Responding to patients’ needs and delivering optimal outcomes along the continuum of care demands a central focus on the patient. Patient-centered care—defined as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care” (Berwick, 2009, p. 560)—has long been recognized as a core aim of a health care system; however, patient-centered care is far from the norm (Berwick, 2009; IOM, 2001, 2013a). For providers, a system’s structure, incentives, and culture commonly are insufficiently aligned to support patient-centered care. Too often, patients face uncoordinated care and difficulties in navigating health care systems. Patients, families, and communities are afforded only limited opportunities to engage in and shape their own care or to help in the design and functioning of a learning health system (IOM, 2013a). These challenges are especially acute in the trauma setting, which is typically seen as a crisis environment characterized by loss of control and helplessness for patients and their support networks (Hasse, 2013).
Even though trauma care is highly complex, particularly on the battlefield, patient-centeredness is an essential component of a learning trauma care system. Only a trauma care system structured around the patient experience, one that considers and actively engages the patient, family, and community, can achieve optimal short- and long-term outcomes for injured patients. This chapter analyzes the extent to which military and civilian trauma systems have adopted a patient-centered approach, identifying gaps and opportunities to improve.
Trauma care structured around the patient experience encompasses seamless care across the continuum of care, a holistic focus on patients’ needs, and proactive consideration of the needs of special populations. Each of these aspects is discussed in the sections below.
As discussed in Chapter 2, a patient’s journey from point of injury to rehabilitation and community reentry1 is complex, involving numerous providers and multiple transitions between care settings. Transition points pose the greatest risk in terms of degradation in quality of care (e.g., treatment interruption, handoff errors) (IOM, 2013a). With insufficient attention to patient centeredness, these transitions can be abrupt and disorganized, with too little communication among providers, the patients, and their family members at different levels of care.
In the early years of the wars in Afghanistan and Iraq, the military’s continuum of care was particularly fragmented, with limited communication among the various roles of care (the roles of care are described in Chapter 2). In the absence of effective information management systems, military providers would use a variety of improvised communication strategies, such as writing clinical information on patients’ dressings (Eastridge et al., 2006). Gaps in communication were attributed to a multitude of factors, including the fast operational tempo, immature theater infrastructure, high casualty load, and limited prehospital data collection (DHB, 2015; Eastridge et al., 2006; Rotondo et al., 2011).
As the wars progressed, communication and the overall functioning of the care continuum improved in efficiency and efficacy, facilitated in the later years by the efforts of the Joint Trauma System (JTS). The JTS established weekly patient management video teleconferences so that medical providers at all levels could review and discuss patients’ treatments and outcomes in real time as they moved along the evacuation chain (Blackbourne et al., 2012; Pruitt and Rasmussen, 2014). This served not only as a performance improvement mechanism, but also afforded care providers at receiving treatment facilities a deeper understanding of earlier patient management strategies. Over time, casualty evacuations improved substantially in both speed and capability, driven by the recognition that patient outcomes could be improved by reducing time to definitive care
and providing earlier advanced care. Median prehospital evacuation times2 in Afghanistan were reduced from 90 to 43 minutes after a 2009 mandate for prehospital helicopter evacuation in 60 minutes or less (Kotwal et al., 2016). Further, adopting civilian air ambulance standards—staffing medical evacuation (MEDEVAC) helicopters with critical care-trained flight paramedics—was shown to reduce the risk of mortality by 66 percent as compared to standard MEDEVAC practices where helicopters are staffed by emergency medical technicians certified at the emergency medical technician (EMT)-Basic level (Mabry et al., 2012).
Despite progress over the course of the wars in Afghanistan and Iraq, opportunities remain to further improve communication and the coordination of care. Multiple assessments conducted by the military have noted persistent barriers to effective communication and seamless care transitions (DHB, 2015; Rotondo et al., 2011). In the absence of a common communication portal and knowledge of currently deployed medical providers, clinicians cannot communicate consistently with one another. The Defense Health Board has emphasized that communication is particularly limited among the services, an alarming reality given that the management and execution of casualty evacuation is a joint operation (DHB, 2015). On the battlefield, the flow of information is predominantly unidirectional up to the JTS; there is far less transmission of important clinical information and advances in care to front-line providers (Rotondo et al., 2011). The use of data-sharing technologies and telemedicine to improve communication among prehospital and hospital-based providers in both military and civilian sectors is discussed in Chapter 4.
In both military and civilian settings, seamless transition to rehabilitation is arguably the weakest link in the trauma continuum of care (Eastman et al., 2013). Although rehabilitation is often thought of as a phase of care that begins following completion of the acute medical and surgical interventions, initiating rehabilitation during the acute care phase is essential to optimize recovery from both physical impairments (e.g., prevention of secondary complications associated with immobility) and psychosocial consequences (e.g., building confidence, independence, and motivation) (Ficke et al., 2012). During recent conflicts in Afghanistan and Iraq, more attention has been paid to early and comprehensive rehabilitation. Examples of efforts to expand the military trauma system to incorporate multidisciplinary, state-of-the-art rehabilitation are the advanced rehabilitation programs located at the three military treatment facilities that treat a large proportion of the most severe combat casualties: the Center for the Intrepid in San Antonio, Texas; the Military Advanced Training Center at
Walter Reed National Military Medical Center in Bethesda, Maryland; and the Comprehensive Combat and Complex Casualty Care (C5) program at Naval Medical Center San Diego in California. These three centers employ interdisciplinary teams, innovative technologies, and a sports medicine model to deliver holistic and patient-centered care. The use of a sports medicine model represents a paradigm shift in the military’s approach to rehabilitative care, expanding well beyond restoring basic functionality to pushing patients to the limits of possibility with the goal of returning them to duty and as active participants in society. The Advanced Rehabilitation Centers participate in research, coordinate with the Uniformed Services University of the Health Sciences (USUHS) and the U.S. Department of Veterans Affairs (VA), and leverage public and private partnerships to provide and advance state-of-the-art care.
The VA Polytrauma/TBI System of Care (PSC) provides an integrated continuum of rehabilitation services to address the physical and mental health needs of veterans and service members with impairments resulting from polytrauma and traumatic brain injury. The PSC coordinates and delivers care at a variety of sites across the United States, linking specialized rehabilitation services provided at regional referral centers, network sites, and VA facilities (VA, 2016b).
Although the military learned over time to build capacity and capability for effective transition support, the policies and infrastructure needed to deliver such support were slow in coming and challenges persist in the transition of ongoing care from the military to the VA and in the capacity within the military to meet the needs of all injured service members, especially with regards to behavioral health and well-being (GAO, 2012). Care coordination and case management programs that assist recovering service members and their caregivers and families by facilitating access to care, services, and benefits (e.g., service-specific wounded warrior programs) were strengthened following the highly publicized exposure of deficiencies at Walter Reed Army Medical Center in 2007 (GAO, 2012). In 2009, the U.S. Department of Defense (DoD) sought to improve quality of care and transition of recovering service members by establishing uniform guidelines, procedures, and standards for Recovery Coordination Programs, management of which was assigned to the Service Wounded Warrior Program commanders (DoD, 2009). Similarly, a Federal Recovery Coordination Program, jointly developed by DoD and VA, assists with interdepartmental coordination and continuity of rehabilitative care for service members who are unlikely to return to duty and veterans, in part by establishing a federal recovery coordinator as a single point of contact for DoD and VA case managers, as well as patients and their families (GAO, 2012). Although an evaluation of these and other DoD and VA rehabilitation support programs
is beyond the scope of this report,3 the committee emphasizes that, as with acute trauma care advances, there is great need and opportunity for military lessons learned and best practices related to rehabilitative care to be translated to the civilian sector.
It must be acknowledged, however, that application of military lessons learned on seamless transition to rehabilitation is constrained by significant differences in health care delivery between military and civilian sectors. Unlike the civilian sector, where health care is largely privatized, the military offers service members universal health care through the Military Health System. This affects care in two major ways. First, DoD can establish policy requiring the services to offer programs that smooth the transition to rehabilitation. In the civilian sector, the burden of managing the overwhelming process of transitioning to one of the many different types of rehabilitation facilities4 or appropriate outpatient services most often falls to patients, their families, and their health care providers. Second, access to rehabilitative care for wounded service members is not limited by insurance coverage. In the civilian sector, however, lack of access to high-quality rehabilitative care for uninsured and underinsured individuals has been associated with poorer long-term outcomes for trauma patients (Davidson et al., 2011; Mackersie, 2014). As a result, even optimal acute care delivered in the prehospital setting and at the trauma center may be undermined by lack of effective rehabilitative care and support after discharge.
Despite these challenges, some programs to facilitate more seamless transitions to rehabilitation have been developed in the civilian sector. Multidisciplinary discharge rounds5 represent a promising practice by which the transition to rehabilitation can be enhanced for trauma patients. At Baltimore Shock Trauma, the implementation of multidisciplinary discharge rounds was associated with a 15 percent decrease in length of stay, which likely contributed to a 36 percent increase in patient volume and a dramatic reduction in the number of instances the trauma center went on bypass status (i.e., was not able to accept admissions), revealing other benefits of greater care coordination beyond those that may be experienced by the patient (Dutton et al., 2003). Further, a growing body of research funded by the National Institutes of Health (NIH) shows that a transitional
4 Upon trauma patient discharge from the acute care hospital, post-acute care settings may include inpatient rehabilitation facilities, skilled nursing facilities, outpatient facilities, or the patient’s home (e.g., home health agencies).
5 Multidisciplinary teams—consisting of the trauma physician, “an orthopedic surgeon, the hospital bed manager, the unit’s discharge planner, the unit nursing staff, and physical, occupational, and speech therapists”—review the patient’s plan of care (Dutton et al., 2003, p. 913).
care model6 in which an advanced practice nurse assumes responsibility for managing the flow between phases of care within a clinical team enhances the transition out of acute care, reduces readmissions, and increases cost savings in patients with chronic illnesses and complex treatment regimens (Coleman et al., 2006; Naylor et al., 1994, 1999, 2004). This model highlights an opportunity to reduce fragmentation across the phases of trauma care if applied to injured patients as they transition from acute care to rehabilitation (Richmond, 2016). Despite the demonstrated success of such strategies, implementation of these kinds of programs to ensure a seamless transition to rehabilitation is nowhere near universal.
In the deployed setting, the driving aim of military medicine is to save lives. Indeed, trauma care providers in both military and civilian settings have made extraordinary progress in reducing mortality among severely injured patients. The record number of soldiers with triple limb amputations in the latter years of the wars in Afghanistan and Iraq attests to the increased capacity of medical providers to keep wounded warriors alive despite the severity of their injuries (DCBI Task Force, 2011). However, patients, families, and medical providers all acknowledge that a focus on survival alone is insufficient; functional recovery, quality of life, and reintegration into society are important outcomes (Richmond and Aitken, 2011).
The scope of trauma’s impact is vast. Its immediate physical and psychosocial effects influence a patient’s functional outcomes and quality of life for years to come. In a civilian study of long-term outcomes among patients who had experienced a prolonged stay in the surgical intensive care unit, only 55 percent of patients contacted at follow-up had achieved maximum function 3 years after sustaining a severe injury (Livingston et al., 2009). In another analysis, trauma patients reported limitations in mobility (48 percent), daily activities (55 percent), and self-care (18 percent), as well as pain (63 percent) and cognitive complaints (65 percent) (Holtslag et al., 2007). Trauma patients who have been hospitalized for serious injuries are at high risk for posttraumatic stress disorder (PTSD) and other mental health disorders like depression (O’Donnell et al., 2010). The National Study on the Costs and Outcomes of Trauma found that 20.7 percent of patients with an injury scoring 3 or higher on the Abbreviated Injury Scale screened positive for PTSD 1 year after injury and 6.6 percent had symptoms consistent with depression (Zatzick et al., 2008). These findings are echoed in the military sector (Grieger et al., 2006; Hoge et al., 2006; Milliken et
al., 2007) and incidence rates may be higher in certain subpopulations of wounded warriors such as amputees and survivors with traumatic brain injuries and severe genitourinary injuries. For example, nearly 66 percent of combat amputees have received one or more behavioral health diagnoses (Melcer et al., 2010).
To achieve maximum recovery and reintegration, survivors of severe injuries will require significant rehabilitative care and psychosocial support focused on healing the whole person—physical, emotional, cognitive and spiritual aspects—including survivor support networks (families, loved ones, and other care providers). The findings and recommendations of the Army Dismounted Complex Blast Injury (DCBI) Task Force concerning DCBI and its associated physical and psychosocial consequences exemplify how the military has taken a holistic approach to addressing the needs of wounded warriors (see Box 6-1). The task force specifies four areas of focus for all battle injuries: “(1) comprehensive pain management at the [point of injury], (2) complex behavioral health challenges facing . . . warriors and their families, (3) the incorporation of a rehabilitation mindset and philosophy throughout the spectrum of care, and (4) spiritual considerations for long-term care and rehabilitation” (DCBI Task Force, 2011, p. E-1). Currently, the JTS lacks access to long-term outcome data, including functional recovery and quality-of-life indicators. To assess the effectiveness of a holistic approach to care, a systematic process for collecting information on patient-reported quality-of-life outcomes is needed.
The behavioral health impacts of traumatic injury are particularly insidious because of the wide-ranging effects of psychosocial disorders on survivors’ functional outcomes and long-term quality of life. Zatzick et al. (2008) showed that symptoms consistent with a diagnosis of depression or PTSD were associated with impairments in physical function, activities of daily living, and return to work 12 months after injury (Zatzick et al., 2008). Consequently, effective mental health screening and early intervention are important secondary prevention strategies to mitigate the development of such disorders and their downstream effects.7 Since onset of PTSD, depression, and other psychological disorders may occur months after injury (Grieger et al., 2006), it is important to continue providing proactive support and monitoring for symptoms throughout the post-acute care period.
A holistic approach to the care of trauma survivors means integrating supportive behavioral health efforts with the treatment and restoration of
7 A comprehensive evaluation of screening tools and treatment options for PTSD and other mental health sequelae of traumatic injury is beyond the scope of this report.
physical functions in trauma management. The military learned the importance of embedding behavioral health specialists as integral members of treatment teams during acute (definitive) and post-acute care to assist patients and their loved ones with the psychological recovery from injury (Ficke et al., 2012; Gajewski and Granville, 2006). Civilian-sector research on the associated benefits has shown promising results. A recent clinical trial showed that patients receiving a stepped care intervention—care management, psychopharmacology, and cognitive behavioral psychotherapy as needed—from a trauma center-based mental health team during inpatient and outpatient care had significantly reduced PTSD symptoms and improvements in physical function over the course of the 1-year study period as compared to controls who received standard care (Zatzick et al., 2013). Similar collaborative care approaches that link trauma survivors to evidence-based behavioral health services have been implemented in military and civilian trauma centers (see Box 6-2). The integration of behavioral health care as a standard component of treatment for severe injury may help to break down barriers to care associated with stigma concerns (Hoge et al., 2006).
In addition to integrating professional behavioral health specialists into clinical trauma teams, peer support programs are used in both military and civilian sectors, particularly for amputees (Gajewski and Granville, 2006; Marzen-Groller and Bartman, 2005). Such programs have been shown to encourage an optimistic future outlook, decrease the sense of isolation, and promote coping abilities and self-management (Marzen-Groller and Bartman, 2005; May et al., 1979). The military uses peer visitors trained through the Amputee Coalition of America (Gajewski and Granville, 2006). These peer visitors, amputees themselves, augment the support provided by a patient’s family. Often, peer visitors serve as role models for patients, and can provide a unique firsthand account of the rehabilitation process and offer practical suggestions for managing the difficulties associated with an amputation. These peer visitors consistently receive the highest satisfaction rating from patients attending the Amputee Clinic at the Walter Reed Army Medical Center in Bethesda, Maryland (Pasquina et al., 2008).
Peer support can also be obtained remotely. For example, the Trauma Survivors Network is an online network through which trauma patients and families connect with one another and obtain advice, support, and information needed to advance the rehabilitation and recovery process. Developed by the American Trauma Society, a leading trauma advocacy organization, the Network provides resources and programs requested by patients and their families (TSN, 2016a).
White House–led efforts to address the needs of military service members and veterans related to mental health, traumatic brain injury, and substance abuse have led to significant investments in research and a pro-
liferation of programs to facilitate access to services (Weinick et al., 2011). However, the committee found little evaluation of such programs targeted specifically to survivors of traumatic injury beyond TBI patients. Further focus on optimal methods for providing holistic care and improving behavioral health outcomes in wounded warriors more broadly is warranted given the higher risk of behavioral health disorders in this population. Such investigations would also have relevance to the civilian sector where the burden of trauma is significantly higher.
A key aspect of care that needs to be structured around the patient experience is pain control, beginning in the prehospital environment and continuing through evacuation, definitive care, and post-acute care (Ficke et al., 2012). Thus, effective pain management necessitates coordination of all medical providers throughout the patient transport system (JTS, 2013b). Early delivery of pain medication not only relieves suffering but also is associated with a reduced risk of PTSD in both military and civilian settings (Bryant et al., 2009; Holbrook et al., 2010; McGhee et al., 2008). Pain management therefore is an important secondary prevention strategy in the context of mitigating mental health sequelae of physical trauma. However, attention must also be paid to the substance abuse risks associated with pain medication (e.g., opioids). The military has observed an association between prescription drug misuse and the rising number of prescriptions written for chronic pain management among service members wounded during the wars in Afghanistan and Iraq (IOM, 2013c). Nonphysician prehospital providers and physicians alike need to be educated on the risks of opioid medications related to substance abuse and the value of a multimodal approach for increasing the effectiveness of pain management medications while reducing adverse effects (e.g., hypotension) and the risk of narcotic dependence (JTS, 2013b). The challenges associated with pain medication misuse are not limited to the military. Opioid abuse has risen to epidemic proportions in the United States, prompting action from the White House to address the rising incidence of substance abuse disorders and overdose-related deaths (White House, 2016).
The military has made significant advances in the care of acute pain, including the development of JTS and tactical combat casualty care (TCCC) pain management guidelines and the use of oral transmucosal fentanyl8 (fentanyl lollipops) to deliver rapid pain control on the battlefield (DCBI Task Force, 2011). In 2009, the Army Surgeon General chartered the Army Pain Management Task Force to develop recommendations for a comprehensive pain management strategy that applies principles of holistic and multimodal care, employs state of the art science and technology, and synchronizes pain management efforts and approaches across DoD and the VA in order to optimize quality of life for service members suffering from acute and chronic pain (DoD, 2010). One initiative that emerged from the Task Force report is an adaption of the Project Extension for Community Healthcare Outcomes (ECHO) model (discussed in Box 3-1) to better fa-
8 Oral transmucosal fentanyl provides pain relief more quickly than morphine. Oral delivery also eliminates the need to obtain intravenous access on the battlefield. At this time, however, only Special Operations Forces medics are equipped with this medication, limiting its use throughout the military (DCBI Task Force, 2011).
cilitate a team approach to complex pain management. In September 2015, the Defense Health Agency initiated a formal collaboration with Project ECHO, building on the success of an Army pilot program (Army Pain ECHO) focused on pain management (Katzman and Olivas, 2016).
Yet despite these efforts, pain associated with traumatic injury remains a significant challenge, particularly in the prehospital setting. In an evaluation of a convenience sample of 309 casualties evacuated to Role 2 or Role 3 facilities in Afghanistan from October 2012 to March 2013, less than 40 percent of the casualties received pain medication at the point of injury9 (Shackelford et al., 2015). Recent initiatives aimed at tracking pain levels upon soldiers’ entry to Role 2 and 3 military treatment facilities (MTFs) have found that 71 percent experience pain at a level of 5 or greater on a scale of 0-10. Pain control is one of 10 major areas of emphasis within DoD’s Combat Casualty Care Research Program (MRMC, 2016). The Defense and Veterans Center for Integrative Pain Management, located within the Uniformed Services University of the Health Sciences, was established in 2003 to improve pain management in military and civilian sectors through research and policy (DVCIPM, 2016).
A focus on the patient requires consideration of the subpopulations of patients that a trauma system may be expected to serve, including pediatric patients, the elderly, women, and vulnerable populations.
Tragically, children are frequently killed and injured in wartime. The Geneva Convention dictates that host national casualties receive adequate medical care.10 DoD doctrine further stipulates that the “commitment of resources should be decided first based on the mission and immediate tactical situation and then by medical necessity, irrespective of the casualty’s national or combatant status” (Cubano et al., 2013, p. 30). Thus, pediatric care is a critical aspect of the military medical mission and needs to be planned for and resourced as such.
Throughout Operation Enduring Freedom and Operation Iraqi Freedom, U.S. military medical personnel cared for thousands of injured host national children (Matos et al., 2008). From 2001 to 2011, children ac-
10 Geneva Convention I and II, Article 12; Geneva Convention III, Article 13; Geneva Convention IV, Article 27; Additional Protocol I, 1977, Articles 9, 10, and 11.
counted for 5.8 percent of admissions and 11 percent of bed days11 in combat support hospitals (Borgman et al., 2012). These data show that pediatric trauma care represents an important and unavoidable component of the military’s medical mission. While the provision of pediatric care fulfills a number of ethical obligations, in some instances it can also support the military’s combat mission. In one anecdote shared with the committee, an Iraqi sheik provided U.S. personnel with information that led directly to the capture of numerous insurgents after a military physician provided care for that sheik’s child (Burnett et al., 2008).
Despite the foreseeable need to provide pediatric care in the battlefield environment, the military was largely unprepared for the realities of its pediatric mission at the start of the wars in Afghanistan and Iraq. Hospitals across the two countries lacked the personnel, equipment, and training required to support the effective delivery of pediatric care (Matos et al., 2008). These gaps were highlighted in testimony presented to the committee, with military nurses strongly asserting a lack of preparation for the challenges of pediatric care (Bridges, 2016). Pediatric support for in-theater hospitals has seen improvement, including the development of a pediatric critical care teleconsultation service and the addition of pediatric information to clinical practice guidelines, but numerous challenges to providing advanced care for pediatric patients in the deployed setting remain (Borgman et al., 2012; Burnett et al., 2008). For example, although pediatric supply kits were developed to augment combat support hospital resources, the kits had to be requested by hospital commanders, who may not have known that such resources were available (Cubano et al., 2013).
The military’s recent operations reconfirm a lesson learned repeatedly throughout the history of warfare: the injury and death of children is an inevitable consequence of battle. Throughout Operation Enduring Freedom and Operation Iraqi Freedom, pediatric casualties often were more severely injured than their adult counterparts, remained in the hospital longer, and required significant unanticipated logistical supplies and resources (Borgman et al., 2012). While the military has adapted to the challenge of pediatric trauma care (see Box 6-3), additional improvements are necessary, particularly in the use of pediatric specialists and the predeployment training of clinical teams (Borgman et al., 2012). Pediatricians may be deployed to fill slots at MTFs in theater, but there currently are no specific requirements for placement of pediatricians at combat support hospitals. Numerous reports and surveys of deployed surgeons reaffirm the need for greater pediatric training and preparation. It is important that these lessons not be lost by medical planners and policy makers during preparation for future operations.
11 The percentage of bed days reflects a provider’s workload.
As discussed in Chapter 1, in the civilian sector, trauma is the most common single cause of mortality and morbidity among individuals under age 46. In 2014, approximately 10,000 children and adolescents died as a result of traumatic injury (NCIPC, 2015a). More than 7.8 million were treated in emergency departments (NCIPC, 2015b), of which 166,000 were hospitalized (NCIPC, 2015c). Several factors are known to affect the occurrence of childhood injuries, including age, sex, behavior, and environment. Relative to their female counterparts, male children younger than 18 have higher rates of injury (Borse et al., 2008), a finding thought to reflect greater risk-taking behavior and exposure to contact sports (Fabricant et al., 2013; Sorenson, 2011). Among infants and toddlers, falls are a common mechanism of injury, while bicycle- and motor vehicle-related injuries become more common as pediatric patients age (NCIPC, 2015e). While blunt injuries represent the majority of traumatic presentations among pediatric
patients, penetrating injuries account for 10-20 percent of pediatric admissions (Cotton and Nance, 2004). Like older-adult patients (discussed below), pediatric patients often have limited physiological reserves and tend to be at increased risk for poor outcomes after injury.
Facilities specifically designed to manage pediatric trauma can better meet the unique health needs of younger patients, including providing access to age- and physiologically appropriate postdischarge care. In many states, there are special designations for pediatric hospitals that do not treat adults and Level I trauma centers that do not treat pediatric patients (ATS, 2016; Potoka et al., 2000). Proximal facilities work collectively with emergency medical services (EMS) agencies and the trauma system to ensure that injured children are transported to and treated at pediatric trauma centers. In Pennsylvania, for example, the University of Pittsburgh Medical Center–Presbyterian has an affiliation with the Children’s Hospital
of Pittsburgh (University of Pittsburgh, 2016). Recently, a pediatric trauma quality improvement program (TQIP) was launched by the American College of Surgeons and made available to Level I and II trauma centers to support benchmarking and quality improvement activities specific to this patient population (ACS, 2016).
Despite the prominence of pediatric trauma and efforts to promote readier access to specialized pediatric care, very limited research is currently available on pediatric trauma and the unique care preferences and needs of pediatric trauma patients (Upperman et al., 2010). Understandings of adult trauma may not be applicable to younger injured patients. Therefore, creating patient-centered approaches appropriate to younger trauma patients will require developing interventions and quality improvement measures relevant to this population.
Among the increasing number of adults older than 64 within the U.S. population, trauma represents a leading and growing cause of death and disability, often associated with a loss of independence (Rhee et al., 2014). In 2014, more than 4.3 million nonfatal injuries occurred among adults over the age of 65 (NCIPC, 2015d). The risk of traumatic injury increases with age as people experience pronounced changes in the sensory apparatus, cognition, and strength (Perdue et al., 1998). Following injury, older adults have higher rates of complications and mortality relative to younger trauma patients (Champion et al., 1989). Declining physiological reserves limit these patients’ ability to survive minor injuries and alter their trajectories for postinjury recovery (CDC, 2012; Champion et al., 1989). A higher prevalence of preexisting comorbid conditions also complicates clinical presentations and outcomes for these patients (CDC, 2012). Traumatic brain injury (Thompson et al., 2006) and hip fracture (MacKenzie et al., 2006) are two of the most common and debilitating injuries occurring among older adults, and are associated with long-term functional impairment, nursing home admission, decreased independence, and shortened life expectancy (Hall et al., 2000; Magaziner et al., 2000; Thompson et al., 2006; Wolinsky et al., 1997). In one study following a specific population of women, one-fifth of hip-fracture patients died within 1 year (Farahmand et al., 2005). A separate analysis found that one-third of those who lived independently before their injury remain in a nursing home for at least 1 year (Zafar et al., 2015).
In light of the burden of geriatric trauma, minimal information is available on where and how older adults should be managed for traumatic injuries. Although there is some evidence to suggest that injured persons over the age of 65 should lower the threshold for field triage directly to a
trauma center (Calland et al., 2012), several studies have shown that the older patient is much less likely to get to a Level I/II center compared to a younger patient with similar injuries (Chang et al., 2008; Nakamura et al., 2012). The reasons for this apparent undertriage of the elderly trauma patient are not well understood but could be related to the inadequacy of current triage criteria, an implicit bias against the benefits of trauma center care for the elderly, and in some cases, a preference on the part of the older patient for treatment at the hospital with which they are most familiar, regardless of its status as a trauma center. At the same time, there is controversy as to how elderly patients can benefit from care at a Level I hospital and how aggressively to manage the severely compromised elderly trauma patient. In the absence of data, the Eastern Association for the Surgery of Trauma (EAST) guideline for the evaluation and management of geriatric trauma concludes that patients should “receive care at centers that have devoted specific resources to attaining excellence in the care of the injured using similar criteria to those used in younger patients” (Calland et al., 2012, p. S348).
Also unknown is how patient preferences within this population can and should be incorporated in treatment decisions, especially when it involves end-of-life decisions (Lilley et al., 2016). Better understanding is needed of what older trauma patients want from their care in terms of location, continuity, and resources in order to ensure that the care they receive aligns with both what they want and with what they need physiologically.
There is a dearth of research with which to understand the gender-specific predictors of trauma outcomes and posttraumatic recovery in women (Sethuraman et al., 2014). Differences in outcomes according to biological sex have been reported (Magnotti et al., 2008; Wohltmann et al., 2001; Yang et al., 2014), but the mechanisms and factors underlying these associations are poorly understood.
Currently, a lack of understanding of women’s unique health care needs hinders the delivery of patient-centered, evidence-based care for women with traumatic injuries. In the United States, 7 percent of women experience traumatic injuries during pregnancy; moreover, traumatic injuries are the most common cause of nonobstetric death among pregnant women (Barraco et al., 2010). Women also are more likely than men to experience intimate partner violence and PTSD, and less likely to seek care following trauma (Tolin and Foa, 2006). Biological sex-based and socially constructed gender-based differences are known to affect health care utilization patterns, health care outcomes, and access to postdischarge care (Sethuraman et al., 2014). Scientifically rigorous research is needed to address sex- and
gender-based differences in trauma and trauma care needed among female patients, and to produce evidence that can be used to provide care that accounts for these differences.
Numerous studies have pointed to differential health outcomes in vulnerable populations, such as racial and ethnic minorities and patients who are uninsured. Data suggest, for example, that non-Hispanic black versus non-Hispanic white patients and uninsured versus commercially or publicly insured patients sustain higher risk-adjusted rates of mortality after injury (Haider et al., 2008, 2013b). Insured black patients are nearly 20 percent more likely to die after severe injury than equivalently injured insured white patients, and injured uninsured white patients are nearly 50 percent more likely to die than similarly injured white insured patients (Haider et al., 2008). Minority patients use more emergency services relative to white patients, and uninsured, urban, and nonwhite patients experience particularly high rates of traumatic injury, especially penetrating injuries (Haider et al., 2008). These groups have special health needs, and their care needs to be culturally dexterous and patient-centered if it is to achieve the best possible outcomes. Variations in hospital-level factors (Zafar et al., 2015, 2016) and a myriad of interrelated patient-, provider- and, systems-level characteristics (Haider et al., 2013a) have been associated with differential outcomes experienced by vulnerable groups of patients. Despite widespread recognition of these disparities, however, little is known about the patient perspective of these groups, how such factors affect the experiences of patients sustaining a traumatic injury, or what can be done to address these special needs in meaningful ways.
Vulnerable populations in many instances also suffer lack of access to trauma care, even in America’s largest cites. For example, the south side of Chicago, which is currently suffering from an epidemic of violence and intentional injury, has not had a trauma center since the last one closed due to financial difficulties nearly two decades ago, earning it the label “trauma desert” (Crandall et al., 2013). After suffering a traumatic injury such as a gunshot wound, patients injured in that part of the city need to be transported several miles in city traffic to reach the nearest trauma center. The resultant delays in access to care have been associated with increased mortality. Crandall et al. (2013) demonstrated a 23 percent increase in the odds of death for patients in Chicago who suffered a gunshot wound and had to be transported more than 5 miles.
Patient-centered care for trauma, as for all conditions, requires proactive engagement of patients, families, and communities in care, system design, and trauma research.
To continuously improve and to deliver better patient outcomes, a trauma system needs to reflect understanding of the needs and wants of injured patients. True patient-centered care engages patients and their families in both clinical decision making and the design of care processes. In such a model, patients and providers work together, making care decisions that take into account a patient’s preferences, life circumstances, and values, as well as the best available scientific evidence (IOM, 2013a).
Given the nature of trauma, patients often lack the physical and mental capacity to engage in shared decision making at the time of injury; as a result, decisions may be made with little to no patient input (Willis et al., 2013). In the military, for example, one report documents soldiers developing “do not resuscitate” pacts with their fellow service members in the event of a particularly damaging traumatic injury (DCBI Task Force, 2011). That soldiers felt driven to make these unofficial arrangements suggests that the military’s trauma system and its providers neither sufficiently understood nor adequately took into account the preferences of those it served. In civilian hospitals, residents spend on average only 2.7 minutes with a surgical patient during morning rounds, with teams inviting questions from patients only 7.7 percent of the time (Gupta, 2013). When consulted on their hospital experience, patients emphasize the “lack of time with residents, fragmentation of care among teams, poor communication with patients/family members, lack of appropriate explanations of the care plan, and the need for better patient-centered care among hospital staff” (Gupta, 2013).
Nurses often are particular champions of patient-centered approaches to the care of trauma survivors, helping to ensure the alignment of clinical decisions with patient values and preferences (Hasse, 2013). In the intense trauma setting, a critical role for all providers but one that is especially well suited to nurses is helping patients and their families understand what is happening in a timely manner so that critical clinical decisions can be made. This may include explanation of medical jargon, purposes of tests, treatment options, and what to expect during treatment (Hasse, 2013). Educating patients and their families about the patient’s injury and its associated effects (e.g., clinical, financial, social) prior to the transition to rehabilitation also helps address the patient’s holistic needs and optimize recovery. This mindset needs to permeate all actors and processes within
a trauma care system, particularly in light of evidence that interventions provided in the prehospital and hospital settings influence a patient’s long-term outcomes and quality of life.
There are ample opportunities, even with trauma, to engage patients and families in care decisions. Examples include documenting patients’ preferences in the primary care setting (in the military, prior to deployment), consulting and involving families in the event of a traumatic injury, and working with patients and their caregivers during the transition to rehabilitation. Involvement of families and caregivers is a particularly important component of patient-centered trauma care that enhances a patient’s motivation to recover, encourages independence, and fosters family support (DCBI Task Force, 2011). Family involvement also bolsters communication, understanding, and shared decision making; family-centered rounds, for example, which incorporate patients and their caregivers into the care team, improve the bidirectional exchange of information between families and providers (Davidson et al., 2007; Mangram et al., 2005; Williams, 2005).
Patient-centered trauma care is not limited to patient–provider interactions; it also extends to patient, family, and community engagement at the organizational and system levels. Having experienced trauma care firsthand, patients, families, and other caregivers possess unique and invaluable perspectives on the design and care delivery of trauma systems. A learning trauma care system leverages these insights to improve the system’s design and care processes, and ultimately, patient outcomes (see Box 6-4). The involvement of patients, families, and communities as advocates for improvement initiatives will help ensure that the patient remains the focus of such efforts and that patients’ feedback and values guide system design (IOM, 2013a).
One strategy for promoting patient engagement is the use of patient and family advisory councils. These councils offer patients and families opportunities to engage directly with an organization’s decision-making structures. Through involvement with such councils, patients and families can participate in performance improvement initiatives, help reform service delivery practices, participate in the selection of new executives, and assist in the development of educational programs for care providers. Patient and family advisory councils can also advise a hospital on how to improve the efficiency and patient-centeredness of its operations. Participation on patient rounds, for example, may generate new suggestions and ideas for improvement (Balik et al., 2011; Johnson et al., 2008; Ponte et al., 2003). A number of patient and family advisory councils have been established in civilian trauma centers (Willis et al., 2013) and VA hospitals (VA, 2016a,c).
In one example, a patient and family advisory council established at York Hospital in York, Pennsylvania (a Level I trauma center), identified and completed four improvement projects: (1) the revision of an informational handbook for trauma patients and their families, (2) the use of whiteboards to inform patients and families about the patient’s daily care plan and identify members of the clinical team, (3) improved communication techniques for nonverbal (e.g., intubated) patients, and (4) an exploration of the impact of PTSD on trauma patients (Willis et al., 2013). At this time, however, the use of these councils in military treatment facilities and civilian trauma centers remains limited.
Another approach for engaging patients, families, and communities is transparent measurement, in which the system commits to gathering and responding to outcome and experience measures provided by patients and families. The collection and use of these measures (assessed in Chapter 7)
not only support quality improvement activities but also demonstrate to patients and families that their experiences and opinions matter.
Within a learning trauma care system, research generates new knowledge and drives innovative advances in care. Trauma research is enhanced when its design and execution are patient centered. Everyone is at risk of trauma. Thus there is an imperative for all members of the public to participate in processes that work to improve trauma care. In this context, patient and other stakeholder involvement is helpful in prioritizing research topics and outcome measures.
Patient-centered outcomes research, as defined by the Patient-Centered Outcomes Research Institute (PCORI), “is the evaluation of questions and outcomes meaningful and important to patients and caregivers” (Frank et al., 2014, p. 1513). Information derived from the engagement of patients, families, and caregivers in the design of clinical research is predicted to increase the relevance of the research to their health decisions. By addressing those clinical questions most important to these stakeholders, PCORI aims to advance the uptake of this information and its use to improve patient outcomes (Frank et al., 2014). While still evolving, evidence demonstrates a variety of positive results emerging from such engagement in research, including not only enhanced relevance of research results to patients but also improved study recruitment and retention rates, and increased validity of outcome measures (Brett et al., 2014; Cashman et al., 2008; Edwards et al., 2011). PCORI is currently funding a 3-year study on trauma in the civilian sector—A Comparative Effectiveness Trial of Optimal Patient-Centered Care for U.S. Trauma Care Systems (PCORI, 2016).
The type of patient–researcher partnership encouraged by PCORI, whereby investigators and patients identify clinical questions together is not inconsistent with the more traditional approach to research funded by other federal entities, including the National Institutes of Health and DoD (Greenberg et al., 2014). In the past decade, for example, institutional review boards for many of the proposed DoD research studies involving trauma methods and practices included patient advocates and/or former patients.
CONCLUSION: A patient-centered approach to trauma care is necessary to achieve optimal immediate-, near-, and long-term outcomes for trauma patients. Thus, it is essential for military and civilian trauma systems to
proactively maximize patient, family, and community engagement and continue to refine the delivery of trauma care so that patients’ holistic needs are supported seamlessly across the continuum of care.
- In both the military and civilian sectors, patient care across the trauma continuum of care is fragmented, particularly during the latter stages in which a patient is transitioning from hospital-based care to rehabilitation and recovery.
- Opportunities exist to improve patient, family, and community engagement in trauma care delivery, trauma system design and improvement processes, and trauma research.
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