Prior to his accident, Frank was a 26-year-old energetic, physically active young adult with a wide range of interests and a full social life. A C3–C4 cervical spine injury left him unable to move his limbs. When medically stabilized, he was transferred to the surgical intensive care unit, where he was ventilator dependent and in halo traction. He was unable to speak and his only intentional gesture was a gaze shift. The hospital communication team helped Frank establish a reliable yes/no response (looking up to indicate “yes” and down for “no”). They encouraged his nurses and family to offer other choices as well (“maybe” or “later” or “I don’t know”). A speech-language pathologist showed him a speech-generating device (SGD), but when initially asked if he wanted to use it to “talk,” he responded by looking down, “No.” Later that same day, the team demonstrated the SGD again, showing him how he could use it to control the TV and a fan. When asked if he would be willing to give it a try, he replied, “Yes!” by looking up. Within 24 hours, Frank was using a template on the SGD to call a nurse, ask for medication, control a fan, and turn the TV off and on, all with a simple serial scan method and a switch. Over time, he became an active participant in his recovery process, asking doctors questions and participating in decisions about his treatment plan.
Effective communication between patients and providers is a core component of patient-centered and value-based health care. According to the Joint Commission (2010, p.1), effective patient provider communication is the successful joint establishment of meaning in which patients and health care providers exchange information, enabling patients to participate actively in their care from admission through discharge, and ensuring that the responsibilities of both patients and providers are understood. To be truly effective, communication requires a two-way process (expressive and receptive) in which messages are negotiated until the information is correctly understood by both parties.
The medical encounters that occur across the continuum of health care are usually time constrained and many are stressful, high-stake interactions. When communication breakdowns occur, the impacts can be devastating for patients, family members, providers, and the health care system. Research shows that communication difficulties are among the major causes of sentinel events and can negatively affect patient outcomes, safety, and satisfaction, as well as result in increased readmission rates, length of stay, and additional health care costs. Because of the diversity of patients and families served in our health care systems, successful communication can be very difficult to achieve. In fact, many patients present with multiple communication vulnerabilities.
At age 4 years, 6 months, Guillermo was in the ICU, intubated and awake following a series of surgeries for tracheoesophageal reconstruction. Guillermo and his family were from Honduras and spoke Spanish only. Guillermo was most relaxed when his mother or eldest brother were sitting next to his bed and rubbing his arm. Although hospital policy supported his family remaining at bedside throughout the day and night, there were moments when they needed to step away for personal care, to attend team meetings along with a translator, or for other reasons. The speech-language pathologist provided Guillermo with a simple voice output aid (Ablenet Little Mack) with messages that included, “Where is my family,” recorded in both Spanish and English, so hospital staff could understand him. The speech-language pathologists also made a 20-target Go Talk+ device (Attainment Company) available to him. It featured 15 target photos of family members with messages such as, “I want mom,” “You’re my best friend, Frederico,” “I love you,” and “Hold my hand,” as well as some medical messages. All messages were recorded in both languages.
We define “communication vulnerability” as the diminished capacity of an individual to speak, hear, understand, read, remember, or write due to factors that are inherent to the individual (e.g., disabilities related to receptive and expressive language skills, hearing, vision, speech, cognition, and memory, as well as language spoken, lifestyle, belief system, and limited health literacy), or related to the context or situation (e.g., a noisy environment, being intubated in an intensive care unit after surgery, suffering injury while traveling in a foreign country, having cultural practices, lifestyles, or religious beliefs that are not understood or accepted by providers).
Eleven-year-old Joshua had a bone marrow transplant. He was acutely aware of his suppressed immune system and created and used several communication tools during the time he required the use of a Bi-PAP noninvasive ventilator. Using a simple voice output communication tool, Joshua insisted on having the following message available at all times: “If anything falls on the floor, use the Sani-wipe to clean it before you let it touch me. Also, if your gloves touch the floor when you pick it up, change your gloves before coming near me.”
In the book, Patient-Provider Communication: Roles for Speech-Language Pathologists and Other Health Care Professions, we describe how health care facilities and the providers who work within them can begin to assume a more active role in supporting patients who are communication vulnerable. Speech-language pathologists, nurses, administrators, and physicians are key to improving the “culture of communication” within their facilities, spearheading interprofessional practices that benefit all patients and ultimately providers and the facility’s bottom line. Currently, the role of communication intermediary is assumed by a few providers or family members with a personal commitment; although a rising number of health care organizations are beginning to specify policies and role assignments regarding the coordination of communication support services, communication facilitation for all patients with communication difficulties (not just those who are deaf or have second language issues), or a legal or medical intermediary designated to ensure that communication vulnerable patients accurately participate in legal and medical decisions.
Examples of promising practices and strategies across health care settings are highlighted in individual chapters that focus on doctor visits, emergency services, Intensive and acute care settings for children and adults, inpatient and outpatient rehabilitation, long-term residential care, and end-of-life care. In this book, we have invited authors who have considerable expertise in patient provider communication services across the range of health care settings to share information about the policies, intervention strategies, communication materials, and technologies that are being implemented within their medical settings to support the needs of communication vulnerable patients.
The wife of a person with ALS described his end-of-life experience: He was having a great deal of difficulty breathing and simply could not get comfortable in his hospital bed or wheelchair. We decided to go with in-hospital hospice since his pain management was not well controlled. In hospice, he regularly used his (eye gaze-accessible) SGD to tell us what he did and did not want. I am so grateful that he was able to use it extensively during the last few days of his life. I do not know what we would have done without it.
The authors recognize that there continues to be a considerable gap between clinical research evidence, what is mandated by health care policy, and what is experienced every day by patients, their families, and providers during medical encounters because of the ways in which many health care organizations currently deliver care. In other words, we recognize that implementation, or the process of putting effective patient-provider communication policies into practice, continues to be a challenge within many health care organizations; however, in the final chapter of Patient-Provider Communication we discuss a number of implementation strategies.
The Joint Commission. (2010). Advancing effective communication, cultural competence, and patient and family centered care: A roadmap for hospitals. Oakbrook Terrace, IL: Author.
About the Authors
Sarah W. Blackstone, PhD, CCC-SLP, is president of Augmentative Communication, Inc. She has authored multiple texts in the augmentative and alternative communication field as well as articles in Augmentative Communication News and other publications. David R. Beukelman, PhD, CCC-SLP, is the Barkley Professor of Communication Disorders at the University of Nebraska-Lincoln. He has served as director of research and education for the Communication Disorders Division, Munroe-Meyer Institute for Genetics and Rehabilitation at the University of Nebraska Medical Center. Kathryn M. Yorkston, PhD, BC-ANCDS, is a professor of rehabilitation medicine and head of the speech pathology division within the Department of Rehabilitation Medicine at the University of Washington Medical Center.