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Transcript of 1 Moving Outside the Boundaries of the Doctor's Office “The Impossible Dream” Sherri T. Loeb,...
1
Moving Outside the Boundaries of the Doctor's
Office“The Impossible Dream”
Sherri T. Loeb, BSN, RNPatient Advocate, Personal Care Giver, 30+ Year Practicing [email protected]
Copyright Sherri T. Loeb RN,BSN, 2014
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Our Perspective On A Broken Healthcare System
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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My Background
• Bachelors Degree in Medical Technology
• Bachelors Degree in Nursing (Med/Surg, Cardiac,
ICU)
• 30 + years in Health Care
• Almost 30 years of bedside nursing
• Heavily involved in in-patient patient safety activities
• Served as Clinical Trials Nurse/Coordinator
• Spoken Nationally on Patient and Family Engagement
• Member of Patient and Family Advisory Council for
Quality and Safety Copyright: 2013: Sherri T. Loeb RN, BSN .
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Jerod's Health Care Journey...
• Routine physical in August 2011, was asymptomatic and felt in perfect health; only complaint – minor low back pain
• PSA in 2009 – 1.29• PSA in 2011 – 535 (yes, 535)• Biopsy: Gleason 8 (4+4) (positive 3 of 12 core samples)• Stage IV prostate cancer at diagnosis with significant
bone metastases• Standard androgen deprivation therapy - failed at 3
months• Local oncologist – next option to offer was “what
insurance would cover”, not what would be the best treatment
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
Jerod's Health Care Journey
• After prodding by us off-label use of abiraterone at an out of pocket cost of $6,000/month – No suggestion of clinical trial
• Enrolled in clinical trials at NIH Clinical Center in Bethesda, Maryland and the MD Anderson Cancer Center in Houston, Texas; monthly trips to Houston
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD
6Copyright; The New Yorker Sept. 23, 2013
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We Have Seen The Best Of Health Care And The Worst Of Health Care….
• Drugs that work and then stop working• Physicians who prescribe drugs that should not be
prescribed together• Dispensing errors; failures to accurately reconcile
medications• The interesting phenomenon of being hurt in order to
be helped• Unanticipated drug-drug interactions• Forgetting to be told the results of significantly
abnormal laboratory results• Almost never being given good news without the
inevitable "but" that all cancer patients can associate with
• An association with several oncologists who care and are extraordinary role models - and some who are not
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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Patient-centered care supports active involvement of patients and their families in the design of new care models and in decision-making about individual options for treatment. The IOM (Institute of Medicine) defines patient-centered care as: "Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions."
Donald Berwick MD, MPA
Making Individual Health Care Decisions Can Be Hard – Even With
Good Evidence And Even For Someone In The Field For Many Years
Technical Quality Is Important - But So Too Is Patient Experience Of Care
9Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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The Hierarchy Gradient in Health Care
Copyright © 2012 American Medical Association. All rights reserved.
From: Communicating With Physicians About Medical Decisions: A Reluctance to Disagree
Arch Intern Med. 2012;():1-2. doi:10.1001/archinternmed.2012.2360
Percentage of participants who would ask questions of, discuss preferences with, or express disagreement to their physician when relevant.
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Some “Loeb Maxims” To Remember
What We Have Learned In The Last 24 Months……
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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…But Choose Your Health Care Provider Even More Carefully
– Not all physicians or hospitals have the same expertise
– Ratings (hospital and physician), while ubiquitous, are often irrelevant, and many times, just wrong
– Access to innovative care depends on innovative caregivers with innovative knowledge and awareness
– Patient’s values and desires matter, especially when the evidence runs out as it often does in cancer
– Interdisciplinary vs. multidisciplinary
Copyright 2013: Sherri T. Loeb RN, BSN, Jerod M. Loeb, PhD
Choose Your Disease Carefully…
Patient and Family Engagement
A set of beliefs and behaviors by patients, family members, and health professionals and a set of organizational policies, procedures and interventions that ensure both the inclusion of patients and families as central members of the healthcare team and active partnerships with providers and provider organizations. Benjamin K. Chu, M.D. Chair of the AHA’s Board of Trustees
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Surviving A Health Care Crisis Requires Having A
Relative/Friend With You At All Times
• Even health care professionals become deaf, dumb and blind when in crisis mode about their own health
• Navigation of the health care system requires a map, a guide, and an extraordinary amount of skill and stamina – even for those who work in the system
• And that is before you have to deal with insurers
15Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
Communication Failures Are The Rule And Not The Exception
• Literacy levels are low…..and health literacy levels are even lower
• Communication failures at transitions of care are nearly ubiquitous…..and harm patients every day
• These failures occur between physicians and physicians, physicians and nurses, nurses and nurses, and between all types of caregivers and patients
16Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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• With increased attention on transitions of care in light of the recent scrutiny of duty hours, consultations and other interphysician interactions, such as handoffs, are becoming increasingly important. As modern medicine increases in complexity, the skill of communicating with medical colleagues throughout the continuum of care becomes more challenging.
Improving Consultation Communication Skills in Undergraduate Medical Education
Academic Medicine, June 2013 - Volume 88 - Issue 6 p 753-758 Kessler, Chad S. MD, MHPE; Chan, Teresa MD; Loeb, Jennifer M.; Malka, S. Terez MD
I’m Clear, You’re Clear, We’re All Clear:
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…is an approach where clinicians and patients communicate together using the best available evidence when faced with the task of making decisions, where patients are supported to deliberate about the possible attributes and consequences of options, to arrive at informed ...
http://en.wikipedia.org/wiki/Shared_decision_making
Shared decision making …
The Next Generation…• …..of health care professionals is our only
hope• We need to stop producing square pegs for
round holes• Tinkering with the system will not fix the
problems with the system• Apology, disclosure, teamwork, collective
mindfulness, high reliability systems, and elimination of variation will go a long way toward helping improve quality and reduce the risk of adverse events
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Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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The Actual Next Generation
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The Reality...
“I have the distinct feeling that the patient in America is becoming
invisible. She is unseen and unheard....I gently insist that we go to the bedside, but that is often a place
where the team is no longer at ease. I realize what has happened: the
patient in the bed is merely an icon for the real patient in the computer.”A. M. Nussbaum, MD
A Piece of My MindJAMAJuly 17, 2013
A Cynical Mantra
• Educate the young
• Regulate the old
• Hope the rest retire or die off
With Thanks To David Mayer, MD
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First Hospitalization in Houston Cancer
Center – January 2013• 100% Hand Washing• Phenomenal Communication – White
boards in ED and Inpatient Rooms• Bedside Handoff Report between RN’s• Patient Centered Compassionate Care• Shared Decision Making• Patient and Family Engagement• Team Approach• Excellent Transitions in Care• Patient Safety Key in all areas of care
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Local Hospitalization
• Missing vital signs
• No patient assessment
• Bypassing of CPOE alarm system (audible and visible)
• No communication among caregiver(s) and patient/family members
• No communication among physicians
• Lack of hand hygiene
• Lack of patient identification
• Absence of Shared decision-making Picc line experience
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
- July 2013
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“I think there is a revolution coming. In
the past, patients were expected to be obedient and compliant.”Harlan M. Krumholz, MD, SM
Yale School of Public HealthJuly 2013
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Front-Line Lessons
• The power of friendship triumphs
• Care is not the same from MD to MD or from HCO to HCO
★ Patients should not be compared
• Nursing and compassion are not the same
• Standard of care may be perfect for some - but not for all
• Importance of leadership, leadership, leadership
• Patient and family engagement means everything
• Hiring the right employees is key
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
Recent Experience With Hospice/Palliative Care
• Patient Centered Compassionate Care• Shared Decision Making• Patient and Family Engagement• Genuine Love For Profession• Treated Patient Not Disease• Knew The Ultimate Outcome But Never Ever
Lost The Passion For Caring• Knew When It Was Time To Prepare For The
End• Treated The Family Not Just The Patient
27Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD
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Reasonable Expectations That Patients Who Are Seriously Ill Deserve To Have Fulfilled:
• To have one’s pain and other physical symptoms regularly assessed and competently treated.
• To have adequate information about one’s condition and treatments, in clear and simple terms.
• To have care coordinated between visits and among physicians and health programs involved in one’s care.
• To have crises prevented when possible and have clear plans for managing emergencies in place.
• To have enough nurses and aides on staff in hospitals and nursing homes to provide safe and high quality care
• To have one’s family supported in giving care, in their own strain and, eventually , in their grief.
Ira Byock MDThe Best Care Possible
• You treat a disease, you win, you lose. You treat a
person, I guarantee you, you’ll win, no matter what the outcome.
• Our job is improving the quality of life, not just delaying death.
• We need to start treating the patient as well as the disease.
• You actually are a doctor and admitted it, you’d say, “I don’t cure a huge percentage, I don’t have a 50 percent cure rate…(but) I can have a 100 percent compassion rate.”
Hunter “Patch” Adams MD 1998
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Some May Wonder Why Physicians Keep Trying Different Meds and Different Treatments When Many
Think The Situation Is Hopeless......
But Have They Asked The Patient, Because That Is Where
The Real Answer Lies?
Our First Family
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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Our Second Family
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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Our Third Family
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
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...”But Never, Ever, Take Away Hope....”
LaMar S. McGinnis, Jr., MD, FACSMember, The Joint Commission Board of CommissionersFormer President, American Cancer SocietyFormer President, American College of Surgeons
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Thank You For Allowing Me To Share Our Story!
In Loving Memory of Jerod
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Moving Outside the Boundaries of the Doctor's
Office“The Impossible Dream”
Sherri T. Loeb, BSN, RNPatient Advocate, Personal Care Giver, 30+ Year Practicing [email protected]
Copyright Sherri T. Loeb RN,BSN, 2014
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Patient and Family Engagement
“a set of beliefs and behaviors by patients, family members, and health professionals and a set of organizational policies, procedures and interventions that ensure both the inclusion of patients and families as central members of the health care team and active partnerships with providers and provider organizations”
- Benjamin K. Chu, M.D. Chair of the AHA’s Board of Trustees , Health Research & Educational Trust/American Hospital Association, 2013
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Reality for Patients and Caregivers
6 Fe
b 20
12
Coordinate PrepareDecide
Evaluate Communicate
PartnerX
Images provided by K. Sheridan
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Impact and Cost of Chronic Conditions
One Chronic Condition
Multiple Chronic Condition
No Chronic Condition
Caregivers
Almost 1/3 people in the US manage at least one chronic condition
More than 3/4 of US healthcare dollars are spent on their behalf Data extrapolated from 1. Wolff JL, Boult C, Boyd C, Anderson G . Newly reported chronic conditions and onset of functional dependency. J Am Geriatr Soc 2005;53:851–855.2. Bodenheimer, T., Chen E., Bennett, H. Health Affairs 28, no. 1 (2009): 64–74; 10.1377/hlthaff.28.1.643. AARP Public Policy Institute. Insight on the Issues, November 2008: Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Using Technology to Close the Gap
• Collect high-value data without adding burden
• Minimize the number of steps necessary
• Present data in concise, meaningful way
• Enable and incentivize patients to partner with providers
EASY
FAST
EFFECTIVE
PATIENT-CENTRIC
1. IMS Institute for Healthcare Informatics. “Patient Apps for Improved Healthcare: From Novelty to Mainstream.” Parsippany, NJ: October 20132. The MITRE Corporation healthAction Patient Toolkit research
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Missing Data: Symptom Severity
Image source: The MITRE Corporation
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Missing Data: Compliance
Image source: The MITRE Corporation
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Enabling Integration of Data
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Concise, Meaningful Visualization
Image sources: The MITRE Corporation
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Meaningful Use and Patient-Generated Data
ONC. “Patient-Generated Health Data: White Paper”. April 2012.
Stage 1 Stage 2 Stage 32011-2012 2014 2016
DATA CAPTURE AND SHARING ADVANCE CLINICAL PROCESSES IMPROVED OUTCOMES
• “Consider Stage 3 Meaningful Use criteria to enable and support the use of PGHD by providers;
• Convene stakeholders to identify PGHD opportunities, barriers, and value;• Support development and use of PGHD-related standards; and• Conduct additional PGHD research to collect lessons learned, support adoption, and
inform policy”.
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Making It Easy, Fast and Patient-Centric
Image sources: The MITRE Corporation
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Enabling Patient-Provider Partnership
• Pre-appointment checklist
• Tailored provider report– Patient goals,
notes, questions
– Symptom status
– Medication list, response and compliance
• Support during appointment
• Post appointment updatesImage sources: The MITRE Corporation
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Shared Understanding
…the inclusion of patients and families as central members of the health care team and active partnerships with providers and provider organizations.
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Patient Engagement And Patient-Generated Data
National e-Health Collaborative. “Patient Engagement Framework.” http://www.nationalehealth.org/stages-patient-engagement-framework
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Triple Aim
●Better Care Improve the overall quality, by making health
care more patient-centered, reliable, accessible & safe.
●Healthy People, Healthy Communities Improve the health
of all Americans by supporting proven interventions to
address behavioral, social & environmental determinants of
health in addition to delivering higher-quality care.
●Affordable Care Reduce the cost of quality health care for
individuals, families, employers & government.
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
National Quality Strategy , 2013 Annual Progress Report Update, August 8, 2013
Empowering Patients Outside the Doctor’s Office
Compassionate, Informed Care
Team
Well-informed, Engaged Patient
Partnership
BEST CARE
Improved health outcomes at lower cost
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108