Moving Outside the
Boundaries of the Doctor's
Office
“The Impossible Dream”
Copyright Sherri T. Loeb RN,BSN, 2014
Sherri T. Loeb, BSN, RN
Patient Advocate, Personal Care Giver, 30+ Year Practicing Nurse
sherriloeb@gmail.com
1
Our Perspective On A Broken
Healthcare System
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
2
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 .
3
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.
4
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
6
Copyright; The New Yorker Sept. 23, 2013
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.
7
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
8
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
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
9
The Hierarchy Gradient in
Health Care
10
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.
11
Copyright © 2012 American Medical Association. All
rights reserved.
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.
12
Choose Your Disease Carefully…
…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
13
Copyright 2013: Sherri T. Loeb RN, BSN, Jerod M. Loeb, PhD
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
14
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
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
15
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
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
16
I’m Clear, You’re Clear, We’re All Clear:
Improving Consultation Communication Skills in
Undergraduate Medical Education
•
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.
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
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Shared decision making …
…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
18
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
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
19
The Actual Next Generation
20
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 Mind
JAMA
July 17, 2013
21
A Cynical Mantra
• Educate the young
• Regulate the old
• Hope the rest retire or die off
With Thanks To David Mayer, MD
22
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
23
Local Hospitalization
- July 2013
• 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.
24
“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 Health
July 2013
25
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.
26
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
•
•
•
•
•
•
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD
27
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 MD
The Best Care Possible
28
• 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
29
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.
30
Our Second Family
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
31
Our Third Family
Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.
32
...”But Never, Ever, Take Away
Hope....”
LaMar S. McGinnis, Jr., MD, FACS
Member, The Joint Commission Board of Commissioners
Former President, American Cancer Society
Former President, American College of Surgeons
33
Thank You
For Allowing
Me To Share
Our Story!
34
In Loving Memory of Jerod
35
Moving Outside the
Boundaries of the Doctor's
Office
“The Impossible Dream”
Copyright Sherri T. Loeb RN,BSN, 2014
Sherri T. Loeb, BSN, RN
Patient Advocate, Personal Care Giver, 30+ Year Practicing Nurse
sherriloeb@gmail.com
3
© 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
X
Coordinate
Prepare
Decide
Evaluate
Communicate
Partner
Images provided by K. Sheridan
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
6 Feb 2012
Reality for Patients and Caregivers
Impact and Cost of Chronic Conditions
One Chronic Condition
Multiple Chronic Condition
Caregivers
No Chronic Condition
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
1.
2.
3.
extrapolated from
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.
Bodenheimer, T., Chen E., Bennett, H. Health Affairs 28, no. 1 (2009): 64–74; 10.1377/hlthaff.28.1.64
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
EASY
• Collect high-value data without
adding burden
FAST
• Minimize the number of steps
necessary
EFFECTIVE
PATIENTCENTRIC
• Present data in concise, meaningful
way
• Enable and incentivize patients to
partner with providers
1. IMS Institute for Healthcare Informatics. “Patient Apps for Improved Healthcare: From Novelty to Mainstream.” Parsippany, NJ: October 2013
2. 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 PatientGenerated Data
Stage 1
Stage 2
Stage 3
2011-2012
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”.
ONC. “Patient-Generated Health Data: White Paper”. April 2012.
© 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
• Preappointment
checklist
• Tailored
provider report
– Patient goals,
notes,
questions
– Symptom
status
– Medication
list,
response and
compliance
• Support during
appointment
• Post
appointment
updates
Image 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 PatientGenerated 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.
National Quality Strategy , 2013 Annual Progress Report Update, August 8, 2013
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108
Empowering Patients Outside the
Doctor’s Office
Well-informed,
Engaged
Patient
Compassionate,
Informed Care
Team
Partnership
Improved health outcomes at lower cost
© 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108