [34%]) of participants reporting NSAID use at the first a major obstacle to this transition can be the very structure of

22 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 Original RESEARCH & CONTRIBUTIONS Reductions in Pain Medication Use Associated with Traditional Chinese Medicine for Chronic Pain

the health benefits provided to patients. Chronic drug therapy Conclusion is commonly covered by benefits, whereas behavioral, CAM, Pain reported by TMD participants at TCM treatment visits or self-care interventions may have severe benefit limitations, declined linearly over the treatment period of 16 visits. Changes or not be covered at all. This pattern provides strong economic in reported pain medication use cannot explain the pain reduc- and cultural incentives for the clinician and patient to favor drug tion. Among narcotics users, pain declined while narcotic drug therapy. A frequently cited justification for this pattern of cov- use remained steady. Among heavier NSAID users, there was erage is lack of evidence supporting CAM interventions. Even clear evidence of a sharp decline in NSAID use followed by a when clinical evidence for efficacy exists (eg, acupuncture5,10 plateau, with NSAID use remaining substantially below baseline for back pain), it has been difficult to document concurrent for up to 16 weeks. v reductions in use of traditional medication or other clinical resources as economic justification. Disclosure In this paper we provide preliminary evidence that whole- Clinical Trials Identifier #: NCT00856167. This work was funded by system TCM care may be associated with reductions in pain a grant (U01-AT002570) from the National Center for Complementary medication use among participants with chronic pain and and Alternative Medicine, National Institutes of Health. The author(s) have no other conflicts of interest to disclose. TMD. Average pain decreased in association with TCM care for the overall study sample and for all subgroups. The improve- ments in pain cannot be attributed to increased medication Acknowledgment Leslie Parker, ELS, provided editorial assistance. use. Indeed, some medication use appeared to decrease over the course of treatment. Average narcotics use appeared to decrease during the early period of TCM treatment, when TCM References 1. Verhaak PF, Kerssens JJ, Dekker J, Sorbi MJ, Bensing JM. Prevalence of visits were most frequent. This decline was offset during the chronic benign pain disorder among adults: a review of the literature. Pain later period of treatment, when TCM visits grew less frequent. 1998 Sep;77(3):231-9. In contrast, the substantial early decline in NSAID use among 2. Beebe FA, Barkin RL, Barkin S. A clinical and pharmacologic review of skeletal muscle relaxants for musculoskeletal conditions. Am J Ther 2005 the heaviest users was essentially sustained through 16 visits. Mar-Apr;12(2):151-71. This finding is, potentially, of clinical significance in view of 3. Von Korff M, Kolodny A, Deyo RA, Chou R. Long-term opioid therapy the high toxicity profile of NSAID agents, and the costs as- reconsidered. Ann Intern Med 2011 Sep 6;155(5):325-8. 4. Cherkin DC, Deyo RA, Battié M, Street J, Barlow W. A comparison of sociated with managing gastrointestinal bleeding and other physical therapy, chiropractic manipulation, and provision of an educational complications. This study was not explicitly designed to evalu- booklet for the treatment of patients with low back pain. N Engl J Med ate reductions in medication usage. However, the data suggest 1998 Oct 8;339(15):1021-9. 5. Cherkin DC, Sherman KJ, Avins AL, et al. A randomized trial comparing that TCM may contribute to reductions in both pain and pain acupuncture, simulated acupuncture, and usual care for chronic low back medication use, at least during active treatment. The findings pain. Arch Intern Med 2009 May 11;169(9):858-66. also warrant further research on the integration of TCM into 6. Ritenbaugh C, Hammerschlag R, Calabrese C, et al. A pilot whole systems clinical trial of traditional Chinese medicine and naturopathic medicine for efforts to reduce pain medication. the treatment of temporomandibular disorders. J Altern Complement Med This study has multiple limitations, and the results are 2008 Jun;14(5):475-87. considered indicative rather than definitive. Although the data 7. Elder C, Aickin M, Bell IR, et al. Methodological challenges in whole systems research. J Altern Complement Med 2006 Nov;12(9):843-50. were collected within the context of a randomized controlled 8. Ritenbaugh C, Verhoef M, Fleishman S, Boon H, Leis A. Whole systems trial, the analyses presented here pertain only to TCM treat- research: a discipline for studying complementary and alternative medicine. ment, because the corresponding self-care comparison groups Altern Ther Health Med 2003 Jul-Aug;9(4):32-6. 9. Witt C, Brinkhaus B, Jena S, et al. Acupuncture in patients with osteoarthri- could not be followed up for 16 visits. This is because of the tis of the knee: a randomised trial. Lancet 2005 Jul 9-15;366(9480):136-43. nature of the treatment and the stepped-care design. It is thus 10. Witt CM, Jena S, Selim D, et al. Pragmatic randomized trial evaluating the possible that the patterns of change in medication use are at- clinical and economic effectiveness of acupuncture for chronic low back tributable to the Hawthorne effect (the participants’ response pain. Am J Epidemiol 2006 Sep 1;164(5):487-96. 11. Dworkin SF, Huggins KH, Wilson L, et al. A randomized clinical trial using to observation and assessment), to some other study-induced research diagnostic criteria for temporomandibular disorders-axis II to target effect, or to the natural course of TMD. Although our data clinic cases for a tailored self-care TMD treatment program. J Orofac Pain suggest that medication use decreased early in the course of 2002 Winter;16(1):48-63. 12. Huggins KH, Truelove E, Mancl L, LeResche L, Dworkin SF. RCT for TMD TCM treatment, data from the standardized questionnaire may utilizing case manager: long term clinical findings (Abstract). J Dent Res indicate whether these changes persisted beyond the conclu- 2004;83:133. sion of therapy. At this time there appear to be few cures for 13. Ritenbaugh C, Aickin M, Hammerschlag R, Mist S. The impact of US-based traditional Chinese medicine on TMD: a phase II whole systems trial (Ab- chronic pain, and long-term TCM maintenance therapy may stract). J Tradit Chin Med 2011;31:10-1. be an option for some patients. This issue is outside the scope 14. Dworkin SF, LeResche L. Research diagnostic criteria for temporomandibu- of the present study. lar disorders: review, criteria, examinations and specifications, critique. J Craniomandib Disord 1992 Fall;6(4):301-55. Finally, drug use data were based soley upon participant self- 15. Mist S, Ritenbaugh C, Aickin M. Effects of questionnaire-based report. These data were ambiguous for a few participants, and diagnosis and training on inter-rater reliability among practitioners their reliability is uncertain. For these reasons, results should be of traditional Chinese medicine. J Altern Complement Med 2009 Jul;15(7):703-9. interpreted with caution. Further research in more controlled 16. Rosted P. Practical recommendations for the use of acupuncture in the settings, such as within health maintenance organizations and treatment of temporomandibular disorders based on the outcome of integrative care clinics, is warranted. published controlled studies. Oral Dis 2001 Mar;7(2):109-15.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 23 soul of the healer

“The Healing Touch” acrylic on stretched canvas 24” x 36”

Mohamed Osman, MD

Dr Osman is formerly a physician from Group Health Permanente. He has relocated and owns an innovative private practice in North Carolina with an art gallery. He is a self-taught artist and credits his early life in Somalia, his medical education in Russia, and his medical experience in Kenya and Somalia as major influences on his art. Dr Osman has been published many times in The Permanente Journal and leaflet.

View Dr Osman’s gallery and art at: www.primarycareofstpauls.com.

24 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Ultrasound Measurements in Hypertrophic Pyloric Stenosis: Don’t Let the Numbers Fool You

Meena Said, MD; Donald B Shaul, MD; Michele Fujimoto, MD; Gary Radner, MD; Roman M Sydorak, MD; Harry Applebaum, MD Perm J 2012 Summer;16(3):25-27

Introduction pyloric ultrasound measurements record- Abstract The current generally accepted ultra- ed or who did not have pyloric stenosis Background: Ultrasound guidelines sound guidelines for hypertrophic pyloric at the time of operation were excluded. for hypertrophic pyloric stenosis (HPS) stenosis (HPS) arise from work done by Pearson correlation analysis was used have fixed minimum measurements and Rohrschneider et al.1 They found that to determine if there were statistically do not account for variation in patient pathologic limits were 3 mm for py- significant associations between the fol- weight or age. We sought to determine if loric muscle thickness, 15 mm for pyloric lowing combinations of factors: patient preoperative pyloric measurements cor- length, 11 mm for pyloric diameter, and 12 age and pyloric muscle thickness, patient related with weight and age in patients mL for pyloric volume. Additionally, they weight and pyloric muscle thickness, age with surgically proven HPS. concluded that muscle thickness was the and pyloric length, and weight and pyloric Methods: A retrospective analysis most discriminating factor. However, clini- length. A linear regression analysis also was conducted of 189 patients with cal experience has led us to question the was performed to analyze these relation- HPS treated at a single institution over applicability of these findings to infants ships. Pyloric length and muscle thickness a 5-year period (2005 to 2010). Pearson of varying ages and weights. were the dependent variables, and weight correlation and linear regression analyses We postulated that infants with smaller and age were the independent variables. were used to determine if there were sta- weights and/or ages who had HPS may tistically significant associations between have had pyloric measurements that were Results these combinations of factors: age and within the normal accepted range (ie, A total of 189 patients were identified pyloric muscle thickness, weight and measurements that by current standards who met the study criteria and underwent pyloric muscle thickness, age and pyloric are not diagnostic of HPS). This study was either laparoscopic or open pyloromy- length, and weight and pyloric length. aimed at determining whether preopera- otomy, during which the diagnosis of Results: Patients’ mean age was 4.6 tive pyloric measurements correlated with HPS was confirmed. Complete data were weeks (range, 1 to 17 weeks). Their mean weight and age in patients with surgically available for 165 patients, and thus this weight was 3.9 kg (range, 2.5 to 8.0 kg). proven HPS. was the number of patients included Mean pyloric muscle thickness was 0.42 in the statistical analysis. The patients’ cm (range, 0.18 to 0.86 cm), and mean Methods postgestational age ranged from 1 to 17 pyloric length was 1.89 cm (range, 0.8 to The study design was a retrospective weeks, with a mean age of 4.6 weeks. 2.8 cm). Pearson correlation coefficient chart review. The institutional review Patients’ weights ranged from 2.5 to 8.0 analysis showed a significant relationship board at our institution approved this kg, whereas the mean weight was 3.9 kg. between age and muscle thickness (r = study. Data from a single institution over Pyloric muscle length ranged from 0.8 to 0.35, p < 0.001) as well as weight and a five-year period (2005 to 2020) were 2.8 cm, and the mean pyloric length was muscle thickness (r = 0.24, p = 0.001). reviewed. Patients were identified by 1.89 cm. The mean pyloric wall thickness No significant relationship existed be- diagnosis codes indicating that they had was 0.42 cm, and the range was 0.18 to tween pyloric length and age or weight. HPS. Operative reports were reviewed to 0.86 cm. Linear regression analysis demonstrated verify the diagnosis. Demographic data In addition to the study patients, we similar results. on admission for surgery were collected encountered an additional 5 patients Conclusion: In patients with HPS, py- about individual patients. These included who underwent surgical exploration who loric muscle thickness was directly related sex, age (postgestational age in weeks), were not found to have HPS at surgery. to age and weight. Practitioners should be weight (in kilograms), and duration of Their weights ranged from 3.2 to 4.6 kg, aware that smaller and younger infants hospital admission. The muscle wall thick- and their ages ranged from 2 to 7 weeks. with a clinical diagnosis of HPS may still ness and length of the pyloric channel Two of these had numerical criteria be- truly have HPS even though the minimum (both in centimeters), as documented on low the standard cutoff for the ultrasonic diagnostic criterion for muscle thickness the ultrasound report, were obtained for diagnosis of HPS (muscle length, 0.8 and or length is not found on ultrasound. each patient. Patients who did not have 1.1 cm, respectively), and it is not clear

Meena Said, MD, is a Surgical Resident at the Los Angeles Medical Center in CA. E-mail: [email protected]. Donald B Shaul, MD, is the Regional Chief of Pediatric Surgery at the Los Angeles Medical Center in CA. E-mail: [email protected]. Michele Fujimoto, MD, is a Surgical Resident at the Los Angeles Medical Center in CA. E-mail: [email protected]. Gary Radner, MD, is a Pediatric Radiologist at the Los Angeles Medical Center in CA. E-mail: [email protected]. Roman M Sydorak, MD, is a Pediatric Surgeon at the Los Angeles Medical Center in CA. E-mail: [email protected]. Harry Applebaum, MD, is a Staff Surgeon at the University of California Los Angeles Medical Center in CA. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 25 ORIGINAL RESEARCH & CONTRIBUTIONS Ultrasound Measurements in Hypertrophic Pyloric Stenosis: Don’t Let the Numbers Fool You

why the decision was made to take them phied pylorus often looks obvious at first to surgery. Three patients had ultrasound glance: “the hot dog in a bun” appearance. measurements that were within the diag- Unfortunately, these criteria are not objec- nostic range (muscle length, 1.2 to 1.7 cm, tive, and therefore numerical criteria have and thickness, 0.3 to 0.7 cm). Thus, there become the standard for ultrasonographic were 3 false-positive ultrasound studies, diagnosis. We observed empirically that in all of which occurred in infants who were smaller, younger infants, the muscle thick- heavier and older than the others. ness and length criteria were occasionally Pearson correlation coefficient analysis not diagnostic even though the other showed that there was a statistically signifi- criteria were strongly suggestive of HPS. cant relationship between pyloric muscle Thus, we had the idea that sometimes the r = 0.24; p = 0.001 wall thickness and patient age (r = 0.35, numbers can be misleading. In this series p < 0.001) as well as wall thickness and pa- of more than 180 patients, there were 9 tient weight (r = 0.24, p = 0.001), as shown infants with surgically proven HPS with a in Figure 1. The same analysis proved muscle thickness at or below 3 mm and that there was no significant relationship 15 infants with a pyloric channel length at between pyloric length and patient age or below 15 mm. Thus, 5% to 8% of pa- (r = 0.07, p = 0.35) or weight (r = 0.09, p = tients with HPS had a numerically normal 0.27), which is demonstrated in Figure 2. study. The question posed was whether a Linear regression analysis demonstrated weight- or age-based criterion would be that weight and age were predictors for more accurate. increasing pyloric thickness (weight: We attempted to develop a rigid crite- p < 0.0001; 95% confidence interval [CI], rion that would allow a diagnosis of HPS 0.02 to 0.07; age: p < 0.0001; 95% CI, on the basis of age, weight, muscle thick- r = 0.35; p < 0.001 0.01 to 0.03), as shown in Table 1. Linear ness, and/or muscle length. The data in Figure 1. Pearson correlation graphs comparing patient regression confirmed that there was no this large study clearly demonstrated that weight (top) and age (bottom) vs pyloric muscle wall relationship between pyloric length and measurements of the pyloric length were thickness. age or weight (p = 0.61; 95% CI, −0.02 quite varied and had no relationship to the to +0.03; and p = 0.74; 95% CI, −0.07 to age or weight of the infant. We believe +0.10, respectively; Table 1). that the primary reason for this is that when the antral muscle proximal to the Discussion pylorus is in spasm, it looks very similar When ultrasonographic images of the to the pylorus, and therefore, measure- pylorus were initially being generated, it ments made by technologists may or may was clear that some standard criteria were not include a portion of the antrum. This required to allow the widespread adop- creates variability. We did find that muscle tion of this modality as a diagnostic tool. thickness showed a strong correlation to One of the original reports by Strauss et both the age and weight of the infant, but al2 reported 20 cases. Fifteen patients had we could not find a foolproof method to a pyloric diameter greater than 1.5 cm and avoid missing the diagnosis in smaller and all of these had pyloric stenosis, whereas younger infants. In these infants, other r = 0.09; p = 0.27 the 5 infants with a diameter of 1.5 cm or criteria must be considered. less did not have pyloric stenosis.2 It soon Other authors have performed similar became clear that other measurements studies with varying results. In a study of were possible and potentially useful, 59 infants with pyloric stenosis, premature although muscle thickness was found to infants had a lower mean pyloric length, be the most discriminating and accurate although it was not significantly lower, criterion to make the diagnosis.1 Blumha- and the authors concluded that length gen et al3 noted significant overlap among did not correlate with prematurity.4 In a the 319 infants they studied who did and review of 91 infants, Haider et al5 found did not have HPS. that the pyloric length was significantly There are many ultrasonographic greater in full-term infants than in preterm findings that suggest HPS. These include infants. They were unable to demonstrate

r = 0.07; p = 0.35 failure of the stomach to empty and failure a correlation between pyloric muscle of the pylorus to open as well as an en- thickness and prematurity. Figure 2. Pearson correlation graphs comparing patient larged pyloric muscle. To the experienced The results from larger series mainly con- weight (top) and age (bottom) vs pyloric length. radiologist and surgeon, the hypertro- cur with the current study. Leaphart et al,6

26 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Ultrasound Measurements in Hypertrophic Pyloric Stenosis: Don’t Let the Numbers Fool You

Table 1. Linear regression analysis of relationships between patient age We support the currently accepted ultra- and weight, and pyloric channel length and wall thickness sonographic diagnostic criterion of a pyloric muscle thickness of 3 mm or more. Reli- Age (weeks) Weight (kg) ance on a length of 12 mm or more can be Dependent Odds ratio Odds ratio misleading. When smaller neonates have a variable (95% CI) p value (95% CI) p value clinical picture consistent with HPS, a lower Muscle wall 0.02 <0.0001 0.04 <0.0001 threshold for ultrasonographic diagnosis of thickness (0.01-0.03) (0.02-0.07) HPS should be used. This will avoid delays Pyloric channel 0.01 0.61 0.01 0.74 in diagnosis and additional unnecessary length (−0.02-+0.03) (−0.07-+0.10) studies. For primary care clinicians won- CI = confidence interval. dering whether a vomiting infant has HPS, consideration of numerous signs may be in their analysis of ultrasound studies from of their weight. Future studies should be required to avoid missing the diagnosis. v 60 infants younger than age 21 days with directed along these lines in order to de- proven pyloric stenosis, concluded that velop diagnostic criteria that are accurate Disclosure Statement muscle thickness was significantly lower in various sizes and ages of infants. The The author(s) have no conflicts of interest in younger vs older infants. However, real difficulty in developing standards to disclose. their findings diverged from the current for “normal” infants who are vomiting study in that they also found a relationship and may have HPS is in measuring the Acknowledgment between muscle length and patient age. thickness and length of the normal pyloric Kathleen Louden, ELS, of Louden Health Communications provided editorial assistance. In concordance with our initial hypoth- muscle. The relaxed pylorus is difficult to esis, their results illustrated that the mean distinguish from the adjacent antrum, and References ultrasound measurements for younger the ultrasonographer has difficulty taking 1. Rohrschneider WK, Mittnacht H, Darge K, newborns with pyloric stenosis fell within the measurement accurately. Tröger J. Pyloric muscle in asymptomatic currently defined normal or borderline In conclusion, this study found that infants: sonographic evaluation and discrimi- nation from idiopathic hypertrophic pyloric ranges. Another relatively large study that among HPS patients, pyloric muscle stenosis. Pediatr Radiol 1998 Jun;28(6):429-34. had results similar to the present study thickness was directly related to age and 2. Strauss S, Itzchak Y, Manor A, Heyman was that of Houben et al.7 In their evalu- weight. There was no similar relation- Z, Graif M. Sonography of hypertrophic pyloric stenosis. AJR Am J Roentgenol 1981 ation of ultrasound findings of 100 pyloric ship for pyloric length. The collective Jun;136(6):1057-8. stenosis infants, they stratified the size of experience of the authors of this study 3. Blumhagen JD, Maclin L, Krauter D, Rosen- the pylorus into 3 groups—short, moder- includes more than 1000 cases of pyloric baum DM, Weinberger E. Sonographic diagnosis of hypertrophic pyloric stenosis, AJR ate, and large—and compared these sizes stenosis. What we have seen is that HPS Am J Roentgenol 1988 Jun;150(6):1367-70. with age. They proved that there was a in smaller and younger infants can be a 4. Forster N, Haddad RL, Choroomi S, Dilley AV, statistically significant increase in the size disease in evolution, and that repeating Pereira J. Use of ultrasound in 187 infants with suspected infantile hypertrophic pyloric steno- of the pylorus with advancing age. an ultrasound a few days later can be sis. Australas Radiol 2007 Dec;51(6):560-3 One of the weaknesses of this study is useful as the muscle thickens. In some 5. Haider N, Spicer R, Grier R. Ultrasound diag- the failure to report on the pyloric mea- infants, criteria other than muscle thick- nosis of infantile hypertrophic pyloric stenosis: determinants of pyloric length and effect of surements of several infants of varying ness can be used to make the diagnosis. prematurity. Clin Radiol 2002 Feb;57(2):136-9. ages and sizes who did not have proven For example, in a vomiting infant, elec- 6. Leaphart CL, Borland K, Kane TD, Hackam HPS. This would have allowed for the trolyte determinations, which reveal an DJ. Hypertrophic pyloric stenosis in newborns younger than 21 days; remodeling the path development of a more accurate accept- alkalosis, are strongly suggestive of HPS. of surgical intervention. J Pediatr Surg 2008 able range that evaluates pyloric muscle Unfortunately, concurrent dehydration Jun;43(6):998-1001. thickness and quotes both normal and with lactate production may neutralize the 7. Houben CH, Rudolf O, Misra D. Diagnosing hypertrophic pyloric stenosis: does size matter? diagnostic values for infants on the basis alkalosis, limiting its usefulness. Eur J Pediatr Surg 1999 Dec;9(6):373-5.

Without Cause Infants do not cry without some legitimate cause. ­­— Ferrarius, 12th century Italian alchemist

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 27 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

Karen Tallman, PhD; Ruth Greenwald, MS, MA; Alice Reidenouer, SM; Laurel Pantel Perm J 2012 Summer;16(3):28-35

a longitudinal qualitative investigation of the experiences of Abstract 12 patients and their families with IPC teams and their sub- Background and Objectives: Inpatient palliative care (IPC) sequent experiences to inform quality-improvement efforts. consults are associated with improved quality of care and less After the findings are described, a narrative describing typical intensive utilization. However, little is known about how the family experiences is provided. needs of patients with advanced illness and the needs of their families and caregivers evolve or how effectively those needs Findings From the Literature: are addressed. The objectives of this study were 1) to summarize Needs of Patients, Families, and Caregivers findings in the literature about the needs of patients with advanced A broad survey of the literature was conducted to identify illness and the needs of their families and caregivers; 2) to identify empirical studies and review articles that describe patient, family, the primary needs of patients, families, and caregivers across the and caregiver needs at end of life and how well those needs continuum of care from their vantage point; and 3) to learn how were typically met. IPC teams affect the care experience. Methods: We used a longitudinal, video-ethnographic Information approach to observe and to interview 12 patients and their Patients with advanced illness and their families sought families before, during, and after an IPC consult at 3 urban clear, consistent information about the patient’s condition and medical centers. Additional interviews took place up to 12 treatment options, but they frequently received insufficient months after discharge. information.1-4 In one study, more than 50% of 276 patients Results: Five patient/family/caregiver needs were important to with lung cancer reported that their physicians did not com- all family units. IPC teams responded effectively to a variety of municate about practical needs, choice of surrogate decision needs that were not met in the hospital, but some postdischarge maker, spiritual concerns, emotional symptoms, life-support needs, beyond the scope of IPC or health care coverage, were preferences, living wills, and/or hospice.5 This applied even not completely met. to older patients with advanced disease. Conclusion: Findings built upon the needs identified in The importance of understanding patient care preferences the literature. The longitudinal approach highlighted changes becomes apparent during a crisis. In a study of 179 patients in needs of patients, families, and caregivers in response to recommended for withdrawal of life support, only 3.4% of emerging medical and nonmedical developments, from their those in intensive care units had the capacity to make known perspective. Areas for improvement include clear, integrated their wishes for care (physicians’ perspective),6 which leaves communications in the hospital and coordinated, comprehensive difficult decision making to distressed family members if there postdischarge support for patients not under hospice care and are no documented care directives.7 for their caregivers. The means of conveying information is pivotal. The impor- tance of avoiding the perception of abandonment has been Introduction emphasized.8-10 A survey of bereaved family members found Fueled by shifting demographics and increasing public that high levels of distress and low satisfaction are associated acceptance, the demand for palliative care services can be with phrases such as, “There is nothing more I can do for expected to expand in the coming years. The organization you.”11 Discussing what actions can be taken to promote com- sought to understand the nature of the needs of patients with fort might be more productive.12,13 A study analyzing speech advanced illness, their families, and caregivers; describe any patterns during IPC consults revealed that longer consults did changes in needs; determine whether their needs were ad- not earn higher communication ratings than shorter consults. dressed; and learn their impressions of inpatient palliative care Better consult ratings were linked to a higher proportion of (IPC) consults. We report here on the results of a 2-pronged patient-family speech relative to physician speech. On average, exploration: 1) a summary of the literature on needs, and 2) families spoke 29% of the time.14

Karen Tallman, PhD, is a Research Consultant for the Center for Care Experience, Care Management Institute and The Permanente Federation in Oakland, CA. E-mail: [email protected]. Ruth Greenwald, MS, MA, is a Senior Project Manager for the Center for Care Experience, Care Management Institute and The Permanente Federation in Oakland, CA. E-mail: [email protected]. Alice Reidenouer, SM, is a Project Manager for the Center for Care Experience, Care Management Institute and The Permanente Federation in Oakland, CA. E-mail: [email protected]. Laurel Pantel is a Senior Project Manager for the Center for Care Experience, Care Management Institute and The Permanente Federation in Oakland, CA. E-mail: [email protected].

28 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

Access to Medical Care observed among patients with small-cell lung cancer in early Seriously ill patients and their families required timely ac- referral outpatient palliative care settings versus usual care.32 cess to coordinated medical care and symptom management. Patients provided with inpatient palliative care consults were Patients wished to have a trusted personal physician; to be free less likely to die in intensive care units and more likely to re- of pain, symptoms, and anxiety; to avoid prolonged dying; and ceive hospice referrals.25 Consults in outpatient and inpatient to maintain mental alertness,10,15,16 but families reported having settings can improve pain management, symptoms, quality of too few visits with health professionals and inadequate symptom life, depression, and anxiety.32,33 control.17,18 Various health system barriers were described by patients and families, including multiple physicians and conflict- Patient and Family Satisfaction and ing information from physicians and staff unfamiliar with issues Well-Being after Palliative Care Consults related to the dying.3 Several studies have documented a positive impact of IPC consults on the care experience. A telephone survey of caregivers Ability to Make Care Choices of patients receiving IPC services found that 95% of respondents Patients wanted to consider their options, to put their choices said they would be likely to recommend the service.29 A multisite in writing, and to have those choices honored.2,15 This occurred Veterans Administration survey of 524 family members found that more frequently when the patient participated in advance care patients who had an inpatient or outpatient consultation were planning.19 Interviews with caregivers revealed that patient significantly more satisfied with information, communication, preferences for medical care can evolve. Some patients who access to care, emotional and spiritual support, well-being, and initially sought invasive, life-sustaining treatment shifted toward dignity and care at death than families of patients who did not.34 palliative goals as their illness progressed.20 Early referral, which can increase the use of hospice services, maximizes the value of IPC consults. Longer hospice stays im- Well-being of Patients, Family, and Caregivers proved quality of life for patients, which in turn was associated Patients often focused on the well-being of their family with better quality of life for caregivers.35 members. Steinhauser16 found patients generally wished to avoid being a burden on family, to have conflicts resolved, Widespread Unmet Need to know the family was prepared for their death, and to have Despite the rapid growth of palliative care, many patients an opportunity to say good-bye. Patients typically valued have not discussed or documented their wishes. The California having family members present during advance care plan- Healthcare Foundation surveyed 1669 adult Californians and ning meetings. found that 70% preferred to die at home, but only 32% did. Coming to peace with God and being able to discuss spiritual Nearly 80% would have liked to speak to their physician about beliefs was important to many patients.16 end-of-life care if seriously ill, but less than 7% had ever par- Caregivers often found supporting a loved one to be a mean- ticipated in such a conversation.36 Another California Healthcare ingful experience, but it could deplete time, financial resources, Foundation survey found that only 44% of 373 respondents who mental health, and physical health.21 A study of 392 caregivers had experienced the death of a family member in the last 12 and 427 noncaregivers found mortality risks were 63% higher months felt that the patient’s wishes were completely followed among stressed caregivers than among noncaregiver controls, and honored by providers.37 after adjustments for demographics and subclinical disease.22 Information and support provided to caregivers have frequently Longitudinal Video-Ethnographic Study been described as inadequate.1,3,10,17,18 Background and Objectives Implementation of IPC programs has spread rapidly across the Palliative Care Interventions Designed US and abroad. In 2011, 85% of US hospitals with 300 or more beds to Meet Needs of Patients with Advanced Illness had palliative care programs.37 Inpatient palliative care services To meet the complex medical and communication needs are available at all Kaiser Permanente (KP) Medical Centers.38 of patients and families in the hospital setting, IPC consulta- To understand the care experience of patients and their tions were developed to deliver holistic, patient- and family- families, KP Care Management Institute surveyed families of centered care. They were designed with the objectives of patients who had died several months before (unpublished managing symptoms; helping patients reflect on their values; data, 2009). A thematic analysis of 1212 verbatim comments explaining care options; appointing a proxy; documenting identified a variety of patient, family, and caregiver needs goals of care; meeting psychological, social, and spiritual (unpublished data, 2009). The findings revealed some chal- needs of patients and family members; and supporting plan- lenges, but the brief comments did not describe the sequence ning for future care. of events behind them. The survey of families did not include Randomized controlled trials and other studies have demon- the patient’s perspective or describe how patients and families strated that palliative care consultations, especially by multidis- experienced IPC consults. In-depth, longitudinal case studies ciplinary teams, can have a favorable impact on readmissions, investigating the care experience are needed to supplement intensive care unit admissions, use of hospice, costs, and findings of the large-sample survey and inform strategies to the care experience.10,23-31 Increased median longevity was improve the quality of IPC and the care experience.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 29 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

Methods developed iteratively using the constant comparative method.39 A series of 12 case studies was conducted using a form of Transcribed interviews and 70 hours of videotape were reviewed anthropologic inquiry, video-ethnography. Ethnographic re- to develop themes and later to apply the final codes. search is designed to uncover participant perspectives through Observers who participated in data collection contributed to sustained, naturalistic observation of and engagement with theme development. Two coders independently applied the final informants over time. In-depth understanding of a few partici- codes to transcribed and videotaped interviews and resolved pants is acquired, in contrast to a limited understanding of a large discrepancies. Analysis was conducted with ATLAS.ti qualitative number of participants. analysis software (v5, ATLAS.ti Scientific Software Development The study included 12 patients who received care at 3 Medical GmbH, Berlin, Germany) and Microsoft Excel (XP Professional, Centers, and their families and caregivers. We recruited patients 2003, Microsoft, Redmond, WA). We tallied met and unmet who were scheduled for an IPC consult on the days the study needs in each case to determine the prevalence of each need team visited the site. Exclusion criteria included families who and to test hypotheses. Selection criteria for final need themes did not speak English, patients whose death was imminent, were 1) on the basis of participants’ perspectives rather than and patients with no family member attending the consult. To an organizational perspective; 2) pervasive importance across the extent possible in a small sample, we targeted patients with patients and families; and 3) together the need themes should diverse diagnoses and diverse ethnic and cultural backgrounds encompass all major issues raised by participants. who were able to participate in consults and who had life expec- The study proposal was reviewed by the KP institutional tancies longer than 3 months. Physicians and nurses who were review board. Participating patients and family members were most familiar with the patients invited them to participate. The informed of their rights and gave written, informed consent. interviewer administered consent forms to interested patients and families. Semistructured interviews were conducted from Results October 2009 through December 2010. Participants: Five IPC teams from 3 urban KP Medical Centers Patients and families were observed and videotaped by an volunteered to participate. The classical elements of palliative interviewer-videographer team before, during, and after the IPC care consults delivered by an interdisciplinary team (eg, the consult. Interviews took place before and after the consult. After 4-discipline team observed by Gade et al24) were not present at the consult, they were asked about their impressions of the IPC all sites. Three teams comprised various combinations of team team, about their own priorities, and whether they had unan- members (physician, nurse, social worker, and chaplain). Two swered questions. Participants were encouraged to share family teams provided consults by a single practitioner (nurse or physi- stories. One or more follow-up IPC team visits were recorded cian) with follow-up visits by a social worker. Both approaches in the hospital, followed by additional interviews. tended to include more than one visit with the patient, family, During visits in the following weeks and months, patients and or both. Preparatory visits and follow-up visits were often at- families were interviewed in their home, assisted-living facility, tended by a subset of the team (just the physician, nurse, or hospital, or skilled nursing facility. Participants were asked how social worker; or two members.) Thus the “team” intervention they were faring, what events had transpired, what health care was not a fixed, single intervention. Visits included early assess- contacts they had made, what needs they had, and what concerns ment by one team member; full consults typically lasting 30 to were most important for each family member. We observed the 60 minutes; additional family conferences; visits to complete care environment and how patients and families functioned. directives; and meetings to help with postdischarge needs. Each We learned about consults and patient care from the perspec- visit offered opportunities for patients and family members to tives of participants in different roles (patients, families, caregiv- ask new questions and assimilate the information. When inter- ers, and IPC teams) and on multiple occasions. The variety of data disciplinary teams sensed that a visit from a large team might sources contributed to a deeper understanding of the context be burdensome, they limited team size. and course of the end-of-life experience (Table 1). Patients referred for palliative care consults tended to be very Initial need themes were based on the needs identified in the old, have moderate to advanced dementia, and/or be close to literature and the analysis of verbatim responses from the sur- death. The recruiting criteria aimed to maximize the number of vey of bereaved family members. Themes and subthemes were patients who could participate in the consult with family members

Table 1. Sampling approach Sampling period IPC consults Participants Preconsult and visits Postconsult Postdischarge Postmortem Patient and/or family Observe, interviewa Observea Observe, interview a Observe, interviewa Observe, interviewa,b IPC team Observe preconsult Observea Interview, observe huddlea,b team debriefa,b a Video recording. b When available. IPC = inpatient palliative care.

30 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

present. All eligible patients scheduled for consults were invited; discharge, normalizing events the patient and family might ex- approximately 50% of the families agreed to participate. One third perience. Families had many questions and especially valued of the participating patients were men. Patient ages ranged from 46 having extended time with a physician. to 89, including 3 women with cancer who had younger children. Caring was communicated through touch, gestures, and at- Diagnoses included cancer, dementia, diabetes, end-stage renal titude. One patient remarked, “The doctor smiled. I am so tired disease, congestive heart failure, pulmonary hypertension, aortic of sad faces.” Other team members responded to questions after aneurysm, diabetes, and infections. Ten of the 12 patients were the consult. Overall, the families felt their information needs able to participate in the consult. Patients were discharged to were being met. After the team left, one family member said, home hospice care (n = 5), skilled nursing facilities (n = 2), or “This is the first communication we have had!” home health services (n = 4). One patient died in the hospital. Team leaders frequently used reframing statements, meta- The sample was not as diverse as we preferred: 10 patients were phors, and analogies to help families and patients know what to Caucasian, 1 was Latina, and 1 was Asian. expect, chart a course for the future, find meaning, and enhance The one-year longitudinal study yielded 70 hours of tran- family relationships. scribed, videotaped consults and interviews with patients and Overall, the structure and sequence of the consults were simi- families, in addition to phone contacts, transcripts, and field lar across patients, although the content varied somewhat. For notes. The database included 35 consults and follow-up team example, adult children with parents unable to make decisions visits and 31 visits with families. struggled with the responsibility of making serious decisions Patient, Family, and Caregiver Needs: Five major need themes and needed support. Patients with young children wanted their central to the patient, family, and caregiver experience were children to know they fought the disease valiantly, even when identified: 1) sensitive, effective communication about advanced they understood their prognosis. Two mothers with cancer made illness; 2) timely access to coordinated medical care; 3) respect a distinction between this battle and denial. for and honoring care decisions; 4) psychological, social, and Two families were concerned that palliative care might spiritual needs; and 5) caregiver support. The degree to which imply giving up on the patient. Despite trepidation about Before the the needs were met varied across patients and families and over having an IPC consult, these patients and families said IPC consult … time. The needs of some patients and families were initially not they were comfortable with team communications. They Most reported met but were later resolved. The needs of other families were felt the teams were helpful. (Over the following months, being met in the hospital but were not fully addressed after discharge. participants voiced a variety of complaints about their confused by The 5 need themes were important to all 12 families. The needs care experience, but IPC team communications were medical jargon of greatest importance to a family typically fluctuated over time. not a source of dissatisfaction.) and being The most frequent comments about the IPC teams Sensitive, Effective Communication concerned their helpfulness, respectful treatment of unable to About Advanced Illness patients and families, clarity of communications, and the integrate the During hospital stay, patients with advanced illness and their amount of time they spent with the family. information. families had a variety of communication needs. Before the IPC Some barriers to effective communication with fami- consult, they sought information about the patient’s current sta- lies were observed. One family member struggled to understand tus, test results, diagnosis, prognosis, etiology, what to expect, the meaning and purpose of “palliative care.” Three families had and what actions to take. Most reported being confused by a member whose hearing impairment reduced the effectiveness medical jargon and being unable to integrate the information. of the consult. One family reported feeling they were receiving conflicting information about the patient’s condition and prognosis, with Timely Access to Coordinated Medical Care nobody explaining the “big picture.” Some families believed Before the consult, some patients and families felt they “had to that a few hospital physicians and staff did not show respect push” to have their medical needs addressed. A few patients and for older, sick patients. family members felt their access to physicians with answers to The IPC teams communicated effectively and sensitively. their questions or test results was not timely. The teams worked They were sometimes described as compassionate or caring. as patient advocates to resolve problems, to coordinate care, Patients and families frequently remarked that the team did and to answer questions. � not rush them. When in doubt, the teams sought permission to Most patients needed help with pain or other symptoms that discuss sensitive topics. The patient and family were encouraged would reduce their ability to participate comfortably in the con- to share past experiences and honor or celebrate the patient’s sult. Symptom control was improved before the family meeting accomplishments and relationships. and fine-tuned over time. The team explained in nontechnical language the patient’s After discharge, challenges included some issues that were past and current condition and implications for functioning in not covered by benefits. Discharges were generally smooth and the immediate future. When asked about the patient’s function- medical needs were initially met. New symptoms or practical ing at home, the patient and family gave answers that raised problems emerged later. Patients under hospice care and pa- their awareness of a poor trajectory. The team helped to bring tients who reconnected with their primary care physicians soon patients and families to an understanding the patient was not after discharge were generally comfortable, and their medical expected to improve. The teams set expectations for life after needs were addressed. Some caregivers of patients who were

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 31 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

not under hospice care observed new symptoms and were not of hospice care was that hospice staff “knew just what to say.” sure how to help the patient. They sought a point of contact Some caregivers of patients not under hospice care felt ill- for questions about emerging medical conditions and practical equipped to care for the patient. Two families sought education needs (such as caring for the patient and transportation to the for safe caregiving in the home, such as moving, toileting, and medical office). Four of the 12 patients were treated in the bathing. For one family, costs associated with transportation to Emergency Department or were readmitted to the hospital the primary care physician’s office were a barrier to receiving on one or more occasions. One family was dissatisfied with the care. One caregiver whose father required hourly care took a quality of medical care at the nursing home. leave of absence from her job to care for him. She was proud of keeping him free of pressure ulcers, but continuous caregiv- Respect For and Honoring Care Decisions ing took a heavy toll on her. Her faith sustained her, but she Most patients had strong preferences about where they would missed her career and her freedom. The daughter of another live after discharge and the intensity of care they would receive patient living at home greatly reduced her work hours to care (eg, not wishing to be sent to a skilled nursing facility or not for her father, who had increasingly unmanageable dementia. wanting hospice care). One patient had distressing memories One caregiver became seriously ill while caring for her husband. of her husband’s living with advanced dementia in a nursing home and was terrified she would be sent there. One couple Discussion was haunted by the mechanical ventilation of their daughter Evolving Needs Over Time after a stroke. They had to “pull the plug” and did not want to The 5 need themes were evident throughout the patient/ endure that again. Two patients initially sought expedited death. family journey, but the prominence of each need varied over Several patients and family members felt that some IPC teams time. Before the consult, most families had compelling needs or other physicians or staff they encountered in the past had for information; psychological, social, and spiritual support; and pressured them into making a decision too soon or had pres- access to care. During the consult, all 5 needs were evident. sured them into making a particular choice. They did not have In the weeks or months thereafter, the need for information, that impression of any of the study teams. In contrast, several caregiver support, and access to care intensified for some families appealed to the physician to help make decisions for families. Psychological, social, and spiritual needs were present them. The 12 patients and their families felt that the teams ac- throughout the observation period but appeared to be set aside cepted and respected their decisions. when other urgent needs emerged. A composite case study (see Preferences of three of the families shifted toward palliative section: Richard’s Palliative Care Experience, page 33) based on care as patient fatigue increased. The patients and families in experiences of the 12 patients and their families highlights these the study were pleased that their wishes were honored. All care findings and illustrates the developing needs and the strengths at end of life was in accord with patient decisions. and challenges of the current care delivery system.

Psychological, Social, and Spiritual Support Limitations The IPC teams were sensitive and respectful to patients and The study design may have introduced bias from the follow- families and responsive to individual and cultural differences. ing sources: convenience sampling of experienced IPC teams/ Patients and families had to process a substantial volume of new sites; provider selection of patient/family units (possibly favoring medical information. The teams adjusted their pace and approach gregarious, articulate, and stable families); unknown influences to meet the needs of different families. They provided direction because of the presence of observers; limited number of consults and promoted a sense of meaning and purpose. Although the addressing spirituality; and limited diversity. The study included five teams used a variety of interaction styles, patient and family only English-speaking patients and patients with family pres- impressions of their interactions with the teams were positive. ent at the time of the consult. The sample size does not permit Some patients or families sought and obtained access to a analyses of subgroups based on factors of interest, such as team psychotherapist for young children of mothers with cancer or configurations and patient demographics. for patients. Two families suggested psychotherapy outreach for young children. Implications Spiritual support was offered during consults, but families This study opens a window into the end-of-life journey across with religious affiliations in this sample said they would consult the continuum of care. The findings point to the need for ac- their own clergy and felt comforted by their faith. Only three cessible language; respect for care decisions; and consistent, families saw a team with a chaplain. Inclusion of more teams coordinated messages in the hospital. We observed the tendency with chaplains might have produced more detailed information of physicians to make IPC referrals for patients near death. The about spiritual experiences. potential value of the teams is not realized by late referrals. Outpatient and inpatient consultations earlier in the disease Caregiver Support process might improve appropriateness of care and increase the The need for caregiver support varied by the type of care likelihood of patients receiving preferred care. received after discharge. Patients under hospice care tended to be The most conspicuous gaps in the care experience were close to death. Most described hospice care as “wonderful” and observed after discharge. The postdischarge support features reported no unmet needs. The most frequently mentioned feature that were essential in this sample were:

32 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

1. understanding normal symptoms versus red flags, and how of medical crises were insisting on heroic measures to extend to respond; his life. In contrast, Richard explained he was tired of fighting 2. point-of-contact for information on medical and nonmedical and wanted to go home and get back to his life. needs; and Richard’s wife, Lisa, told the nurse she did not understand why 3. communication with medical provider soon after discharge her husband was so sick now. She said, “He was doing so well. (nonhospice patients); What happened?” The last physician told her his condition had 4. training for in-home caregiving (eg, moving, toileting, and improved. She was certain he just needed to start walking again. comfort needs); Dr Lewis, the IPC team lead, visited Richard before the full team 5. care for the caregiver (including medical needs). consult. He determined that adjustments to Richard’s medications This list reinforces existing postdischarge checklists40,41 that could reduce his symptoms and conveyed his recommendations include interventions to address gaps and adds caregiver needs. to Richard’s physician. The IPC nurse scheduled a meet- Many postdischarge needs were outside the scope and influence ing with Richard, the team, and four family members. Outpatient of IPC team care and sometimes beyond the reach of health care Before the consult, the IPC team met to discuss Richard’s palliative coverage. Families of patients who are at high risk but not ready clinical status, psychosocial needs, care preferences, and support or eligible for hospice may need enhanced support, including the family’s concerns and resources. They discussed the may play an practical support for caregivers. The best-laid plans may fail in variation in family members’ understanding of Richard’s important complex cases where transitions in patient care are not managed condition and developed a strategy tailored to the family. role in consistently and access to comprehensive, coordinated outpatient support is lacking. In the absence of such a tightly woven safety Richard’s Inpatient Palliative Care Consult addressing net, the Emergency Department becomes the default destination After assessing Richard’s comfort level, Dr Lewis in- deficiencies when new symptoms arise. troduced the team, explained their role, and described in the care A variety of services could provide postdischarge supplemen- how they could help Richard and his family: experience. tal or palliative care, including transitions management programs. “We are the palliative care team. We meet with Outpatient palliative support may play an important role in ad- patients and families of patients who have serious ill- dressing deficiencies in the care experience.42-44 nesses. We address all issues of comfort and quality of life to In terms of new interventions, the nature of this study does make sure that we’re doing everything we can to make Richard not permit specific recommendations, but the findings point to comfortable and be sure you have all the information you need. five needs that are consistently experienced by patients and their We try to understand what’s important to you and how your families and caregivers. family is doing. It’s been a difficult illness for Richard, and it’s Implications for future research include the need for large-sam- going to be a long, potentially difficult recovery process. We ple studies to replicate the findings and estimate the pervasive- want to talk about that and plan for the future.” ness of the needs in the larger population. Future studies could He asked Richard and the family about his experiences and explore differences associated with team staffing, perceptions learned about Richard’s passion for the school’s football team. within a variety of patient subgroups, IPC team communica- Richard was able to help a few boys enter college. Then Dr Lewis tion skills and strategies, and the effectiveness of interventions asked about Richard’s current activities, which transitioned designed to improve the postdischarge experience. A study of naturally into a functional assessment. the perceptions of palliative care services among hospital and As the family responded to questions, they recognized that ambulatory care physicians and nurses could help palliative care Richard’s functional trajectory was not improving. Recently, teams understand barriers to appropriate referrals. Richard had stopped attending football games and had turned the household finances over to his wife. Lisa was his primary Richard’s Palliative Care Experience: caregiver, but she had her own health problems (diabetes, A Composite of Patient/Family Experiences hypertension, and arthritis), and he feared being a burden on Preparation for Richard’s Inpatient Palliative her. The team inquired about the family’s resources to care Care Consult for Richard. Richard, age 72 years, was a high school teacher and football Dr Lewis asked Richard to describe his understanding of his coach.a This 10-day hospitalization was his third emergency condition and his concerns. Richard had a sense of his overall admission this year. He was treated for acute renal failure and status. Dr Lewis explained, “Richard, the concern the doc- congestive heart failure and underwent hemodialysis. Richard tors have is that hospitalization is going to take some of your was struggling with pain and dyspnea. His attending physician strength. You are going to feel different than before you came to recommended the family meet with the IPC team. the hospital.” He asked permission to advance the discussion. “Do Richard’s daughter Beth was pleased the family could meet you want to know how your body might be different?” Richard with the team. She was confused because previous physicians replied, “That is what I want to know.” Dr Lewis continued, had different perspectives on Richard’s status; she wanted to un- “When you came in, you needed kidney dialysis. Your kidneys derstand the big picture of her father’s condition and prognosis. function half as well as they did when you were younger. The Should she encourage out-of-state family members to come soon? other thing that’s different is your heart isn’t as strong as it Beth was concerned that family members were not all on the used to be, so you will feel tired faster … . Some function will same page. Those without first-hand experience with his series come back, but not all. So we just have to go step by step.”

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 33 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

Dr Lewis wove all the apparently unrelated medical events struggled with moving Richard. Beth took leave from work to and messages from various physicians into a coherent explana- help with his care. Beth insisted her mother visit her physician tion in plain language and discussed goals of care. He helped to get a checkup. set expectations for normal changes in the next few weeks. The family felt Richard looked much better after leaving the hos- Richard learned about the likely poor outcomes of cardio- pital. He began spending time in the family room in a wheelchair. pulmonary resuscitation given his debility, renal failure, and He was delighted to be visited by five of the students he coached. impaired cardiac function. He decided he would prefer to be Ten days later, he experienced breathlessness, pain, and anxiety. allowed to have a natural death in the event of a cardiac arrest. Unsure whom to contact, they brought him to the emergency He did not want care in a nursing home for rehabilitation or room. The palliative care team detected his readmission during to have aggressive care to save his life if he was unlikely to their daily scan of palliative care patient admissions and visited be able to interact with his family. He was tired. Richard chose him that day. They had another consult and adjusted the treatment his wife to be his proxy. plan. Richard reiterated his wish not to resume hemodialysis and Lisa was certain that Richard would recover. The hospice was able to return home. A week later, he died at home under care option was presented but not pushed; there would be the care of a hospice team, surrounded by his family. v time to reconsider. The family learned about their home health support options. a Common experiences of participating families were combined in an amalgam family to protect patient and family privacy. The social worker observed that son Richard Jr, who had just arrived from Chicago, had not fully grasped his father’s condition Disclosure Statement until now. The team adjusted the pace of the discussion accord- The author(s) have no conflicts of interest to disclose. ingly. The social worker spent time with Richard Jr after the consult to answer questions and help him with his feelings of guilt. Acknowledgment Leslie E Parker, ELS, provided editorial assistance. After the Inpatient Palliative Care Consult After the IPC team left, the family was asked for their impres- References sions. Richard was satisfied with the meeting. He asked his family 1. Clayton JM, Butow PN, Tatersall MH. The needs of terminally ill cancer to support each other instead of bickering. patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer 2005 May 1;103(9):1957-64. Beth was pleased that the family now had a common 2. Morton RL, Tong A, Howard K, Snelling P, Webster AC. The views of understanding of Richard’s condition and a concrete post- patients and carers in treatment decision making for chronic kidney disease: discharge plan. She appreciated the hour with the physician, systematic review and thematic synthesis of qualitative studies. BMJ 2010 Jan 19;340:c112. saying, “He answered questions in my language and said 3. Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of fam- things in a way we can understand … The doctor said, ‘This ily caregivers in palliative care: challenges for health professionals. J Palliat is what’s going to happen,’ … and it wasn’t rushed. He spent Med 2004 Feb;7(1):19-25. 4. Azoulay E, Pochard F, Chevret S, et al; French FAMIREA Group. Meeting the time explaining. You have to spend time ... especially in a needs of intensive care unit patients and families: a multicenter study. Am J situation like this.” Respir Crit Care Med 2001 Jan;163(1):135-9. Lisa feared she lacked the skills and strength to care for 5. Nelson JE, Gay EB, Berman AR, Powell CA, Salazar-Schicchi J, Wisnivesky JP. Patients rate physician communication about lung cancer. Cancer 2011 Nov Richard in his weakened condition. She said, “He is a big man 15;117(22):5212-20. and he is not walking now. Somebody’s got to tell me what to 6. Prendergast TJ, Luce JM. Increasing incidence of withholding and with- do. What’s the plan? How do I lift him?” Beth was concerned drawal of life support from the critically ill. Am J Respir Crit Care Med 1997 Jan;155(1):15-20. about her mother. During the previous two months of caring for 7. Wendler D, Rid A. Systematic review: the effect on surrogates of making Richard, Lisa would often have to stop and rest. treatment decisions for others. Ann Intern Med 2011 Mar 1;154(6):336-46. The IPC team debriefed after the meeting. They discussed 8. Gordon GH. Care not cure: dialogues at the transition. Patient Educ Consult whether they had advanced the conversation at the right pace and 2003 May;50(1):95-8. 9. Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld whether family members could assimilate what they heard. The GD. Missed opportunities during family conferences about end-of-life nurse mentioned that Richard’s daughters had additional ques- care in the intensive care unit. Amer J Respir Crit Care Med 2005 Apr tions; she would meet with them before they left for the day. The 15;171(8):844-9. 10. Dy SM, Shugarman LR, Lorenz KA, Mularski RA, Lynn J; RAND-Southern recommended changes to the treatment plan, revised code status, California Evidence-Based Practice Center. A systematic review of satisfac- goals of care, and the family’s perspectives were communicated to tion with care at the end of life. J Am Geriatr Soc 2008 Jan;56(1):124-9. Richard’s physicians and nurses. Lisa and Beth later met with the 11. Morita T, Akechi T, Ikenaga M, et al. Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol 2004 team social worker to discuss Richard’s postdischarge needs and Oct;15(10):1551-7. financial concerns. The nurse visited Richard and Lisa the next day 12. Larson DG, Tobin DR. End-of-life conversations: evolving practice and to answer their new questions and formally document his wishes. theory. JAMA 2000 Sep;284(12):1573-8. 13. Pantilat SZ. Communicating with seriously ill patients: better words to say. Lisa said, “I know what I need to know. We have a plan, for now.” JAMA 2009 Mar 25;301(12):1279-81. 14. McDonagh JR, Elliot TB, Engelberg RA, et al. Family satisfaction with family After Discharge conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Richard was discharged to his home, as he wished, with the Care Med 2004 Jul;32(7):1484-8. support of home health care services, physical therapy, and 15. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspec- his primary care physician. The transition was smooth, but Lisa tives. JAMA 1999 Jan 13;281(2):163-8.

34 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

16. Steinhauser KE, Christakis NA, Clipp ED, McNeilly M, McIntyre L, Tulsky JA. 31. Hudson P, Thomas T, Quinn K, et al. Family meetings in palliative care: are Factors considered important at the end of life by patients, family, physi- they effective? Palliat Med 2009 Mar;23(2):150-7. cians and other care providers. JAMA 2000 Nov;284:2476-82. 32. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients 17. Lecouturier J, Jacoby A, Bradshaw C, Lovel T, Eccles M. Lay carers’ satisfac- with metastatic non-small-cell lung cancer. N Engl J Med 2010 Aug tion with community palliative care: results of a postal survey. South Tynes- 19;363(8):733-42. die MAAG Palliative Care Study Group. Palliat Med 1999 Jul;13(4):275-83. 33. Higginson IJ, Evans CJ. What is the evidence that palliative care teams 18. Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers’ improve outcomes for cancer patients and their families? Cancer J 2010 needs in providing home-based end-of-life care to people with cancer. J Sep-Oct;16(5):423-35. Clin Nurs 2009 May;18(10):1379-93. 34. Casarett D, Pickard A, Bailey FA, et al. Do palliative consultations improve 19. Detering KM, Handcock AD, Reade MC, Silvester W.The impact of advance patient outcomes? J Am Geriatr Soc 2008 Apr;56(4):593-9. care planning on end of life care in elderly patients: randomised controlled 35. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life trial. BMJ 2010 Mar 23;340:c1345. discussions, patient mental health, medical care near death, and caregiver 20. Fried TR, O’Leary JR. Using the experiences of bereaved caregivers to inform bereavement adjustment. JAMA 2008 Oct 8;300(14):1665-73. patient- and caregiver-centered advance care planning. J Gen Intern Med 36. Lake Research Partners, The Coalition for Compassionate Care of California. 2008 Oct;23(10):1602-7. Final chapter: Californians’ attitudes and experiences with death and dying 21. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the [booklet on the Internet]. Oakland, CA: California HealthCare Foundation; end of life: “they don’t know what they don‘t know.” JAMA 2004 Jan 2012 Feb 14 [cited 2012 Jun 18]. Available from: www.chcf.org/~/media/ 28;291(4):483-91. MEDIA%20LIBRARY%20Files/PDF/F/PDF%20FinalChapterDeathDying.pdf. 22. Schultz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver 37. Palliative care in hospitals continues rapid growth for 10th straight year, Health Effects Study. JAMA 1999 Dec 15;282(23):2215-9. according to latest analysis [press release on the Internet]. New York: Center 23. Hearn J, Higginson IJ. Do specialist palliative care teams improve outcomes to Advance Palliative Care; 2011 Jul 14 (cited 2011 Sep 6] Available from: for cancer patients? A systematic literature review. Palliat Med 1998 www.capc.org/news-and-events/releases/07-14-11. Sep;12:317-32. 38. Della Penna R, Martel H, Neuwirth E, et al. Rapid spread of complex 24. Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care change: a case study in inpatient palliative care. BMC Health Serv Res 2009 team: a randomized controlled trial. J Palliat Med 2008 Mar;11(2):180-90. Dec 29;9:245. 25. Morrison RS, Dietrich J, Ladwig S, et al. Palliative care consultation teams 39. Glaser BG. The constant comparative method of qualitative analysis. Social cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood) 2011 Problems 1965 Spring;12(4):436-45. Mar;30(3):454-63. 40. Coleman EA, Parry C, Chalmers S, Min SJ. The care transitions interven- 26. Penrod JD, Deb P, Luhrs C, et al. Cost and utilization outcomes of patients tion: results of a randomized controlled trial. Arch Intern Med 2006 Sep receiving hospital-based palliative care consultation. J Palliat Med 2006 25;166(17):1822-8. Aug;9(4):855-60. 41. Naylor MD, Brooten DA, Campbell RL, Maislin G, McCauley KM, Schwartz 27. Penrod JD, Deb P, Dellenbaugh C, et al. Hospital-based palliative care JS. Transitional care for older adults hospitalized with heart failure: a consultation: effects on hospital cost. J Palliat Med 2010 Aug;13(8):973-9. randomized, controlled trial. J Am Geriatr Soc 2004 May;52(5):675-84. Erratum in: J Palliat Med 2006 Dec;9(6):1509. Erratum in: J Am Geriatr Soc 2004 Jul;52(7):1228. 28. Morrison RS, Renrod JD, Cassel JB, et al; Palliative Care Leadership Centers’ 42. Brumley RD, Enguidanos S, Cherin DA. Effectiveness of a home-based pal- Outcomes Group. Cost savings associated with US hospital palliative care liative care program for end-of-life. J Palliat Med 2003 Oct;6(5):715-24. consultation programs. Arch Intern Med 2008 Sep 8;168(16):1783-90. 43. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care 29. O’Mahony MD, Blank AE, Zallman BA, Selwyn PA. The benefits of a and lower costs: results of a randomized trial of in-home palliative care. J hospital-based inpatient palliative care consultation service: preliminary Am Geriatr Soc 2007 Jul;55(7):993-1000. outcome data. J Palliat Med 2005 Oct;8(5):1033-9. 44. Engelhardt JB, Rizzo VM, Della Penna RD, et al. Effectiveness of care coordi- 30. Nelson C, Chand P, Sortais J, Oloimooja J, Rembert G. Inpatient palliative nation and health counseling in advancing illness. Am J Manag Care 2009 care consults and the probability of hospital readmission. Perm J 2011 Nov;15(11):817-25. Spring;15(2):48-51.

Treated to Death I do not want to relinquish control over how I will die; I do not want to be “treated to death.” — A Graceful Exit, Lofty L Basta, MD, cardiologist and author

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 35 soul of the healer

“The Virgin River” oil on canvas 18” x 24”

Fred M Freedman, MD

Fred M Freedman, MD, is a retired Neurologist from the South Bay Medical Center. He enjoys painting in oil on canvas. The inspiration for many of his paintings are scenes from his travels. Dr Freedman has done artwork all his life, including etchings and painting in oil and gouache.

36 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Sociodemographic Characteristics of Members of a Large, Integrated Health Care System: Comparison with US Census Bureau Data

Corinna Koebnick, PhD, MS; Annette M Langer-Gould, MD, PhD, MS; Michael K Gould, MD, MS; Perm J 2012 Summer;16(3):37-41 Chun R Chao, PhD, MS; Rajan L Iyer, MPH; Ning Smith, PhD; Wansu Chen, MS; Steven J Jacobsen, MD, PhD

predictors for poor health outcomes that Abstract are also associated with low socioeco- Background: Data from the memberships of large, integrated health care systems can nomic status or by failing to identify such be valuable for clinical, epidemiologic, and health services research, but a potential predictors in entirety. selection bias may threaten the inference to the population of interest. The purpose of this study was to com- Methods: We reviewed administrative records of members of Kaiser Permanente pare the sociodemographic characteristics Southern California (KPSC) in 2000 and 2010, and we compared their sociodemographic of the members of a large integrated health characteristics with those of the underlying population in the coverage area on the basis care organization, Kaiser Permanente of US Census Bureau data. Southern California (KPSC), with the cen- Results: We identified 3,328,579 KPSC members in 2000 and 3,357,959 KPSC mem- sus population of the Southern California bers in 2010, representing approximately 16% of the population in the coverage area. The coverage area. distribution of sex and age of KPSC members appeared to be similar to the census reference population in 2000 and 2010 except with a slightly higher proportion of 40 to 64 year olds. Methods The proportion of Hispanics/Latinos was comparable between KPSC and the census refer- Setting and Design ence population (37.5% vs 38.2%, respectively, in 2000 and 45.2% vs 43.3% in 2010). An integrated health care system, KPSC However, KPSC members included more blacks (14.9% vs 7.0% in 2000 and 10.8% vs 6.5% provides comprehensive health care for in 2010). Neighborhood educational levels and neighborhood household incomes were more than 3.4 million of the 23 million generally similar between KPSC members and the census reference population, but with a residents of Southern California. Members marginal underrepresentation of individuals with extremely low income and high education. receive medical care in 14 hospitals and Conclusions: The membership of KPSC reflects the socioeconomic diversity of the more than 197 medical offices in 10 coun- Southern California census population, suggesting that findings from this setting may ties of Southern California: Imperial, Kern, provide valid inference for clinical, epidemiologic, and health services research. Los Angeles, Orange, Riverside, San Ber- nardino, San Diego, San Luis Obispo, Santa Introduction Most US health plan members, however, Barbara, and Ventura. Medical information Data from the memberships of inte- receive health insurance through the em- is captured in complete EHR that include grated health care organizations offer ployer of at least one family member. This all inpatient and outpatient progress notes; several advantages for health researchers, covered individual may be healthier and pharmacy records; radiology reports and including large samples and availability of may have other advantages, such as more images; and membership characteristics, electronic health records (EHR) that pro- years of education than the general popu- including race/ethnicity and language vide diagnostic codes, pharmacy records, lation, thus raising concern that findings preference, both written and spoken. Mem- vaccination records, and membership char- from studies performed in integrated health bers can obtain KPSC insurance coverage acteristics.1-9 In some cases, these data may care settings may not be generalizable to through employer-based plans, individual be augmented by comprehensive inpatient younger or disadvantaged portions of the plans, and Medicare or state-subsidized and outpatient progress notes, radiologic US population. Furthermore, because low health care for the indigent. images, and reports.10-12 These features socioeconomic status may be associated For this study, we identified all individ- facilitate researchers in performing stud- with poor health outcomes,13-15 a healthy uals who were members of KPSC at any ies of health disparities, long-term patient worker effect may bias findings from stud- time in the years 2000 and 2010. Sociode- outcomes, and comparative effectiveness ies in these settings by underestimating mographic information was collected at in a timely and cost-efficient manner. the magnitude of the effect of important the time of Health Plan enrollment, and

Corinna Koebnick, PhD, MS, is a Research Scientist for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: corinna. [email protected]. Annette M Langer-Gould, MD, PhD, MS, is a Research Scientist for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected]. Michael K Gould, MD, MS, is a Research Scientist for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected]. Chun R Chao, PhD, MS, is a Research Scientist for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected]. Rajan L Iyer, MPH, is a Research Associate for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected]. Ning Smith, PhD, is a Biostatistician for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected]. Wansu Chen, MS, is the Group Leader of Biostatistics, Programming & Database Development for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected]. Steven J Jacobsen, MD, PhD, is the Director of Research for Kaiser Permanente Research and Evaluation in Pasadena, CA. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 37 ORIGINAL RESEARCH & CONTRIBUTIONS Sociodemographic Characteristics of Members of a Large, Integrated Health Care System: Comparison with US Census Bureau Data

missing or incorrect information may races. Ethnicity was classified as Hispanic borhood education, neighborhood income, have been updated during inpatient and or non-Hispanic. Race and ethnicity infor- and participation in Medi-Cal (Medicaid) or outpatient medical visits. The institutional mation for KPSC members was extracted other state-subsidized health care coverage review board of KPSC reviewed and ap- from administrative records, a method programs. Neighborhood education and proved the study protocol. previously validated against birth certifi- neighborhood income were estimated cate information.16 on the basis of the linkage of Health Race and Ethnicity Plan members’ addresses via geocoding We categorized race as white, black, Socioeconomic Status (Geospatial Entity Object Coding) with US American Indian/Alaskan Native, Asian/ As indicators of socioeconomic status, Census block data.17 Pacific Islander, multiple races, and other we used three different measures: neigh- Reference Populations The reference populations included all a Table 1. Demographic characteristics residents of the 10 counties of Southern 2000 2010 California who were included in the 2000 Demographic characteristic Census KPSC Census KPSC and 2010 censuses. Information about the Total population (N) 20,637,512 3,328,579 22,680,010 3,657,959 Southern California census populations Sex was retrieved from the US Census Bureau Male 49.8 48.9 49.7 48.4 files using the full data set through the Female 50.2 51.1 50.3 51.6 Web-based query portal (www.census. Age group, years gov). Census information on sex, race, 0 to 9 16.0 15.3 13.6 12.9 ethnicity, education, household income, 10 to 14 7.8 8.0 7.2 7.5 households with income below the pov- erty level, and public assistance income 15 to 19 7.3 7.5 7.9 8.1 were extracted from demographic profile 20 to 39 31.1 29.1 29.1 26.2 summary files. To match Health Plan 40 to 64 27.6 30.8 31.3 34.1 administrative records, we collapsed the ≥65 10.9 9.2 10.9 11.2 available race categories from the census b Race questionnaire to the following categories: Non-Hispanic white 42.3 46.3 36.4 34.0 white, black, American Indian/Alaskan Hispanic white 15.3 22.7 20.5 36.9 Native, Asian/Pacific Islander, multiple Black 7.0 14.9 6.5 10.8 races, and other race. American Indian/Alaska Native 0.9 0.2 0.9 0.3 Asian/Pacific Islander 9.9 8.6 11.8 10.1 Statistical Analysis Other races 19.9 7.1 19.3 7.5 We report descriptive statistics for vari- Multiple races 4.7 0.3 4.6 0.4 ables of interest in the KPSC population Hispanic or Latinob 38.2 37.5 43.3 45.2 and the Southern California reference Neighborhood educationc population. We report similar descriptive Less than high school 25.8 25.2 21.3 21.4 statistics stratified by age group only for High school graduate 20.0 20.9 20.9 23.0 the year 2000, because these data were not Some college or associate degree 29.5 30.6 29.1 29.9 available for the census population in 2010. Bachelor’s degree 16.0 15.2 18.5 17.0 We did not perform formal statistical tests to identify differences between the two Graduate or professional degree 8.7 7.9 10.1 8.7 populations. Because of the large popula- Neighborhood household incomec tion size, even small­—but not necessarily <$10,000 8.8 8.1 6.1 5.9 relevant—differences between populations $10,000 to $14,999 5.9 5.6 5.3 3.4 would result in a significant test result. $15,000 to $24,999 12.1 11.8 10.3 8.4 $25,000 to $34,999 11.9 11.9 9.5 9.1 Results $35,000 to $49,999 15.4 15.9 13.4 13.2 Members of KPSC in 2000 and 2010 $50,000 to $74,999 19.0 20.3 17.7 19.0 represented approximately 16.1% of the $75,000 to $99,999 11.1 11.8 12.4 14.4 census reference population in the KPSC $100,000 to $149,999 9.6 9.6 14.0 15.4 coverage area (Table 1). The overall ≥$150,000 6.1 5.0 11.2 11.2 distribution of gender and age of KPSC a Data are percentages of subjects unless otherwise indicated. Some data do not total to 100% because of rounding. members appeared to be similar to the b For KPSC, information about race and ethnicity was based on administrative records among those with known race census reference population in 2000 and ethnicity (members with unknown race: 43.7% in 2000 and 24.9% in 2010). c Neighborhood income and education are not reported income and education but are estimated on the basis of 2010, with the exception that the 40- to members’ addresses using neighborhood income and education from US Census tract information. 64-year-old age group was marginally KPSC = Kaiser Permanente Southern California.

38 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Sociodemographic Characteristics of Members of a Large, Integrated Health Care System: Comparison with US Census Bureau Data

overrepresented among KPSC members (30.8% vs 27.6% in 2000 and 34.1% vs 31.3% in 2010; Table 1). The proportion of Hispanics/Latinos was comparable between KPSC and the census reference population in 2000 (37.5% vs 38.2%) and 2010 (45.2% vs 43.3%). However, KPSC members included more blacks in both 2000 and 2010 (14.9% vs 7.0% in 2000 and 10.8% vs 6.5% in 2010). Non-Hispanic whites were slightly over- represented among KPSC members in 2000, but in 2010 this group was somewhat underrepresented (46.3% vs 42.3% in 2000 and 34.0% vs 36.4% in 2010). Whereas the KPSC membership and the census reference population had similar Figure 1. Proportion of Kaiser Permanente Southern California (KPSC) members proportions of Hispanics in both 2000 who receive health care coverage by Medi-Cal (Medicaid) and other state-subsidized programs, by age group. and 2010, the census population included fewer self-reported Hispanic whites and Adults were defined as 18 years of age or older, and children were defined as younger than 18 years of age. (Cut off age determined by Medicaid/Medi-Cal eligibility.) more individuals who classified them- selves as “other race” in these years. Neighborhood educational level and KPSC members who received health care in demographic characteristics to the neighborhood household income were coverage by Medi-Cal and other state- census reference population in 2000a generally similar between KPSC members subsidized programs increased from 0.7% (Table 2). Members of KPSC represented and the census reference population to 1.6% among adults and from 4.4% to 15.2% of 0 to 9 year olds, 16.5% of 10 (Table 1). However, slightly fewer KPSC 16.1% among youths between 2000 and to 14 year olds, and 16.5% of 15 to 19 members in 2010 resided in neighbor- 2010. In the coverage area of Southern year olds in the Southern California hoods with household incomes below California, an estimated 11.6% had an coverage area. Differences in racial/ $25,000 (17.7% vs 21.6%, respectively), or income below the poverty level, and ethnic groups between KPSC youth and in neighborhoods with a higher percent- 5.1% received public assistance in 2000, Southern California census youth were age of college graduates (25.7% vs 28.6%). whereas in 2010 an estimated 16.2% had similar to the differences observed in the Approximately 1.7% of KPSC mem- an income below the poverty level and overall populations of all ages, although bers received services paid by Medi-Cal, 4.0% received public assistance. the higher proportion of blacks seen California’s state-subsidized health care Members of KPSC between 0 and in KPSC was even more pronounced program (Figure 1). The proportion of 19 years of age were generally similar among 10 to 19 year olds.

Table 2. Demographic characteristics of youth in 2000, by age group 0 to 9 years 10 to 14 years 15 to 19 years Demographic characteristic KPSC Census KPSC Census KPSC Census Total population (N) 510,477 3,310,416 267,431 1,596,627 248,709 1,514,947 Sex (%) Male 51.0 51.2 50.8 51.2 50.7 51.7 Female 48.0 48.8 49.2 48.8 49.3 48.3 Race (%)a Non-Hispanic white 28.0 28.6 27.5 32.8 36.4 33.2 Hispanic white 42.0 20.7 37.0 18.1 34.3 17.0 Black 13.0 7.5 19.0 8.4 18.9 7.8 American Indian/Alaska Native 0.2 1.0 0.2 1.1 0.3 1.1 Asian/Pacific Islander 7.4 7.4 6.9 8.6 7.0 9.9 Other races 9.0 27.5 8.9 24.9 8.2 25.5 Multiple races 0.4 7.3 0.5 6.3 0.6 5.7 Hispanic or Latino (%) 50.4 53.1 47.2 47.2 43.2 46.2 a Some data do not total to 100% because of rounding. KPSC = Kaiser Permanente Southern California.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 39 ORIGINAL RESEARCH & CONTRIBUTIONS Sociodemographic Characteristics of Members of a Large, Integrated Health Care System: Comparison with US Census Bureau Data

Adult KPSC members were generally effect or healthy worker bias. The similar the insured and the underlying population similar to the census reference popula- proportions of low-income individuals in less likely to occur. tion in 2000 (Table 3). Members of KPSC KPSC and the reference population likely Although we did not find strong evi- represented 15.1% of 20 to 39 year olds, reflect the large number of Medi-Cal re- dence for a healthy worker bias, we can- 19.9% of 40 to 64 year olds, and cipients who are KPSC members. Despite not exclude the possibility of a mixture of … the KPSC 14.6% of people aged 65 years small differences in the proportion of healthy insured effect through attractive and older in the Southern Cali- demographic groups, we demonstrated KP benefit plans masked by an over- population may fornia coverage area. Differences large numbers of KPSC members in all representation of members with chronic be particularly in racial/ethnic groups between subgroups across the spectrum of age, illnesses because competitor plans are useful for KPSC adults and Southern Cali- race and ethnicity, and socioeconomic more expensive or do not cover expen- examining the fornia census adults were similar groups, including a large number of indi- sive drug costs. If a strong healthy worker comparative to the differences observed in viduals under the poverty threshold and bias were present, one would expect an effectiveness of the overall populations of all enrolled in subsidized programs to cover overrepresentation of the stable work- interventions ages, although in both KPSC and health insurance. Our findings suggest that ing population manifested by more men across census reference populations results from studies conducted in the KPSC aged 40 to 65 years, and with a higher sociodemographic the proportion of Hispanics was population may be generalizable to the socioeconomic status compared with the subgroups. significantly lower in adults 40 Southern California population. geographic reference population. years and older. The healthy worker bias is an example Beyond healthy worker bias, health of a selection bias that can lead to an insurance benefit structures also influence Discussion underestimation of morbidity because of the health of its members by discourag- The main finding of this study is that a better health status of the workforce ing chronically ill members through caps, the KPSC population appeared to be compared with the general population high copays, and/or deductibles, and by similar to the Southern California census (which also includes people who are too attracting the healthiest of the healthy by reference population in 2000 and 2010. sick to work). Comparably, an insured offering very low premiums. However, All ages and all racial/ethnic and socio- population may be healthier than the it is possible that competitor plans, by economic groups were represented in the general population because health insur- offering high copays for medications KPSC population. Adults aged 40 to 64 ance is often employer sponsored. On the and restricting access to specialists, for years, who likely represent a stable work- other hand, about 83% of individuals in instance, are more expensive than KPSC ing population, were only marginally over- California had health insurance coverage and less convenient for those with chronic represented among KPSC members, and in 2009.18 Managed care organizations pro- illnesses. It is not possible to determine the extremely poor and highly educated vide care for a wide range of individuals how such factors influence the health were only marginally underrepresented receiving care through different channels, of the KPSC membership by examining among KPSC members in 2010. In general, including employer-based care, family demographic characteristics alone. there were no grossly apparent differences members, and programs subsidized by On a national level, our findings in education or income level between the state. This diversity makes healthy indicate that the KPSC population may KPSC and the reference population, as worker bias and gross differences in be particularly useful for examining the would be expected with a healthy insured socioeconomic characteristics between comparative effectiveness of interven-

Table 3. Demographic characteristics of adults in 2000, by age group 20 to 39 years 40 to 64 years ≥65 years Demographic characteristic KPSC Census KPSC Census KPSC Census Total population (N) 969,395 6,403,335 1,024,723 5,708,965 307,844 2,103,222 Sex (%) Male 48.6 51.5 48.1 49.0 46.0 42.0 Female 51.4 48.5 51.9 51.0 54.0 58.0 Race (%)a Non-Hispanic white 35.7 36.2 48.4 52.8 67.9 67.9 Hispanic white 32.4 16.6 20.6 11.6 12.0 9.3 Black or African American 14.6 6.9 14.7 7.0 11.2 5.5 American Indian/Alaska Native 0.3 1.0 0.2 0.8 0.1 0.5 Asian/Pacific Islander 8.8 10.5 9.7 11.4 6.1 9.1 Other races 7.8 24.1 6.4 13.1 2.6 5.6 Multiple races 0.5 4.7 0.1 3.3 0.1 2.2 Hispanic or Latino (%) 48.0 44.0 29.8 26.6 15.0 15.8 a Some data do not total to 100% because of rounding. KPSC = Kaiser Permanente Southern California.

40 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Sociodemographic Characteristics of Members of a Large, Integrated Health Care System: Comparison with US Census Bureau Data

tions across sociodemographic subgroups. accurately reflect the distribution of the modalities of care. Health Aff (Millwood) 2009 The diversity and large number of KPSC population when used for studies that Mar-Apr;28(2):323-33. 6. Wu JJ, Black MH, Smith N, Porter AH, Jacobsen members make it possible to conduct include very large populations, as seen SJ, Koebnick C. Low prevalence of psoriasis subgroup analyses aimed at identifying here. In addition, we were unable to among children and adolescents in a large multiethnic cohort in southern California. J Am sources of heterogeneity on the basis compare education, income, and demo- Acad Dermatol 2011 Nov;65(5):957-64. of demographic factors and estimating graphics by age group strata with the 2010 7. Koebnick C, Smith N, Coleman KJ, et al. risks within such subgroups. In this way, US Census because these data are not Prevalence of extreme obesity in a multiethnic cohort of children and adolescents. J Pediatr studies conducted in KPSC could help to available. Finally, because our goal was to 2010 Jul;157(1):26-31. accomplish this important objective of evaluate overall comparability, we did not 8. Smith N, Iyer RL, Langer-Gould A, et al. comparative effectiveness research.19 Risk perform formal statistical tests to identify Health plan administrative records versus birth certificate records: quality of race and ethnicity estimates generated from such subgroups differences between the two populations. information in children. BMC Health Serv Res and general trends are likely to be general- Given the very large samples, we would 2010 Nov 23;10:316. izable in most instances. However, findings expect that differences between groups 9. Sy LS, Liu IL, Solano Z, et al. Accuracy of influenza vaccination status in a computer- from such studies, particularly absolute would be highly significant even when based immunization tracking system of a rates, may not always be generalizable on trivial in magnitude or importance. managed care organization. Vaccine 2010 Jul a national level. On the other hand, the Strengths of the KPSC population in- 19;28(32):5254-9. 10. Getahun D, Fassett MJ, Jacobsen SJ. Gesta- spectrum of illness and conditions seen in clude its similarity to the geographic refer- tional diabetes: risk of recurrence in subse- this setting are more likely to mirror the ence population from which it is drawn, quent pregnancies. Am J Obstet Gynecol 2010 general population than studies conducted resulting in relatively large Hispanic, Nov;203(5):467. 11. Langer-Gould A, Albers KB, Van Den Eeden SK, in tertiary care centers or referral clinics. black, and Asian populations among Nelson LM. Autoimmune diseases prior to the Health disparities have previously been children and adults. diagnosis of multiple sclerosis: a population- attributed to the lack of health insur- In conclusion, the diversity of the KPSC based case-control study. Mult Scler 2010 20 Jul;16(7):855-61. ance. The ethnic and racial diversity of membership along with the comprehen- 12. Raebel MA, Smith ML, Saylor G, et al. The the KPSC population and the large size sive medical records make this an ideal positive predictive value of a hyperkale- of these racial and ethnic groups make population to address clinical, epidemio- mia diagnosis in automated health care data. Pharmacoepidemiol Drug Saf 2010 KPSC an ideal setting to investigate health logic, and health services-related ques- Nov;19(11):1204-8. disparities that persist despite equal ac- tions where race or ethnicity, age, and 13. Chen E, Martin AD, Matthews KA. Under- cess to care. all but the extreme ends of the income standing health disparities: the role of race and socioeconomic status in children’s health. Am J Limitations of these data include the spectrum play key roles. v Public Health 2006 Apr;96(4):702-8. well-known limitations of the US Census, 14. Krieger N, Chen JT, Waterman PD, Rehkopf a including undercounting certain minority Cut off for Eligibility for Medicaid/Medi-Cal is age DH, Subramanian SV. Race/ethnicity, gender, 18 years (as seen in Figure 1); census data, how- and monitoring socioeconomic gradients in groups and misclassification of Hispanic ever, came from aggregated tables using age 19 health: a comparison of area-based socioeco- whites as “other.” Another issue is miss- years as the cut off. To have comparable groups, nomic measures—the public health disparities age 19 was used for our characteristics data. ing race and ethnicity information among geocoding project. Am J Public Health 2003 Oct;93(10):1655-71. KPSC members, particularly in 2000. We Disclosure Statement 15. Subramanian SV, Chen JT, Rehkopf DH, Water- cannot exclude that differences in the man PD, Krieger N. Comparing individual- and The author(s) have no conflicts of interest proportion of missing values may partially area-based socioeconomic measures for the to disclose. surveillance of health disparities: A multilevel explain the observed differences between analysis of Massachusetts births, 1989-1991. Am J Epidemiol 2006 Nov 1;164(9):823-34. KPSC members in 2000 and 2010 or dif- Acknowledgments ferences between KPSC members and the 16. Smith N, Iyer RL, Langer-Gould AM, et al. This research was supported by Kaiser Health plan administrative records versus birth census population. This may be especially Permanente Direct Community Benefit Funds. certificate records: quality of race and ethnicity true for the higher proportion of blacks Kathleen Louden, ELS, of Louden Health information in children. BMC Health Serv Res among KP members. Previous research Communications provided editorial assistance. 2010 Nov 23;10:316. 17. Chen W, Petitti DB, Enger S. Limitations and investigating the quality of race and potential uses of census-based data on ethnic- ethnicity information in KPSC children References ity in a diverse community. Ann Epidemiol 1. Selby J. Why research at KP? Perm J 2005 has shown that missing race is mostly at 2004 May;14(5):339-45. Winter;9(1):10. 18. Li C, Balluz LS, Okoro CA, et al; Centers random with the exception of black chil- 2. Selby JV. Linking automated databases for for Disease Control and Prevention (CDC). dren, who have a slightly higher chance research in managed care settings. Ann Intern Surveillance of certain health behaviors and 16 Med 1997 Oct 15;127(8 Pt 2):719-24. conditions among states and selected local of having race information in their EHRs. 3. Beaverson JM, Ryu J. Quality at Kaiser Perma- areas—Behavioral Risk Factor Surveillance Another potential limitation is the nente: using the population care model. Md System, United States, 2009. MMWR Surveill reliance on geocoding to obtain a KPSC Med 2011;12(2):15,17. Summ 2011 Aug 19;60(9):1-250. 4. Carroll NM, Ellis JL, Luckett CF, Raebel MA. 19. Committee on Comparative Effectiveness Re- member’s neighborhood education and Improving the validity of determining medica- search Prioritization. Initial national priorities for income instead of self-reported education tion adherence from electronic health record comparative effectiveness research. Washing- and income. Neighborhood education and medications orders. J Am Med Inform Assoc ton, DC: The National Academies Press, 2009. 2011 Sep-Oct;18(5):717-20. 20. Raphael JL, Beal AC. A review of the evidence income may or may not exactly reflect an 5. Chen C, Garrido T, Chock D, Okawa G, for disparities in child vs adult health care: a individual’s education or income living Liang L. The Kaiser Permanente Electronic disparity in disparities. J Natl Med Assoc 2010 in that neighborhood. However, it will Health Record: transforming and streamlining Aug;102(8):684-91.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 41 credits available for this article — see page 80.

ORIGINAL RESEARCH & CONTRIBUTIONS Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class

Mary-Louise Lane-Carlson, EdD, MPH, RD, CDE; John Kumar, MD Perm J 2012 Summer;16(3):42-47

Purpose and Significance of the Study Abstract Few narrative studies have been done for patients to com- Objective: To engage patients in managing their health care municate and give meaning to their experience of TJR. The especially in relation to a total joint replacement (TJR). With majority of the literature considers patients from the health care the aging of the American population and the advent of new professional’s perspective. technology, there is an increase in TJRs. As the pendulum swings With shorter hospital stays and with an increasing number of from evidence-based medicine to patient-centered medicine, discharges to home rather than to a skilled nursing facility after presurgical education is preparing patients for their surgical TJR, there is a greater demand for presurgical education and experience. Most research studies on such education are quan- support. How best to provide this education is up for debate. titative in nature, preventing patients’ voices from being heard. Methods: Using a success case narrative design, 24 patients Implications of the Study mainly from the Kaiser Permanente Downey Medical Center Qualitative methods can help bridge the gap between sci- were interviewed regarding their pre- and postsurgical experi- entific evidence and clinical practice.4 The success case nar- ences. rative design of this study allowed patient voices to be heard Results: The study findings demonstrate that patient education, through the din of health care professionals’ pronouncements. in the form of classes, with recognition of the participants’ physi- Awareness of patient perceptions of presurgical educational cal needs, social needs, concrete supports, and psychological programs will inform patient education and enable health needs as well as the willingness of the participants to work with care professionals to develop strategies to further facilitate their health care team can promote patient engagement and return to health. improved quality of life. Conclusion: The TJR class was found to promote a sense of Theoretical Framework social connectedness and fostered participants’ independence. The study design was guided by a theory of change and a The results of this study can assist health care professionals to logic model. The theory of change is a pathway depicting steps improve their practice by designing presurgical programs to toward goals. The logic model lists the planned steps for imple- meet the needs of their patients. menting the program.5 In addition, this study integrates theories that engage patients to take more responsibility in managing their Introduction health care: adult learning theory and role theory. As the pendulum swings toward patient-centered medicine, presurgical education has been thrust to the forefront. Health Theory of Change care professionals are now expected to address the physical The model defined the dimensions and related concepts of the needs, social needs, concrete supports, and psychological needs study (Figure 1). This theory of change model shows the major of surgical patients rather than simply telling patients what to areas (steps) to be considered in reaching the goals of patient do. Patient education programs help patients improve their engagement and improved quality of life. A major benefit of decision-making skills and self-efficacy. The long-term goal is this model is that it identifies expected results, including minor for patients to take increased responsibility for their health care areas (ministeps) along the way.5 and to enjoy an enriched quality of life. Information provided to patients before total joint replace- Logic Model ment (TJR) surgery appears to have an empowering effect.1-3 The logic model (Table 1) on which the research is based re- However, few research reports have addressed patient per- flects the work of the WK Kellogg Foundation.6 The logic model spectives of the effect of preoperative educational programs. is built on the big-picture view rather than the nuts and bolts of Qualitative research based on patient perceptions can inform the program. In attempting to promote a theoretical change, this health care professionals so that they can implement effective study used a logic model that incorporates the premises of the programs. This study was approved by the Kaiser Permanente TJR Program. These include the stakeholders and the activities, (KP) Southern California and University of California Los An- such as the products, services, infrastructure, and relationships. geles institutional review boards. Short-term and long-term outcomes of the program are also

Mary-Louise Lane-Carlson, EdD, MPH, RD, CDE, is the Supervising Health Educator in the Health Education Department at the Downey Medical Center in Downey, CA. E-mail: [email protected]. John Kumar, MD, is an Orthopedist at the Downey Medical Center in Downey, CA. E-mail: [email protected].

42 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class

considered, including specific changes in attitudes, behaviors, skills, knowledge, status, and level of functioning; and overall effects on the organization and community.

Research Questions A success case narrative research design, which uses a short survey to identify individuals who are extremely successful or not successful, followed by in-depth interviews, allowed patients to give voice to their experience of TJR. The research questions were designed to offer patients the opportunity to tell their story regardless of class attendance. 1. How do patients, whether they attended a TJR class or not, describe their overall TJR experience? 2. What are the differences in perceptions, if any, between pa- tients who have taken the TJR class and those who have not, in terms of physical needs, social needs, concrete supports, and psychological needs, both before and after the surgery? 3. Whether the patients have attended the presurgical education program or not, what activities or materials do patients say helped them prepare for or recover from TJR surgery? 4. From the patients’ perspectives, whether they have attended the presurgical program or not, what can Medical Groups do to enhance quality of life after surgery? Figure 1. Detailed theory of change for total joint replacement. Shaded boxes represent major topics. Methods The gap in the literature addressed by this study is that patient voices are rarely expressed in research studies examining medi-

Table 1. Logic model for the total joint replacement class Short- and Assumptions Inputs Activities Outputs long-term outcomes Impact We expect that, if We expect that, To accomplish our set We expect that, once accomplished, these if accomplished, of activities, we have To address our accomplished, these activities will lead these activities based the program problem, we will activities will produce to the following will lead to the on the following Stakeholders accomplish the the following evidence changes in 1 to 3, following changes principles: involved: following activities: or service delivery: then 4 to 6 years: in 7 to 10 years: Patients have a right Patients, Creation of a TJR class Preoperative education Expectations for Improved health to be involved in their families, friends, that demonstrates enables patients to better short-term and long- and empowerment health care. orthopedic physical therapy skills understand and prepare term outcomes are of patients. surgeons. and gives patients an for their surgery and enhanced quality Recovering health Additional opportunity to discuss postsurgical care and of life, increased in as short a time as Medical center patient-centered their surgery and to meet their physical satisfaction with the possible is important to nursing staff. research that postsurgical care. and psychological care received from the patient and his/her will contribute Physical needs. It also gives the medical center, family. Schedule patients to health care therapists. them an opportunity to and increased to attend the class programs By providing a TJR obtain answers to their patient numbers Medical center once their surgery is designed to better class, medical centers questions in a group because of satisfied discharge scheduled (generally meet patient can assist with setting. surgical patients planners (case a month before needs. physical, social, and who remain with managers). surgery). Patients will have a say psychological needs of the institution and More presurgical in their medical care, their patients, including Offer the class 2 to 3 recommend it to classes for leading to improved reduction of anxiety times per month. family and friends. a variety of decision making and before surgery. conditions. self-efficacy. They will take more responsibility for their care and experience an enriched quality of life. TJR = total joint replacement.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 43 ORIGINAL RESEARCH & CONTRIBUTIONS Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class

cal care. Academics often consider patient-centered medicine a of Health Education, Orthopedics, Physical Medicine and fuzzy concept, because its ideological base is more developed Rehabilitation, and Utilization Management and included both than its research base.7 Hence the need for this qualitative inpatient and outpatient staff. The class is offered at least twice study focusing on patient perceptions of how to engage in the a month in English and monthly in Spanish. KP orthopedic management of their health care and to improve their quality surgeons strongly recommend that their patients attend the TJR of life after surgery. class before surgery because the class has a strong reputation of assisting patients to better manage their health care. Site Selection We are not aware of any study that has been done at KP KP, a prepaid group model health maintenance organization, to document patient perceptions of the TJR class. In an era of was selected as the site for the interviews because it is the largest budget slashing, including patient education programs, such a provider of total hip and knee replacements in the US.8 KP has qualitative research study can corroborate or refute the anecdotal a culture of preventive care, including many health education evidence and serve as a foundation to determine if there is a classes for patients. place for presurgical classes at health care institutions. The TJR class, which covers pre- and postsurgical informa- tion and physical therapy exercises, began at the Bellflower Participant Characteristics (now Downey) Medical Center in April 2007. The class was a The study sample came from KP Southern California’s popu- response to KP orthopedic surgeons’ concerns about patients lation of patients who underwent either total hip replacement approaching surgery with excessive fear and unrealistic expec- or total knee replacement surgery. The sample comprised tations. The existing educational method was to provide the English-speaking patients (non–KP employees) mostly from patient a Krames Staywell Company (Evanston, IL) pamphlet the KP Downey Service Area who preferably had either a uni- outlining the TJR procedure as well as a 1997 KP 24-minute lateral hip (total hip replacement) or knee replacement (total DVD discussing preparation for total hip or knee surgery and knee replacement) within 2009 to 2011. More than 500 patients recovery. It did not seem to be working. Development of the undergo total hip or knee replacement surgeries each year at 2-hour class was a collaborative effort of the Departments the Downey Medical Center.8 KP employees were excluded from the sample because they may have knowledge about the surgery and the KP system that Patient screening tool to determine group placementa non-KP employees typically do not. Patients who had undergone Screening questions: previous joint replacement (more than five years earlier on the 1. Did the patient optimize his/her health before surgery, such as same joint type or less than five years on a different joint type) performing presurgical exercises; reducing blood sugar, if necessary, or who elected to have bilateral replacements were included. or losing weight? Therefore, patients who had had a previous joint replacement 2. Did the patient have sufficient knowledge regarding the TJR surgery were interviewed at least one or more years after the initial sur- to reduce his/her anxiety; for example, knowing that the day after surgery s/he will be getting out of bed with the assistance of a physical gery to avoid perception bias related to the previous procedure. therapist? Although the perspectives of people who underwent bilateral 3. Did the patient have realistic goals about the TJR surgery and its replacements may differ from those of patients who had a single outcomes such as the need for a caregiver for a few days when joint replacement, their perspectives were considered valuable discharged from the hospital? because this type of surgery is becoming more prevalent.9,10 4. Was the patient able to adequately manage his/her pain? For example, Because TJR is not common in pregnant women and children, did the patient ask for pain medication in the hospital when needed, these groups were excluded. or take pain medication before physical therapy if needed? 5. Did the patient go home after hospital discharge? (Did the patient Data Collection Methods have support of family/friends at home?) To answer the four research questions, an interview ap- and proach was used. By using interviews and narrative analysis, the Did the patient attend the TJR Class? researcher looked beyond the quantitative research regarding Criteria for patient selection and placement: presurgical classes.11 • If answers to at least 3 out of the 5 numbered questions were “Yes” and the patient attended the TJR Class or Selection of Participants • If answers to at least 3 out of the 5 numbered questions were “No” Participants were selected by the following critieria: Southern and the patient attended the TJR Class or California KP membership, primarily in the Downey Service Area, • If the patient did NOT attend the TJR Class English speaking, and non-KP employee patients, who had either a If one of the above criteria was met, the patient was asked if s/he would total hip or knee replacement. Prospective participants were given be willing to participate in an UCLA doctoral research study about a recruitment letter by the discharge planner or orthopedic nurse patients’ engagement in their medical care. If the patient was interested in practitioner (NP) before they were discharged from Downey participating in the study, s/he was given an opportunity to ask questions and, Medical Center. Patients were also able to obtain an invitation if the patient was still interested in participating, an interview was scheduled. letter during their postoperative orthopedic or physical therapy a No Kaiser Permanente employees, pregnant women, or underage patients were considered. appointment. The letter asked patients to call the researcher within Only English-speaking patients were considered. TJR = total joint replacement; UCLA = University of California Los Angeles. six weeks after surgery to learn more about the study.

44 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class

Patients were screened after contacting this researcher (M class, regardless of their responses to the survey. This third L-C) by telephone and verbally agreeing to consider partici- group was small and difficult to capture, because the major- pation. The screening tool was developed with assistance ity of KP Downey Service Area patients attended the class. from the KP Downey Medical Center discharge planners, According to the Downey Service Area orthopedic NP, 70% to physical therapists, orthopedic surgeon physician champion, 80% of total hip or knee replacement patients attend the class and orthopedic NP. This group described characteristics of a (Lori Auman, NP; personal communication, 2011 Mar 23).a successful versus unsuccessful patient after TJR surgery. This Therefore, recruitment for this third group was expanded to information was corroborated by the literature. Depending include other areas of Southern California, such as Baldwin on patient responses to the screening tool, an interview was Park, Orange County, and South Bay. scheduled at least 3 weeks after surgery. At their request, 7 Although the original design of the study was to recruit patients were interviewed over the phone because of trans- an equal number of men and women patients who had TJR portation difficulties or work-related issues. The average surgery, early on this researcher observed that sex was not time from the surgery (hip or knee) to the interview was 13 associated with perceptions. The type of joint replacement weeks, excluding the one outlier. Because of the difficulty of seemed to have a greater influence. This observation was sup- finding eligible patients who had not taken the TJR class, one ported by the literature. In the 74 studies reviewed by Ethgen patient who was interviewed about 2 1/2 years after surgery and colleagues, patients who had a total hip replacement ap- was included. This researcher was interested in participant peared to recover more functionality sooner.12 Therefore, at perceptions of their surgical experience, not in quantifying least 4 patients for each type of joint replacement (regardless their behavior. Therefore, the time frame for postsurgical of sex) and for each of the three constructs were interviewed. interviews was not a significant consideration. Twenty-four patients were asked to recount how they found Patients who attended the TJR class were assigned to 1 meaning in their surgical experience. Figure 2 illustrates of 2 groups on the basis of whether they had answered placement of recruited study participants. “yes” to at least 3 questions or “no” to at least 3 questions on the screening tool (see Sidebar: Patient Screening Tool Interview Method to Determine Group Placement). During screening, patients Interviews were scheduled with eligible patients. The were asked questions including if they had optimized their interview consisted of open-ended questions that allowed health before surgery, eg, by losing weight or by reducing patients to express their views and reflections of their blood sugar level if needed; and if they believed that they TJR surgery, including preparation and recovery. Probing had realistic goals about the surgery and its outcomes. These questions were asked only to further understand patient 2 groups represented patients who had been successful with perceptions, especially regarding decision-making ability, their surgery and patients who were not so successful, as self-efficacy, responsibility for managing their health care, identified with the patient survey. The third group, a com- quality of life, and other means of enhancing quality of life parison group, comprised patients who did not attend the TJR after surgery.

Figure 2. Flow chart of study participants. TJR = total joint replacement.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 45 ORIGINAL RESEARCH & CONTRIBUTIONS Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class

Peer Review and after surgery. Most study participants had a concrete sup- Once the data had been analyzed, the researcher’s interpre- port, such as a caregiver, in place before the surgery. Anxiety tations were reviewed by the orthopedic NP. The orthopedic was predominant in those who had a knee replacement and NP works closely with orthopedic patients before and after TJR did not attend the TJR class. Pain management issues were surgery. Hence, the knowledgeable NP was able to verify patient associated with a perception of poor quality of life and de- perceptions or challenge researcher assumptions. Although tri- pression before and after the surgery. angulation is not a foolproof strategy to establish the credibility of a study, it reduces the risk of relying on only one method Patient Education of data collection.13 Patient education, in the form of activities or materials accessed before or after surgery, was associated with better Results outcomes. As one participant noted, “Information can’t hurt.” The 24 study participants explained their overall experience Another stated, “I mean it’s very personal having your hip of TJR surgery in a variety of ways. All but 1 study participant (a replaced. So I felt like I owed it to myself to be informed. You woman hip-replacement patient who did not attend the class) know the old saying that knowledge is power.” The materials expressed in various degrees their satisfaction with the benefits participants used to obtain information regarding recovery of the surgery and the need for individual responsibility. The were similar to those they used to prepare for surgery. The major benefits were increasing functionality of the new joint, major difference was that after surgery, patients asked physi- reduced pain, and fewer limitations in daily activities. Before cal therapists questions instead of their orthopedic surgeon. surgery, a participant stated, “I felt handicapped. The pain was A participant pointed out, “I referred to all that information so intense I felt like I couldn’t do anything.” One participant that I have been given [referring to the TJR materials] several stated, “When I can bicycle, then I’ll be back to normal.” Study times to see if I was where I should be at that point [after participants prepared themselves mentally and physically for surgery]. With everybody saying you’re doing just great, you their surgery by a variety of methods, including the TJR class, know, for the amount of time. It’s hard to appreciate that which provided a feeling of social connectedness when you’re hurting.” and stressed the importance of being independent, Pain talking with family and friends who had already Patient Perspectives management had the surgery, surfing the Internet, viewing the Whether they attended the TJR class or not, study participants issues were KP presurgical DVD, talking extensively with the made several suggestions for improving outcomes and patient en- associated with orthopedic surgeon, reviewing the Krames Staywell gagement during surgery preparation, hospital stay, and recovery. a perception pamphlet, and doing physical activity before the Their suggestions included pain management issues and post- of poor quality surgery. As one study participant commented, “It [the surgical exercises to be incorporated into educational materials. of life and TJR class] prepares you. It wakes you up to more or Although the participants listed a variety of preferred educational depression less what you have to know to prepare yourself [for] methods to enhance their experience before or after surgery, the the challenges.” Another person said, “… initially top five were, in order of preference, the TJR class, the Krames before and after you feel alone going into surgery … . Once you Staywell pamphlets on total hip or knee replacement surgery, the the surgery. take the class, you see so many other people going KP presurgical DVD, talking with orthopedic surgeons and physi- through the surgery.” Another participant noted, cal therapists, and talking with people who had undergone TJR “Yeah, just being with a bunch of people that are going to be surgery. Many participants mentioned more than one method. As going through the same thing with you is very comforting.” one participant stated, “I just had a lot of really neat people that During recovery, study participants relied on assistance from kind of came into my path throughout this experience.” family and friends, information obtained during the TJR class, and answers provided by physical therapists. Peer Review The orthopedic NP reported that these findings corresponded Patient Needs to what she had observed and experienced in hospital and clinic This study uncovered many different perceptions regard- settings. Her vast professional experience and insight into the ing patient needs. In terms of physical needs, most patients, expectations and concerns of patients undergoing TJR validated irrespective of study category, increased their exercise after these findings. surgery rather than before surgery. This study participant’s comment captured the majority of participants’ feelings about Discussion exercising after surgery: “Of course, I am doing my exercise The findings of this study indicate that a multidisciplinary where I can lay in bed and stretch my knee. I am getting a TJR class can foster a sense of social connectedness and in- little better … . I know it is not going to get better just ly- dependence among surgical patients undergoing total hip or ing there and watching TV.” Most were able to manage their knee replacement. In addition, it is important to use qualitative chronic diseases both before and after surgery. However, the methods in health care research and to move forward with majority of participants had difficulty managing pain before patient-centered rather than evidence-based medicine. surgery but not so much after surgery. Support from family Presurgical classes promote beliefs among patients that they was more prevalent than support from friends, both before are not alone and that others will be undergoing similar surgical

46 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS Engaging Patients in Managing Their Health Care: Patient Perceptions of the Effect of a Total Joint Replacement Presurgical Class

procedures. Patients are more confident in their ability to recover a Orthopedic Nurse Practitioner, Kaiser Permanente Downey Medical Center, from surgery, with enhanced independence, if they participate Downey, CA. in a presurgical class that provides essential information about preparing for and recovering from surgery and that (if possible) Disclosure Statement The author(s) have no conflicts of interest to disclose. engages patients in practicing related skills before their surgery. When educational needs are met before surgery, patients are Acknowledgments more engaged in their medical care and sense an improvement The authors wish to acknowledge the technical support of Christina in their quality of life. Christie, PhD, University of California Los Angeles Graduate School of Because of the multidisciplinary character of the team that Education and Information Studies; and the peer review support of Lori developed and taught the TJR class, which the literature sup- Auman, MSN, FNP, Kaiser Permanente Downey Medical Center. ports,14-16 the study participants received consistent messages Leslie E Parker, ELS, provided editorial assistance. throughout their care and learned from specialty practitioners. Surgery is stressful enough without patients receiving contra- References 1. Dorr LD, Chao L. The emotional state of the patient after total hip and knee dictory messages from their health care team. With accurate arthroplasty. Clin Orthop Relat Res 2007 Oct;463:7-12. knowledge and understanding of how to prepare for and 2. Pownall E. Using a patient narrative to influence orthopaedic nursing care in recover from TJR, the study participants had more control over fractured hips. Journal of Orthopaedic Nursing 2004 Aug;8(3):151-9. their health care. 3. Suhonen R, Leino-Kilpi H. Adult surgical patients and the information provided to them by nurses: a literature review. Patient Educ Couns 2006 Study participants who attended the TJR class noted that it was Apr;61(1):5-15. an integral part of their preparation and recovery from surgery. 4. Green J, Britten N. Qualitative research and evidence based medicine. BMJ As health education budgets become tighter and budget alloca- 1998 Apr 18;316(7139);1230-2. 5. Evaluation tools for racial equity [monograph on the Internet]. Conshohock- tions demand data-driven decision making, patient satisfaction en, PA: Center for Assessment and Policy Development; 2005 [cited 2010 needs consideration. Satisfied patients communicate with family May 20]. Available from: www.evaluationtoolsforracialequity.org [click on members and friends about their experience, promoting growth “tip sheet”]. 6. Logic model development guide: Using logic models to bring together plan- of the Medical Group’s patient base. ning, evaluation, and action: logical model development guide [monograph Lastly, patient-centered medicine, which focuses on the indi- on the Internet]. Battle Creek, MI: WK Kellog foundation; 2004 January vidual patient’s concerns rather than an evidence-based process, [cited 2012 May 29]. Available from: www.wkkf.org/knowledge-center/re- sources/2006/02/WK-Kellogg-Foundation-Logic-Model-Development-Guide. needs to be advanced. Patient participation in health care, such aspx [click on Download Now]. as presurgical class attendance, is important. This premise is 7. Bensing JM, Verhaak PF, van Dulmen AM, Visser AP. Communication: the supported by the findings of this study: the TJR class provided royal pathway to patient-centered medicine. Patient Educ Couns 2000 Jan;39(1):1-3. study participants with the knowledge and skills they needed to 8. Total joint replacement registry [monograph on the Internet]. Oakland, make decisions and manage their surgical experience, leading CA: Kaiser Permanente; 2008 [cited 2012 Jul 5]. Available from: http:// to an enriched quality of life. implantregistries.kp.org/Registries/Total_Joint.htm [password protected]. 9. Lynch NM, Trousdale RT, Ilstrup DM. Complications after concomitant bilateral total knee arthroplasty in elderly patients. Mayo Clin Proc 1997 Conclusion Sep;72(9):799-805. In the context of surgical advances, patient perspectives are 10. March LM, Cross M, Tribe KL, Lapsley H, Courtenay BG, Cross MJ, et al; Arthritis COST Study Project Group. Two knees or not two knees? Patient sometimes neglected. The findings of this study suggest that costs and outcomes following bilateral and unilateral total knee joint patients’ experience improved quality of life before and after replacement surgery of OA. Osteoarthritis Cartilage 2004 May;12(5):400-8. surgery when an educational program encourages them to be 11. Josselson R, Lieblich A (editors). Interpreting experiences: the native study of lives, Vol 3. Thousand Oaks, CA: Sage Publications; 1995. a part of their medical team and engages them in their medical 12. Ethgen O, Bruyère O, Richy F, Dardennes C, Reginster JY. Health-related care. As Albert Schweitzer, MD, German/French philosopher and quality of life in total hip and total knee arthroplasty. A qualitative and physician, is purported to have said, “Every patient carries her systematic review of the literature. J Bone Joint Surg Am 2004 May;86- A(5):963-74. or his own doctor inside.” Our job as health care professionals 13. Maxwell, JA. Qualitative research design: An interactive approach. Second is to release the physician within our patients. Edition, Vol 42. Thousand Oaks, CA: Sage Publications; 2005. 14. Adeline CYM. Patients’ perspectives on the pre-operative education pro- Practice Implications gramme. Singapore General Hospital Proceedings 2003;12(2):64-71. 15. Prouty A, Cooper M, Thomas P, et al. Multidisciplinary patient education The American population is living longer with the expectation for total joint replacement surgery patients. Orthop Nurs 2006 Jul- of a more active lifestyle. Additionally, TJRs are being done on a Aug;25(4):257-61. younger population because of technological advances. There- 16. Saufl N, Owens A, Kelly I, Merrill B, Freyaldenhousen LL. A multidisciplinary approach to total joint replacement. J Perianesth Nurs 2007 Jun;22(3):195- 7,8 fore, research in the area of joint replacement is expanding 206. Erratum in: J Perianesth Nurs 2007 Dec;22(6):448. to assist patients to return to their lifestyles sooner. In addition, as the medical field shifts from evidence-based medicine to patient-centered medicine, patients are wanting to participate more in medical decision making. Areas for further research identified by this study are pain management, methods of pa- tient education, and success or lack of success in patients who do not take a presurgical class. The role of caregivers should also be explored. v

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 47 soul of the healer

“Star Ferry, Hong Kong, 1961” oil on canvas 14” x 18”

J Richard Gaskill, MD

Exotic British Crown Colony Floating restaurants and shops Boat people of Aberdeen Tiny blip on the south China coast Children begging on shore On their sampans and junks Three dozen years on the lease Cluttered open-air markets Refugee shacks in the hills Before Vietnam Laundry fluttering above Outsiders beware— Mao’s Cultural Revolution Live fowl hanging from poles The Wan Chai rooftops And the major building boom. Caged puppies trembling in fear. And Walled City of Kowloon.

Merchant ships of all flags Lovely women in cheongsams In the New Territories In Victoria Harbour Businessmen in dark suits Far from the bustle Where Star Ferries continually steam Young sailors on leave Small villages and farms Ten cents Hong Kong, 1½ US Chinese workers in droves Water buffalo in fields Photographs of drowned bodies An occasional neck mass And China ominously looms On the landings. Postnasal cancer with mets?a Beyond the barbed wire. v

Uniformed officers in shorts British English in shops Direct traffic to the left Where bargains abound On Nathan, Gloucester, and Queens Stereos, cameras, and pearls a Cantonese people have a high Rolls-Royces and rickshaws Illicit ivory and gems incidence of nasopharyngeal And double-deck trams Suits and shoes in two days carcinoma, which often presents Bicycles piled high with goods. Custom shirts while you wait. with cervical metastases.

Dr Gaskill is a retired Otolaryngologist from the Santa Clara Medical Center. In 1961, he was a young Naval Medical Officer on board a troop ship in the South China Sea. This painting and poem recall fond memories of a week of R&R in Hong Kong.

48 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 credits available for this article — see page 80.

ORIGINAL RESEARCH & CONTRIBUTIONS Special Report A Framework for Making Patient-Centered Care Front and Center

Sarah M Greene, MPH; Leah Tuzzio, MPH; Dan Cherkin, PhD Perm J 2012 Summer;16(3):49-53

the electronic medical records held in one health care setting Abstract are often not shareable or interoperable,6 further contributing to The concept of patient-centered care has received increased fragmentation. Hence, the absence of a true health care system attention in recent years and is now considered an essential aspi- has been detrimental to patient centeredness and continues to ration of high-quality health care systems. Because of technologic present obstacles to making care more patient centered. advances as well as changes in the organization and financing of Nevertheless, we believe that efforts to make the health care care delivery, contemporary health care has evolved tremendously environment more responsive to patients’ needs, preferences, since the concept of patient-centeredness was introduced in the and values will be most likely to succeed if they are based on late 1980s. Historically, those advocating patient-centered care a clear understanding of the full range of factors that promote have focused on the relationship between the patient and the or impede patient-centered care—that is, making patient- physician or care team. Although that relationship is still integral, centeredness a “systems property.”7 Thus, given the changes changes to the health care system suggest that a broader range of in contemporary medical care over the past two decades, it is factors may affect the patient-centeredness of health care experi- worthwhile to revisit the opportunities for increasing patient- ences. A multidimensional conceptualization of patient-centered centered care. care and examples from our health care system illustrate how In this article, we offer a multidimensional characterization clinical, structural, and interpersonal attributes can collectively of patient-centered care that could be applied to a variety of influence the patient’s experience. The proposed framework is care delivery systems and settings. We describe attributes within designed to enable any health system to identify ways in which each of three dimensions of health care that can affect patients’ care could be more patient-centered and move toward a goal of experiences, for better or for worse. Our goal is to provide a making it a “systems property.” framework and real-world examples to readers interested in improving the patient-centeredness of their health care organiza- Introduction tions. We use insights from the literature and illustrative examples Patient-centeredness has long been recognized as a desirable collected from Group Health Cooperative (Group Health), an attribute of health care. Proponents have described patient- integrated health care delivery system in Seattle, WA, to show centered care as that which honors patients’ preferences, needs, how the attributes of patient-centered care can be embraced at and values; applies a biopsychosocial perspective rather than a a systems level. purely biomedical perspective; and forges a strong partnership between patient and clinician.1,2 Until recently, most studies What Is Patient-Centered Care, of patient-centered care and its impact on care processes and and Why Is It Important? outcomes were largely focused on the patient’s relationship The Institute of Medicine8 has defined patient-centered care to his or her clinician or care team.3,4 However, much of what as “care that is respectful of and responsive to individual patient a patient experiences occurs outside of the encounter in the preferences, needs, and values.” Following a series of focus physician’s office. Interactions between patients and care clini- groups with patients, iterative feedback from research col- cians have expanded beyond the in-office visit to include virtual leagues, and consultation with national advisers, we modified this medicine, peer support groups, and a range of information and definition slightly to describe patient-centered care as care that communication technologies to support care. Moreover, the “honors and responds to individual patient preferences, needs, clinician’s or team’s ability to provide patient-centered care is values, and goals.” It is through this lens that we describe why affected by the context in which they operate; for example, a and how patient-centered care should be an imperative for all large hospital, small private practice, freestanding urgent care health care systems, whether that “system” is a solo practitioner, a facility, or integrated multispecialty group practice. large multispecialty group practice, or a federally qualified health As a result of changes to the notion of a care visit and the center providing care to underserved populations. proliferation of care delivery arrangements, much of medical Several important arguments for making care more patient care and coverage in the US is fragmented; patients may visit a centered have been offered. Patient-centered care results in im- number of clinicians in different clinics or systems, especially for proved care processes9 and health outcomes, including survival.10 complex and chronic conditions, and continuity and coordina- Two systematic reviews identified promising patient-centered tion across clinicians and settings is often lacking.5 Moreover, interventions directed at patients, clinicians, or both, which

Sarah M Greene, MPH, is Director of Strategy and Business Development for Group Health Cooperative in Seattle, WA. E-mail: [email protected]. Leah Tuzzio, MPH, is a Project Manager at Group Health Research Institute in Seattle, WA. E-mail: [email protected]. Dan Cherkin, PhD, is a Senior Investigator at Group Health Research Institute in Seattle, WA. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 49 ORIGINAL RESEARCH & CONTRIBUTIONS A Framework for Making Patient-Centered Care Front and Center

resulted in improved communication and health outcomes.3,7 ment, measurement and analysis, and patient safety—shows that Patient-centered care is the right thing to do.11 In fact, it is hard this is indeed a topic of interest across our system. The group to imagine how care that has not been patient centered could provides a forum for formal and informal interactions with inter- ever have been justified. There is a business case for patient- nal colleagues as well as outside colleagues who are regularly centered care, on the basis of evidence that patients who report invited to share their expertise, and it fosters improvements to stronger relationships with their clinicians undergo fewer tests internal care delivery initiatives as well as research projects. Top- and are less inclined to pursue legal action if a medical error is ics have included measuring patient experience in real-time, best handled in a sensitive, patient-centered fashion.12 Finally, it has practices for patient advisory boards, and user-centered design been argued that clinicians and their teams may benefit from a methodology, among many others. Medical Directors are among patient-centered orientation by knowing that they have more the regular interest group participants. As a marker of widespread effectively addressed the needs of their patients.13,14 Collectively, leadership support for this work, patient-centered care was a fea- these studies demonstrate that patient-centered approaches can tured topic of Group Health’s annual internal conference targeted lead to improved healing relationships. to all personnel in our integrated group practice (approximately 500 participants) in 2010 and 2011. The conference is a unique Our Approach to Studying and Improving opportunity to describe high-profile organizational initiatives and Patient-Centered Care to disseminate key messages to medical leaders and frontline staff Group Health coordinates health care and coverage for more simultaneously. Showcasing patient-centered care has spurred than 660,000 individuals in Washington state and operates as a greater participation in the interest group. consumer-governed nonprofit system. Nearly two-thirds of mem- The Group Health Cooperative Human Subjects Research bers receive care in Group Health-owned and operated medical Committee reviewed and approved this manuscript. However, no centers, and promoting patient-centered care is an organizational information on human subjects is included in this commentary. guiding principle. Nevertheless, the complexity of patient-centered care in a large system—where every patient, clinician, team, and What Are the Dimensions and Attributes encounter varies across time and place—means that embedding of a Patient-Centered Health System? patient-centeredness into all daily work remains challenging. The literature on patient-centered care spans a broad range of In 2009, Group Health Research Institute, the research arm of subtopics, including physician communication training, patient- Group Health, initiated the Patient-Centered Care Interest Group to centered health information technology, the built environment serve as a venue for stakeholders from across the organization to (the spaces and products in health care facilities), and strategies discuss timely topics, articles, projects, and related initiatives. The for measuring patient-centeredness. For this reason, Bensing15 diversity of departments that are represented—including research, describes patient-centered care as a “container concept” that clinical care (primary, specialty, and nursing), health plan product envelops several different attributes and behaviors. It is useful development, organizational communication, quality improve- to acknowledge and differentiate patient-centeredness from

Table 1. Dimensions and attributions of a patient-centered health care system Interpersonal dimension (relationship) Clinical dimension (provision of care) Structural dimension (system features) Communication Clinical decision support Built environment Begins with listening Ensures shared decision making on Provides calm, welcoming space Creates a fabric of trust the basis of best-available evidence Accommodates patient, clinician, Promotes clear, empathic communication, coupled with patient preferences and family needs tailored to patients’ needs and abilities Supports self-management Emphasizes easy “way-finding” and Welcomes participation of family, friends, navigation through the system and caregivers Knowing the patient Coordination and continuity Access to care Uses knowledge of patient as a whole and Manages care transitions and Eases appointment-making process unique person for effective interactions seamless flow of information— Minimizes clinic wait times Finds common ground on the basis of whether for a broken arm or life- Payment system accommodates patient preferences altering illness patients’ circumstances Facilitates healing relationships Coordinates with community Coordinated, consistent, efficient resources Importance of teams Types of encounters Information technology Ensures responsiveness by entire care Accommodates virtual visits (phone, Supports patient and clinician before, team to patient and family needs e-mail) as well as in-office visits during, and after encounters Recognizes that actions of both clinicians Reimbursement structure supports Tracks patients’ preferences, values, and staff can influence perceptions of care range of encounters that meet and needs dynamically patients’ varied needs Provides self-management tools and information

50 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS A Framework for Making Patient-Centered Care Front and Center

the patient-centered medical home model, which has gained endeavoring to fully embed patient-centeredness into the culture traction in primary care as a practice model and is predicated and fabric of the organization. on how a practice is organized to better support the patient’s Table 2 presents examples of specific changes we have made experience. With or without adoption of the patient-centered and how these changes tie to the attributes in Table 1. Lead- medical home model, care can be very patient centric, or not. ership support is imperative, and Group Health leaders have For example, a clinic or practice may incorporate features in endorsed specific tactical changes and embraced the philosophy the evidence-based care plans and same-day appointments, or of patient-centered care. Still, culture change is a dynamic and other operational improvements, but one unpleasant interaction living process, especially in a large organization, and ours is a with a team member can leave its imprint—a perception that journey in progress. the patient was not put at the center. Thus, patient-centeredness In the course of reviewing the literature to identify key at- is a quality that must be earned time after time, encounter by tributes, we also identified two fundamental tenets of patient- encounter, and it is fragile, even in a medical home setting. centered care that were reflected in all of the attributes. The Within Group Health, we sought to make the overarching first isconsistency. Whether the patient is communicating with a concept of patient-centered care more concrete and operational physician or a radiology technician or a claims adjuster, whether by identifying attributes of patient-centered care that recur in being seen for a lifelong condition or an acute illness, whether the literature, and organizing them into the three dimensions the “visit” is in a clinic or via e-mail, and whether the patient’s that we believe must be present and integrated to make patient- preferences are stable or change according to their health sta- centered care part of the culture of care. Table 1 shows the tus, the patient should be able to rely on the health system to attributes in these three dimensions: interpersonal, clinical, and consistently provide a patient-centered experience. structural. We have organized these dimensions to be applicable, The second underlying tenet is trust. Does the patient trust that and the attributes to be actionable, in any health care setting. the clinician is fully present and listening with the patient’s needs These attributes build on and extend previous conceptualiza- in mind? Also, the patient and clinician must be able to trust tions of patient-centered care1,2,16 by explicitly acknowledging the system on which the clinician relies to support high-quality, the role of the entire health care team, emphasizing new modes patient-centered care. Can the patient trust that the environment of patient-clinician interactions, and characterizing aspects of in which s/he is receiving care is safe and committed to error- the health care system beyond the built environment. Indeed, free care?17 Can the patient and clinician trust that someone is many of these attributes are part of the medical home model, looking out for the patient’s interests as s/he transitions between but a practice model and a mindset are not synonymous. Group health care settings? Can the patient trust the skills of the medical Health has adopted the medical home model systemwide and is assistant who is inserting an intravenous catheter? All of these

Table 2. Patient-centered changes made at Group Health Cooperative by related dimensions Patient-centered feature Related dimension Online self-management program introduced to accommodate growing demand for peer-support Clinical workshop for individuals who could not attend in-person version of workshop Previsit outreach to patients by medical assistants to ensure that encounter focuses on most Clinical important problem, and that patients bring relevant history and medications to visits Direct access to specialty care clinicians Clinical Secure e-mail access to clinician for virtual visit Clinical Smartphone “app” to give patients mobile access to their medical record, ability to reach their Clinical clinician or 24/7 nurse service, find locations, check symptoms, and view wait times for laboratory and pharmacy services Regular surveys of patient experience, with feedback to individual clinicians and comparative Interpersonal data across facilities Communication training for new clinicians, and retraining as needed on the basis of patient Interpersonal ratings of clinician communication Patient-centeredness training for nurses caring for complex, chronically ill patients Interpersonal Electronic medical record tracks patient preference for “what I’d like to be called” Structural Integrated electronic medical record and participation in regional “Care Everywhere” program Structural to promote continuity and coordination within and outside of Group Health system Way-finding signs and maps improved following ethnographic study of how patients see Structural and interpret signage in facilities New clinic designed with input from patients to improve flow, decrease wait times, and colocate Structural frequent services Billing statements modified following input from patients about unclear elements Structural Design of new clinics included patients as part of the team with clinicians, nurses, technicians, Structural and architects to collaboratively address “the ideal patient experience”

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 51 ORIGINAL RESEARCH & CONTRIBUTIONS A Framework for Making Patient-Centered Care Front and Center

questions require both a system-level commitment to organiz- prominent in the health care improvement literature.19-21 These ing care processes to meet patients’ needs, preferences, and attributes are more important than ever, considering today’s goals, and a philosophical commitment on the part of all of the diverse and increasingly fragmented health care delivery land- participants in the health care setting. scape. Recent innovations in delivery system design, notably In the next section, we explore the dimensions and attri- virtual medicine and redesign of primary care around the medi- butes in depth, and provide examples of how they are being cal home model, lend themselves particularly well to ensuring applied at Group Health. In some instances, the examples a patient-centered experience. By its very name and nature, the may evoke more than one dimension, again illustrating that patient-centered medical home model is intended to more fully patient-centeredness has a permeable quality and “contains” support clinicians in delivering coordinated care across settings many aspects.15 and types of encounters. For care to be fully patient centered, it should allow patients the option of interacting with their Interpersonal Dimension clinician or care team without visiting a facility. Similarly, the This dimension unites several well-studied aspects of pa- system should have a routine approach for equipping patients tient-centered care: communication, knowing the patient, and with the skills needed to prevent or manage illness outside of acknowledgment that all members of a team affect the team’s the clinician’s office and should be able to connect patients with relationship with the patient. Effective communication must community-based agencies that provide social, instrumental, or begin with active listening—empathically attuning to both the emotional support. patient’s medical and nonmedical needs (eg, values, fears, life Among the patient-centered improvements that Group Health events)—that can have a major impact on both the process has made in the clinical dimensions are: and outcomes of the interaction. Effective communication will • Leveraging health information technology to extend care op- facilitate the ability for patient and clinician to find common tions beyond the office visit, via secure e-mail to clinicians, ground.4,18 It is often critically important to involve the patient’s a smartphone “app,” and online health risk assessment with friends, family, and/or caregivers, especially in times of stress personalized feedback (eg, acute events or serious illness) or when family support is • Longer in-person appointments important for achieving clinical goals (eg, management of chronic • Ability to self-refer to medical specialists disease). Defining the team to include both clinical and service • Both online and in-person peer support programs for persons providers can also contribute to patient-centeredness of care. with chronic illnesses Sevin and colleagues14 note that becoming a patient-centered, • For preference-sensitive conditions, (eg, bariatric surgery, highly functional care team takes deliberate work to prostate cancer treatment), a formal shared decision-making define roles and responsibilities, and to ensure that program has been established to give patients and clinicians … all everyone has the necessary information to meet the a foundation from which to carefully explore trade-offs when members of needs of the patient. Moreover, placing responsibil- more than one clinical option may be available. a team affect ity on everyone who interacts with a patient helps the team’s create and reinforce a culture of caring. Everyone Structural Dimension relationship on a team or in a system must recognize that one The built environment is outmoded in many ways. Many with the unpleasant or uncaring encounter can have a last- existing facilities were designed to facilitate the clinician’s patient. ing negative impact on the patient and makes the experience and navigation; signage is often in medical jargon, lives of coworkers who have to deal with an upset as is paperwork (claim forms, test results, prescription instruc- patient more difficult. tions). The nurses’ station in a hospital ward is often physically Group Health has undertaken several initiatives in recent years distant from patient rooms, which may contribute to patients to improve this interpersonal dimension: feeling isolated. Patients are physically moved to procedures • Enriching its physician- and nurse-training programs to focus or services, rather than having the procedure or service per- on the importance of interpersonal communication both with formed wherever they are. System-level investments can go a patients and between clinicians long way toward creating a more humanized care experience, • Enhancing engagement among all employees through front- and principles for improving the health care environment have line improvement workshops that bring entire teams together been articulated in the Planetree Model, which aims to shift to identify strategies to improve care the health care environment from one designed around the • Surveying patients regularly about their care experience, and convenience of clinicians to one centered around the patient, using results to identify opportunities to improve communica- with a more personalized and holistic approach.22 Design of tion at the individual clinician level Group Health’s newest clinical facilities was undertaken with • Actively piloting patient advisory boards that tap into specific extensive input from its consumers as well as care delivery ways to improve ancillary clinical departments within our personnel, with the goals of making clinic visits more efficient system, for example, pharmacy services. and less stressful, by colocating patient services (laboratory, pharmacy, imaging), and developing more comfortable ex- Clinical Dimension amination rooms. Many attributes in the clinical dimension—particularly decision Similarly, access to care—where clinic wait times are mini- support, coordination, care management, and continuity—are mized, appointment making is efficient, and payment structures

52 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 ORIGINAL RESEARCH & CONTRIBUTIONS A Framework for Making Patient-Centered Care Front and Center

accommodate patients’ ability to pay—can greatly enhance Portions of this research were presented at the following meetings held patients’ experiences. Making patients wait 40 minutes to be in Seattle, WA: Group Health Cooperative Primary Care Leadership Forum seen, while feeling unwell or being around others who are in November 2010, Annual HMO Research Network Conference in March 2011, and AcademyHealth Annual Research Meeting June 13, 2011. ill, is likely to have negative consequences for the rest of Kathleen Louden, ELS, of Louden Health Communications provided the encounter for both the patient and the clinical team who editorial assistance. must then deal with an upset patient. Finally, information technology innovations in health care, if developed and used References properly, hold tremendous value and promise and have the 1. Stewart M. Towards a global definition of patient centred care. BMJ 2001 potential to greatly enhance the patient-centeredness of care, Feb 24;322(7284):444-5. 2. Mead N, Bower P. Patient-centredness: a conceptual framework and review especially as the “meaningful use” provisions of electronic of the empirical literature. Soc Sci Med 2000 Oct;51(7):1087-110. health record adoption come to fruition. These provisions are 3. Griffin SJ, Kinmonth AL, Veltman MW, Gillard S, Grant J, Stewart M. designed to help clinicians better know their patients and use Effect on health-related outcomes of interventions to alter the interaction between patients and practitioners: a systematic review of trials. Ann Fam this knowledge to inform and improve care. As an example, Med 2004 Nov-Dec;2(6):595-608. increased use of electronic health records can dynamically 4. Stewart M, Brown JB, Donner A, et al. The impact of patient-centered care capture and store a range of patient information around needs, on outcomes. J Fam Pract 2000 Sep;49(9):796-804. 5. O’Malley AS, Cunningham PJ. Patient experiences with coordination of goals, values, and preferences. Group Health regularly adds care: the benefit of continuity and primary care physician as referral source. such features to its electronic medical record system. Another J Gen Intern Med 2009 Feb;24(2):170-7. information technology-enabled enhancement at Group Health 6. Blumenthal D, Tavenner M. The “meaningful use” regulation for electronic is the incorporation of laboratory and pharmacy wait times by health records. N Engl J Med 2010 Aug 5;363(6):501-4. 7. Rao JK, Anderson LA, Inui TS, Frankel RM. Communication interventions clinic, built into the smartphone application. make a difference in conversations between physicians and patients: a systematic review of the evidence. Med Care 2007 Apr;45(4):340-9. Conclusion 8. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. 23 Bergeson and Dean observed that “well-designed support Washington, DC: National Academies Press; 2001. and delivery systems are essential if care is going to center 9. Greenfield S, Kaplan SH, Ware JE Jr, Yano EM, Frank HJ. Patients’ participa- reliably and consistently on patients’ needs and priorities.” We tion in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med 1988 Sep-Oct;3(5):448-57. have provided a new conceptualization of patient-centered 10. Meterko M, Wright S, Lin H, Lowy E, Cleary PD. Mortality among care by identifying pertinent attributes in the interpersonal, patients with acute myocardial infarction: the influences of patient-cen- clinical, and structural dimensions of health care, along tered care and evidence-based medicine. Health Serv Res 2010 Oct;45(5 Pt 1):1188-204. with concrete examples of ways in which those wishing to 11. Epstein RM, Fiscella K, Lesser CS, Stange KC. Why the nation needs a improve the patient-centeredness of their care can intervene policy push on patient-centered health care. Health Affairs (Millwood) 2010 at various levels, using this actionable framework. However, Aug;29(8):1489-95. 12. Levinson W, Roter DL, Mullooly JP, Dull VT, Frankel RM. Physician-patient because the attributes typically do not exist in isolation, communication. The relationship with malpractice claims among primary all have the potential to affect a patient’s care experience. care physicians and surgeons. JAMA 1997 Feb 19;277(7):553-9. Hence, a comprehensive, integrative, consistent approach 13. Wasson JH, Anders SG, Moore LG, et al. Clinical microsystems, part 2. Learning from micro practices about providing patients the care they want to making patient-centered care a system property is most and need. Jt Comm J Qual Patient Saf 2008 Aug;34(8):445-52. likely to succeed. 14. Sevin C, Moore G, Shepherd J, Jacobs T, Hupke C. Transforming care teams Although the goal of delivering an optimal patient-centered to provide the best possible patient-centered, collaborative care. J Ambul Care Manage 2009 Jan-Mar;32(1):24-31. care experience may seem aspirational, the mounting pres- 15. Bensing J. Bridging the gap. The separate worlds of evidence-based sures on health care settings make this a particularly oppor- medicine and patient-centered medicine. Patient Educ Couns 2000 tune time to explore the ability of patient-centered innovations Jan;39(1):17-25. 16. Robinson JH, Callister LC, Berry JA, Dearing KA. Patient-centered care and to improve care processes and health outcomes. A parallel adherence: definitions and applications to improve outcomes. J Am Acad may be drawn from the literature on improving reliability in Nurse Pract 2008 Dec;20(12):600-7. health care. Just as each patient should reasonably expect 17. Baker NJ, Crowe VL, Lewis A. Making patient-centered care reliable. J care that is free from errors, there is every reason to set a Ambul Care Manage 2009 Jan-Mar;32(1):8-15. 18. Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Vonkorff M. similarly ambitious expectation that every patient will not only Finding common ground: patient-centeredness and evidence-based chronic receive reliable and error-free care but also will consistently illness care. J Altern Complement Med 2005;11 Suppl 1:S7-15. receive patient-centered care—in any health care setting, 19. Wagner EH, Austin BT, Von Korff M. Organizing care for patients with chronic illness. Milbank Q 1996;74(4):511-44. every time. We have the tools, the business case, and the 20. Haggerty JL, Reid RJ, Freeman GK, Starfield BH, Adair CE, McK- evidence base—now we need the will. v endry R. Continuity of care: a multidisciplinary review. BMJ 2003 Nov 22;327(7425):1219-21. 21. Coleman EA, Parry C, Chalmers S, Min SJ. The care transitions interven- Disclosure Statement tion: results of a randomized controlled trial. Arch Intern Med 2006 Sep The authors are employees of Group Health Cooperative. 25;166(17):1822-8. They have no other conflicts of interest to disclose. 22. Frampton SB. Creating a patient-centered system. Am J Nurs 2009 Mar;109(3):30-3. 23. Bergeson SC, Dean JD. A systems approach to patient-centered care. JAMA Acknowledgments 2006 Dec 20;296(23):2848-51. This study was funded by a grant from Group Health Research Institute, Seattle, WA.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 53 REVIEW ARTICLE Women in Surgery: Bright, Sharp, Brave, and Temperate

Elisabeth C McLemore, MD; Sonia Ramamoorthy, MD; Carrie Y Peterson, MD; Barbara L Bass, MD Perm J 2012 Summer;16(3):54-59

surgical careers for reasons similar to their How is this possible? My initial solution Abstract male colleagues: influential role models, proposed that the patient was the son of Women make up an increasing pro- intellectual challenges, technical aspects, a same-sex couple and had two fathers portion of students entering the medical and decisiveness.1-3 My reasons for enter- who were both surgeons. Then, it dawned profession. Before 1970, women repre- ing the field of surgery are not unique. on me … the surgeon on call was the sented 6% or less of the medical student I wanted to effect immediate change in patient’s mother. How could I, a woman, population. In drastic contrast, nearly half individuals inflicted with disease ame- a wife, a mother, and a surgeon, be so of first-time applicants to medical schools nable to surgical intervention. During my shortsighted? Despite my own personal in 2011 were women. However, the ratio surgical rotations in medical school, I had journey, my unconscious bias still drifted of women to men is less balanced among an immediate sense of belonging. I had an toward the assumption that the surgeon graduates from surgical residencies and instant affinity to the surgical leadership was male. among leadership positions in surgery. principles that prioritize respect, honesty, Less than 20% of full professor, tenured efficiency, problem solving, and praise for History of Women in Surgery: faculty, and departmental head positions executing arduous tasks. Foreign Film, Documentary, are currently held by women. However, I have been fortunate to have both men or Action-Adventure? this disparity may resolve with time as and women mentors. However, it was If Hollywood created a film on the more women who entered the field in not so long ago that women in medicine, history of women in surgery, it might the 1980s emerge as mature surgeons much less surgery, were not so fortunate be difficult to categorize: foreign film, and leaders. The aim of this article is to as to have examples of both men and documentary, or action-adventure? Fur- review the history of women in surgery women who had gone before them. They thermore, how do we categorize women and to highlight individual and institu- were the first women in medicine, sur- in medicine? Is the proper descriptor tional creative modifications that can gery, academics, private practice, boards “woman physician” or “physician who promote the advancement of women in of governors, departmental leadership, happens to be a woman”? Similarly, is the surgery. A secondary aim of the article is and in every imaginable position. proper phraseology “woman surgeon,” to add some levity to the discussion with Despite my (ECM’s) firsthand experi- or “surgeon who is also a woman”? My personal anecdotes representing the pri- ence as a woman in surgery, I recently (ECM’s) preference is for the latter in mary author’s (ECM) personal opinions, discovered that my own perceptions both instances. However, the lengthy biases, and reflections. were heavily influenced by stereotypes. I wording may be prohibitive in written was stunned by my naiveté regarding the and spoken language. An Unrecognized Personal Bias following riddle: One evening, a father The history of women in surgery has During the Second Annual Women in was driving with his son. The two were been well documented by Debrah A Surgery Conference at the University of heading home from an awards banquet. Wirtzfield, MD.4 Women held prominent California, San Diego on November 16, The father was a prominent surgeon and positions as surgeons in ancient times, as 2011, Carol Scott-Conner, MD, referenced had been nominated for Surgeon of the is recorded in surgical texts from Egypt, a 15th-century author describing the at- Year. Unfortunately, the father and son Italy, and Greece. However, during the tributes of an ideal surgeon: “the mind of were involved in a car accident. The Middle Ages, the notion of a woman’s Aesculapius, the eye of an eagle, the heart paramedics arrived at the scene and the ability to lead dissipated. This was par- of a lion, and the hands of a woman.” At father and son were taken to different ticularly true in medicine and surgery, first one might conclude that this refers to hospitals for medical evaluation. The but also in a variety of other professional the physical characteristics of a woman’s father suffered a minor concussion and and nonprofessional roles in which lead- hand; however, the author was more likely was admitted to the hospital for obser- ership was deemed a necessary attribute. highlighting the temperate nature of wom- vation. Unfortunately, the son needed Similarly, in the last century, pioneering en and the respect and care with which emergency surgery for his injuries. The women surgeons in North America were they care for patients and treat illnesses. surgeon on call that evening upon seeing frequently denied surgical residency posi- Patients frequently ask why I (ECM) the son said, “I cannot operate on this tions despite having graduated from pres- became a surgeon. Women are attracted to patient, this is my son.” tigious medical schools and universities.4

Elisabeth C McLemore, MD, is an Assistant Professor of Surgery at the University of California San Diego. E-mail: [email protected]. Sonia Ramamoorthy, MD, is an Associate Professor of Surgery at the University of California San Diego. E-mail: [email protected] Y Peterson, MD, is Chief Resident of Surgery at the University of California San Diego. E-mail: [email protected]. Barbara L Bass, MD, is the John F and Carolyn Bookout Distinguished Endowed Chair of Surgery at The Methodist Hospital in Houston, TX. E-mail: [email protected].

54 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 REVIEW ARTICLE Women in Surgery: Bright, Sharp, Brave, and Temperate

Modern surgical training in North Civil War. This honor was revoked in 1917 America was a frontier rarely explored by the US Congress, as she—like many by women in the 19th century. One of other earlier recipients—did not serve the most memorable stories illustrating directly on the front lines of battle. She some of the initial difficulties faced by had not returned the medal at the time of women in medicine and surgery is the her death, in 1919. In 1977, the Congres- account of James Barry, MD (1795–1865).4 sional Medal of Honor was reinstated by Dr Barry graduated from the prestigious President Jimmy Carter. A postage stamp Edinburgh Medical School at the age of 17. was issued in 1982 to commemorate Thereafter, he joined the army and was a Dr Edwards Walker. An unintentionally surgeon during the Napoleonic wars. In incomplete list highlighting many firsts 1820, he performed one of the first suc- for women in surgery can be found in cessful cesarean sections at the request of Table 1.1,6,7 The information contained in a wealthy patron whose wife was unable Table 1 is the cornerstone of this article, All-women operative teams: University of California San to progress during labor. Dr Barry was offering an opportunity to learn about the Diego Thornton Hospital operative team. often referred to as the “beardless lad.” major accomplishments that have been (Left to Right) Lynn Gardea, RN; Elizabeth Pocock, MD, chief resident; Rumor had it that he was involved in made by women in surgery during the Sara Meitzen, MD, anesthesiology resident; Elisabeth McLemore, MD, at least one long-term relationship with last few centuries. attending surgeon. another man. At the time of his death, it was discovered that Dr Barry was actu- Current State of the Union: eral surgery residency, with 35% of the ally a woman, with findings at autopsy Women in Surgery applicants being women (932 women, consistent with a history of pregnancy.4 Thankfully, the field of surgery has 2662 total applicants).10 However, despite In 2005, in an invited editorial describ- significantly evolved. Tamar Earnest, MD, these improvements, women continue ing her experience as a woman in surgery, said it best: “Were it not for the undaunted to be a minority in other surgical spe- Jo Buyske, MD, wrote, “Most women spirit of a few exceptional women, many cialties, numbering less than 15% of ap- surgeons of my era, and certainly those barriers would still exist to discourage plicants to residency training programs before, have spent our careers being as women from becoming surgeons.”1 These in thoracic surgery, urology, orthopedic sexually invisible as possible while at- exceptional women frequently give praise surgery, and neurological surgery.10 tending to the business of learning and to the influential mentors throughout their The proportion of women among practicing surgery. The goal was to be careers, who should also be recognized graduates from surgical residencies and accepted as a surgeon, not a woman sur- for their part in this evolution. One fine in leadership positions in surgery is geon. Now, to be a surgeon and thrown example among many is Claude Organ, less balanced. In the academic setting, into the spotlight as women is blinding. MD. Dr Organ’s 1993 editorial entitled approximately 41% of assistant profes- Being asked to write this editorial made “Toward a more complete society”8 de- sors are women. At first glance, it is me both proud and uneasy.”5 I (ECM) tails the goals and societal benefits of encouraging to see so many women experienced similar feelings of uneasiness participation, contribution, and leadership in academic medicine. Unfortunately, when asked to write this article. of women and other minorities in the there is a steep downward trajectory. field of surgery.8 Julie A Freischlag, MD, Women represent only 29% of associate First Things First: Women Halsted Professor, Surgeon-in-Chief, and professors, 17% of full professors, and Trailblazers in Surgery Chair of Surgery at Johns Hopkins Medi- 19% of tenured faculty. Only 12% of de- Mary Edwards Walker, MD, (1832– cal Institutions, has a revolutionary and partmental head positions are currently 1919) was the first recognized woman refreshing perspective on diversity: “We held by women.7,11,12 However, we remain surgeon in the US and the second woman need to recognize that diversity—manag- cautiously optimistic.13 to graduate from a medical school in the ing and leading across differences—is not “Attaining leadership is a long pro- US (Syracuse Medical College, New York, an initiative or a program; it should be a cess. Women only began entering sur- 1855; Elizabeth Blackwell, MD, was the competency that anyone who manages gery in significant numbers in the late first woman graduate, in 1849).1,6,7 Dr people must learn if he or she is to be an 1980s and the 1990s … Those residents Edwards Walker’s husband was a fel- effective leader.”9 from the 1980s are starting to emerge low classmate in medical school, Albert Before 1970, women represented as mature surgeons and leaders. There Miller, MD. Dr Edwards Walker went into 6% or less of the medical student is a certain mandatory developmental practice with her husband, however the body population.10 In drastic contrast, lag while those same women first learn surgical practice failed. Thereafter, she the number of first-time applicants to the skills of surgery, develop a body of practiced medicine as a nurse for sev- medical schools in 2011 reached an all- research, and then learn how to work eral years. In 1863, she became the first time high, and nearly half were women on a committee, to mediate, negotiate, woman surgeon in the US Army. Two (32,654 students, 2.6% increase from chair a group, and finally to emerge years later, she received the Congressional 2010, 47% women).10 In 2010, more than a leader. These women are all in the Medal of Honor for service during the 2500 medical students applied for a gen- pipeline.”—Jo Buyske, MD, 2005.5

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 55 REVIEW ARTICLE Women in Surgery: Bright, Sharp, Brave, and Temperate

Field Guide: tors you have throughout your career, the and will often keep a watchful eye on The Obstacle Course better the variety of perspectives, recom- your career, creating doors of opportunity To maneuver through an obstacle mendations, and advice you will receive.14 without your immediate knowledge. The course, you first need to know where it is. There are two main types of mentors: passive mentor is less likely to invest time Left to your own devices, you may quickly active and passive. The active mentor will but may unknowingly provide a great find yourself ten miles up the wrong invest time and energy to get to know role model for what to do or not do. You mountain. You need a mentor, a guide your strengths, weaknesses, goals, and will need to seek out mentorship in most to show you land mines to avoid—quite aspirations. The active mentor will assist cases. Interestingly, structured mentoring literally in some instances. The more men- you in your development and maturation (assigned mentoring within a department

Table 1. Pioneering women in the field of surgery Pioneering surgeon First for women in surgery Year Additional accomplishments Mary Edwards Walker, MD First woman to become a surgeon in 1863 Congressional Medal of Honor (1865) the US (Mary) Alice Bennett, MD First woman to obtain a PhD from the 1880 Improved the treatment of women patients with mental illness University of (anatomy) by abolishing restraints and introducing occupational therapy First woman superintendent of the at a state hospital women’s section of the State Hospital for First woman President of the Montgomery County Medical the Insane in Norristown, PA Society of Pennsylvania (1890) Harriet B Jones, MD First woman licensed to practice surgery 1885 One of the first women to serve in the West Virginia legislature Mary Amanda Dixon Jones, MD Proposed and performed the first total 1888 Trailblazer in portraying herself in a nontraditional female role hysterectomy for uterine myoma Bertha Van Hoosen, MD Founder and first President of 1915 Honorary member of the International Association of Medical the American Medical Women’s Women Association Author of Petticoat Surgeon, an autobiography (1947) Barbara B Stimson, MD First woman certified by the American 1940 First woman member of the New York Surgical Society and Board of Surgery American Association for the Surgery of Trauma Major in the Royal Army Medical Corps throughout World War II Major Margaret Craighill, MD First woman commissioned as an 1943 A surgeon and obstetrician officer in the US Army Alma Dea Morani, MD First woman admitted to the American 1947 First woman surgical resident at the Woman’s Medical College Society of Plastic and Reconstructive of Pennsylvania (1931) Surgery Tenley Albright, MD First woman to serve as an officer on the US Olympic Committee Chair of the National Institutes of Health National Library of Medicine’s Board of Regents First American woman to win a gold medal in figure skating Nina Braunwald, MD First woman elected to the American 1960 Led the operative team that performed the first successful Association for Thoracic Surgery prosthetic mitral heart valve replacement in the world, which she designed (1960) Developed the first cardiothoracic program at University of California San Diego (1968) Virginia Kneeland Frantz, MD First woman President of the American 1961 First woman surgical intern at New York Presbyterian Hospital Thyroid Society (1922) Along with Dr Whipple, described the secretion of insulin by pancreatic tumors (1935) Nina Braunwald, MD First women certified by the American 1961 Ann McKiel, MD Board of Cardiothoracic Surgery Nermin Tutunju, MD Frances Conley, MD First woman tenured full professor at a 1971 First woman surgical intern at Stanford University Hospital (1966) US medical school First woman to finish the San Francisco’s Bay to Breakers Foot Race (1971) Dorothy Lavinia Brown, MD First African-American woman to 1971 First African-American woman surgeon in the South (1957) become a Fellow of the American First African-American woman to serve in the Tennessee state College of Surgeons legislature (1966) Ernestine Hambeck, MD First woman certified by the American 1973 Founder of the STOP Colon/Rectal Cancer Foundation (1997) Board of Colorectal Surgery (Continued on next page.)

56 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 REVIEW ARTICLE Women in Surgery: Bright, Sharp, Brave, and Temperate

or institution) has been found to be a able, from cleaning services to food household is primarily managed by a cost-effective measure that translates into preparation to household maintenance domestic partner, s/he will likely have improved skill acquisition and improved to child care. There is also a wide vari- well-researched recommendations for retention in academic medicine.15 ety of creative solutions. For instance, child care, education, medical and All women attempting to perform our coworkers’ domestic partners have dental care, social networks, local din- dual professional and domestic roles firsthand experience and a comprehen- ing venues, reliable contractors, home will encounter obstacles. A variety of sive understanding of the demands of remodeling agencies, etc. Befriend your domestic assistance options are avail- the surgical profession. If a coworker’s colleagues’ domestic partners if the

(Continued from previous page.) Pioneering surgeon First for women in surgery Year Additional accomplishments Rosalyn P Scott, MD First African-American woman trained 1977 First African-American woman granted membership in the in thoracic surgery Society of University Surgeons First Mary A Fraley Fellow at the Texas Heart Institute (1980) Founding member of the Society of Black Academic Surgeons and the Association of Black Cardiovascular and Thoracic Surgeons Alexa Irene Canady, MD First African-American woman to 1984 Chief of neurosurgery at Children’s Hospital of Michigan become a neurosurgeon in the US Woman of the Year, American Women’s Medical Association (1993) Olga Jonasson, MD First woman in the US to chair an 1987 Director, Department of Education and Surgical Services of the academic department of surgery American College of Surgeons (1993) First woman to receive the Nina Starr Braunwald Award (1994 Foundation Award, Association of Women Surgeons) Julie Ann Freischlag, MD First woman vice president of the 1987 Surgeon-in-Chief, Johns Hopkins Medical Institutions (2003) Society for Vascular Surgery Editor, Archives of Surgery 2011 Associate Editor, American Journal of Surgery Susan Veronica Karol, MD First woman of the Tuscarora Indian 1988 First woman appointed Chief of Surgery at Beverly Hospital in Nation to become a surgeon Beverly, MA Brigadier General Rhonda L First woman flight surgeon to enter 1991 Author, She Went to War: The Rhonda Cornum Story Cornum, MD combat Director, US Army Comprehensive Soldier Fitness Program Kathryn Dorothy Duncan First woman appointed officer of the 1992 Secretary of the American College of Surgeons (1993) Anderson, MD American College of Surgeons Chief of Surgery, Children’s Hospital Los Angeles First woman President of the American 1999 Pediatric Surgery Association First woman President of the American 2005 College of Surgeons Karen Guice, MD First woman elected President of the 1993 Military Health System’s chief information officer Association of Academic Surgery Patricia Numann, MD First woman Chair, American Board of 1994 Founder of the Association of Women in Surgery Surgery Second woman elected President of the American College of Surgeons Linda Graham, MD First woman elected President of the 1994 Adjunct Professor, Case Western Reserve University Society of University Surgeons Department of Biomedical Engineering Lori Arviso Alvord, MD First Navajo woman to be board- 1994 Bridged traditional Navajo healing and conventional Western certified in general surgery medicine to treat the whole patient Leigh Ann Curl, MD First and only woman orthopedic 2002 Inducted into the Academic All-America Hall of Fame (1998) surgeon in the National Football League M Jennifer Derebery, MD First woman President of the American 2003 Advancing the science of autoimmune inner ear diseases with Academy of Otolaryngology National Institutes of Health-funded research Ann Lowry, MD First woman elected President of the 2007 President and CEO of Colon and Rectal Surgery Associates American Society of Colon and Rectal (2008) Surgeons Jo Buyske, MD First woman elected president of the 2010 Associate Executive Director, American Board of Surgery Society of American Gastrointestinal (2007) and Endoscopic Surgeons Carol Scott-Conner, MD First woman member of the Southern 2011 Second woman Chair of a Department of Surgery Surgical Society Author, A Few Small Moments, an autobiography (2011)

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 57 REVIEW ARTICLE Women in Surgery: Bright, Sharp, Brave, and Temperate

and extracurricular events should be is, “Yes, it is worth it. And yes, you can so common that we find ourselves sur- be successful in all three areas—just not prised when there is no one currently on always at the same time.” Some days you parent leave, rather than being shocked will be most successful as the surgeon. at the coverage that is needed to support Other days you will be most success- the leave.17,18 ful as the parent. And other days, you Although considerable improve- will be most successful as the spouse or ments have been made in the realm of domestic partner. For the other roles you sex discrimination in the workplace, play—daughter, sister, co-worker, mentor, there is always room for improvement. mentee, friend, coach, teacher, etc—you Zhuge and colleagues have identified will have various degrees of success as notable barriers to achieving leadership well. One of my (ECM’s) mentors from positions and recommended adaptive medical school had engraved on her man- interventions.11 The reader is encour- tel the mock-Latin aphorism:, Illegitimis aged to review the article by Zhuge and non carborundum. The underlying mes- colleagues as individual and institutional sage is similar to the well-known phrase interventions are revealed and may en- from the children’s story The Little Engine lighten both parties as to some creative That Could, “I think I can, I think I can, I solutions. For example, at the individual think I can …” Mind your health, cherish All-women operative team: University of California level, renegotiate assignment of family your friends and family, learn from your San Diego dual robotic surgeon console colorectal responsibilities. At the institutional level, mistakes, and take pleasure in all of your surgery team. schedule departmental meetings at more successful moments. (Left to Right) Sonia Ramamoorthy, MD; Elisabeth McLemore, MD. practical times. The absolute need for mentorship is also emphasized.11 Conclusion: Nurture the opportunity presents itself—these may Dyrbye and colleagues recommend Creative Pipelines to Success very well become some of the most additional creative institutional strate- As women continue to increase in grounded friendships you will have. gies, including daycare in the workplace, number and mature in leadership posi- Without further delay, let’s address adjustable timelines for promotion and tions in surgery, active mentorship is the topic of pregnancy—the “nine-letter tenure, and domestic partner employ- vital to nurture the variety of pipelines word” in most professional environ- ment assistance during recruitment of to success. Leaders in surgery, unite and ments, closely followed by the other women surgeons.19 Creative adapta- assist your colleagues in attaining a sense “nine-letter word,” maternity, and ma- tions of surgical residency programs, of control over lifestyle. Although there ternity leave. I will make no declarations including part-time paternity and ma- will always be roadblocks, regardless of as to the ideal timing of pregnancy or ternity leave, are of increasing interest race, ethnicity, sex, and a myriad of other parenting style. I have come to the to students and trainees.2 These creative differences associated with unjustified understanding that the term “planned residency employment tracks continue perceptions, it is important to persevere parenthood” is an oxymoron. It would to train competent surgeons.20,21 in the ongoing education and evolution be nice if a survivorship screen- A career in surgery includes an often of our minds and craft.21 ing program was developed for daunting time commitment to clinical It is often easier to lose momentum at “Yes, it is parents and families during the work. Despite the longer work days a roadblock and turn back than to forge worth it. And first five years after childbirth. required of surgeons, a study comparing a new path. However, true greatness, yes, you can All malapropism and intentional women who are surgeons with other true happiness, true meaning is found be a successful humor aside, parenthood dur- women who are physicians found that in the discovery of new frontiers, both surgeon, ing surgical training and profes- career satisfaction was similar between professional and personal. In the field parent, and sional practice is going to occur both groups.22 Women in surgical ca- of surgery, there is a multitude of fron- spouse—just so long as there are human reers were not more likely to report tiers awaiting bright, sharp, brave, and 16 not always beings inhabiting the earth. feeling that they worked too much, had temperate leaders. Let us continue to at the same Therefore, we prepare for it in too much work stress, or less control promote the advancement of women a fashion similar to the way we time.” of their work environment. Women in and other minority groups in surgery, prepare for coverage during surgical careers were less likely to want including positions of leadership. In holidays, societal meetings, and to change their specialty if they had the her presidential speech at the American business meetings. Appropriate maternity option of reliving their lives.22 Society of Colon and Rectal Surgeons and paternity policies within our own “Is it worth it?” This is a frequent Annual Meeting, Ann C Lowry, MD, very institutions and practices exist and fos- question from medical students and as- appropriately referenced Robert Frost, ter an environment of equality. “Parent piring young surgeons alike. “Can you be “Two roads diverged in a wood, and I—I leave,” if you will, for newborn care, a successful surgeon, parent, and spouse?” took the one less traveled by, and that parent-teacher meetings, and scholarly My (ECM’s) answer to these questions has made all the difference.”23 v

58 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 REVIEW ARTICLE Women in Surgery: Bright, Sharp, Brave, and Temperate

Acknowledgments 8. Organ CH Jr. Toward a more complete society. 16. Carty SE, Colson YL, Garvey LS, et al. Maternity Leslie E Parker, ELS, provided editorial Arch Surg 1993 Jun;128(6):617. policy and practice during surgery residency: assistance. 9. Freischlag JA. Women in surgery: are you how we do it. Surgery 2002 Oct;132(4):682-8. ready for a change? [slide show on the 17. Merchant S, Hameed M, Melck A. Pregnancy Internet]. Chicago, IL: Rush University among residents enrolled in general surgery References Medical Center Web site; 2007 [cited 2012 (PREGS): a survey of residents in a single 1. Mills D. Women in surgery: past, present Jul 11] Available from: www.slideshare.net/ Canadian training program. Can J Surg 2011 and future [PowerPoint presentation on the zardari77/women-in-surgery-are-you-ready- Dec;54(6):375-80. Internet]. Downers Grove, IL: Association of for-a-woman-in-charge. 18. Mayer KL, Ho HS, Goodnight JE Jr. Childbear- Women Surgeons; 2003 Sep 19 [cited 2012 10. FACTS: Applicants, Matriculants, Enroll- ing and child care in surgery. Arch Surg 2001 Apr 30]. Available from: www.womensur- ment, Graduates, MD/PhD, and Residency Jun;136(6):649-55. geons.org/About_AWS/items/womeninsur- Applicants Data [database on the Internet]. 19. Dyrbye LN, Shanafelt TD, Balch CM, Satele D, gery2003c.ppt. Washington, DC: Association of American Freischlag J. Physicians married or partnered to 2. Saalwachter AR, Freischlag JA, Sawyer RG, Medical Colleges; 1995-2012 [cited 2012 physicians: a comparative study in the Ameri- Sanfey HA. The training needs and priorities of Apr 30]. Available from: www.aamc.org/ can College of Surgeons. J Am Coll Surg 2010 male and female surgeons and their trainees. J data/facts. Nov;211(5):663-71. Am Coll Surg 2005 Aug;201(2):199-205. 11. Zhuge Y, Kaufman J, Simeone DM, Chen H, 20. Saalwachter AR, Freischlag JA, Sawyer RG, 3. Bass BL, Napolitano LM. Gender and diversity Velazquez OC. Is there still a glass ceiling for Sanfey HA. Part-time training in general sur- considerations in surgical training. Surg Clin women in academic surgery? Ann Surg 2011 gery: results of a web-based survey. Arch Surg North Am 2004 Dec;84(6):1537-55. Apr;253(4):637-43. 2006 Oct;141(10):977-82. 4. Wirtzfeld DA. The history of women in surgery. 12. Freischlag JA. Women surgeons—still in a 21. Butler PD, Britt LD, Green MI, et al. The diverse Can J Surg 2009 Aug;52(4):317-20. male-dominated world. Yale J Biol Med 2008 surgeons initiative: an effective method for 5. Buyske J. Women in surgery: the same, yet Dec;81(4):203-4. increasing the number of under-represented different. Arch Surg 2005 Mar;140(3):241-4. 13. Numann PJ. Perspectives on career ad- minorities in academic surgery. J Am Coll Surg 6 Celebrating America’s women physicians: vancement for women. Am Surg 2011 2010 Oct;211(4):561-6. changing the face of medicine [home page on Nov;77(11):1435-6. 22. Frank E, Brownstein M, Ephgrave K, Neumayer the Internet]. Bethesda, MD: National Library 14. Kron IL. Surgical mentorship. J Thorac Cardio- L. Characteristics of women surgeons in the of Medicine; 2005 [cited 2012 Jul 11]. Avail- vasc Surg 2011 Sep;142(3):489-92. United States. Am J Surg 1998 Sep;176:244-50. able from: www.nlm.nih.gov/changingthefa- 15. Wingard DL, Garman KA, Reznik V. Facilitating 23. Frost R. Mountain Interval. New York: Henry ceofmedicine/exhibition/2005. faculty success: outcomes and cost benefit Holt and Company; 1920. 7. Jonasson O. Leaders in American surgery: of the UCSD National Center of Leadership where are the women? Surgery 2002 in Academic Medicine. Acad Med 2004 Jun;131(6):672-5. Oct;79(10 Suppl):S9-11.

A Surgeon Should Be A surgeon should be youthful or at any rate nearer youth than age; with a strong and steady hand which never trembles, and ready to use the left hand as well as the right; with vision sharp and clear, and spirit undaunted; filled with pity, so that he wishes to cure his patient, yet is not moved by his cries, to go too fast, or cut less than is necessary; but he does everything just as if the cries of pain cause him to emotion. —De Medicina, Aulus Aurelius Cornelius Celsus, 25 BC – 50 AD, Roman encyclopeadist

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 59 CASE STUDY Lymphoepithelial Carcinoma: A Case of a Rare Parotid Gland Tumor

Christopher G Tang, MD; Thomas M Schmidtknecht, MD; Grace Y Tang; Luke J Schloegel, MD; Barry Rasgon, MD Perm J 2012 Summer;16(3):60-62

showed a 4.1 × 2.9 × 3.7-cm mass in the superficial lobe of the Abstract left parotid gland with left-sided cervical lymphadenopathy A 29-year-old woman presented from another hospital with a (Figures 1 and 2). 10-month history of an enlarging left-sided facial mass. Computed The patient was seen at our facility 9 days after the initial tomographic scan revealed a mass in the superficial lobe of the left FNA and CT scan were performed. Because pathologic results parotid gland with left-sided cervical lymphadenopathy. The patient may have altered surgical planning, a core needle biopsy was received a total left parotidectomy and a selective neck dissection. completed to rule out lymphoma. Core needle biopsy revealed Histopathologic slides revealed lymphoepithelial carcinoma (LEC) tumor cells that stained negative for CD20, C3, CD45, synapto- that stained positive for cytokeratin, as well as Epstein-Barr virus physin, and CD30, and confirmed the FNA results of a poorly (EBV). An LEC of the parotid is a rare salivary gland tumor account- differentiated carcinoma. ing for less than 1% of all salivary gland tumors. As reaffirmed in Six days after the core needle biopsy, the patient received a our case, LEC is more common in women, occurs primarily in the total left parotidectomy and a selective neck dissection involving parotid gland, and has an ethnic predilection. Histologic analysis the level 2 nodes only. A complete neck dissection was not per- reveals an infiltrative, poorly differentiated tumor nestled in a formed because results of a frozen section of level 2 nodes were lymphoid stroma, with near 100% positivity for EBV in endemic negative for carcinoma. A specimen was sent for pathologic areas. Complete resection of this poorly differentiated carcinoma analysis and revealed an intraparotid lymph node adjacent to followed by postoperative radiation is essential for local control. the mass with a lymphoplasmacytic cell infiltrate surrounding nests of tumor cells. An adjacent lymph node appeared reac- Case Report tive with a “starry sky” pattern (Figure 3). A brown cytokeratin A 29-year-old woman referred from an outside hospital stain (CK 5/7), an immunoperoxidase stain, revealed cells presented to our clinic with a 10-month history of an enlarging staining positive for cytokeratin in the mass as well as in an left-sided facial mass. At that time, the patient had no pain, and intraparotid lymph node (Figure 4). All other lymph nodes had her facial nerve was intact, with House-Brackmann grade I. negative test results. Epstein-Barr encoded RNA (EBER) stain Fine-needle aspiration (FNA) biopsy was done at the referring showed Epstein-Barr virus (EBV) positivity in the mass as well facility and showed cells suggestive of a poorly differentiated as an intraparotid lymph node (Figure 5). A high-power view neoplasm with spindle cell and epithelioid features. However, of the specimen demonstrated classic lymphoplasmacytic cell additional biopsy material was needed for a definitive classifica- infiltrate among nests of poorly differentiated cells (Figure 6). tion. A computed tomographic (CT) scan obtained at that time The diagnosis was lymphoepithelial carcinoma (LEC).

Figure 1. Computed tomography scan reveals a left-sided Figure 2. Computed tomography scan reveals a left-sided parotid mass in the coronal plane. White circle marks the site parotid mass in the axial plane. White circle marks the site of of the tumor. the tumor.

Christopher G Tang, MD, is a Resident in the Head and Neck Surgery Department at the Oakland Medical Center in CA. E-mail: [email protected]. Thomas M Schmidtknecht, MD, is a Pathologist at the Oakland Medical Center. E-mail: [email protected]. Grace Y Tang is a Student of Engineering and Applied Science at the California Institute of Technology in Pasadena, CA. E-mail: [email protected]. Luke J Schloegel, MD, is a Pediatric Head and Neck Surgeon at the Oakland Medical Center in CA. E-mail: [email protected]. Barry Rasgon, MD, is a Head and Neck Surgeon at the Oakland Medical Center in CA. E-mail: [email protected].

60 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 CASE STUDY Lymphoepithelial Carcinoma: A Case of a Rare Parotid Gland Tumor

Postoperatively, the patient was referred for radiation therapy to the primary site and neck basins.

Discussion Lymphoepithelial carcinoma accounts for 0.4% of malignant salivary gland tumors and is a variant of anaplastic carcinoma with a dense lymphoid stroma.1 Although Schminke2 first described lymphoepithelial carcinoma in the nasopharynx in 1921, it was not until 1952 that Godwin3 described the first case series of benign lymphoepithelial lesions of the salivary gland in 11 patients. Epidemiologically, LEC accounts for less than 1% of all salivary gland tumors and has a unique ethnic predilection for Arctic region natives (particularly Eskimos and Inuits), southeastern Chinese, and Japanese. Hamilton-Dutoit et al4 first published Figure 3. Intraparotid lymph node adjacent to tumor. Lympho- the association between EBV and undifferentiated carcinomas of plasmacytic cell infiltrate surrounding nests of tumor cells sug- the salivary gland among the Eskimo population. They showed gests lymphoepithelial carcinoma. Adjacent lymph node appears that the EBV genomes were detected in cases of undifferentiated reactive with a starry-sky pattern. carcinoma of the Eskimo population, but not in similar tumors of non-Eskimo ancestry.4 The current theory is that when the EBV incorporates into the DNA of certain susceptible popula- tions, it has a predilection for tumorigenesis (ie, turning off tumor suppressor genes such as p53). The most common site of occurrence is the parotid gland, and LEC has a nearly 100% association with EBV in endemic areas.5 Patients usually pres- ent with a mass swelling with or without facial nerve paralysis and pain. There is a high frequency (10% to 40%) of concurrent cervical lymphadenopathy.6 The patient in our case had all these clinical risk factors, as she was of southeastern Chinese/Asian descent, had disease in the parotid gland, and histologic specimens stained positive for EBER (Figure 5). The patient did present with facial swelling but did not have any facial nerve paralysis or any pain. She did not have any cervical lymph node involvement, and pathologic specimens of level 2a nodes showed 19 negative lymph nodes. Figure 4. Brown cytokeratin stain (CD 5/7), an immunoperoxi- The patient did have one lymph node involved that was directly dase stain, reveals tumor cells staining positive for cytokeratin. However, tumor cells are also seen in the lymph node suggestive adjacent to the tumor (Figure 3), but no regional metastases. of intraparatid spread. All other lymph nodes were negative.

Figure 5. Epstein-Barr encoded RNA (EBER) stain shows Epstein- Figure 6. High-power view of specimen reveals classic lympho- Barr virus positivity in tumor cells. Tumor cells scattered in lymph plasmacytic cell infiltrate among nests of poorly differentiated nodes also stain positive for EBER. tumor cells.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 61 CASE STUDY Lymphoepithelial Carcinoma: A Case of a Rare Parotid Gland Tumor

The tumor was classified as a stage II, T2N0M0, grade 3, poorly head and neck region, including the floor of the mouth, tonsil, differentiated LEC, according to the American Joint Committee on thymus, larynx, and sinonasal tract.10 Histologically, LECs of the Cancer staging system7 because the tumor was greater than 2 cm parotid are identical to nasopharyngeal lymphoepitheliomas.11 and less than 4 cm and did not appear to have any lymph node or Similar to lymphoepithelioma of the nasopharynx, LECs of the distant metastases. The patient did not have any perineural inva- parotid are very sensitive to radiation. Any high-grade malignant sion, and all margins were clear. Postoperatively she had a facial tumor of the parotid usually is treated with radiation therapy nerve palsy with incomplete eye closure, a House-Brackmann because it may be difficult to obtain clear margins. grade IV, and she recovered to baseline grade I within a month. In conclusion, LEC of the parotid is a rare parotid tumor that There were 3 primary reasons why a total parotidectomy requires surgical excision and postoperative radiotherapy. The was performed instead of a superficial parotidectomy. The workup of any parotid mass should begin with an FNA of the patient had a deep lobe tumor, the FNA showed a high-grade mass. Once a pathologic diagnosis of the parotid mass is obtained, malignant tumor, and the tumor was relatively large (roughly 4 surgical excision can be discussed depending on the pathologic cm). At our institution, the senior author tends to perform total results. An elderly patient with multiple medical comorbidities parotidectomies on all high-grade malignancies. Sometimes may not need to have a benign pleomorphic adenoma excised. superficial parotidectomies may be sufficient for small, low- Any malignant neoplasm would require surgical excision, radiation grade malignancies. therapy, or both. After the FNA is obtained, imaging with either Regarding the decision to perform only a selective level 2a magnetic resonance imaging or positron emission tomography/ neck dissection, the patient had abnormal-appearing lymph CT is appropriate. Magnetic resonance images are preferable for nodes on CT that measured 2.1 × 1.2 cm and 1.7 × 1.1 cm in anatomic delineation, whereas positron emission tomography/CT level 2a. These tumors are very radiosensitive, and the patient scans allow one to look for regional and distant metastases. In was scheduled to have postoperative radiation therapy locally to many cases, both types of images can be obtained, especially in the tumor bed of the parotid. It was decided that the abnormal- cases of high-grade malignancies. Finally, referral to a multidis- appearing lymph nodes would be removed and sampled as ciplinary head and neck tumor board including head and neck frozen sections to rule out regional metastases. Because the surgeons, a radiation oncologist, and medical oncologists, for patient would be receiving postoperative radiation to the local evaluation of advanced-stage disease may help facilitate manage- tumor bed if the nodes were negative, she would receive radia- ment from a multispecialty approach. v tion to the cervical lymph node basins instead of an elective neck dissection. If the lymph nodes were positive for cancer on the Disclosure Statement frozen section, a selective neck dissection would be performed. The author(s) have no conflicts of interest to disclose. Histologically, specimens of LEC normally are characterized by a rich nonneoplastic lymphoplasmacytic cell infiltrate present Acknowledgment between and around tumor nests (Figures 3 and 6). Abundant Kathleen Louden, ELS, of Louden Health Communications provided histiocytes may be present, demonstrating a starry-sky appear- editorial assistance. ance.5 Immunohistochemical analysis shows neoplastic cells that References stain positive for cytokeratin (Figure 4) and epithelial membrane 1. Schneider M, Rizzardi C. Lymphoepithelial carcinoma of the parotid glands antigen, with variable expression of EBER.5 Lymphoid cells are and its relationship with benign lymphoepithelial lesions. Arch Pathol Lab reactive for both CD20 and CD3 markers suggestive of B-cell Med 2008 Feb;132(2):278-82. 2. Schminke A. Über lymphoepitheliale Geschwülste. Beitr Pathol Anat and T-cell presence, respectively. 1921;68:161-70. With current treatment modalities, the recurrence rate of high- 3. Godwin JT. Benign lymphoepithelial lesion of the parotid gland adenolym- grade salivary gland tumors has decreased, and survival rates have phoma, chronic inflammation, lymphoepithelioma, lymphocytic tumor, increased. According to a 30-year review of the Mayo Clinic’s Mikulicz disease. Cancer 1952 Nov;5(6):1089-103. 4. Hamilton-Dutoit SJ, Therkildsen MH, Nielsen NH, Jensen H, Hansen JP, surgical experience with 1360 primary tumors of the parotid Pallesen G. Undifferentiated carcinoma of the salivary gland in Greenlandic gland, nearly 17% (228) of those tumors were malignant.8 Of the Eskimos: demonstration of Epstein-Barr virus DNA by in situ nucleic acid 228 malignant tumors, 11 (<5%) were undifferentiated. The recur- hybridization. Hum Pathol 1991 Aug;22(8):811-5. 5. Lanier AP, Bornkamm GW, Henle W, et al. Association of Epstein-Barr virus 8 rence rate decreased from 83% in the 1940s to 40% in the 1960s. with nasopharyngeal carcinoma in Alaskan native patients: serum antibod- Current treatment recommendations involve completely excising ies and tissue EBNA and DNA. Int J Cancer 1981 Sep 15;28(3):301-5. the primary lesion, with a selective neck dissection followed by 6. Neoplasms of the salivary glands: Lymphoepithelial Carcinoma. In: Wenig B, Heffess C. Atlas of Head and Neck Surgery. 2nd edition. Philadelphia, PA: postoperative radiotherapy to the local site as well as to the neck Saunders Elsevier; 2008. 672-4. if there was positive lymph node involvement. Because most LECs 7. Greene FL, Page DL, Fleming ID, et al, editors. AJCC Cancer Staging of the parotid gland are radiosensitive, combination therapy with Manual. 6th ed. New York: Springer Science and Business Media; 2002. 9 8. Woods JE, Chong GC, Beahrs OH. Experience with 1360 primary parotid surgery and radiation therapy is desirable to control the disease. tumors. Am J Surg 1975 Oct;130(4):460-2. Our patient received a total parotidectomy on the affected side with 9. Abdulla AK, Mian MY. Lymphoepithelial carcinoma of salivary glands. Head selective lymph node sampling. Because the lymph nodes were Neck 1996 Nov-Dec;18(6):577-81. 10. Tsai CC, Chen CL, Hsu HC. Expression of Epstein-Barr virus in carcinomas negative on the frozen section intraoperatively, a complete neck of major salivary glands: a strong association with lymphoepithelioma-like dissection was not performed. Postoperatively, the patient was carcinoma. Hum Pathol 1996 Mar;27(3):258-62. referred for radiation therapy to the primary site and neck basins. 11. Saw D, Lau WH, Ho JH, Chan JK, Ng CS. Malignant lymphoepithelial lesion There have been reports of LECs in several other sites in the of the salivary gland. Hum Pathol 1986 Sep;17(9):914-23.

62 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 CASE STUDY Neurothekeoma in the Posterior Fossa: Case Report and Literature Review

Daniela Alexandru, MD; Radha Satyadev, MD; William So, MD Perm J 2012 Summer;16(3):63-64

hospital admission, he also experienced vascular blush over the left cerebellar Abstract transient numbness of the lower ex- region. There was no distinct vessel Neurothekeoma is a benign nerve tremities. He did not have any difficulty supplying the mass. The occipital artery sheath tumor, also known as nerve ambulating or any balance problems. The was cannulated, and injection of contrast sheath myxoma. It arises from the cu- patient had a history of type 2 diabetes, showed small branches supplying the taneous nerves of the head and neck which was controlled with medications. vascular blush, without evidence of a large region. In certain cases, neurothekeoma On neurologic examination, the patient vessel supplying the mass. Embolization has been reported in the breast, oral cav- had no cranial nerve deficits, no weak- was not performed. ity, tongue, maxilla, and spinal intradu- ness, and no sensory deficits. He did not ral space. Intracranial neurothekeoma, have dysmetria or dysdiadochokinesia. A Surgical Approach however, is an extremely rare entity, head computed tomographic (CT) scan The decision was made to proceed with only three cases reported in the performed in the emergency room to eval- with surgery, for tissue biopsy and for at- literature: one in the parasellar region, uate for headache showed a left cerebellar tempted gross total resection. A standard one in the deep white matter, and an- mass. Thus, a magnetic resonance image left-sided posterior fossa craniotomy was other one in the cerebellopontine angle. (MRI) was obtained to better characterize performed. The dura mater was opened We present the case of a 40-year-old the mass in the posterior fossa. over the tumor, which had a well-demar- man with a very large neurothekeoma cated capsule. The tumor was dissected present in the posterior fossa who had Imaging Findings carefully off the cerebellum. The tumor no neurologic deficit on presentation. A noncontrast-enhanced CT scan of the had areas that were soft and easily remov- head showed a mass in the left cerebellum able, mixed with areas of fibrotic tissue. Introduction with compression and distortion of the It was quite avascular. Neurothekeoma is a benign nerve fourth ventricle. There was also evidence sheath tumor that arises from small cu- of ventriculomegaly. taneous nerves and has a predilection Axial, coronal, and sagittal MRIs of the for the upper part of the body: the head, head displayed a round, well-delineated neck, and shoulders.1,2 Sometimes it can lesion in the posterior fossa compressing be found in the breast,2 oral cavity,1 the left cerebellar hemisphere, with distor- tongue,3 maxilla,4 and spinal intradural tion of the brain stem and compression space.5,6 Neurothekeoma of the head and of the fourth ventricle. The tumor was neck is quite common, with hundreds of hypointense to brain on T1-weighted reported cases in the literature.7 Intracra- images (Figure 1A) and hyperintense on nial neurothekeoma, however, is a very T2-weighted images (Figure 1B). Fluid- rare tumor, with only three cases reported attenuated inversion recovery images in the literature, to our knowledge.8-10 showed minimal edema around the tumor We herein report a case of intracranial (Figure 1C). The tumor had faint enhance- neurothekeoma, which had a unique loca- ment with gadolinium administration, in a tion in the posterior fossa, mimicking a heterogeneous pattern (Figure 1D). meningioma or a schwannoma. To better characterize the lesion, an angiogram was obtained. Common carotid Case Report injections bilaterally showed no vascular A 40-year-old man presented to the abnormality. Vertebral injections showed emergency room with a 2-week history filling of the basilar artery and the pos- Figure 1. Axial magnetic resonance images of the tumor. of headaches. The patient complained terior circulation without a tumor blush. of occipital headaches, which came on Right external carotid artery injection A) T1-weighted images show hypointense tumor. B) T2-weighted images show hyperintense lesion. C) Fluid-attenuated inversion images show gradually and increased in intensity over showed no abnormality. Left external minimal edema. D) T1-weighted images with contrast agent show heter- the 2-week period. The day before the carotid artery injection showed a faint ogenous enhancement of the lesion.

Daniela Alexandru, MD, is a Neurosurgeon at the University of California Irvine Medical Center in Orange, CA. E-mail: [email protected]. Radha Satyadev, MD, is a Pathologist at the Lakeview Medical Offices in Anaheim, CA. E-mail: [email protected]. William So, MD, is a Neurosurgeon at the Lakeview Medical Offices in Anaheim, CA. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 63 CASE STUDY Neurothekeoma in the Posterior Fossa: Case Report and Literature Review

Pathologic Examination been no reported cases of metastases.7,11 Disclosure Statement On pathologic examination, the Thus, radiation and chemotherapy are not The author(s) have no conflicts of interest tumor had the appearance of a well- recommended for treatment of cutaneous to disclose. circumscribed, myxoid lobulated lesion. neurothekeoma.7,11 However, there are Histologically, the tumor was encapsu- reported cases of recurrence. Although Acknowledgment Kathleen Louden, ELS, of Louden Health lated by a thin fibrous connective tissue these cases were attributed to incomplete Communications provided editorial assistance. and was composed of ovoid lobules resection of the tumor,7,11 regular follow- separated by fibrous septae. The lobules up for surveillance is necessary to detect References 7,11 contained stellate and spindle-shaped recurrence of these lesions. 1. Vered M, Fridman E, Carpenter WM, Buchner cells with reticular cellular processes The most common type of intracranial A. Classic neurothekeoma (nerve sheath myxoma) and cellular neurothekeoma of the forming a myxoid network in an abun- neurothekeoma is myxoid. This tumor oral mucosa: immunohistochemical profiles. J dant basophilic matrix (Figure 2A, B). is characterized by hypocellularity, with Oral Pathol Med 2011 Feb;40(2):174-80. There was no necrosis and no mitoses small spindle or stellate cells loosely ar- 2. Wee A, Tan CE, Raju GC. Nerve sheath myxoma of the breast. A light and electron (Figure 2A, B). The cells had a bland ranged in abundant mucinous stroma. On microscopic, histochemical and immunohisto- morphologic appearance despite cel- immunohistochemical staining, the tumor chemical study. Virchows Arch A Pathol Anat lular pleomorphism, as well as variable cells are positive for S100 antibody, nerve Histopathol 1989;416(2):163-7. 3. Makino T, Utsunomiya T, Kamino Y, et al. Nerve positivity for S100 immunohistochemical growth factor receptor (p75NGFR), col- sheath myxoma of the tongue in a child. Int J stain (Figure 2C) and negativity for glial lagen type IV, CD34, glial fibrillary acidic Oral Maxillofac Surg 2002 Aug;31(4):451-4. fibrillary acidic protein stain (Figure 2D) protein, and CD57.12 4. Cohen NA, Samadi DS, Pawel BR, Kazahaya K. Cellular neurothekeoma of the maxilla. Ann characteristic of neurothekeoma. Our case initially was suspected of being Otol Rhinol Laryngol 2004 May;113(5):384-7. a meningioma because of the appearance 5. Lee D, Suh YL, Han J, Kim ES. Spinal nerve Postoperative Course on MRI. The tumor was a well-circum- sheath myxoma (neurothekeoma). Pathol Int Following complete total resection of scribed mass in the posterior fossa, located 2006 Mar;56(3):144-9. 6. Paulus W, Jellinger K, Perneczky G. Intraspinal the tumor, the patient had an uncompli- intradurally in an extra-axial location, neurothekeoma (nerve sheath myxoma). A cated postoperative course, without any and was pushing, rather than invading, report of two cases. Am J Clin Pathol 1991 neurologic deficits. Because of the benign the associated structures. The differential Apr;95(4):511-6. 7. Hornick JL, Fletcher CD. Cellular neu- nature of this tumor, the patient did not diagnosis for such a mass in the posterior rothekeoma: detailed characterization in a receive chemotherapy or radiation. fossa can also include schwannoma; other series of 133 cases. Am J Surg Pathol 2007 myxoid tumors such as sarcomas with Mar;31(3):329-40. 8. Paulus W, Warmuth-Metz M, Sörensen N. Discussion myxoid degeneration, cardiac myxoma Intracranial neurothekeoma (nerve-sheath Cutaneous neurothekeomas are classi- metastatic to the brain, primary intracranial myxoma). Case report. J Neurosurg 1993 fied into myxoid and cellular types. Both myxoma, soft-tissue myxoma penetrating Aug;79(2):280-2. 9. Pal L, Bansal K, Behari S, et al. Intracranial 6,8,9 types of tumor are benign, and there have the skull; and gliomas. neurothekeoma—a rare parenchymal nerve The most likely origin for the sheath myxoma of the middle cranial fossa. tumor presented in this case is Clin Neuropathol 2002 Mar-Apr;21(2):47-51. 10. Erdem Y, Koktekir E, Bayar MA, Yilmaz A, the perineural cells of the nerves Caydere M. Characterization of an intracranial in the dura mater or around neurothekeoma: case report. Turk Neurosurg the blood vessels. Similar to 2012;22(1):109-12. 11. Fetsch JF, Laskin WB, Hallman JR, Lupton GP, cutaneous neurothekeomas, this Miettinen M. Neurothekeoma: an analysis intracranial tumor in the poste- of 178 tumors with detailed immunohis- tochemical data and long-term patient rior fossa was not attached to a follow-up information. Am J Surg Pathol 2007 major cranial nerve. This made Jul;31(7):1103-14. the resection easier and did not 12. Laskin WB, Fetsch JF, Miettinen M. The “neurothekeoma”: immunohistochemical cause neurologic deficit for the analysis distinguishes the true nerve sheath patient. Cumulative experience myxoma from its mimics. Hum Pathol 2000 from the literature regarding cu- Oct;31(10):1230-41. taneous neurothekeomas leads us to believe that intracranial neurothekeomas can be treated by gross total resection, with good outcomes, and do not require adjuvant chemotherapy Figure 2. Pathologic examination of the tumor. or radiation. v A) and B) Hematoxylin-eosin stain reveals hypocellularity. Cells are spindle shaped and surrounded by a myxoid matrix. C) Cells are positive for S100 antibody stain. D) Tumor cells stain negatively for glial fibrillary acidic protein.

64 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 CLINICAL MEDICINE Nailing the Diagnosis: Koilonychia

Vivek Kumar, MD; Sourabh Aggarwal, MD; Alka Sharma, MD; Vishal Sharma, MD Perm J 2012 Summer;16(3):65

A 22-year-old man presented with complaints of chronic diarrhea, general weakness, and easy fatigue. He had been progressively symptomatic for 6 months. On examination, he had pallor and spoon-shaped nails (Figure 1). The rest of the examination findings were normal. Laboratory studies revealed anemia (hemoglobin, 8 g/dL; total leukocyte count, 5400/mm3; platelet count, 432,000/mm3; and peripheral blood smear sug- gestive of microcytic and hypochromic pattern). The iron profile was suggestive of iron-deficien- cy anemia. Stool was normal. Immunoglobulin A antitissue transglutaminase was elevated, at 43 U/mL (normal, <8 U/mL). Gastroduodenoscopy was suggestive of grooving in the second part of the duodenum. Duodenal biopsy revealed increased intraepithelial lymphocytes and crypt hyperplasia. The patient was started on a gluten-free diet and iron supplementation. At a 6-month follow-up, the anemia had resolved, and antitissue transglutaminase antibody levels had normalized. Koilonychia is an abnormality of the nails that is also called spoon-shaped (concave) nails.1 It Figure 1. Photograph showing spoon-shaped nails. is primarily recognized as a manifestation of chronic iron deficiency, which may result from a variety of causes, such as malnutrition; gas- Acknowledgment trointestinal blood loss; worms; gastrointestinal Leslie Parker, ELS, provided editorial assistance. malignancy; and celiac disease, as in the pres- ent case.2 Other causes of koilonychia are high References altitude, trauma, and exposure to petroleum 1. Fawcett RS, Linford S, Stulberg DL. Nail abnormalities: clues to systemic disease. Am Fam Physician 2004 Mar 1,3,4 products, and it can even be hereditary. 15;69(6):1417-24. Therefore, spoon-shaped nails should prompt 2. Kumar G, Vaidyanathan L, Stead LG. Images in emer- an evaluation for possible iron deficiency and gency medicine. Koilonychia, or spoon-shaped nails, is generally associated with iron-deficiency anemia. Ann the underlying cause. v Emerg Med 2007 Feb;49(2):243, 250. 3. Prathap P, Asokan N. Familial koilonychia. Indian J Dermatol 2010 Oct;55(4):406-7. 4. Sawhney MP. Ladakhi koilonychia. Indian J Dermatol Venereol Leprol 2003 Mar-Apr;69(2):79-80.

Vivek Kumar, MD, is a Senior Resident at the University College of Medical Sciences in Dilshad Garden, Delhi, India. E-mail: [email protected]. Sourabh Aggarwal, MD, is an Intern at the University College of Medical Sciences in Dilshad Garden, Delhi, India. E-mail: [email protected]. Alka Sharma, MD, is a Postgraduate Student at the University College of Medical Sciences in Dilshad Garden, Delhi, India. E-mail: [email protected]. Vishal Sharma, MD, is a Senior Resident at the University College of Medical Sciences in Dilshad Garden, Delhi, India. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 65 CLINICAL MEDICINE Image Diagnosis: Foot Pain and Fever

William C Krauss, MD, FACEP Perm J 2012 Summer;16(3):66

Figure 1. Anterior-posterior view of the right foot. Figure 2. Lateral view of the right foot.

A 59-year-old man with a history of poorly controlled type II diabetes and hypertension presented to the Emergency Department complaining of 5 hours of severe right foot pain and drainage from the plantar surface. He denied trauma or inciting injury. The patient was unable to walk because of the pain. On physical examination, his temperature was 100.2 F; his heart rate was 105 beats/minute; and he had marked tender erythematous induration with a fluid-filled bulla over the dorsum of his foot. There was foul-smelling exudate draining from the first web space. Palpable crepitus was appreciated. Anterior-posterior (Figure 1) and lateral (Figure 2) films of the foot demonstrate subcutaneous air originating in the dorsum of his foot tracking both to the plantar surface and the posterior ankle region. The patient was treated with broad-spectrum intravenous antibiotics (vancomycin, gentamicin, and metronidazole) and taken to the operating room where an open transmetatarsal amputa- tion took place because of necrotizing fasciitis. Tissue ischemia and “bubbly tissues in the subcutaneous layer” were noted. Tissue cultures grew Enterobacter cloacae, Streptococcus agalactiae, and Staphylococcus aureus. This patient recovered without further complications and was discharged on hospital day 7. Necrotizing fasciitis is characterized by widespread necrosis of the subcutaneous tissue and fascia (as evidenced by air on this patient’s plain films). Typical sites for this infection are the lower extremities, abdomen, and perineum.1 The incidence of such infections in the US is estimated at 500 to 1500 cases per year, with a case-fatality rate of 24% and is more commonly associated with injection drug use, diabetes mellitus, immunosuppression, and obesity.2,3 v

References 1. Roje Z, Roje Z, Matić D, Librenjak D, Dukozović S, Varvodić J. Necrotizing fasciitis: literature review of contemporary strategies for diagnosing and management with three case reports: torso, abdominal wall, upper and lower limbs. World J Emerg Surg 2011 Dec 23;6(1):46. 2. Anava DA, Dellinger EP. Necrotizing soft-tissue infection: diagnosis and management. Clin Infect Dis 2007 Mar 1;44(5):705-10. 3. O’Loughlin RE, Roberson A, Cieslak PR, et al; Active Bacterial Core Surveillance Team. The epidemiology of invasive group A streptococcal infection and potential vaccine implications: United States 2000-2004. Clin Infect Dis 2007 Oct 1;45(7):853-62.

William C Krauss, MD, FACEP, is an Emergency Medicine Physician at the San Diego Medical Center in CA. E-mail: [email protected].

66 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 CLINICAL MEDICINE Development of a Computerized Intravenous Insulin Application (AutoCal) at Kaiser Permanente Northwest, Integrated into Kaiser Permanente HealthConnect: Impact on Safety and Nursing Workload

Christine Olinghouse, MPH/MSN, FNP-BC, BC-ADM, CDE Perm J 2012 Summer;16(3):67-70

diagnosis, hyperglycemia is a potentially Abstract catastrophic catalyst under the stress of Context: The electronic medical record, HealthConnect, at the Kaiser Sunnyside illness or surgery, making it a critical Medical Center in the Northwest used scanned paper protocols for intravenous insulin hospital care issue that can no longer be administration. A chart review of 15 patients on intravenous insulin therapy using state- overlooked. Improvements in the deliv- of-the-art paper-based column protocols revealed 40% deviation from the protocol. A ery of care to patients with diabetes and time study of experienced nurses computing the insulin dose revealed an average of 2 hyperglycemia are therefore needed to minutes per calculation per hour to complete. reduce poor patient outcomes and improve Objective: To improve patient safety and to reduce nursing workload burden with a efficiencies in inpatient diabetes care. computerized intravenous insulin calculator application connected to HealthConnect. Insulin has long been the gold standard Solution: Using Kaiser iLab developers through innovation funding, a computerized for management of hyperglycemia in the protocol was developed and integrated into HealthConnect, with a computerized track- hospital, but the delay in onset and vari- ing system used to store and to analyze intravenous insulin data. ability in absorption of injectable subcu- Outcome: A review of 35 patient charts using computerized insulin infusion tool taneous insulin can present an obstacle indicated 100% accuracy in computations with a reduction of nursing workload from in the acute care setting in some clinical 2 minutes to 30 seconds per calculation. situations.20 The fastest acting injectable Conclusion: Development and operationalizing an integrated intravenous insulin analog insulins have an onset of 15 to 30 calculator into HealthConnect was successfully completed at the Kaiser Sunnyside minutes, a peak of 60 to 120 minutes, and Medical Center, with 97% nursing satisfaction scores and a promise to generate data a duration of 3 to 5 hours.20 Intravenous on intravenous insulin therapy to refine the protocol. insulin is different. Intravenous insulin has a very short half-life of 5 to 7 minutes Introduction ing the perfect glycemic storm in hospital and a biologic effect of 15 to 20 minutes.21 The ideal blood glucose target for hos- medicine.4,5 According to the National The pharmacokinetic differences allow pitalized patients is controversial, yet there Center for Chronic Disease Prevention the clinician to rapidly titrate the dose is no controversy over the importance of and Health Promotion, diabetes affects of insulin on the basis of the individual glycemic control to patient outcomes.1,2 25.8 million Americans.6 Among these US patient’s sensitivity to response to insulin Intravenous (IV) insulin is the most ef- residents, 10.9 million, or 26.9% of those with hourly dose changes. The effective fective way to provide glucose control in aged 65 years and older, had diabetes in results of immediate and continuous IV hospitalized patients, but state-of-the-art 2010.6 Medical expenses for patients with delivery of insulin are hampered only paper column-based protocols are labor diabetes are more than 2 times higher than by potential safety hazards, as insulin is intensive and can result in errors.3 Com- for those without diabetes.6 Direct medical one of the top 5 high-alert medications,22 mercial computerized IV insulin programs costs account for $116 billion, and indirect and by the increased workload of hourly currently do not integrate into Kaiser costs account for $58 billion for disability, point-of-care blood glucose testing to Permanente (KP) HealthConnect, the elec- work loss, and premature mortality.6 determine the drip rate.23 tronic medical record. Therefore, there is Diabetes and hyperglycemia are very Protocol orders are considered medica- a definite need for an integrated,- com common in hospitalized patients. Studies tion orders and, as such, deviation from puterized IV insulin dose application that continue to reveal associations between the protocol without a physician order is easily accessed by the bedside nurse. uncontrolled hyperglycemia and poor is considered a medication error. With Stress hyperglycemia, inflammatory outcomes in clinical conditions such as dozens of protocols to choose from, the mediators, underlying β-cell failure, hy- stroke,7,8 myocardial infarction,9-11 coronary ideal protocol is one that can be executed peralimentation, corticosteroid therapy, artery bypass grafting,12-14 other surgeries,15 by nursing staff in response to a single and vasopressor therapy are just a few of cancers,16 and critical illness.17-19 Although physician order and is simple enough to the contributors to hyperglycemia creat- diabetes may not be the primary admitting compute in a reasonable amount of time

Christine Olinghouse, MPH/MSN, FNP-BC, BC-ADM, CDE, is a Registered Nurse at the Kaiser Sunnyside Medical Center in Clackamas, OR. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 67 CLINICAL MEDICINE Developmentof a Computerized Intravenous Insulin DevelopmentApplication (AutoCal) of a Computerizedat Kaiser Permanente IntravenousNorthwest, Integrated Insulininto ApplicationKaiser Permanente (AutoHealthConnect: Cal) at KaiserImpact Permanenteon Safety and Nursing Northwest,Workload Integrated into Kaiser Permanente HealthConnect: Impact on Safety and Nursing Workload

with a low margin for error.24 Currently KSMC has used a column-based protocol, video camera recording of a nurse de- no single protocol has proved ideal for all which has been periodically revised in termining the insulin rate from the paper situations.25 In fact, comparison of various response to targeted quality improvement protocol, revealed an average of 2 minutes published protocols has proved difficult chart reviews as well as changing recom- to calculate the insulin infusion rate. For because of variations in the definition of mendations for glycemic targets (see safety, the protocol requires a double hypoglycemia, methods employed for Kaiser Sunnyside Medical Center Insulin check on each calculation. Therefore, in blood glucose measurement, and types of Infusion Protocol [target 90-140] on our a 12-hour shift, this would translate into blood samples used in assays as Web site at: www.thepermanentejournal. 24 minutes for the first nurse plus 24 min- … it took an well as the wide range of patients org/files/Summer2012/InsulinInfusion- utes for the verifying nurse, for a total of from surgical to medical popula- Protocol.pdf). 48 minutes spent on calculating the rate. average of tions and the variability of nursing The frequency of IV insulin therapy The recognition that experienced 30 seconds workloads.26 was determined using pharmacy dispens- nurses spent 48 minutes each shift, with per dose In a study by Malesker and ing data and verified with chart audit. IV 65% accuracy, became the platform for calculation associates27 in 2007, nurses’ per- insulin is used in 3 to 8 patients a day at looking for a safer and more efficient way using AutoCal ceptions on the impact of tight KSMC, which translates into 72 to 192 in- to deliver care. In addition, KPNW began compared glycemic control on workload was sulin dose decisions made each 24 hours, to roll out the inpatient electronic record, with 2 studied. Deviations from the proto- or 2160 to 5760 potential chances for HealthConnect, in 2009. As the hospital minutes with col accounted for 75% of glucose medication error per month. In late 2008, changed to electronic documentation and the paper measures, averaging greater than a review of 15 charts in which IV insulin order entry, the dilemma of managing an version. 9 per patient. Various explanations was the therapeutic modality was con- algorithm-based protocol necessitating were given for the deviation, but ducted to determine the current efficacy computer documentation of hourly blood 2 reasons that compared with the and safety of the existing column-based glucose measurements, insulin doses, KP Northwest (KPNW) experience were IV insulin protocol. Surprisingly the actual and paper-column protocol became an time to calculate insulin infusion rate and protocol was difficult to evaluate because added challenge. The paper 9-column the perceived fear of hypoglycemia, which only 172 of the 262 decision points, or protocol became a scanned document in gave way to adjusting the medication order approximately 65%, demonstrated ad- HealthConnect, and there were challenges without consulting a physician. In the state herence to the protocol, from which we transferring patient data from the paper of Oregon, registered nurses cannot legally inferred there were frequent unintentional protocol to HealthConnect. change medication orders independently errors in calculating the insulin drip rate. without consulting a physician.28 In addi- This presented a safety concern. Innovating a Solution tion, a physician cannot expand nursing The time it takes an experienced regis- Although limited, the safety data on scope of practice by directing a nurse to tered nurse to figure out the insulin dose computerized medical decision-making pro- perform an activity that is not recognized was investigated. A time study, using a grams appeared promising.29 Technology by the nursing profession as proper to be performed by a nurse in Oregon.28

The Kaiser Sunnyside Medical Center Experience Kaiser Sunnyside Medical Center (KSMC), a 250-bed tertiary care com- munity hospital in Clackamas, OR, has a very high incidence of diabetes and hyperglycemia, with the attendant chal- lenges in inpatient management. A review of 35 paper medical charts from various units at KSMC from January to March 2006 indicated that 62% of these patients had some degree of hyperglycemia, defined as 2 fasting blood glucose levels above 140 mg/dL. Since 1995, KSMC has reaped the benefits of IV insulin therapy not only in intensive care units (ICUs) and step-down units but also on medical-surgical units. It has allowed patients to stay on the general wards while being actively treated for Figure 1. AutoCal automated intravenous insulin dose calculator. hyperglycemia with the precision permit- hr = hour; mins = minutes; IV = intravenous; KCL = potassium chloride; MRN = medical record number; ted by an IV insulin protocol. Since 2007, PDT = Pacific Daylight Time.

68 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 CLINICAL MEDICINE DevelopmentDevelopmentof a Computerized of a ComputerizedIntravenous IntravenousInsulin Application Insulin(AutoCal) Applicationat Kaiser Permanente (AutoNorthwest, Cal) at KaiserIntegrated Permanenteinto Kaiser Permanente Northwest,HealthConnect: Impact on Safety and Nursing Workload Integrated into Kaiser Permanente HealthConnect: Impact on Safety and Nursing Workload

seemed the logical solution to the repeti- asked what would make this tool easier tive compliance of following a prescribed to use, the overwhelming response from algorithm.30 Initially we looked at com- the nurses was to integrate the tool into mercial Web-based products such as Glu- HealthConnect. commander (Glytec Systems, Greenville, The pilot test’s initial success allowed SC) and EndoTool (Hospira, Lake Forest, funding to continue into 2010, and efforts IL) but found at that time most commer- to integrate into HealthConnect were cial products required the purchase of begun. The developers programmed a hardware and software. Integration with “bridge” designed to launch AutoCal di- an electronic medical record required rectly from the patent’s chart to the insulin one computer for HealthConnect and infusion calculator, which was completed Figure 2. Comparison of accuracy between manual paper one computer for the IV insulin program. by December 2010. A follow-up survey of computation and computerized AutoCal. In addition, local hospitals using these nurse users demonstrated an impressive products were using IV insulin therapy 97% satisfaction. Training of all nursing only in the ICU. The sheer volume of staff at KSMC was completed, and refine- implementing a commercial computerized ment of the application continued into Web-based product throughout KSMC was 2011. As of October 2011, AutoCal has cost prohibitive. been fully integrated and is now used to In March 2009, we applied for and calculate insulin infusion rates on every received funding from KP Information hospital unit at KSMC. Using AutoCal data Technology Innovation Fund for Technol- from October 2011 forward, we can gener- ogy. Collaborating with the developers ate hospitalwide IV insulin data, which will from the Innovation and Advanced Tech- be used to refine the tool. nology iLabs allowed us to translate the paper-based protocol into a Web-based Next Steps application, which we nicknamed Auto- Currently, analysis of IV insulin Cal. KP developers were able to rapidly therapy safety and efficacy remains prototype a Web-based calculator in 6 a time-consuming process of manual Figure 3. Observation of registered nurse time for paper- based calculation vs computerized AutoCal calculation. months, with weekly check-ins for revi- chart review. AutoCal was built with sions and updates based on input from the promise of electronic storage of staff nurses experimenting with the appli- glucose values and insulin dose changes actual runs of IV insulin infusions to con- cation. We pilot tested the use of AutoCal available for faster, more rigorous data tinuously analyze and improve the safety from September 2009 to December 2009 analysis. The current protocol is not log- and efficacy of the IV protocol. AutoCal, (Figure 1). AutoCal replaced the paper arithmic, and the application was built a HealthConnect-integrated IV insulin version on the cardiovascular ICU and 3 to allow clinicians with administrative dose calculator, promises to remain an South, a medical-surgical telemetry unit privileges the ability to change doses to essential tool in caring for patients with specializing in caring for patients with the protocol. Now KPNW is poised to hyperglycemia. v diabetes and renal disease. These units make rational adjustments as needed to were chosen because cardiovascular sur- our current IV insulin protocol based on Disclosure Statement gical patients with dysglycemia receive data from hundreds of patient-hours on IV This project was supported in part by an in- IV insulin therapy for at least 48 hours insulin regimens. AutoCal will now allow novation grant from Kaiser Permanente iLab, postoperatively, and because 3 South has us to offer patients ongoing improvements Program Office, Oakland, CA. The author(s) have no conflicts of interest a population that frequently requires IV in glycemic management while continu- to disclose. insulin management. ing to give the bedside nurses tools to At the end of the 3-month pilot test, safely and cost-effectively deliver care. Acknowledgment charts were reviewed. The results were Kathleen Louden, ELS, of Louden Health impressive, revealing 100% adherence Conclusion Communications provided editorial assistance. to the protocol using AutoCal compared Hyperglycemia should not be treated as with 65% accuracy with paper (Figure 2). a casual finding in hospitalized patients. References A follow-up time study, again using a IV insulin therapy can be more safely and 1. Moghissi ES, Korytkowski MT, DiNardo M, et video camera, demonstrated an average efficiently delivered on hospital wards al; American Association of Clinical Endocrino- logists; American Diabetes Association. Ameri������- of 30 seconds per dose calculation using with the use of computerized IV dose can Association of Clinical Endocrinologists AutoCal compared with 2 minutes with calculators. AutoCal has simultaneously and American Diabetes Association consensus the paper version (Figure 3). A nursing increased nurse satisfaction in caring for statement on inpatient glycemic control. Endocr Pract 2009 Jun;32(6):1119-31. satisfaction survey was also administered patients with hyperglycemia who require 2. American Diabetes Association. Standards of demonstrating 87% satisfaction with the IV insulin management. There is also the medical care in diabetes—2011. Diabetes Care stand-alone version of AutoCal. When capacity to use historic data gathered from 2011 Jan;34 Suppl 1:S11-61.

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 69 CLINICAL MEDICINE Developmentof a Computerized Intravenous Insulin DevelopmentApplication (AutoCal) of aat ComputerizedKaiser Permanente Northwest,IntravenousIntegrated Insulininto Kaiser ApplicationPermanente (AutoHealthConnect: Cal) at KaiserImpact on PermanenteSafety and Nursing Northwest,Workload Integrated into Kaiser Permanente HealthConnect: Impact on Safety and Nursing Workload

3. Aragon D. Evaluation of nursing work effort cemia to tight control in patients undergoing 22. Santell JP, Hicks RW, McMeekin J, Cousins and perceptions about blood glucose testing coronary artery bypass grafting. J Thorac DD. Medication errors: experience of the in tight glycemic control. Am J Crit Care 2006 Cardiovasc Surg 2011 Feb;141(2):543-51. United States Pharmacopeia (USP) MEDMARX Jul;15(4):370-7. 13. McAlister FA, Man J, Bistritz L, Amad H, Tan- reporting systm. J Clin Pharmacol 2003 4. van den Berghe G, Wouters PJ Weekers F, et al. don P. Diabetes and coronary bypass surgery: Jul;43(7):760-7. Intensive insulin therapy in critically ill patients. an examination of perioperative glycemic 23. Anger KE, Szumita PM. Barriers to glucose con- N Engl J Med 2001 Nov 8;345(19):1359-67. control and outcomes. Diabetes Care 2003 trol in the intensive care unit. Pharmacotherapy 5. Magaji V, Johnston JM. Inpatient management May;26(5):1518-24. 2006 Feb;26:214-28. of hyperglycemia and diabetes. Clin Diabetes 14. Furnary AP, Gao G, Grunkemeier GL, et al. 24. Ahmann AJ, Maynard G. Designing and imple- 2011;29(1):3-9. Continuous insulin infusion reduces mortality menting insulin infusion protocols and order 6. National diabetes fact sheet, 2011 [monograph in patients with diabetes undergoing coronary sets. J Hosp Med 2008 Sep;3(5 Suppl):42-54. on the Internet]. Atlanta, GA: Centers for Dis- artery bypass grafting. J Thorac Cardiovasc 25. Wilson M, Weinreb J, Hoo GW. Intensive ease Control and Prevention; 2011 [cited 2012 Surg 2003;125(5):1007-21. insulin therapy in critical care: a review of 12 Jul 3]. Available from: www.cdc.gov/diabetes/ 15. Latham R, Lancaster AD, Covington JF, protocols. Diabetes Care 2007 Apr;30(4):1005- pubs/pdf/ndfs_2011.pdf. Pirolo JS, Thomas CS Jr. The association of 11. 7. McCormick M, Hadley D, McLean JR, Macfar- diabetes and glucose control with surgical-site 26. Krikorian A, Ismail-Beigi F, Moghissi ES. Com- lane JA, Condon B, Muir KW. Randomized, infections among cardiothoracic surgery parison of different insulin infusion protocols: a controlled trial of insulin for acute poststroke patients. Infect Control Hosp Epidemiol 2001 review of recent literature. Curr Opin Clin Nutr hyperglycemia. Ann Neurol 2010 May; Oct;22(10):607-12. Metab Care 2010 Mar;13(2):198-204. 67(5):570-8. 16. Giovannucci E, Harlan DM, Archer MC, et 27. Malesker MA, Foral PA, McPhillips AC, 8. Bruno A, Kent TA, Coull BM, et al. Treat- al. Diabetes and cancer: a consensus report. Christensen KJ, Chang JA, Hilleman DE. An ment of hyperglycemia in ischemic stroke Diabetes Care 2010 Jul;33(7):1674-85. efficiency evaluation of protocols for tight (THIS): a randomized pilot trial. Stroke 2008 17. Krinsley JS. Effect of an intensive glucose glycemic control in intensive care units. Am J Feb;39(2):384-9. management protocol on the mortality of Crit Care 2007 Nov;16(6):589-98. 9. Malmberg K. Prospective randomised study critically ill adult patients. Mayo Clin Proc 2004 28. Oregon State Board of Nursing scope-of- of intensive insulin treatment on long term Aug;79(8):992-1000. Erratum in: Mayo Clin practice decision-making guideline for RN and survival after acute myocardial infarction Proc 2005 Aug;80(8):1101. LPN practice [monograph on the Internet]. in patients with diabetes mellitus. DIGAMI 18. Griesdale DE, de Souza RJ, van Dam RM, et al. Portland, OR: Oregon State Board of Nursing (Diabetes Mellitus, Insulin Glucose Infusion in Intensive insulin therapy and mortality among (OSBN). 2006 Nov 9 [cited 2012 Jun 6]. Avail- Acute Myocardial Infaction) Study Group. BMJ critically ill patients: a meta-analysis including able from: http://oregon.gov/OSBN/pdfs/poli- 1997 May 24;314(7093):1512-5. NICE-SUGAR study data. CMAJ 2009 Apr cies/scope_decision_tree.pdf. 10. Sala J, Masiá R, González de Molina FJ, et al; 14;180(8):821-7. 29. Morris AH. Developing and implementing REGICOR Investigators. Short-term mortal- 19. van den Berghe G, Mesotten D, Vanhorebeek computerized protocols for standardization of ity of myocardial infarction patients with I. Intensive insulin therapy in the intensive care clinical decisions. Ann Intern Med 2000 Mar diabetes or hyperglycaemia during admis- unit. CMAJ 2009 Apr 14;180(8):799-800. 7;132(5):373-83. sion. J Epidemiol Community Health 2002 20. Holcomb BW, Wheeler AP, Ely EW. New ways 30. Hoekstra M, Vogelzang M, Verbitskiy E, Nijsten Sep;56(9):707-12. to reduce unnecessary variation and improve MW. Health technology assessment review: 11. Ishihara M, Kojima S, Sakamoto T, et al; outcomes in the intensive care unit. Curr Opin Computerized glucose regulation in the inten- Japanese Acute Coronary Syndrome Study In- Crit Care 2001 Aug;7(4):304-11. sive care unit—how to create artificial control. vestigators. Acute hyperglycemia is associated 21. Home PD, Massi-Benedetti M, Shepherd GA, Crit Care 2009;13(5):223. with adverse outcome after acute myocardial Hanning I, Alberti KG, Owens DR. A com- infarction in the coronary intervention era. parison of the activity and disposal of semi- Am Heart J 2005 Oct;150(4):814-20. synthetic human insulin and porcine insulin in 12. Bhamidipati CM, LaPar DJ, Stukenborg GJ, et normal man by the glucose clamp technique. al. Superiority of moderate control of hypergly- Diabetologia 1982 Jan;22(1):41-5.

Blessings of Humanity The trained nurse has become one of the great blessings of humanity, taking a place beside the physician and the priest, and not inferior to either in her mission. — Sir William Osler, MD, 1849-1919, physician, clinician, pathologist, teacher, diagnostician, bibliophile, historian, classicist, essayist, conversationalist, organizer, manager, and author

70 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 COMMENTARY Solving the Emergency Care Crisis in America: The Power of the Law and Storytelling

John Maa, MD Perm J 2012 Summer;16(3):71-74

fasted for the procedures that day. The cardiologist spoke with Abstract the patient and her family in the afternoon on Friday, and ex- An Emergency Department visit that ended tragically prompt- plained that because of the delays in her admission, the planned ed my yearlong journey to Washington, DC, and emergency procedures had been cancelled, and she would remain on blood rooms across the country to search for solutions to the national thinners over the weekend until the transesophageal echocar- crisis in emergency care. I reached the conclusion that the crisis diogram and cardioversion could be performed on Monday. is entirely solvable, and I developed a three-part solution that Unexpectedly, on Saturday afternoon, the patient suffered a includes 1) nationally standardizing and coordinating care, 2) sudden and massive stroke with complete occlusion of the ca- prioritizing resources and incentives in the delivery of emergency rotid artery from the arch of the aorta to the intracranial branches care, and 3) inspiring young clinicians to careers in emergency of the middle cerebral artery. She was rushed to the operating care. Physicians across America should now harness the power room where a neurosurgeon attempted to remove the blood of storytelling to strengthen both the delivery of patient care and clot, but the carotid artery tore, leading to massive intracranial health care reform efforts on Capitol Hill. bleeding and brain death. She was kept alive in the Intensive Care Unit until preparations for her funeral could be completed. Meaning of the Music She died at noon on the following Tuesday, 112 hours after Combining music with surgery is what many surgeons do she first stepped into the hospital. The patient was my mother. routinely. In a concert lecture I attended years ago, San Fran- Some of you may recognize this story from an article in the cisco Symphony conductor Michael Tilson Thomas shared his New England Journal of Medicine that was published on the strategy to draw out the best performance from the orchestra. He 2½-year anniversary of my mother’s passing “The Waits that challenges each member with three questions as they prepare Matter.”1 I was amazed by the response from around the nation, for a new composition. First, what was the political and social and even the world, to the coverage the story received in The historic context that was the inspiration for the music’s creation? New York Times2 and The Wall Street Journal.3 Second, what was the composer trying to communicate? But Four months after the article was published, I received a these questions only serve as the foundation for the third most surprise in the mail, a $300 check—the honoraria granted to important question: what does the music mean to you? Perhaps Perspectives authors by the Massachusetts Medical Society. I we should all carefully reflect what strengthening the emergency decided to use the money to pay for a copy of my mother’s care system means to us individually before we collectively at- medical record. It was difficult to relive the final hours before my tempt to define its future. mother’s devastating stroke, to hear her final words as recorded in the nurse’s notes. After reviewing the 811 pages, it became A Patient’s Story clear that there was more to the story of my mother’s death. The My personal answer to Michael Tilson Thomas is revealed admission notes documented that she should have been started through the story of a patient. This particular patient was 69 on heparin shortly after being admitted with a heart rate as years old, and in December of 2008 she woke with an irregular fast as 160. However, the heparin was not started until 11 am heart beat and mild shortness of breath. Her heart accelerated the next day, almost 15 hours later. It is unclear whether the to 130 beats/minute on a home blood pressure cuff, but her medication was unavailable from the pharmacy, an order was blood pressure was stable later that day when she was seen missed, or there was difficulty prescribing the anticoagulation. in the Emergency Department (ED). She was diagnosed with A transthoracic echocardiogram had been normal the evening of rapid atrial fibrillation and admitted around 8 pm on a Thursday admission, and I believe the lethal thrombus propagated during evening for anticoagulation therapy with heparin, and a plan a prolonged period without anticoagulation. for electrical cardioversion the next day after a transesophageal echocardiogram. A National Crisis Because an inpatient bed was unavailable, she spent the entire Tragedies like this are not uncommon in the US. An Institute night in the ED. She was not admitted to a hospital bed until late of Medicine report detailed a national crisis in emergency care Friday morning, after other patients had been discharged. She in 2006;4 six years later, many of the challenges of overcrowding, had slept poorly in the ED hallways, and was hungry after having ambulance diversion, and the boarding of admitted patients (like

John Maa, MD, is an Assistant Professor in Residence in Surgery at the University of California San Francisco. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 71 COMMENTARY Solving the Emergency Care Crisis in America: The Power of the Law and Storytelling

my mother) in the ED have only become more dire. A national As I traveled across our amazingly beautiful country, I noted leader in researching this crisis is Renee Hsia, MD, from San several recurring themes. In some parts, one can drive through Francisco General Hospital. In a landmark study in the Journal deserts for hundreds of miles and not see an ED, whereas in of the American Medical Association, she plotted the survival of some cities one can walk out of one Level 1 Trauma center hospital emergency rooms on Kaplan-Meier curves, identifying right into another one a few blocks away. I was amazed by the the financial characteristics predictive of the mortality of an ED, billboards advertising how short waiting times to be seen were including for-profit status and safety-net status.5 in certain EDs, suggesting the delivery of ED care is becoming At the University of California San Francisco (UCSF), my competitive. I noted a wide variability and lack of standardiza- career has focused on strengthening emergency surgical care tion not only in care, but also in organization. In some hospitals, through the dedicated availability of a surgeon to see patients the ED is part of the Department of Medicine, in others it is part needing surgery in the ED and hospital. This surgical hospitalist of the Department of Surgery, and in yet others, it is its own model has been implemented at over 400 hospitals across the stand-alone department, which I believe is superior. As a mystery country since Hobart Harris, MD; Jessica Gosnell, MD; Jonathon shopper, I often visited EDs unannounced through the front Carter, MD; Robert Wachter, MD; and I introduced the program door, to witness care delivery through the eyes of the patient. in 2005.6 However, I was still unable to change the lethal out- In some EDs I was greeted by a valet for parking or by a nurse come of delays in treatment as my mother received care at a with a cup of coffee, and at others by ominous and foreboding different institution. security personnel seated behind bulletproof glass and metal Unfortunately, the passage of the Affordable Care Act (ACA)7 detectors. I marveled that the most glistening and magnificent may only make stories like my mother’s more common, if parts of hospitals were the cancer centers, and hope one day lack of access to primary care results in increased numbers of that towers dedicated to emergency care will also arise. I was Americans seeking access to an already overwhelmed emer- pleased to see the emergence of dedicated children’s EDs similar gency system. The American College of Emergency Physicians to the new UCSF Benioff Children’s Hospital in Mission Bay, (ACEP) has identified the passage of a law in 1986—Emergency highlighting that children are not simply small adults. One of Medical Treatment and Active Labor Act (EMTALA),8 recorded the most impressive EDs was at UCSF Fresno, which I regard as the Code of Federal Regulations 489.24,9 as a key driver of as a premier ED nationally. I would like to thank Greg Hendey, this crisis because it mandates public access to emergency care MD, for his enlightening tour of this amazing 70-bed, Level-1 regardless of one’s ability to pay. ACEP has tirelessly worked Trauma ED, with state-of-the-art trauma resuscitation bays, a to reform this well-intended but underfunded mandate that burn unit, and precise attention to efficiency and economy in increases the burden of uncompensated care, forcing some patient flow and movement as it serves an annual ED census of EDs to close, negatively impacting quality of care. Maybe there over 110,000 patients. is some comfort that similar challenges in emergency care are being reported worldwide. Three-Part Solution On the basis of my experiences around the country, I’ve A Journey to American Emergency reached the conclusion that the emergency care crisis is en- Departments tirely solvable, through better distribution and prioritization of The untimely death of my mother inspired me to take almost resources and incentives, and by standardizing and coordinating a year off to work on Capitol Hill with our elected officials, the care nationally. I believe the solution involves three things: media, and leading medical organizations to better understand 1) we must inspire young people to work in emergency care; the challenges in emergency care. I was also inspired by Abra- 2) we need to rewrite the laws, the ACA,7 and EMTALA;8 and ham Flexner, the champion of medical education reform, to visit 3) we must tell powerful stories to attract the attention of the media over 50 EDs to take inventory and search for new solutions. I and of Capitol Hill, as the pathway forward to changing the law. rode on planes and trains and drove over 7000 miles last sum- mer to meet with and to hear the personal stories of the people Inspiring Young Physicians who had written to me after the publication of my article in the Regarding inspiring more young physicians to work in emer- New England Journal of Medicine.1 What struck me was the gency care, Thomas C Ricketts, MD, and George F Sheldon, recurring theme of personal loss they too had suffered from an MD, at University of North Carolina Chapel Hill have prepared overwhelmed emergency system. Yet we should also not forget excellent maps highlighting areas with shortages of surgeons, the successful outcome for Congresswoman Gabrielle Giffords documenting nearly 1200 counties in America without a general after the deadly rampage in Arizona in 2011; the story of her surgeon available.11 A remarkable solution proposed in Washing- amazing recovery catalyzed a positive change in perception in ton, DC, is to create a General Surgery National Health Service Washington, DC, about the heroism and courage of emergency Corps to deploy board-certified surgeons for 3- to 6-month physicians and trauma surgeons.10 Indeed it is a privilege and an rotations across rural America.12 A visionary federal approach honor to take emergency call, and the need for emergency care could be similarly applied to all specialties, and would require reflects the trust that society places in its emergency workforce. the creation of new maps for Capitol Hill and US Department Ultimately, identifying ways to support those courageous physi- of Health and Human Services to determine where which spe- cians willing to place themselves on the front lines of clinical cialties are needed most. A starting point could be the current care will be key to solving the emergency care crisis. distribution of critical-access hospitals nationally, or alternatively,

72 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 COMMENTARY Solving the Emergency Care Crisis in America: The Power of the Law and Storytelling

the distribution of post offices. Equally important is to identify of guns, underuse of seatbelts, and drinking and driving.15 where to recruit physicians willing to relocate temporarily. Perhaps the time has arrived to consider a 28th Amendment I believe we have an opportunity to harness the altruism of to decide whether access to basic medical care and emer- American physicians who seek to address global disparities in gency treatment is a constitutionally guaranteed right? Only health care (particularly at the UCSF School of Medicine through after reaching agreement here can our nation then move to the visionary efforts of Haile Debas, MD), and to persuade them the equally important discussion of the responsibilities and to travel to hospitals in our own beautiful country. expectations inherent in that right. More than 25 years ago, a young surgeon arrived in Tuc- son, AZ, to solve the challenges of Arizona’s emergency care The Power of Storytelling Regardless of system. The surgeon dedicated his career to implementing a In Washington, DC, two of the profound one’s profession, trauma system in southern Arizona grounded in the concept of lessons I learned from attending Capitol Hill the better a regionalization. The successful outcome for Congresswoman hearings are the power of the law, and the storyteller you Giffords is a testament to the efforts of that surgeon—Richard power of storytelling as the gateway to the are, the greater Carmona, MD, a graduate of both the UCSF School of Medi- media and television to convince Congress your chances of cine and the UCSF General Surgery Residency Program—who and State legislatures to enact new laws. I succeeding by 13 would later become the 17th Surgeon General of the US. Our visited the R Adams Cowley Shock Trauma fully engaging nation can and must do better to improve our emergency care Center in Maryland and learned of R Adams and inspiring delivery system. The time has arrived to focus time and energy Cowley, MD, who coined the term “the golden your listeners. to solve the challenges facing emergency rooms nationwide. I hour,” and pioneered the concepts of advanced do believe that at institutions like Kaiser Permanente and UCSF, trauma life support and regionalized care to we have the special opportunity to redefine and transform dedicated trauma facilities.16 The tipping point came in 1975, emergency care nationally, by thinking differently. Perhaps when attorney Dutch Ruppersberger was involved in a near further answers will come from one of the medical students fatal automobile accident and survived after being transported or residents in training today, who will follow Dr Carmona’s directly to Shock Trauma, bypassing other nontrauma EDs en inspirational path and define their own personal answer to route. Mr Ruppersberger later ran for public office and champi- Michael Tilson Thomas’s question. oned both Shock Trauma and regionalized care by sharing his personal story.16 Many of you are likely aware that Parkinson’s Rewriting the Law disease was one of the highest-funded diseases by Congress Turning to the second proposed solution of rewriting the for a number of years, as a result of the passionate testimony law, this is at the heart of activity in Washington, DC. Capitol and eloquence of Michael J Fox on Capitol Hill.17 Hill writes the laws, the Supreme Court reviews these laws On hearing the words “Once upon a time …” a child instantly and determines their constitutionality, and the President (often recognizes that a story will follow, perhaps the fairy tale of a an attorney) prepares Executive Orders that carry the force of courageous hero that will capture their imagination and simul- the law. A few months after I first arrived in Washington, a taneously enlighten, empower, and inspire hope in the young Congressional staffer shared with me the following: “You have mind. The art of storytelling to educate continues throughout our a number of excellent ideas, but here is the next challenge for lifetimes, as we share stories that reveal the valuable lessons we you. On the game show Jeopardy, one must phrase the answer have learned from our successes and failures to create a deeper in the form of a question. In Washington, one must phrase the bond with others. Regardless of one’s profession, the better a proposed solution in the language of a law that can be presented storyteller you are, the greater your chances of succeeding by to Congress for a vote.” fully engaging and inspiring your listeners. We must recognize that market forces have led to the clo- In an article in the Journal of Patient Safety in 2010,18 actor sure of EDs all across America in the past decade; leaving this Dennis Quaid highlighted a secret weapon in the national efforts problem to the business sector will not be the final answer. A to improve patient safety—of the potential of “story power as single institution will be unable to solve this crisis on a larger an untapped vehicle to inform, equip, and challenge leaders to scale, and hospitals will need to work together rather than drive change that can save lives, save money, and build value in compete against one another. Accountable care organizations communities.” He defined “story power” as the ability to change should be charged to solve overcrowding and boarding. Weber or reinforce the behavior of others by telling a story, as a call et al wrote an excellent paper about the positive long-term to action that harnesses the power of full engagement. Quaid results of a new policy in England mandating either patient highlighted the story of Josie King, an 18-month-old infant who admission or discharge home within four hours of arrival at died at one of America’s most famous hospitals as a result of an ED.14 It may take rewriting the ACA and EMTALA to use missed orders to start oral fluids, followed by a medication er- the “law” to instill “order” in the ED. If this is unsuccessful, ror. A 10-minute videotaped interview with her mother, Sorrel reforming Medicare Part A reimbursement to hospitals for King, recounting the tragic story has now been used in over boarded patients may become necessary. Reforming patient 2000 hospitals through the Josie King Patient Safety Initiative to expectations is also essential. The ED has been described transform the delivery of health care worldwide. by Kate Heilpern, MD, the Chair of Emergency Medicine The power of storytelling is repeated in recounting the near- at Emory, as a mirror for society’s problems—the overuse death experience of Quaid’s newborn twins Zoe Grace and

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 73 COMMENTARY Solving the Emergency Care Crisis in America: The Power of the Law and Storytelling

Thomas Boone Quaid, who received 1000 times the intended 3. Gerencher K. Long hospital wait times can be deadly. Tackling treat- ment delays is vital as health-system pressures mount [monograph on dosage of the blood thinner heparin, leading to a two-day battle the Internet]. New York: The Wall Street Journal; 2011 Sep 7 [cited 2012 between life and death. The larger tragedy for our nation is that Jul 15]. Available from: http://articles.marketwatch.com/2011-09-07/fi- the same medication error occurred 11 months earlier elsewhere, nance/30732651_1_health-care-system-health-care-health-insurance/. 4. Institute of Medicine Committee on the Future of Emergency Care in the killing other children, and has also happened since, because of United States Health System. Hospital-based emergency care: at the break- the look-alike packaging of 2 different concentrations of heparin. ing point. Washington, DC: National Academies Press; 2006. Quaid has been inspired to share his story publicly to become 5. Hsia RY, Kellermann AL, Shen YC. Factors associated with closures of emergency departments in the United States. JAMA 2011 May a champion for high-quality care. 18;305(19):1978-85 “A slow cultural shift over the past 20 years, led by television 6. Maa J, Gosnell JE, Carter JT, Wachter RM, Harris HW. The surgical hospital- (from St Elsewhere to ER) has been humanizing society’s view ist: a new solution for emergency surgical care? Bull Am Coll Surg 2007 of the practice of medicine.”19 This comment was an accolade Nov;92(11):8-17. 7. The Patient Protection and Affordable Care Act of 2010. Public Law 111- to Atul Gawande, MD, MacArthur Genius award recipient and 148, 111th Congress, 124 Stat 119, HR 3590, enacted 2010 Mar 23. noted author. His writings in the New Yorker have influenced the 8. Advocacy: EMTALA [monograph on the Internet]. Irving, TX: American political debate about health reform. But whereas singular medi- College of Emergency Physicians; 2012 [cited 2012 Jul 15]. Available from: www.acep.org/Advocacy/EMTALA/. cal voices like his are having an impact, overall the profession 9. Code of Federal Regulations: 42 CFR 489.24 of medicine is failing to have an effect in Washington, DC, with 10. Commentary—solving the emergency surgical care crisis [monograph elected officials. The impact of the Supreme Court decision in on the Internet]. Rockville, MD: Elsevier Global Medical News; 2010 [cited 2012 Jul 15]. Available from: http://infoviewer.biz/infodisplay/story/ June upholding the ACA has been felt worldwide, and the war imn062020121511123311.html?APP=7&CU=imn5804 on Capitol Hill over health care reform has erupted once again. 11. Belsky D, Ricketts T, Poley S, Gaul K, Fraher K, Sheldon G. Surgical deserts As physicians, we must now harness the power of storytelling to in the US: places without surgeons. Chapel Hill, NC: American College of Surgeons Health Policy Research Institute; 2009 July;(2):1-4. enlighten Capitol Hill to enact new laws to strengthen EMTALA 12. Johns M. Mandatory national health service: an idea whose time has come. and the ACA to support emergency health care personnel, who JAMA 1993;269(24):3156-7. struggle courageously each day to meet the needs of society. 13. Carmona RH. The journey of a lifetime—from general surgeon to surgeon As the debate rages forward again, perhaps patients and general. J Trauma 2003 Oct;55(4):595-8. 14. Weber EJ, Mason S, Carter A, Hew RL. Emptying the corridors of shame: physicians across America will succeed in infusing the discus- organizational lessons from England’s 4-hour emergency throughput target. sion with the hopes, failures, and triumphs from their personal Ann Emerg Med 2011 Feb;57(2):79-88.e1. stories. Harold Goddard once said: “The destiny of the world 15. Great scholars great works: Kate Heilpern, Emergency Medicine [mono- graph on the Internet]. Atlanta, GA: Emory Uniersity; 2009 [cited 2012 Jul is determined less by the battles that are lost and won than by 15]. Available from: www.emory.edu/PROVOST/greatscholars_old/KateHeil- the stories it loves and believes in.”20 Whether one chooses pern.htm. to apply the power of storytelling to become a better patient, 16. umm.edu/shocktrauma/ [home page on the Internet]. Baltimore, MD: University of Maryland R Adams Cowley Shock Trauma Center; 2012 [cited physician, health care advocate, or health policy leader, the time 2012 Jul 15]. Availabel from: www.umm.edu/shocktrauma/. has clearly arrived to enlighten Capitol Hill to enact new laws 17. Subcommittee hears testimony on stem cell research [monograph on the grounded in the principles of fairness, equality, and justice to Internet]. Atlanta, GA: CNN Health; 2000 Sep 14 [cited 2012 Jul 15]. Available from: http://articles.cnn.com/2000-09-14/health/stemcell.hear- fulfill the overarching intent of quality, efficiency, and safety in ing.02_1_cell-research-embryos-disease-research?_s=PM:HEALTH health care in America. v 18. Quaid D, Thao J, Denham CR. Story power: the secret weapon. J Patient Saf 2010 Mar;6(1):5-14. 19. Smith D. Under the microscope [monograph on the Internet]. Washing- References ton, DC: The Atlantic Monthly Group; 2002 May 1 [cited 2012 Jul 15]. 1. Maa J. The waits that matter. New Engl J Med 2011 Jun 16;364(24):2279-81. Available from: www.theatlantic.com/past/docs/unbound/interviews/ 2. Chen P. When hospital overcrowding becomes personal [monograph on the int2002-05-01.htm. Internet]. The New York Times 2011 Jul 14 [cited 2012 Jul 3]; Sect: Health/ 20. Goddard H. The meaning of Shakespeare. Vol 2. London: University of Science. Available from: http://well.blogs.nytimes.com/2011/07/14/when- Chicago Press; 1951. hospital-overcrowding-becomes-personal/.

True Tests “One of the true tests of leadership is the ability to recognize a problem before it becomes an emergency.” — Arnold H Glasgow, 1905-1998, American humorist

74 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 NARRATIVE MEDICINE Trifecta: Running on Hope

Carol Redding, MA Perm J 2012 Summer;16(3):75-77

October 1983 understanding that she should return immediately, should I had just celebrated my 27th birthday, but there was little there be any symptoms of illness or any fever. The patient is joy in the celebration. For many months I had dragged myself well aware of these restrictions. through my workdays, college courses, housekeeping, and I had survived the pericardial-window surgery to relieve the marriage. I thought I must have a dreadful case of the flu, pressure on my heart and could breathe again. I had tolerated especially when my back began to feel as if the flesh was be- the megadoses of chemotherapy, and the mass had all but disap- ing slowly torn away from my ribs. When I could no longer peared. I wrapped my mind around the concept of my perhaps breathe, I risked admitting illness. Nothing could have prepared imminent death, and the double-whammy of what the oncologist me for the truth. called “involvement of the marrow,” which translated into “acute lymphocytic leukemia.” In October, I had been told I had a week December 6, 1983 to live. I was discharged from the hospital on December 6th, Excerpt from Oncologist’s Hospital Discharge Notes walking away from the poisons and the needles and the pain. History of Present Illness: The patient is a 27-year-old Christmas was coming. I had things to do. woman admitted to … Hospital for continuing treatment of Yet some nightmares have a way of lingering long after we her T-cell lymphoma and evaluation and treatment of her are awake, and it would be years before this one would end. post-spinal tap headache. Initially, no one would lay odds on my winning. Hospitalized The patient was admitted [early in October 1983] in peri- again, for more chemotherapy, in January of 1984, a series of cardial tamponade. On evaluation, the patient was found tearful visitors came to say goodbye, although none of them to have a very large mediastinal mass and, on biopsy, this used that word. Their red eyes, sobs, and sniffles were daubed was a diffuse lymphocytic lymphoma. Immunologic stud- and stifled while they were with me, but I could hear them in ies revealed the patient to have a T-cell lymphoma, and the hallway outside my room. I thought myself lucky to be so subsequent evaluation showed involvement of the marrow. loved that people were that torn up about what we had all been After some discussion with a variety of people and review told was likely to be my imminent departure. They didn’t know of the literature, it was elected to treat the patient with a regi- I was a dark horse. Neither did I. men of high dose CHOP chemotherapy for induction of her lymphoma … The patient tolerated the treatment quite well, September 24, 1984 had significant myelosupression and required support with This was my first day at my new job at a major university. I platelets, blood and antibiotics for approximately one week was still on chemotherapy, and an Intensive Care Unit nurse who until her bone marrow recovered. The patient was also given had become an extraordinarily good friend came to my office two doses of intrathecal methotrexate, one on 10-28-83 and to administer the injections because I had grown too fearful of the second on 11-12-83. The patient did note a significant needles to inject myself. post-spinal tap headache from the last spinal tap and this I needed health insurance for the long haul, and this job was persisted and continues on the day of admission. Except the only way to get it. My marriage was in trouble, so I could for the post-spinal tap headache, the patient feels extremely not count on my husband’s coverage indefinitely. Now virtually well, no respiratory complaints, no shortness of breath, and uninsurable, I had to leave my career as a private investigator to no new problems. find a group policy so large that my coverage would be auto- … The patient had significant nausea and vomiting for matic. I had found it and landed a job as a clerk in a computer one to two days after the chemotherapy but then felt quite center. Now all I had to do was learn how to thrive in the new well. The patient’s post-spinal tap headache gradually world of computers. resolved with the use of abdominal binder and increased oral fluids. After one week in the hospital, the patient had no spinal headache whatsoever, and this did not return. May 12, 2003 The patient was observed in the hospital: her white [blood Excerpt from Plastic Surgeon’s Notes cell count] continued to fall and at the time of discharge Chief Complaint: Right breast cancer. was 1300 with a platelet count of 115,000. However, as the History of Present Illness: This is a 46-year-old di- patient was quite anxious to go home and was absolutely vorced woman who works as a consultant for Information afebrile, it was elected to allow the patient to leave with the Technology. This patient had abnormalities seen on her

Carol Redding, MA, is a public speaker and training consultant; CEO of the nonprofit organization Health Presentations; and a business analyst and technology consultant at San Diego State University. E-mail: [email protected].

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 75 NARRATIVE MEDICINE Trifecta: Running on Hope

mammogram. She had right breast calcifications and the axillary dissection, thus 1/11 nodes is positive. The right stereotactic biopsy was done 03/27/03, which showed ductal breast has only DS, grade 2, papillary type. No invasion is carcinoma in situ on the right. She also had an ultrasound seen, confirmed with SMMHC immunohistochemistry. Only of her left breast that did demonstrate a lesion at 6 o’clock the sentinel node is sampled on the right. in the posterior depth. The patient is nulliparous. She is now approximately a 34B bra cup size and she desires about the March 2012 same … The patient is now [scheduled] for bilateral mastec- End-stage T-cell lymphoma, acute lymphocytic leukemia, stage tomy and immediate DIEP flap reconstruction. 2 breast cancer. Even better than a lucky bet at the racetrack, Past Medical History: Persistent for endocrine, history of 29 years later, this dark horse is still racing—and it looks like Grave’s disease. She is status post-I-125 radiation ablation she’s still winning. The end stage did not end me, the leukemia therapy times two. She is currently hypothyroid and taking did not kill me; and this month I celebrated 9 years of life as a Levothroid. Respiratory: No history of asthma, wheezing, breast cancer survivor. So far, so good. or dyspnea on exertion. Cardiovascular: The patient had Writing this piece, a sliver of 19th century rural Lithuanian su- some chest pain in 07/99, was ruled out for a myocardial perstition creeps in suggesting that maybe I’m jinxing my survival infarction. She had an exercise treadmill test and she also just by thinking that I’ve won this somatic contest. Ancestral voices? underwent an echocardiogram that showed ventricular The same that said, “Children are to be seen and not heard”? size and function to be normal and a mildly thickened I am surprised to still be in the race, and people ask me how mitral valve with a trace to mild mitral regurgitation. She that came to be—as if I really know. I don’t know; I can only has a trace to mild tricuspid regurgitation. The patient also guess: I’m obstinate, I come from sturdy stock, and I’m ambitious. has a history of T-cell lymphoma and acute lymphocytic Even when I was lying on what people had assured me was my leukemia in 1983. She had also some pericarditis and un- deathbed, I was determined to finish crocheting the afghan I’d derwent a pericardial window. She is status postradiation begun, read the remaining chapters of The Mirror Crack’d, and treatment to her left thorax and also her brain and she is write the thank-you letters to the many people who had shown status postchemotherapy treatment with methotrexate and me enormous kindness. she is presently in remission. The patient also had a history Delicacy is a trait that neither my mind nor my body was of transient ischemic attack, a series of four of them in one permitted as a child. One was either strong or broken beyond week in 1986 and has had none since. No history of hepatitis repair; the choice was subliminal, reflexive. So, apparently, was or heartburn. No history of kidney or bladder problems. my body’s biochemical response, which bathed my young brain and body in stress hormones and set me up for a lifetime of The cardiac episode in 1999 was, on reflection, probably an hyperstress in even the most banal situations. acute anxiety attack. I had been working a full-time job, a part- To appear strong meant survival, and that is the mode in time job, and studying for a master’s degree in organizational which my siblings and I were raised on the harsh heels of our management. It was a heavy load, and I was under considerable immigrant grandparents’ and our first-generation-American pressure by a number of external forces on both jobs, as well parents’ childrearing methods. To actually be as strong as was as my own internal desire to succeed academically. necessary would have meant somehow having control of those The 20 years between 1983 and 2003 had not been uneventful, biochemical processes. I didn’t. Not until I was a mature woman but I was still going full gallop when I received news that the mam- did I even have an idea that they exist, and not until decades mogram results were abnormal. Everyone had said, “If you have after that did I learn of their importance and potential for long- to have breast cancer, ‘ductal carcinoma in situ’ is the best possible term, harmful effects to my autoimmune system.1 diagnosis.” I wasn’t worried about what they had found in the right My biochemistry did not overreact; it was an appropriate breast. I was worried about what the ultrasound had found in the response to a chronic state of fight-or-flight while living in left breast. That’s why I had insisted on bilateral mastectomies, even households where we were told we were loved, but hands though I’d been told a less disfiguring partial excision would suffice. were not always gentle, fists often took flight at people as well My inner voice was screaming at me to have the breasts off. as objects, voices were loud, words were meant to hurt, and a I did not, at that time, understand that even without breasts, the child’s sexuality was not her own. same breast cancer could occur in other organs. Even though I While recently at a routine gynecologic visit, the medical know this now, I would not have changed my decision if I had assistant went through her usual routine of weighing me, and known then. Had I not opted for the bilateral mastectomies, asking about smoking, alcohol consumption, and allergies to they would not have found the invasion into my sentinel node. medications. She added an unexpected question, “In the last By the time they would otherwise have found it, would it even six months, have you experienced any domestic violence?” I have been found before it was too late? responded, “Not in the last six months.” Then she took my blood pressure, and it was higher than I’ve ever seen it before. June 4, 2003 She looked at me wide-eyed. I took a deep breath to ease my Excerpt from Surgical Pathology angst and explained that the damage of domestic violence does Microscopic Description: The left breast has an invasive not disappear after six months, six years, or even six decades. carcinoma and lymph node metastasis involving only the I suggested she might want to consider asking questions about sentinel node. An additional 10 nodes are found in the domestic violence after taking patients’ blood pressure. It was

76 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 NARRATIVE MEDICINE Trifecta: Running on Hope

a pleasant conversation; she was just following someone else’s I’ve grieved the loss of my marriage, my birthplace, and the orders to include the question, but timing can be everything. integrity of my body. The denial phase is never long for me—a Given a few minutes to recover from the flashback triggered minute or two at most, since I have seen so much loss that I by the question, my BP later measured 116/70, not bad for a know when denial is futile. Anger, too, is short-lived, and I’ve middle-aged, postmenopausal woman who had minutes earlier never seen the point to playing the “if only I had” game of relived an age-five beating that left her incontinent and huddled bargaining. Depression, on the other hand, can be a faithful on the floor of her parents’ living room. companion even though I have long since accepted all of the many losses of my life. I live—for the most No one Summer 1962; Chicago, Illinois part—in “intellectual” rather than “emotional” mode, looking at me Mom died a year ago of a stroke following a high-risk sixth just too stubborn to cave in to the crashing defeat pregnancy. She was only 44. My chain-smoking, alcoholic, that an emotional meltdown signals to me. Despite today would PTSD-suffering World War II Veteran dad dove into a bottle my best efforts, they sometimes happen too—though ever suspect and stayed there, intermittently, long enough for us to have less often now than when I was younger. the ordeal been sometimes placed in other homes. He was trying to hold There is something even more powerful than obsti- my life has it together, but he couldn’t. nacy, heredity, and ambition. During the October 1983 been, which He was, however, still working, and he’d managed to afford ordeal, one physician made a world of difference by makes me to buy me a new pair of shoes, which I had worn to school that saying aloud what I wanted to believe, “You’re not dy- treat everyone day. While playing at recess, the buckle broke. I’d dragged the ing; you’re still living.” Wow! Profound. Life-changing. I encounter as shoe along with me as I walked home from school that after- It was as if he had plucked the words right out of my if they are also noon, in fear of what would happen when dad saw that it was head. He affirmed my right to hope, that fragile, elu- as damaged as broken. He was so angry all the time, and now that my older sive entity that still remained after all the evils of the I am, or worse. brother had run away from home, dad’s rage was bottled up world had been loosed upon me from Pandora’s box. and nearing explosion. I could feel it building in him, capped Although I’m still in the race, it would be a mistake like a gusher by his silence. to think it’s an easy one. Pandora’s box was opened early in The minute he saw the broken buckle, he went for the barber’s my childhood with abandonment, sexual, emotional, and physi- strap, and I knew what was coming. There was nowhere to hide. cal abuse, and neglect, now increasingly recognized as being The beating lasted for less than a minute in real time, but it also translated into biochemical responses that damaged my immune lasted for a lifetime. It seemed like forever before I was allowed system and my ability to handle normal stressors in normal ways, to return to school, but by then the ringing in my left ear had and exacerbated by the myriad of environmental factors that are stopped. Dad never beat me like that again. As soon as he had part of the evils of the modern world. finished, the look on his face was one of such shame and sorrow There are scars—all kinds of scars. Most days I wonder how that it hurt me even more than the blows from the barber’s strap. much longer my luck will hold, but all I can do is keep running. I fill my days with work, with friends and family, with the many Today small pleasures that give me joy. I try to give my body what it needs Healing is a miraculous thing. I marvel at those who choose it to be well, and my mind the peace it needs to work in harmony as a profession. No one looking at me today would ever suspect with the rest of me. I treat others gently because I suspect they the ordeal my life has been, which makes me treat everyone I have suffered, too. Of course I know I cannot live forever, but—for encounter as if they are also as damaged as I am, or worse. One now—furlong after furlong, each stride is driven by hope. v just cannot tell by glancing at the exterior. I am astonished by how well my body has cleanly knit the many incisions made by Acknowledgment the needles and surgical instruments, but healing the underlying Leslie E Parker, ELS, provided editorial assistance. spirit is far less tidy. They say there are five stages to grief: 1) denial, 2) anger, Reference 1. Dube SR, Fairweather D, Pearson WF, Felitti VJ, Anda RF, Croft JB. Cumula- 3) bargaining, 4) depression, and 5) acceptance. I’ve grieved tive childhood stress and autoimmune diseases in adults. Psychosom Med the loss of my mother, father while living, and father in death. 2009 Feb;71(2):243-50.

Hope for Tomorrow Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning. — Albert Einstein, 1879-1955, physicist 1921 Nobel Laureate

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 77 BOOK REVIEW ACE Study DVD produced by David L Corwin, MD

Review by David L Chadwick, PhD Perm J 2012 Summer;16(3):78-79

When I was asked to review this DVD Felitti argues that it makes a good model for improved medical about the Adverse Childhood Experiences practice, but acceptance by physicians has been slow. Felitti (ACE) Study, I had some reservations. I had recognizes the difficulties of change and cites Eric Hoffer who been listening to and accepting the concepts said, “In a time of drastic change it is the learners who inherit outlined by the ACE Study for about 20 years the future. The learned usually find themselves equipped to and I thought there wasn’t much that could be live in a world that no longer exists.”2 said about that research that would be new to Felitti dwells on the frequent encounters with patients me. I was wrong, and this new production con- whose “problems” are really their solutions, showing how tains novel observations and thinking about an this applies to obesity, smoking, and abuse of “illicit” meth- internationally recognized Kaiser Permanente amphetamine. He points out that this was the first major (KP)-Centers for Disease Control and Preven- prescription antidepressant in the US in 1940, then asks if tion (CDC) research project. this observation matters. In this four-hour DVD, Vincent Felitti, MD, Felitti summarizes and proposes a new way to change medi- Shakopee, MN: Academy on gives a historical review; then he, Robert cal practice to recognize the importance of childhood experi- Violence and Abuse (AVA); 2012 Anda, MD, and Frank Putnam, MD, comment ences: providing the public a comprehensive medical history ISBN-13: 978-0-9852446-0-6 on the effect of the Study on the practice of questionnaire to be completed and taken to their physicians, DVD medicine. There are interviews with Felitti, understanding that some will resent the burden imposed by $45.00 through 2012; Anda, and David Williamson, PhD, about the unsolicited medical information of a traumatic nature. He also $65.00 thereafter history and implications of this major piece of proposes the public health benefit of media portrayals of good Available for purchase from medical research. and bad parenting. www.avahealth.org. Anda points out the good news that State Anda’s interview describes his personal professional path- Health Departments across the country are way, from epidemiology, to chronic disease epidemiology, to increasingly using the ACE Study to guide behavioral epidemiology, and to the ACE Study after learning program development. The continuing interest and support of Felitti’s early experiences with treating obesity. His descrip- of the CDC in the ACE Study principles are vital. tions of the intense opposition to the ACE Study at both the Putnam points out that the ACE Study has recently been CDC and at KP San Diego reminded me of the opposition to shown to apply to psychiatric diagnosis. Adverse experiences revelations of child abuse encountered by Freud and (later) of childhood affect the incidence of many adult diseases, by C Henry Kempe and other early child abuse physicians. He conditions, and behaviors that are described in the Diagnostic describes the selection of the term “Adverse Childhood Experi- and Statistical Manual.1 He notes that there is accumulating ence.” It was not (as I have sometimes suspected) a deliberate evidence for the benefits of positive childhood experiences, and avoidance of the term “child abuse” but rather a decision to he encourages development of early intervention programs for cast a wider net than the legally defined term “child abuse” infants and children who are maltreated. Increasingly, health would provide. Thus the ACEs include parental divorce or officials and other policymakers are paying attention to the ACE death, which are not “child abuse” but which may be as likely Study. Many psychiatrists have been slow to develop an inter- to have an effect on health as the more obviously damaging est in child maltreatment. Putnam’s leadership may accelerate events of domestic violence, parental substance abuse, mental this educational process. illness, and criminal behavior. Felitti explains the use of detailed patient questionnaires and Early attempts at publication of the ACE Study findings met brief interviews to gather data from thousands of patients about with rejection until the 1998 article by Felitti et al in the Ameri- their unspoken childhood experiences. This process was not can Journal of Preventive Medicine broke open that door.3 At just accepted by KP members, but many found it helpful and about the same time, Felitti began to be invited to conferences responded with gratitude and a lowered physician-visit rate for child abuse professionals where he preached to the choirs. that lasted for a year. The process produced striking findings Anda predicts a powerful social movement growing out of of the high prevalence of ACEs and was simple for the staff. the work on ACEs and leading rather quickly to improving the

David L Chadwick, PhD, is a retired Pediatrician and Director, Emeritus of The Chadwick Center for Children and Families, Rady San Diego Children’s Hospital; and Adjunct Associate Professor, Graduate School of Public Health, San Diego State University in CA. E-mail: [email protected].

78 The Permanente Journal/ Summer 2012/ Volume 16 No. 3 BOOK REVIEW ACE Study DVD

childhood experience. This may be overly optimistic in view and to policymakers generally. It is much more than a rehash of our past experience with societal denial of child abuse. of old material from the ACE Study. It points to new directions The Williamson interview emphasizes the importance of for policy and program development. The ACE Study and its continuing surveillance for the occurrence of ACEs and notes spin-offs are among the most important public health advances that 20 states are now attempting this, using CDC-generated in our time. This DVD is an important contribution to improv- definitions. He firmly states that our society is ethically obliged ing medical practice. v to improve the childhood experience over and above the prac- tical benefit of reducing the health costs generated by ACEs. References He advocates the formation of professional alliances that cross 1. American Psychiatric Association. Daignostic and statistical manual of men- tal disorders. 4th edition. Arlington, VA: American Psychiatric Association; disciplines and professional sectors and cautions that the find- 2010. ings of the ACE Study not be oversold because there are still 2. Hoffer E. The ordeal of change. Cutchogue, NY: Buccaneer Books; 1976. risk factors for disease other than ACEs. 3. Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in Dr Corwin’s new production of the ACE Study DVD needs adults. The Adverse Childhood Experiences (ACE) Study. Am J Prev Med to be shown to all primary care physicians, all health officers, 1998 May;14(4):245-58.

The Measure of Our Lives Sooner or later, we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory unannounced, stray dogs that amble in, sniff around a bit and simply never leave. Our lives are measured by these. — Susan B Anthony, 1820-1906, American civil rights leader and suffragette

The Permanente Journal/ Summer 2012/ Volume 16 No. 3 79 Physicians may earn up to 1 AMA PRA Category 1 Credit™ per article for reading and analyzing the designated CME articles published in each edition of TPJ. Each edition has four articles available for review. Other clinicians for This form is also available online: www.thepermanentejournal.com whom CME is acceptable in meeting educational requirements may report up to four hours of participation. Please return (fax or mail to the address listed on the back of this form) to The Permanente Journal by November 30, 2012. Forms may also be completed and submitted online at: www.thepermanentejournal.org. You must complete all sections to receive credit. (Completed forms will be accepted until November 2013. Acknowledgment will be mailed CME Evaluation Program within 2 months after receipt of form.)

Section A. Article 1. (page 10) A Colorectal “Care Bundle” to Reduce Surgical Site Infections d. many of the pharmacologic agents commonly used to manage chronic pain, such as nonste- in Colorectal Surgeries: A Single-Center Experience roidal anti-inflammatory drugs, have the potential for serious toxicity, including gastrointestinal bleeding and renal failure A man, age 60 years, with a body mass index of 32 and history of hypertension undergoes an elective e. the question of whether traditional Chinese medicine treatments can lead to reduced use of laparoscopic right hemicolectomy because of a malignant tumor of the cecum. All of the following pain medications and other potentially toxic or invasive interventions has not been adequately measures can be considered as adjunctive measures to the Surgical Care Improvement Project studied, and warrants further research core measures to reduce a surgical site infection except: a. high inspired oxygen (greater than or equal to 80%) during surgery Article 3. (page 42) Engaging Patients in Managing Their Health Care: Patient b. double gloving Perceptions of the Effect of a Total Joint Replacement Presurgical Class c. maintenance of glucose between 80-180mg/dL d. subcutaneous drain The following preoperative educational programs are successful, except: e. preoperative patient education regarding surgical site infection reduction a. promoting social connectedness b. fostering independence of participants All of the following are Surgical Care Improvement Program infection reduction measures c. enhancing the use of multidisciplinary teams in colorectal operations except: d. improving patients’ decision-making skills a. removal of hair with clippers b. appropriate prophylactic antibiotics in the appropriate time period A major finding of this qualitative study was that c. discontinuation of prophylactic antibiotics within 24 hours of surgery a. presurgical classes are cost effective d. maintenance of postoperative glucose level between 80-180 mg/dL b. quantitative methods can bridge the gap between scientific evidence and clinical practice e. maintenance of perioperative normothermia c. patients’ perceptions are not valuable when designing a presurgical class d. investment in a multidisclipinary presurgical class can foster a sense of social connectedness Article 2. (page 18) Reductions in Pain Medication Use Associated with Traditional among total joint replacement surgical patients Chinese Medicine for Chronic Pain Article 4. (page 49) A Framework for Making Patient-Centered Care Front and Center Traditional Chinese medicine practitioners in the community setting may commonly use acupuncture in conjunction with any or all of the following modalities except: Which of these is NOT one of the primary dimensions of patient-centered care a. herbal supplements a. structural b. tuina massage b. interpersonal c. moxibustion c. financial d. lifestyle and nutritional counseling d. clinical e. spinal manipulation On the basis of the information presented in the article, the two fundamental Which of the following statements is incorrect? tenets of patient-centered care are: a. a tendency to study acupuncture in isolation from other potentially synergistic modalities a. consistency and trust may have produced an inherent bias in the literature b. clarity and communication b. long-acting opiates have been shown to be more effective than acupuncture for management c. trust and communication of chronic musculoskeletal pain d. consistency and safety c. acupuncture has often been compared with sham interventions in mechanistic studies, making it difficult to estimate what if any benefit might be rendered to a patient receiving community- based, standard traditional Chinese medicine care Please return completed form by November 30, 2012

Objectives Section B. Referring to the CME articles and the stated objectives, please choose your level of agreement next to each statement as appropriate. 1. to inculcate the use of evidence-based medicine as part of the science of medicine Article 1 Article 2 Article 3 Article 4 strongly strongly strongly strongly strongly strongly strongly strongly 2. to stress the art of medicine via enhanced patient- agree disagree agree disagree agree disagree agree disagree physician communication, improved care experience for patients, and more satisfying caregiving experi- The article covered the stated objectives. ence for physicians and staff through better teamwork I learned something new that was important. 3. to review appropriate updates on the diagnosis and I plan to use this information as appropriate. treatment of clinical conditions 4. to describe infrastructure and systems improvements I plan to seek more information on this topic. that lead to improvements in outcomes and patient I understood what the author was trying to say. care experiences

Section C. What change(s) (if any) do you plan to make Section D. (Please print) The Kaiser Permanente National CME in your practice as a result of reading these articles? Name ______Program is accredited by the Accreditation Council for Continuing Medical Education ______Title ______(ACCME) to provide continuing medical ______education for physicians. E-mail ______The Kaiser Permanente National CME Address ______Program designates this journal-based CME activity for 4 AMA PRA Category 1 Mail or fax completed form to: ______Credits™. Physicians should claim only The Permanente Journal, 500 NE Multnomah St, the credit commensurate with the extent Signature ______of their participation in the activity. Suite 100, Portland, OR 97232 Phone: 503-813-3286 • Fax: 503-813-2348 NUID # ______Date ______80 The Permanente Journal/ Summer 2012/ Volume 16 No. 3