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Using Technology to Create a More Humanistic Approach to Integrating Palliative Care into the Intensive Care Unit Christopher E. Cox1,2 and J. Randall Curtis3 1Division of Pulmonary and Critical Care Medicine, Department of Medicine, and 2Program to Support People and Enhance Recovery, Duke University, Durham, North Carolina; and 3Cambia Palliative Care Center of Excellence, Division of Pulmonary and Critical Care Medicine, University of Washington, Seattle, Washington ORCID ID: 0000-0002-4486-0681 (C.E.C.).

Abstract the right patient at the right time. To address these challenges, we first review strengths and limitations of current care models as the A decade ago, the major obstacles to integration of palliative care basis for our novel conceptual framework that uses the electronic into the intensive care unit (ICU) were the limited number of health record as a platform on which external innovations can providers trained in palliative care, an immature evidence base, and a be built, including: (1) screening for patients at risk for poor lack of appreciation for the importance of palliative care in the ICU. outcomes, (2) integrating patient- and family-reported needs, (3) In 2016, the palliative care workforce has expanded markedly and personalizing care, and (4) directing generalist versus specialist triage there is growing appreciation of the benefits of palliative care, algorithms. In the approaches considered, we describe current whether provided by a generalist (intensivist, nurse, social worker) challenges and propose specific solutions that use technology to or palliative care specialist. However, there is evidence that the improve the quality of the human interaction in a stressful, complex quality of ICU-based palliative care is often suboptimal. A major environment. barrier to more broadly addressing this quality problem is the lack of scalable ICU-based palliative care models that use technology to Keywords: critical illness; palliative care; patient-reported deliver efficient, collaborative palliative care in the ICU setting to outcomes; patient centeredness

Why Is It Important to and treatment of pain and other problems, scalable, technology-based strategies with Improve the Current State of physical, psychosocial and spiritual” (1, 2). potential to improve the humanistic delivery Intensive Care Unit–based Although the American Thoracic Society of high-quality palliative care in the ICU. Palliative Care? and the Society of Critical Care Medicine have published statements promoting Unmet Patient, Family, and Clinician An Essential Component of palliative care for patients with critical Needs Exist High-Quality ICU Care illness, there are limited details on how Many hundreds of thousands of deaths occur fi The de nition of palliative care articulates best to deliver high-quality ICU-based in the ICU or just after ICU-based care in the its relevance to intensive care unit (ICU) palliative care (3, 4). Recent work has United States and Europe every year—a “ practice: an approach that improves the reviewed evidence for the impact of number that continues to increase despite the quality of life of patients and their families specialist palliative care in an ICU setting growing use of hospice and palliative care facing problems associated with life- (5–8). The purpose of this article is to (9–11). In addition to high mortality rates, threatening illness, through the prevention examine the strengths and limitations of many critically ill patients suffer from and relief of suffering by means of early current ICU-based palliative care models symptoms including pain, breathlessness, and identification and impeccable assessment as the basis for discussing two innovative, anxiety while in ICUs (12). Family members

(Received in original form August 18, 2015; accepted in final form November 24, 2015 ) Supported by the Duke Institute for Healthcare Innovation (C.E.C.) and the Cambia Health Foundation. Author Contributions: Study design and concept, writing and review, acquisition of funding, and final approval: C.E.C. and J.R.C. Accountable for all aspects of work: C.E.C. Correspondence and requests for reprints should be addressed to Christopher E. Cox, M.D., M.P.H., Duke University Medical Center, Division of Pulmonary and Critical Care Medicine, Box 102043, Durham, NC 27710. E-mail: [email protected] Am J Respir Crit Care Med Vol 193, Iss 3, pp 242–250, Feb 1, 2016 Copyright © 2016 by the American Thoracic Society Originally Published in Press as DOI: 10.1164/rccm.201508-1628CP on November 24, 2015 Internet address: www.atsjournals.org

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CRITICAL CARE PERSPECTIVE often report poor communication, a Donabedian model. This model evaluates model maximizes intensivist autonomy, unsupported decision making, and conflict the quality of health care through variability in physician behavior and over end-of-life care (13). Our increasingly structure (resources, staffing, support), attitudes can lead to systematic under- or shiftwork-driven ICUs are staffed with process (stakeholder interaction, overutilization of palliative care services time-stressed clinicians who are often clinician–electronic health record [EHR] (40, 41). There are also complexities uncomfortable discussing goals of care and interaction, eligibility ascertainment), and associated with “ownership” of medical end-of-life care and who commonly report outcome (quality domains and indicators). decision making and 30-day mortality that barriers to discussions about end-of-life reporting for surgeons that can reduce the care are primarily related to families’ Structure proactive use of palliative care services difficulty accepting poor prognoses or the Epidemiological studies estimate that a (42, 43). Another potential limitation of limitations of life support rather than their staggering 19 to 35% of ICU patients could consultative models is that palliative care own communication skills (14). Therefore, it be eligible for a specialty palliative care providers often enter the clinical picture is not surprising that patients and families consultation on the basis of published late during a time of conflict, may have less experience long-term psychological distress clinical criteria associated with poor knowledge about prognosis and therapeutic (15, 16), clinicians struggle with moral outcomes, also known as “triggers” (see choices in comparison to intensivists, and distress and an epidemic of burnout (17, 18), columns 1 and 2 of Table 1) (33, 34). Based may be uncomfortable in an ICU and discordance between patients’ preferred on the assumption that an expected poor environment in which their role in the team and prescribed goals of care remain outcome is a marker of a significant burden is unclear. Integrative models include ICU similar to that reported 2 decades ago (19). of unmet need, trigger-prompted specialist clinicians who have acquired sufficient Importantly, patients who ultimately survive palliative care aims to improve quality of skills to provide palliative care. In the ICU stay and their families may also life by using advanced communication reality, ICU clinicians vary widely in have important palliative care needs. For techniques to establish goals of care or communication and palliative care skills, example, psychological distress is common reduce conflict, helping to manage complex perhaps in part because current training among survivors of critical illness and among physical or psychological symptoms, remains inconsistent (44). ICU staffing is family members of both survivors and providing psychosocial or spiritual support, also increasingly shiftwork driven and time patients who die in the ICU (20). Family or assisting those who could not navigate conscious, creating a hectic multiprovider members of critically ill patients who survive complex systems of care alone (35). environment that may limit explorations of the ICU are actually less satisfied with Although the number of palliative care patient values and thoughtful consideration clinician communication than family specialists in the United States has of whether specialist or primary palliative members of patients who die in the ICU (21). expanded over the past decade to nearly care would be most efficient. The most 4,500 providers, there are far lower feasible approach is a collaborative mixed Evidence of Palliative Care Effect— palliative care specialist–to-patient ratios model that directs specialist care to the But Room for Improvement in Its (1:1,200) than in other specialties (e.g., 1:71 difficult cases in collaboration with the ICU Delivery for cardiologists and patients with team yet encourages intensivists and ICU A growing evidence base that shows ICU- myocardial infarctions) (36). Furthermore, nurses to manage cases independently that based palliative care interventions can reduce there is dramatic geographic variation in are within their comfort and skill level. length of stay, the use of low-value care, palliative care access, with around one-third However, relatively few examples of and psychological distress among family of hospitals lacking this service (36). Also, scalable models of this mixed model have members (5, 6, 22, 23). So, it should be simple: the palliative care field’s ability to increase been well described, and none have been identify those with the greatest needs, and its current workforce is limited, because documented to improve patient and family then provide needs-targeted palliative care. only about 250 palliative care specialists outcomes. As a result, in many U.S. Yet in reality, the ICU is a complex system enter the work force annually (37). hospitals, intensivist–palliative care where palliative care specialty consultation is Therefore, it would be difficult for many specialist interactions are often marked provided to a small number of critically ill palliative care consult services to manage by a lack of shared understanding and patients (,5%) late in their course through a even a modest-sized subgroup that many inadequate interdisciplinary variety of difficult-to-scale models (24–30). would consider appropriate for palliative communication (8). Although there has been increasing attention care consultation, such as those with It is difficult to efficiently identify to the importance of palliative care in the ICU, chronic critical illness (z400,000/yr in the patients most likely to benefit from palliative improvement in the delivery of high-quality United States alone) (38, 39). care services. Most studies exploring routine care in this setting has been limited (31, 32). or proactive palliative care consultation have Process been activated through clinical screening criteria called triggers (see columns 1 and 2 What Are the Barriers to Clinicians often practice in poor of Table 1) (5, 45). Parsimonious sets of as Operationalizing a Scalable collaborative care models. Current ICU- few as five triggers can identify more than ICU-based Palliative Care based palliative care delivery strategies 85% of ICU patients with poor outcomes, System? include consultative, integrative, and mixed such as early death (33). Because EHRs are models (7). Consultative models generally used by more than 70% of hospitals, they It is instructive to evaluate the current rely on physician judgment to activate the have unmatched potential as a platform for quality of ICU-based palliative care through palliative care consultation. Although this trigger-prompted interventions. However,

Critical Care Perspective 243 244 Table 1. Published Clinical Characteristic-based Triggers for Palliative Care Specialist Consultation and Proposed Approaches to Their Challenges

Proposed Poor Proposed Trigger Published Trigger Criteria Problems with Trigger Outcome Phenotype Definition for Phenotype Advantages of Phenotype

ICU stay . 1 mo (63) Too uncommon and late in Chronic critical illness ICU for .7 d plus >1 of these: Common course (38) .96 h of ventilation High mortality and cost ICU stay . 50% above average Lacks illness severity/course Tracheotomy Prolonged debilitation (52) context Sepsis Multiple readmissions Severe wounds Caregiver burden mrcnJunlo eprtr n rtclCr eiieVlm 9 ubr3 Number 193 Volume Medicine Care Critical and Respiratory of Journal American ICH/stroke/TBI

“Global ischemia” or “anoxia” after “Global ischemia” difficult to Acute, extremely severe Ventilation .2 d plus >1 of these: Common cardiac arrest (24, 34, 53) define illness (24) Status-post cardiac arrest or... High risk of early death Cardiac arrest challenging to ICH or... Cognitive dysfunction identify reliably in EHR in real Predicted mortality .50% or . . . Need for SNF/LTAC time Multisystem organ failure Caregiver burden Multiple system organ failure Complex programmatic (>3 of these): > I , ( 3 organs) (62) algorithm needed PaO 2/F O 2 300 Large ICH with .5 d of ventilation; “Anoxia” hard to define Platelet count , 100,000/ml ICH on ventilator with anoxia ICH presence and Increase in creatinine . 2 mg/dl (24, 34) characteristics difficult to Increase in bilirubin . 2 mg/dl capture in real time Use of vasopressors Full code with poor prognosis (51) “Poor prognosis” is ill defined Brain dysfunction (GCS, RASS)

Active stage 4 cancer (24, 34) “Active” hard to define Elderly with poor Admit from SNF or LTAC or . . . High mortality Staging of cancer often poorly functional status Ventilation 1 dementia or . . . Continuity of care is generally

documented and if so is done (33, 34) Age . 75 1 mechanical ventilation poor in text form Complex family talks involving Advanced age with preexisting Extracting comorbidities during other clinicians often needed functional dependence/ hospitalization is difficult comorbidities (24) Could use EHR problem list, although they are often not updated Dementia (34, 55) Could use EHR problem list, although they are often not updated; unclear how far PERSPECTIVE CARE CRITICAL back to look Nursing facility resident (34) Not well defined in EHR typically If documented, in text format

ICU admission after 10 hospital Somewhat arbitrary Progressive illness >3 Hospital readmissions in 6 mo High mortality d (24) trajectory (24, 62) .1 ICU admission in 3 mo High symptom burden Multiple recent ICU admissions May require bridging multiple Caregiver burden (62) admissions Financial distress

Definition of abbreviations: EHR = electronic health record; GCS = Glasgow Coma Scale; ICH = intracranial hemorrhage; ICU = intensive care unit; LTAC = long-term acute care facility; | RASS = Richmond Agitation and Sedation Scale; SNF = skilled nursing facility; TBI = traumatic brain injury. eray12016 1 February

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Table 2. Challenges to Electronic Health Record–based Trigger Identification of asked about patient values or their emotional, Patients Who Could Potentially Benefit from Palliative Care Consultation and spiritual, and caregiving needs (13, 14, 31, Implications for Building Solutions 47). In the absence of well-characterized need, patients cannot be optimally triaged to Challenges Solutions either palliative care specialists or primary palliative care by ICU clinicians—athreatto the patient-centeredness of the entire EHR-based triggers Reliance on unidimensional, arbitrary Consensus-based, EHR-compatible process of care delivery. Furthermore, factors that lack consensus-based triggers based on poor outcome patients and families may be less likely to acceptance (e.g., ventilation . 1 wk) phenotypes (e.g., chronic critical accept palliative care specialist presence illness, severe acute illness, unless common informational needs, such high-morbidity elderly patient); see Table 1 as addressing misperceptions about the Difficulty extracting from EHRs (e.g., Novel technologies such as SMART (63) purpose of palliative care (e.g., equating “disparate advanced treatment goals,” and FHIR (57) to allow app integration it with end of life or “giving up”), are “unrealistic goals of care”) with EHR data and interoperability identified (8, 36). Although there are few External electronic tools (e.g., apps) efforts to directly assess palliative care require specialized programmatic interfaces to use EHR data needs among critically ill patients and their Intra-EHR solutions are not interoperable families, a recent pilot program has begun across health systems to assess palliative care needs during daily interdisciplinary rounds (46). Governance and collaboration Requirement for specialized programming Share strategies and EHR data registry expertise to build digital solutions within templates using the power of Outcome or external to EHRs professional organizations (e.g., A key limitation of ICU-based palliative Risk of overlap and redundancy in an American Thoracic Society) to unify care, where survival may not be possible and environment of rapid innovation but approach siloed system traditional cost-effectiveness analyses may be inappropriate, is the absence of Patient and family focus dominant, conceptually strong, and widely Patient/family voice is not incorporated in Bedside digital patient-reported accepted patient-centered outcome current trigger-based systems outcomes systems to both perform an measures (48). Some have measured Palliative care approach using arbitrary initial needs assessment and track triggers omits many domains of outcomes concepts clearly important to patient- palliative care quality centered palliative care principles, such as Patient-centered outcomes are difficult to the quality of communication between measure in the context of end-of-life patients/families and clinicians, the quality care Informational deficits about the purpose Incorporate informational content, of dying and death, family member and potential benefits are common question coaches, communication psychological distress, satisfaction with among patients, families, and clinicians prompts, and other tools care, the use of ineffective life-sustaining alike care interventions, resolution of conflict, and the concordance of known with Definition of abbreviations: EHR = electronic health record; FHIR = Fast Healthcare Interoperability Resources; SMART = Substitutable Medical Applications, Reusable Technologies. experienced end-of-life care wishes (49). Given family members’ grief and distress in the weeks to months after the death of a few hospitals are using EHR-based triggers clinician-driven medical record searches or loved one, many drop out during follow up to automate screening, because such a daily ICU team query—a process that is after hospital-based interventions, further “e-triggers” do not yet exist in an optimal time intensive and difficult to scale. complicating outcome assessment. format (Table 2). Many triggers are difficult Prognosis used as a proxy for palliative Therefore, ICU length of stay has persisted to extract from EHRs because of their care needs may not fully capture actual as a common outcome because of its ease in subjective nature (e.g., “disparate treatment needs. Triggers based on clinical collection, although it is neither patient goals”), whereas others are challenging characteristics can identify patients with centered nor a core palliative care quality to ascertain in real time for proactive poor prognoses. However, these cannot metric. screening because they rely on information specify the actual presence, amount, or type that is not codified until after discharge of palliative care need that may exist. (i.e., International Classification of Furthermore, it is not clear that ICU patients What Are Possible Solutions Diseases, 10th revision diagnosis codes). and families who meet specific trigger to Better Operationalizing a A lack of special programmatic expertise criteria have a greater burden of need than Scalable Approach to or resources necessary to operationalize those with other diagnoses, such as acute Targeted, Collaborative triggers within a hospital’s EHR stroke, trauma, or severe respiratory failure Palliative Care in the ICU? environment may be rate limiting as well. (46). Yet investigating need seems to be an In current practice, therefore, trigger-based uncommon practice among clinicians, as Leaders in palliative care have rightly screening usually requires either active family members report that they are rarely highlighted the importance of focusing on

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CRITICAL CARE PERSPECTIVE developing “interventions and care models the likelihood of a poor outcome (the in near-real time in an EHR can be that match existing availability of personnel traditional trigger criterion), the likelihood challenging, as it may depend on searching and are broadly scalable” (50). We would of actually needing specialist-level palliative either physician billing documentation or a add that a successful system should care attention (vs. ICU team–only care), “code blue” note title; out-of-hospital incorporate elements of sensitivity and the feasibility of EHR integration. arrests would likely be omitted. Perhaps a (i.e., reliably identifying all potentially Specific examples of published triggers may better strategy is illustrated in example 5, in eligible patients), specificity (i.e., allowing a help to elucidate these tradeoffs (Figure 1). which we identify an elderly patient with focus on those who have the greatest unmet Example 1 represents “unrealistic goals of chronic critical illness whose family reports needs), and enhancing collaborative care” (51). Although this example may conflict with the ICU team. This scenario ICU–palliative care teamwork. Importantly, describe at least a moderate likelihood of reflects a strategy that aims to optimize we believe that the key attribute of an ideal needing specialist care to navigate conflict, sensitivity, specificity, and patient volume. ICU-based palliative care delivery system it has questionable specificity for certainty It does so by first focusing on a clinically necessary to overcome the structure, of a poor outcome, cannot be feasibly intuitive and recognizable patient process, and outcome challenges extracted from the EHR, and is neither phenotype (or “profile”) rather than just an highlighted above will be the capability patient nor family centered. Example 2, arbitrary time period of care. Second, it to use the EHR (1) to automate the ventilation for longer than 1 week (52), is incorporates an assessment of patient/ identification of patients at high risk of a much easier to ascertain in real time from family need by using patient-/family- poor outcome, (2) to ascertain patient/ EHRs, although is not a specific indicator of reported outcome (PRO) measures. family-reported needs and outcomes, and either palliative care specialist need or PROs are patient/family-completed (3)toefficiently triage the patient–family certainty of a poor outcome; its ubiquity questionnaires that ascertain symptoms, unit to the appropriate level of primary would present a time burden for specialist functional status, quality of life, and (i.e., intensivists, ICU nurses, ICU-based consultants as well. Both “global ischemia experiences—that is, they can assess needs social workers) or specialist palliative care. after cardiac arrest” (example 3) and high as well as outcomes (54). We will expand likelihood of death based on an ICU-based on this dual EHR- and PRO-based strategy Practical Clinical Examples of prediction model (example 4) are highly below. Tradeoffs Related to EHR Triggers specific markers of poor outcome (53). When considering candidate EHR-based Yet, neither trigger is reliably related to Operationalizing an Approach to Care processes to operationalize palliative care palliative care specialist need, and global for High-Need, Poor-Outcome delivery, it is useful to consider the ischemia is difficult to identify using real- Patients/Families implications of using different clinical time EHR data. In fact, even identifying the We propose conceptualizing three main characteristics in light of tradeoffs related to occurrence of an in-hospital cardiac arrest strategies for delivering ICU-based palliative care as shown separately in Figure 2: (1) triggers based on prognosis or diagnosis, (2) poor outcome phenotypes plus a palliative care needs assessment, or (3)a needs assessment alone. We examine each strategy by discussing functionalities including screening, intervention personalization, and outcomes assessment. Strategy 1, the use of prognostic or diagnostic triggers alone to initiate a consultative model of palliative care, reflects the general current state of trigger-based palliative care and also serves as the basis for most of the existing literature examining the benefit of palliative care consultation in the ICU (24, 53, 55). Unfortunately, this typically paper-based strategy poorly leverages EHRs to automate the “heavy lifting” of palliative care eligibility screening because of triggers that may be highly subjective, somewhat arbitrary, and lacking clinical context. Because the voices of patients and family members are not incorporated in the trigger, a process is Figure 1. Examples of palliative care triggers. Axes reflect certainty of need for palliative care promoted in which sensitivity likely specialist, certainty of poor outcome, and feasibility of electronic health record integration. The outstrips accuracy and length of stay volume of the box approximates the relative number of patients who likely meet the trigger. Of note, generally serves as the chief metric of example 5 would require both electronic health record and patient-reported outcome data. success.

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Strategy 1: current trigger strategy Strategy 2: poor outcome phenotype Strategy 3: needs assessment alone in most hospitals with needs assessment

1 trigger criteria poor outcome phenotypes 1

Ventilator Cardiac Age >65 LOS >2 Chronic Acute Elderly, Declining >7 days arrest + vent weeks critical severe poor health illness illness function trajectory

needs assessment needs assessment Physical symptoms Information Physical symptoms Information 2 Psychiatric symptoms Communication / conflict 1 Psychiatric symptoms Communication / conflict Spiritual support Decision making Spiritual support Decision making Social support Cultural / language Social support Cultural / language

Simpler needs Complex needs Simpler or no needs Complex needs

interventions interventions interventions c Palliative care consultants ICU team + digital tools Palliative care consult + ICU team + digital tools Palliative care + 2 see all trigger patients 3 ICU team + digital tools 2 ICU team + digital tools

outcomes outcomes outcomes Hospital Patients Families Clinicians Hospital Patients Families Clinicians Hospital 3 4 3

LOS EOL care psych. burnout LOS EOL care psych. burnout LOS quality distress quality distress

1 Trigger screening using manual EHR review. 1 Phenotype screening with EHR-integrated app.

2 Needs assessment with bedside ePRO tool. 1 Needs assessment with bedside ePRO tool.

2 Intervention: palliative care sees all patients. 3 Intervention: patient triage using needs. 2 Intervention: patient triage using needs.

3 Outcomes assessment using EHR. 4 Outcomes assessment usingmobileePRO. 3 Outcomes assessment using mobile ePRO.

Pros: Cons: Pros: Cons: Pros: Cons: - Simpler criteria - May be overly sensitive - Automated system - Requires institutional - Simple concept - Unknown sensitivity - Customizable to local needs - Not collaborative - Higher specificity data system - No EHR needed - Timing of application? - No sense of need - Scalable triage system - Poor outcome phenotype -Quality indicator framing - No focus on high-risk - Not easily scalable - Interoperable concept is untested patients - Quality indicator framing - More research needed

Figure 2. Example of possible electronic health record (EHR)-based palliative care systems. The diagnosis- and prognosis-based strategy most commonly used in hospitals currently (strategy 1) to trigger palliative care deployment typically requires manual EHR searches, potentially overwhelming numbers of palliative care consults, and often relies only on length of stay as a measure of success. Strategy 1 stands in comparison to proposed future strategies 2 and 3. Strategy 2 (poor outcome phenotype plus needs assessment) uses digital technology to automate EHR searches that define recognizable poor outcome patient phenotypes as triggers. It then adds needs assessments using electronic patient-reported outcomes (ePRO) measures to efficiently triage patients to generalist versus specialist care and automate patient-centered outcomes collection via ePRO. Strategy 3 (needs assessment alone) foregoes the use of triggers based on clinical characteristics, instead targeting palliative care to the specific needs reported by patients and/or families. ICU = intensive care unit; EOL = end of life; LOS = length of stay.

To address the conceptual weaknesses clinically recognizable concepts. For external app could be integrated that can and logistical inefficiencies of strategy 1, we strategy 2, triggers are based on poor display lists of patients meeting these propose two novel approaches (strategies 2 outcome phenotypes derived from EHR phenotypes along with their patient/family- and 3) that use digital solutions to provide data elements, with “risk stratification” reported needs as framed by the National a more humanistic, scalable ICU-based performed through a palliative care needs Quality Forum’s eight domains of palliative palliative care system with smarter screening, assessment conducted with a bedside care quality (56). By using novel open- collaborative and targeted interventions, and mobile device–based PRO system source programmatic approaches both to patient-centered outcomes. (Figure 2). A further conceptual advance is define poor outcomes phenotypes (Table 1) First, the nature of the triggers for that the EHR is used not as a solution itself, (57) and to connect EHR data to the app Strategies 2 and 3 would be based in more but rather as a platform on top of which an itself, cross-EHR interoperability would be

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CRITICAL CARE PERSPECTIVE possible—and scalability enhanced (58). of communication, therapeutic alliance, care—and that they improve patient and Strategy 3’s trigger for palliative care quality of dying and death, and perceived family outcomes. The framework proposed delivery would consist solely of a needs quality of care. in this article articulates feasible strategies assessment gathered electronically at the There are a number of potential that can be evaluated for effectiveness. bedside from patients, families, or even ICU advantages to Strategies 2 and 3. First, they Fourth, a danger of any technology-based teams. The rationale for such a system is would attempt to substantially enhance the tool or intervention is rapid obsolescence. the recognition that deploying palliative specificity of a trigger-based palliative Although European EHR vendors have not care—a discipline focused on symptoms care model and also efficiently target finalized the specifics of the programmatic and needs—based instead on a specific personalized care toward reported, not approach we describe, the Centers for diagnosis or prognosis has conceptual and assumed, need. Second, by applying app- Medicare and Medicaid Services, the logistical limitations, as discussed above. based technology, future iterations would be Veterans Administration, and various The simplicity, low cost, optimization of simpler to build and share than within-EHR United States–based EHR vendors support specificity, and requirement for only a solutions, and the open source nature of the the platform, suggesting that it is a mobile device with no EHR component are programmatic approach would encourage sustainable direction (61). Furthermore, the attractive elements of strategy 3. innovation from an international current strategy of open source build Systems 2 and 3 are designed to audience—rather than limiting it to a small encourages users to iteratively improve it promote a model of “smart triage” to either group of developers with specific EHR with time. Fifth, we recognize that relying generalist or specialist palliative care vendor allegiances. Third, these systems exclusively on patient- or family-reported intervention based on either the quantity or could include a patient- and family-facing need, absent the contextual framing of complexity of reported needs—the most digital hub that includes resources known clinical factors like prognosis, could feasible approach in light of the specialist to be effective (information, navigators, unnecessarily trigger a palliative care workforce concerns described earlier. question coaches, support groups) (23, 59). consultation for temporary reactions to a Simpler informational or decision-making Last, a peripheral cultural benefit would be stressful situation. These concerns could be needs could be addressed initially with the promotion of a common language of allayed to some extent by application of the a portfolio of web-based educational need rather than the disparate parlance of needs assessment after 2 to 3 days of resources curated by the bedside nurse, ICU teams (“the APACHE II score is 30”), ICU care. Last, digital security is always delivered on the same tablet computer used palliative care providers (“the Palliative a concern. However, these tools and to measure the need, and reinforced in a Performance Status score is 50%”), and technologies can be successfully hosted family meeting with the ICU team. More patients and families (“I need help to behind institutional firewalls and link complex needs (e.g., conflict resolution, resolve the conflict between my brother and family reports to patient data with one-way difficult end-of-life decision making) or sister about the life support decision for our data flow and identifier-free login. needs that most ICU teams feel less father”). confident addressing (e.g., spiritual support, psychological distress, anticipatory Limitations and Concerns about Conclusions bereavement, hospice queries) would These Proposed Systems proactively prompt a palliative care First, an important barrier to success for this This is a time of great opportunity for consultation—although one conducted approach could be resistance from ICU ’ ICU-based palliative care. There is an collaboratively with the ICU team s clinicians, who often have strong negative or increasing awareness of the importance of introduction to the family. The ICU team positive feelings about the role of palliative integrating palliative care into the ICU could also opt out of palliative care care specialists. Resistance from family setting. However, there is also evidence that consultation if desired for specific cases, members who may object to yet another ’ many opportunities for providing it are though hospitals could monitor clinician s involvement could be missed—in part because of a lack of well- performance on provider palliative care problematic as well. However, we believe described delivery models that are easily quality metrics. Extending the system one that these attitudinal barriers are decreasing scalable, efficient, patient-centered, and step further, the needs assessment data with the expansion of primary and specialty ’ collaborative. Given the limitations of the could be imported into the team s progress palliative care in our health care system and palliative care specialist workforce along note both to document the need and the the growing public acceptance of palliative with most ICU clinicians’ continued plan for addressing it. care principles (36, 60). Second, a current interest in providing primary palliative Strategies 2 and 3 could also represent barrier for many health systems is lack of care, it will be essential to develop novel solutions to the challenge of collecting quality EHR, a reality that also required automated systems that identify patients at outcomes. The PRO system used to assess manual screening to conduct nearly all of risk for poor outcomes, ascertain patient- in-hospital needs could be used to automate the existing ICU-based palliative care and family-reported need, and facilitate the longitudinal collection of patient- and trigger research. Third, the success of new mixed models of collaborative patient- family-centered outcomes beyond just the approaches to electronically triggered centered care. n standard hospital-centric length of stay palliative care delivery will depend on the and cost metrics, including symptoms, demonstration that they can promote more Author disclosures are available with the text psychological distress, satisfaction, quality collaborative generalist and specialist of this article at www.atsjournals.org.

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250 American Journal of Respiratory and Critical Care Medicine Volume 193 Number 3 | February 1 2016