1 moving outside the boundaries of the doctor's office “the impossible dream” sherri t....

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

2

Our Perspective On A Broken Healthcare System

Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

3

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 .

4

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


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

7

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


8

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.

10

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.

11

12

Some “Loeb Maxims” To Remember

What We Have Learned In The Last 24 Months……


13

…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

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


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


17

• 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:

18

…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

19


20

The Actual Next Generation

21

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

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

24

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


- July 2013

25

“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

26

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


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

28

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

29

30

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


31

Our Second Family


32

Our Third Family


33

...”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

34

Thank You For Allowing Me To Share Our Story!

In Loving Memory of Jerod

35

36

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

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


Reality for Patients and Caregivers

6 Fe

b 20

12

Coordinate PrepareDecide

Evaluate Communicate

PartnerX

Images provided by K. Sheridan


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


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


Missing Data: Symptom Severity

Image source: The MITRE Corporation


Missing Data: Compliance

Image source: The MITRE Corporation


Enabling Integration of Data


Concise, Meaningful Visualization

Image sources: The MITRE Corporation


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”.


Making It Easy, Fast and Patient-Centric

Image sources: The MITRE Corporation


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


Shared Understanding

…the inclusion of patients and families as central members of the health care team and active partnerships with providers and provider organizations.


Patient Engagement And Patient-Generated Data

National e-Health Collaborative. “Patient Engagement Framework.” http://www.nationalehealth.org/stages-patient-engagement-framework


http://www.nationalehealth.org/stages-patient-engagement-framework

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

Empowering Patients Outside the Doctor’s Office

Compassionate, Informed Care

Team

Well-informed, Engaged Patient

Partnership

BEST CARE

Improved health outcomes at lower cost


1 moving outside the boundaries of the doctor's office “the impossible dream” sherri t....

Documents