Patients and families living with serious illness have a range of needs beyond disease treatment, including support for functional limitation, pain and other symptoms, and caregiver burden.

Use this toolkit to establish criteria for finding the right patients at the right time and assessing their physical, functional, emotional, social, and spiritual needs.

What’s in the Toolkit

Target scarce resources to the patients most in need by developing appropriate referral criteria and building consult triggers into the electronic health record (EHR). Includes adult and pediatric referral criteria for inpatient palliative care.

CAPC Palliative Care Referral Criteria

Checklist of triggers for referral to a specialty palliative care team.

Identifying Patients in Need of a Palliative Care Assessment in the Hospital Setting

Screen hospitalized patients for unmet palliative care needs, and triage support interventions between the treating team and palliative care specialists. Journal of Palliative Medicine, 2011.

Implementing ICU Screening Criteria for Unmet Palliative Care Needs: A Guide for ICU and Palliative Care Staff
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Guidance on needs assessment, screening criteria selection, implementation planning, and evaluation.

EHR Strategies for the Palliative Care Team: A Town Hall Discussion

Webinar on building assessment and trigger protocols into the EHR.

Supportive and Palliative Care Indicators Tool (SPICT™)

Created by the University of Edinburgh to identify patients with unmet palliative care needs in both hospital and office settings.

Pediatric Palliative Care Referral Criteria
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General referral criteria for children with serious illness, and for specific diseases including cancer and pulmonary, genetic, neurologic, metabolic, and other diagnoses. Center to Advance Palliative Care, updated 2016.

Identifying patients in community settings is particularly challenging because functional/cognition status is rarely captured in claims or clinical data systems. Use this toolkit to find the population at risk for readmission, poor outcomes, preventable suffering, or mortality.

LACE Index Scoring Tool

Used to identify patients at high risk for readmission or death.

Charlson Comorbidity Index

Predicts risk of death within one year of hospitalization. Used by home-based palliative care programs to identify patients for enrollment.

Clinical Triggers for PCMH Referral to Palliative Care

Listing of diagnostic criteria and patient/family circumstances that indicate a need for referral to palliative care. Developed by a Performing Provider System working to transform primary care in New York State.

Supportive and Palliative Care Indicators Tool (SPICT™)

Created by the University of Edinburgh to identify patients with unmet palliative care needs in both hospital and office settings.

Walter Prognostic Index

Online tool that predicts risk of death within one year of hospitalization, specific to patients aged 70+.

Comprehensive ICD-10 Codes to Capture Patients with Serious Illness
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Set of diagnoses codes that can be used to identify those with potential serious illness. Additional screening criteria, such as utilization patterns, should be applied.

Communicating with Treating Clinicians about the Implications of Frailty
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Identifying patients with frailty who are at high risk for health care utilization and adverse outcomes.

Identifying Patients with Chronic Conditions in Need of Palliative Care in the General Population

Development of the NECPAL tool and preliminary prevalence rates in Catalonia. Gómez-Batiste X, Martínez-Muñoz M, Blay C, Amblàs J, et al. BMJ Supportive and Palliative Care, 2013.

Identifying Patients with Serious Illness: The Denominator Challenge

Using claims data to identify the population in need of palliative care. Kelley AS and Bollens-Lund E, Journal of Palliative Medicine, 2017.

Identifying the Right Patients for Specialty Palliative Care

Presentation examining criteria for palliative care services.

Patient Engagement Guide
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Identifying the population in need of palliative care, and working with patients and treating clinicians for effective relationships. Includes suggested phone scripts.

Predictive modeling of U.S. health care spending in late life

Demonstrates that prognostication is not an effective means of prospectively identifying a high-cost/high-need population. Einav, L., Finkelstein, A., Mullainathan, S. and Obermeyer, Z. Science, 2018.

Guidance and case studies to find the right patients at the right time.

Proactive Identification for Health Plans and ACOs: A Guide
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Why proactive identification is important, how to build an algorithm, recommended first steps, and practical tips.

Sample Diagnoses Codes to Identify Patients Living with Serious Illness
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Population health entities can use this list to proactively identify people with potentially unmet palliative care needs.

Identifying Patients with Serious Illness: The Denominator Challenge

Using claims data to identify the population in need of palliative care. Kelley AS and Bollens-Lund E, Journal of Palliative Medicine, 2017.

Predictive modeling of U.S. health care spending in late life

Demonstrates that prognostication is not an effective means of prospectively identifying a high-cost/high-need population. Einav, L., Finkelstein, A., Mullainathan, S. and Obermeyer, Z. Science, 2018.

Pediatric Palliative Care Referral Criteria
MEMBERS ONLY locked

General referral criteria for children with serious illness, and for specific diseases including cancer and pulmonary, genetic, neurologic, metabolic, and other diagnoses. Center to Advance Palliative Care, updated 2016.

Charlson Comorbidity Index

Predicts risk of death within one year of hospitalization. Used by home-based palliative care programs to identify patients for enrollment.

Comprehensive ICD-10 Codes to Capture Patients with Serious Illness
MEMBERS ONLY locked

Set of diagnoses codes that can be used to identify those with potential serious illness. Additional screening criteria, such as utilization patterns, should be applied.

Patient Engagement Guide
MEMBERS ONLY locked

Identifying the population in need of palliative care, and working with patients and treating clinicians for effective relationships. Includes suggested phone scripts.

Case Study: Moffit
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Integration of a patient-reported symptom assessment tool into the EHR and workflow. CAPC and the Accountable Care Learning Collaborative.

Identifying Patients in Home Health
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Poster summarizing factors used to identify palliative need immediately after hospitalization, when the opportunity to prevent unnecessary utilization is highest. OHSU and Brown University.

Advanced Illness and Frailty Value Sets

NIH's code sets that can be used to create identification algorithms. See Advanced Illness and Frailty value sets, stewarded by NCQA.

Evidence-based resources for assessing pain, symptom burden, psychological and social needs, caregiver burden, and spiritual distress.

Revised Edmonton Symptom Assessment System (ESAS-r)

Assesses for nine symptoms experienced by patients with serious illness and quantifies their severity. Alberta Health Services.

Pain Assessment Questions
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Recommended assessment questions to typify pain and inform pain management for patients with serious illness. Center to Advance Palliative Care, 2015.

Pain Assessment and Documentation Tool (PADT)

Validated instrument to assess pain intensity and impact on function over time.

Wong-Baker FACES Pain Rating Scale

Illustrated pain scale for patients with cognitive impairment and children.

Condensed Memorial Symptom Assessment Scale (CMSAS)

Measures the frequency, severity, and distress associated with 32 symptoms.

Memorial Symptom Assessment Scale

Assessment of more than 30 symptoms; also quantifies severity.

NCCN Distress Thermometer

Assessment tool for symptom burden and impact on quality of life. National Comprehensive Cancer Network (NCCN), 2016.

PHQ-4 Validated Screening Tool for Anxiety and Depression

Brief (4-question) screening tool for anxiety and depression.

PHQ-9: Validated Screening Tool for Depression

Used to screen, diagnose and measure the severity of depression.

Palliative Performance Scale

Assesses the patient's functional abilities including ambulation, activity level, self-care ability, intake and consciousness.

ECOG Performance Status

Assess disease progression, impact on activities of daily living, and appropriate treatment and prognosis.

Karnofsky Performance Status Scale Definitions Rating (%) Criteria

Stratifies patients by level of functional ability. Like the PPS, the Karnofsky score can be used to predict survival.

AD8 Dementia Screening

Screens for early dementia, which is often missed by common assessment tools such as the Mini-Mental Status Examination.

Zarit Burden Interview (ZBI-12)

Self-reported caregiver assessment.

Peds QL

Modular approach to measuring health-related quality of life in both healthy children and those with acute and chronic health conditions.

CMS Accountable Health Communities Screening for Health-Related Social Needs

Identifies unmet need in housing, food, transportation, utilities, and safety. Developed by CMS for the Accountable Health Communities model.

Health Leads Screening Toolkit

Social needs screen including: social needs domains, best practices, recommended screening tool (in English and Spanish) and a library of clinically-validated and patient-centered questions.

Spiritual Screening Tool

Assessment for suffering, distress, disconnection, or spiritual pain. Supportive Care Coalition.

Social Determinants of Health Screenings

Two-tiered assessment screening program developed by Montefiore Health System to measure social determinants of health.

Help patients and families understand palliative care and request a consult when needed.

Patient Resources: GetPalliativeCare.org

Website for patients and families with definitions, relevant patient stories, resources, and a searchable database to find palliative care programs.