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Communication Access Within Medical Settings By Harvey Pressman and Emily Newman (Central Coast Children’s Foundation) and Juli Pearson, MS,CCC-SLP (Boulder Community Hospital) Introduction In health care settings, communication breakdowns between patient and caregiver can have dire consequences: increased patient pain, misdiagnoses, drug treatment errors, unnecessary extensions in length of hospital stay, even death. In a six-year (1997-2002) study of the root causes of “sentinel events” in hospitals, the Joint Commission on Accreditation in Health Care Organizations (JCAHO) in fact placed “communication” at the very top of the list of root causes. The sad fact is that, although there now do exist a set of simple tools and strategies that can quickly and effectively improve communication between patients/family members and caregivers, these tools usually go unused and ignored in most health care settings. Useful information about these tools and strategies is, moreover, scattered among a variety of disparate sources and, in a few cases, not readily available or accessible. Communication difficulties are all too often devastating In health care settings. They can, and often do, create huge barriers between patients and health care staff. Trouble communicating can be attributed to new or chronic speech and/ or comprehension difficulties, medical interventions and/or language barriers of non-English speakers. Patients regularly report instances in which communication barriers result in feelings of anxiety, fear, frustration, unrecognized pain, and overall loss of control. Augmentative and alternative communication (AAC) tools and strategies, and other assistive technology (AT) techniques and products, can ease communication between patients and health care providers, allowing patients to participate more fully in their care. Although, when we think of these devices, we often think of fancy high-tech equipment, these communication interventions range from no technology (e.g., gestures and signs, alphabet boards) to “low” technology (e.g., communication boards and wallets) to high technology (such as voice output communication aids). Unfortunately, these techniques are most often underused in healthcare setting because of lack of knowledge about and/ or access. Boulder (CO) Community Hospital has developed a program focused on utilizing lowcost, easy to use tools to meet communication needs. These communication needs include patients with limited verbal and/or written communication, hearing loss, and/or those who speak English as a second language. This novel program also includes low cost and easy to use tools that speech therapists have access t, in order to evaluate patients and provide individualized communication options for more complex communication needs. Many patients may enter the hospital in a “communication vulnerable” state, or become so by virtue of their condition or treatment. (We have borrowed this term from “Improving Patient-Provider Communication: A Call to Action.” by Patak, Wilson-Stronks, Costello, Kleinpell, Hennerman, Person, and Happ. [Manuscript submitted]) Take the example of people rushed to the hospital without their glasses or hearing aids, and then expected to answer various questions that they can’t hear, and sign consent form they can’t see, on top of the stress of their current condition. In some cases, patients’ communication abilities are weakened due to trauma, decrease in health or discomfort and pain. For example, people on ventilators cannot speak their requests. Because they are in a weakened state and have IVs in place, writing becomes difficult and requires too much effort. In such sub-optimal situations, patients are faced with critical decisions. They need to be able to communicate fully with their health care providers to ensure receipt of effective care. In one study (Patak et al., 2006), 62% of patients reported high levels of frustration associated with their inability to communicate effectively during mechanical ventilation, and thus their needs not being met. In the general hospital setting, also, there is often a friend or family member who usefully serves as a communication conduit between the professional staff and the encumbered patient. However, when that person goes home for the evening or is otherwise not present, the patient can be left without the tools to communicate and this is highly distressing for many patients. For elderly patients these circumstances may lead to disorientation and to the need for medication which may not otherwise be needed. The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) strongly emphasizes (Standard of Care RI.2.100) that “The patient has a right and need for effective communication” (http://www.jointcommission.org/). Specifically, the Elements of Performance for RI.2.100, No. 4 state, "The organization addresses the needs of those with vision, speech, hearing, language, and cognitive impairments." Additionally, the 2007 National Patient Safety goals include (2007 National Patient Safety goals- Goal 13) encouraging “patients’ active involvement in their own care,” which requires overcoming communication barriers (http://www.jointcommission.org/PatientSafety/NationalPatientSafetyGoals/07_bhc_npsgs.htm). Furthermore, patients with access to communication receive less sedation, are transitioned faster, have less pain have increased satisfaction with their care, feel more in control and generally do better. Psychiatric hospitals present another special set of needs. Psychiatric hospitals depend on a number of formal group settings, individual interviews, and availability of nursing staff for ad hoc patient initiated approach and communication. When patients are encumbered through specific handicaps such as language or sensory difficulties, the entire treatment process is jeopardized. In addition, some patients because of their very psychiatric illness are impeded from fluid verbal communication but may be able to communicate in writing or drawing. Failure to ensure communication in these situations has directly led to treatment failure. Since so many hospitals lack vital knowledge and resources on incorporating communication access tools into their patient care systems, the Central Coast Children’s Foundation has compiled this guide of available sources of such information for hospitals. Getting Communication Access Tools to Patients Working at a community hospital in Boulder, CO, speech language pathologists Juli Pearson and Debby McBride have developed a communication tool kit program to help mediate communication barriers (due to language issues, ventilators, hearing issues, etc.) in the hospital setting. Their materials includes two tool kits, a resource book, a streamlined reordering system, ‘how to’ books, and a variety of training resources. One of the tool kits has been particularly helpful hospital-wide, and each nurses unit has its own tool kit for quick access. This On the Spot Communication Toolkit includes: 9 word boards and picture boards (in various languages) 9 a modified call bell (to help people who can’t use a regular call be to get help), and “how to” instructions with easy to follow pictures 9 a pocket talker amplifier (for people who left their hearing aids at home and/or are having trouble in a noisy hospital environment) 9 writing boards complete with “Writing Strategies” to help patients write when they can’t speak and have physical limitations 9 a magnification glass for people who don’t have their glasses and need to read consent forms 9 English-to-Spanish translation cards for nurses to use 9 …and other tools useful to patients and staff (e.g. “a hearing aid trouble shooting guide”). Pearson and McBride based the development of their tool kits/ program on a hospitalwide needs assessment, review of research in the field, and current nation-wide hospital standards (JCAHO). There are no tool kits currently on the market such as the ones their hospital is currently using. They have presented on their tool kits at several conferences and workshops, and the feedback they keep getting is that many people would like these available to them, as clinically many others in the field recognize their usefulness and have experienced the challenges of keeping items like this on hand when needed. Debby McBride and Juli Pearson are now expanding these tool kits, trainings and resources to other hospitals nationwide under the name “On the Spot Communication” tools. For more information go to www.aactechconnect.com. Within the program developed by Juli and Debby at Boulder Community Hospital, there are three primary methods of getting communication access tools to patients: (1) addressing basic needs through their On the Spot Communication Toolkit, with simple, easy-to-use tools that all staff has access to, (2) addressing complex communication needs through an AAC evaluation kit specially designed for the hospital population, which is used by SLP’s and (3) providing for ongoing communication needs through a communication access tool loan bank, and/or giving away low-cost communication access tools. The On the Spot Communication Toolkit meets immediate basic communication needs and includes comprehensive tools for vision, speech, hearing, language and cognition, as well as tools for non-English speakers. Boulder Community Hospital found that it was critical to have a toolkit for each nurses unit to provide quick easy access to tools and to make staff accountable to regularly use the tools and restock their kits. The more often the kit is used, the more likely it is that staff will use the kit again, thus benefiting more and more patients. Also, BCH has found that the labeling and restocking system are both critical for success, in order to have tools accessible when they are needed, as well as for proper infection control. Some hospitals, with the best of intentions, have purchased a one-time stock of tools, which will work for a while, but unless there is a central location (such as a toolkit), labels on all tools to help ensure that the tools get back to the correct location, and a easy way to restock the tools, there will be a much lower success rate. For individuals who have more complex communication needs in the health care settings, a speech language pathologist should be called on to help determine what tools may or may not work for a patient. One of the problems that often arises is that most SLP’s in the hospital setting have an expertise in diagnosing and treating dysphagia and cognitive communication disorders, but do not necessarily have an expertise in Augmentative and Alternative Communication. Alternatively, a SLP who has AAC expertise often times have more experience and expertise with the outpatient population, whom has significantly different demands and medical stability than the patient in more of an acute setting. At Boulder Community Hospital, Juli Pearson and Debby McBride recognized these issues, and complied an On the Spot Assessment Toolkit for SLP’s. This toolkit includes a way for therapists to quickly and easily assess and address complex communication needs. The focus is on providing simple to use tools that are easy for family, patients, and nursing staff to set up and use. The assessment kit includes: 9 Assessment Hierarchy 9 Evaluation Form 9 Resource Notebook with CD for reprintable pages: organized into the following sections: o Alphabet and Words (letter boards, key guard, word board/topic boards, etc. ) o Pictures and Symbols (Vidatak/Children’s Hospital of Boston Picture Board, other picture boards, photographs, life images…) o Spanish Boards (Vidatak EZ board, picture communicator, daily communicator) o Modifications (simple voice output devices [Go Talk, Talking Photo Album], adaptive call bell, eye gaze/partner assisted scanning, amplification) o Bedside Recommendations (strategies that can be posted for family/ staff education) 9 Tote Bag with Assessment Tools (that match our resource book) Lastly, for patients with ongoing communication needs, an AAC Loan Bank and/or “Give-Aways” can be incorporated into hospital care. Many low-tech and no tech communication access tools cost between $10 and $200 and are usually not covered by medical insurance. As many patients do not have money with them when they enter the hospital or do not have family members present, they are not always readily able to purchase the low-cost but essential communication tools upon discharge. Patients are also not used to buying items for their own care in a hospital setting. Take one example of a patient who needs a tracheostomy tube to breath. They do not have to pay cash for this before leaving the hospital with it, as it is critical for their care. Communication is also a critical part of care; thus, it is inequitable to require patients to pay for a communication tool upon leaving the hospital in order for them to leave with it. One of the problems that therapists run into is that once a patient leaves with the communication tool, the tool is no longer available for other patients to use. Thus there needs to be a loan/ “give away” bank of tools for patients to use and take as needed. Boulder Community Hospital was able to find funding for these tools through an annual grant from its foundation and auxiliary board by applying for a simple grant and presenting the idea. They have subsequently received funds from several grants which allow them to restock the items periodically. Ideally, the overall costs of tool kits should be distributed throughout a hospital so that the cost that doesn’t burden one department or another. Before the program was in place at Boulder Community Hospital, all communication tools and resources came from the Speech Therapy Department. This not only burdened the Speech budget with staff and resources, but also led to patients’ needs slipping through the cracks. Now that the program is underway, each nursing unit has an tool kit which has been incorporated into their budget. They have received hospital grants from their foundation and auxiliary board to pay for “give away” tools; and the speech evaluation kit has been incorporated into the rehab budget. Distributing the cost and responsibility has created more ‘buy-in” for the communication tools among all staff and led to increased hospital wide efforts meet JCAHO standards, and more importantly, communication needs. Gaining Administrative Support Communication access in the health care setting must be functional, user-friendly, accessible and easy to acquire. To gain administrative support within a hospital, Juli Pearson and Debby McBride found the following steps beneficial: 9 collaborate with a Patient Care Representative who mediates JCAHO standards, patient feedback, and advocates for patient rights and communication 9 incorporate access to communication tools as a policy standard vs. a “gold star” (e.g., JCAHO standards, meeting the needs of non-English speakers, patients who are Hard of Hearing, etc.) 9 conduct a needs assessment with staff and representatives of each clinical department (nurses, therapists, interpreters, etc.) 9 solicit patient feedback Boulder Community Hospital gained vital administrative support to address the communication access needs of patients and now runs a successful program in which communication access is effectively addressed, enabling health care providers to supply valuable and more complete care. At Boston Children’s Hospital, John Costello has helped create one of the first dedicated AAC services in ICU and acute care services, which has been an established inpatient service since 1992 (cf., Costello, J. “AAC intervention in the intensive care unit: The Children's Hospital Boston model”, Augmentative and Alternative Communication, Volume 16, Issue 3, September 2000 , pages 137 - 153). Costello provides leadership for efforts that focus on all patients who are ‘communication vulnerable’ in the hospital setting, which have earned growing administrative support. This includes not only people who may be congenitally or temporarily nonspeaking, but also includes those who can not speak English and those who can not access the communication tools (standard or adapted) that are available, such as nurse call. Boston Children’s has a long history of a model of intervention, including a pre-op model of voice and message banking. Their inpatient AAC service focusing on all patients who are communication vulnerable has been internationally recognized as a ground-breaking service. Further, it has been a featured service when Children's Hospital Boston has conducted intensive hospital wide 'show cases' of best practices for national and international visiting medical center personnel who wish to duplicate their models of patient care and service delivery. Due to increased demand for such services, Boston Children’s is now dedicating an FTE to do ONLY inpatient AAC (prior to that, the full service was provided, but it was by an outpatient clinician who 'doubled up' and had a massive volume/productivity). They have added a second dedicated AAC inpatient SLP, with administrative support for more than a decade. The hospital has provided funds to purchase all of the inpatient devices/switches/printer cartridges/laminate, etc.) since 1994. The ICU alone has had a dedicated line item for AAC equipment since 1997. The Neurosurgery program has supported the use of AAC equipment since 1998. Anesthesiology has worked with Costello to have a budget for AAC switches, nurse call adaptations, mounting arms and med administration pump switch access for more than a decade. Children’s also has an established AAC program for working with people at the end of life, and, since 2001, a formal program with Dana Farber Cancer Institute. Further, the hospital board of directors has recognized the need to allocate funds received as 'gifts' directly to supporting the materials ranging from printer cartridges to dedicated AAC devices. Each year, Costello has received a generous capital budget approval for AAC devices, equipment, etc.) Costello’s focus has been on promoting institutional wide awareness of what “communication vulnerable” means, and how it may negatively impact outcomes. Going hand in hand with this is a clearer picture of the value added by the SLP who can do an AAC feature match to patient needs, and then implement and train appropriate AAC strategies. Costello is also seeking to utilize a nurse teaching and assessment tool developed by Lance Patak that will focus on recognizing what “communication vulnerable” means. Communication Access Resources that Can Be Used in a Hospital Setting There are many resources to assist clinical staff in determining which tools or devices to utilize for communication vulnerable patients. This section provides various books, articles and websites which can easily be accessed to provide information on communication strategies within hospital settings.. Books: In 2007, Augmentative Communication Strategies for Adults with Acute or Chronic Medical Conditions was released. This book, edited by David Beukelman, Kathryn Garrett and Kathryn Yorkston, is a compilation of practical “how to” information drawn from 23 well-known AAC clinicians and researchers. There is also an accompanying CD with clinical forms and strategies. For more information see http://www.amazon.com/Augmentative-CommunicationStrategies-Chronic-Conditions/dp/1557668752 . Another book edited by David Beukelman and Kathryn Yorkston, as well as Joe Reichle, Augmentative and Alternative Communication for Adults with Acquired Neurological Disorders, addresses recent social, medical and technical changes and how they affect adults with communication disorders. Part I discusses the everyday transition issues patients struggle with – such as establishing new communication roles and integrating their natural speech with AAC – while Part II covers the six leading neurological disorders in adults: amyotrophic lateral sclerosis, Huntington and Parkinson’s diseases, traumatic brain injury, aphasia and dementia. For more information, please see the following web link: http://www.brookespublishing.com/store/books/beukelman-4730/index.htm. The Handbook of Augmentative and Alternative Communication, written by Sharon Glennen and Denise C. DeCoste, provides a comprehensive and practical guide for people working with those who do not communicate vocally. The book can be found at http://www.amazon.com/Handbook-Augmentative-Alternative-CommunicationGlennen/dp/1565936841. Chapter 16 of the handbook, entitled “AAC in the Hospital Setting” is especially relevant and can be previewed on Google Books at the following link: http://books.google.com/books?id=ylHxZMRseFgC&pg=PA603&lpg=PA603&dq=aac+hospital s&source=web&ots=Wq3VvqSKkx&sig=KDKcUwj_L2S-Vb1cA0EQAdpCPNg&hl=en. Jerome Groopman recently wrote a book about what goes on in a doctor’s mind as he or she treats a patient. Entitled How Doctors Think, Groopman’s book was recently reviewed in the New York Times. These reviews, and a first chapter that starkly illustrates the potential life and death significance of doctor:patient communication can be found at the following links: http://www.nytimes.com/2007/04/01/books/chapters/0401-1stgroo.html?_r=1&ref=firstchapters&oref=slogin and http://www.nytimes.com/2007/04/01/books/review/Crichton.t.html. Articles: A recent newspaper article entitled Hospital Picture Boards Break Language Barriers: More States to Introduce Panels that Boost Care of Non-English Speakers discusses the positive impact that emergency room picture boards have had for patients who do not speak English. Utilizing picture boards is an effective communication method for non-English speakers to describe their ailments to emergency medical staff. While in this case the picture boards are utilized in emergency rooms, they can also be utilized in other medical settings to ease communication barriers for patients. The boards originated in Florida after Hurricane Andrew in 1992 and have gradually caught on by word of mouth among health groups in various states. To see the full article, please go to http://www.msnbc.msn.com/id/20588960/. Richard Hurtig and Debora Downey have shared their interesting presentation on “The Use Of Augmentative & Alternative Communication In Acute Care Settings” at the Iowa Speech and Hearing Association conference in October, 2006 on line at http://www.uiowa.edu/~comsci/research/speechlab/powerpoints/Implementing.pdf. (See also “Communicating with People Who are Deaf or Hard of Hearing in Hospital Settings,” an ADA brief @ http://www.ada.gov/hospcombrscr.pdf) Patient communication may also face obstacles due to long-held practices regarding physician communication around “adverse events.” A March/April, 2008 article in Harvard Magazine points out that it is difficult to overestimate how ingrained the old way of doing things is in doctors’ psyches: “This is shameful to say, but in many circumstances, the advice was ‘Do not talk to the family at all’—period,” says Robert Truog, professor of medical ethics at Harvard Medical School (HMS). “You can imagine a physician or a nurse, who is feeling horrible about what’s just happened, being told by attorneys not to have any communication. You can imagine, from the family’s side, how horrible it is to have had a relationship with the doctor or nurse, and to suddenly have that completely cut off. That was standard practice until recently.” Last year, Truog, who also directs the Institute for Professionalism and Ethical Practice at Children’s Hospital Boston, helped design a program that trains doctors to have conversations of the kind Leape advocates. Employees of Beth Israel Deaconess Medical Center and Brigham and Women’s Hospital have gone through the training. The curriculum grew out of “Difficult Conversations,” a more all-encompassing program on doctor-patient communication that Truog and Browning had developed. Typically, young physicians and nurses learn how to deal with patients and families through trial and error, Truog says. “The damage that can be done there is just as real as the damage that can be done by not being adequately skilled at a procedure.” Communication between and among hospital staff members is another problem that can impact importantly on patient care and be enhanced by the right tools. To streamline the communications process and improve patient care and satisfaction, the University of Kentucky Hospital Emergency Department installed the Vocera Communications system in March 2004. This device, a small wearable badge that enables instant voice communication over a wireless network, enables health care personnel to immediately reach and respond to their colleagues. This system helped improve communication for staff and ultimately improved patient care. For more information, click on the link below: http://www.uky.edu/PR/News/Archives/2004/April2004/040428_vocera_communications.htm. Websites: AAC TechConnect is a unique website that connects AAC devices with individuals while promoting independence through Augmentative Communication. This unique website enables clinicians, AAC users and medical staff to stay up to date on new AAC devices, provides contact information for all major AAC manufacturers, details product information for nearly 100 AAC devices, provides free trials of AAC devices and facilitates an easy search for AAC devices, comparing features of roughly 100 devices. For more information, see the AAC TechConnect website at: http://www.aactechconnect.com/index.cfm. Manufacturers and Vendors of Communication Supports There are various manufacturers of devices that can support communication access in hospital settings. Juli Pearson and Debby McBride are in the process of consolidating their program resources, kits and training tools into a format that can be purchased and marketed for use in other hospitals and health care settings, as well as a kit for disaster relief preparedness. Please contact them with interest and or questions (emails below). Below is a list to assist medical practitioners in identifying and obtaining useful communication devices. (It may be possible for AACTechConnect to provide all of these items from a single source, if desired.) Vidatak E-Z Communication Boards (Multiple languages and Picture board ) VIDATAK, LLC, (877) 392-6273 or 877 EZ BOARD Picture Board www.vidatak.com Critical Communicators / Pocket Communicator/Picture Communicator (multiple languages) Interactive Therapeutics, (800) 253-5111 [email protected] WordPower OnBoard Saltillo Corporation, (800)382-8622 www.saltillo.com Communication Boards / books (blank)-847-816-858 Mayer-Johnson, LLC, (858)550-0084 www.mayer-johnson.com ABC Overlay with keyguard AAC TechConnect www.aacTechconnect.com Email: [email protected] Buddy Boards (Alphabet Board w/keyguards & phrases) Buddy Speak, LLC www.BuddySpeak.com Spanish learning websites for first responders: http://www.spanish4emergencies.com/ www.SpanishOnPatrol.com PockeTalker (for hearing impaired) Williams Sound products from A Bridge Between Nations (888) 432-0874 or (928) 526-1591 E-mail: [email protected] Chattervox (voice amplifier) Asyst Communications Co., Inc., (847 ) 816-8580 www.chattervox.com U. S. Census I Speak card http://www.usdoj.gov/crt/cor/Pubs/ISpeakCards.pdf. (“Mark this box if you speak --------, “ written in 40 different languages.) Kwikpoint Medical Translators 1-888-594-5764 http://www.kwikpoint.com/ (Medical Visual Language Translator, critical-care English-Spanish picture panels, Disaster Assistance Translator, eight languages) Eyelink board & instructions CINI, (631) 878-0642 www.cini.org Go Talk communication devices /Health Care Communication Board Attainment Company (800)327-4269 www.attainmentcompany.com iCommunicator 718-965-8600, http://www.icommunicator.com/ (Converts speech to text, speech to video sign language, and speech to computer-generated voice or video sign language.) Medical Buddy Board System 1-866-942-9200 http://www.buddyspeak.com (This non electric communication board was designed to help facilitate communication in patients who have lost the ability to speak due to an injury or condition such as a tracheotomy. The patient can point to letters and watch as someone else types and sentence recorded.) . Talking Photo Album Augmentative Communication, Inc., (831) 649-3050 www.augcominc.com For more information on the Boulder project, contact Juli Pearson at [email protected] and/or Debby McBride at [email protected]. For an electronic version of this web essay, contact [email protected]. COMING SOON: www.patientprovidercommunication.org Copyright 2008, Central Coast Children’s Foundation, Inc. (www.centralcoastchildrensfoundation.org)