Dying in America IOM Report Review Emphasis on Local Impact Virginia (Ginger) Marshall MSN, ACNP-BC, ACHPN, FPCN National Director of Palliative Care Hospice & Palliative Care Compassus University of Utah 5 th Palliative Care and Hospice Symposium April 15, 2016
San Antonio, TX “A hurricane of change is made of the things like the beating of a butterfly’s wings”
Dying In America Study Overview
Statement of Task : Conduct a Consensus Study Determine : Current state of medical care for persons of all ages with a serious illness or medical condition who may be approaching death and require: coordinated care , appropriate personal communication (or communication with parents or guardians for children and individual and family support. Assess: • The delivery of medical and social care, to both the person approaching death and the family; • Person-family-provider communication of values; • Preferences and beliefs; • Advance care planning; • Health care costs, financing, and reimbursement; • Education of health professionals, patients, families, employers, and the public at large. Explore approaches to advance the field. http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and- Honoring-Individual-Preferences-Near-the-End-of-Life.aspx
Committee Philip A. Pizzo (Co-Chair) Medicine, Academia Diane E. Meier Medicine, Public Policy Stanford University Center to Advance Palliative Care David M. Walker (Co-Chair) Finance Icahn School of Medicine Former U.S. Comptroller General William D. Novelli Consumer Empowerment Patricia A. Bomba Payer Georgetown University Excellus BlueCross BlueShield Stephen G. Pauker Medicine, Medical Informatics Eduardo Bruera Medicine, Oncology Tufts University MD Anderson Cancer Center Tufts Medical Center Charles J. Fahey Social Work , Spirituality, Clergy Judith R. Peres Social Work, Long Term Care Fordham University Clinical Social Worker/Policy Consultant Milbank Memorial Fund Leonard D. Schaeffer Finance, Payers Pamela S. Hinds Nursing, Pediatrics University of Southern California Children’s National Health System W. June Simmons Social Work, Nursing The George Washington University Partners in Care Foundation Karla F.C. Holloway Law, Cultural Studies Christian T. Sinclair Medicine, Social Media Duke University University of Kansas Medical Center Naomi Karp: Finance, Consumer Protection Joan M. Teno Medicine, Academia, Research Consumer Financial Protection Bureau Brown University Jean S. Kutner Medicine, Research Fernando Torres-Gil Medicine, Public Affairs University of Colorado UCLA Bernard Lo Medicine, Bioethics James A. Tulsky Medicine, Research, Communication Greenwall Foundation Duke University Salimah H. Meghani Nursing, Bioethics, Research UPenn School of Nursing
“Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe
Care Delivery and Clinician-Patient Communication
Findings— Care Delivery • Multiple transitions between health care settings can fragment delivery of care and create burdens for patients and families • Demand for family caregiving and the responsibilities of family caregivers are increasing • Palliative care enhances quality of life, reflects patient choices, and supports families • Widespread timely referral to palliative care appears slow
Louisville, KY “The right to be let alone- the most comprehensive of rights and the right most valued by civilized man.” Justice Louis Brandeis
Recommendation 1 Delivery of Care Government health insurers and care delivery programs, as well as private health insurers, should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life. Comprehensive Care should be: • Seamless, high quality, patient centered, family oriented, 24/7 accessibility • Consider evolving physical, emotional, social, and spiritual needs • Include coordinated information transfer across all providers and settings • Be consistent with individuals’ values, goals and informed preferences Steps for healthcare organizations to provide comprehensive care • Access to Palliative Care and or Hospice care in all settings of care • Interdisciplinary Palliative Care teams • Transparent and accountable care through public reporting of quality Complete recommendation available at www.iom.edu/endoflife and cost measures
Recommendation 1 Delivery of Care What Can You Do? • Family oriented care o Assess impact of treatment goals on involved caregivers • Transfers across all providers and settings o Transfer / Discharge summaries highlighting goals of care o Verbal reports to RNs, MDs, Social workers in accepting facilities o Copies of POLST forms and living wills • Spiritual needs o Spiritual Assessment…….Universal questions to ask “Where do you find your spiritual and emotional support during this time?” “Is your spirituality a resource to you at this time?” “How are your emotional needs being met?” o Triggers for involvement of chaplain support? o Offer to involve outside clergy in discussions of treatment goals • Interdisciplinary Palliative Care
Findings— Clinician-Patient Communication and Advance Care Planning • Most people nearing the end of life are not physically, mentally, or cognitively able to make their own decisions about care. o Advance Care Planning is essential to ensure that care reflects values, goals, and preferences • Of people who indicate their EOL care preferences, most choose care focused on alleviating pain and suffering. o Advance Care Planning and medical orders are needed to ensure these preferences are honored • Frequent clinician-patient conversations about EOL care values, goals, and preferences are necessary to avoid unwanted treatment. • Incentives, quality standards, and system support are needed to promote improved communication skills and more frequent conversations. Complete findings available at www.iom.edu/endoflife
Charleston, WV
Recommendation 2 Clinician-Patient Communication and Advance Care Planning Professional societies and other organizations that establish quality standards should develop standards for clinician–patient communication and advance care planning (ACP) that are measurable, actionable, and evidence based. These standards should change as needed to reflect the evolving population and health system needs and be consistent with emerging evidence, methods, and technologies. Payers and health care delivery organizations should adopt these standards and their supporting processes, and integrate them into assessments, care plans, and the reporting of health care quality. Complete recommendation available at www.iom.edu/endoflife
Recommendation 2 Clinician-Patient Communication and Advance Care Planning Payers should tie such standards to reimbursement and professional societies should adopt policies that facilitate tying the standards to reimbursement, licensing, and credentialing to encourage • the opportunity for all persons to participate in their health care decision making; • initiation of ACP conversations and integration of them into care plans; and • clinician’s revisiting of ACPs Complete recommendation available at www.iom.edu/endoflife
Recommendation 2 Clinician-Patient Communication and Advance Care Planning What Can You Do? Develop standards for clinician–patient communication and advance care planning (ACP) that are measurable, actionable, and evidence based. • University of Utah Center on Aging o http://aging.utah.edu/programs/utah-coa/directives/provider.php • NHPCO's Quality Resource Center o http://www.nhpco.org/quality • AAHPM o http://aahpm.org/quality/quality-guidelines • Physician Quality Reporting System (PQRS) o https://www.medicare.gov/physiciancompare/staticpages/data/pqr s.html
Recommendation 2 Clinician-Patient Communication and Advance Care Planning What Can You Do? Payers and health care delivery organizations should adopt these standards and their supporting processes, and integrate them into assessments, care plans, and the reporting of health care quality • Review and assess your organization’s policies / guidelines for Advance Care Planning o Easily assessable? o Standard Location in paper chart or EMR? o Transitions of Care? • QI projects for Advance Care Planning o Cancer Care Ontario’s Advance Care Planning toolkit https://www.cancercare.on.ca/common/pages/UserFile.aspx?fileId= 289778
Professional Education
Findings—Professional Education • The establishment of specialty practice in hospice and palliative medicine is a major improvement in the education of health professionals. • Three problems remain: o Insufficient attention to palliative care in medical and nursing school curricula o Educational siloes the impede development of interprofessional teams o Deficits in equipping providers with sufficient communication skills • Health professionals are not always adequately prepared to deliver “basic” or “primary” palliative care
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