UCLA Advanced Heart Failure –
A model of creating systems
alignment between personal and
population health
Mario C Deng MD FACC FESC
Professor of Medicine
Director , UCLA Advanced Heart Failure Program
Ronald Reagan Medical Center
Division of Cardiology
Department of Medicine
David Geffen School of Medicine at UCLA
University of California, Los Angeles
USA
modern medicine & immortality
New York Times Magazine Jan 30, 2000
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
UCI 1/20/15 Case Summary


67 yr old gentleman with HOCM, idiopathic hypereosinophilia,
AAA s/p EVAR presenting with worsening SOB, pulmonary
congestion (DOE, fatigue, PND), new onset heart failure with
preserved EF, and newly found mass LV thrombus with b/l
pulmonary necrotizing masses
DDx: Restrictive cardiomyopathy secondary to
–
–
–
–
–
–
–

Sarcoidosis
Amyloidosis
Hypereosinophilic eosinophilia (leukemia type)
Endomyocardial fibrosis
Loeffler’s endocarditis
Systemic sclerosis
Carcinoid syndrome
Goals of care meeting with patient regarding dismal prognosis and
patient code status changed to DNR/DNI and then comfort care
Dalia Hawwass, UCI IM PGY-2
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
perfect health care storm ingredients
•medical education culture: the more meticulous the better
•physician peer culture: the more aggressive the better
•fee-for-service: do more earn more
•physician marketing:
•medical malpractice laws:
•US-patients: better high-tech than high touch
• consumer marketing:
•third-party payments:
•> change physician training and culture
•> Curb aggressive marketing to physicians and patients
•> payment : bundling, capitation, performance-/value-based
Emanuel E, Fuchs V. JAMA 2008;299:2789
Team
Patient
asynchrony
Team
phenome
metabolome
proteome
transcriptome
genome
Patient
Personhood & Body Challenges
doctor
patient
phenome
phenome
metabolome metabolome
proteome
proteome
transcriptome transcriptome
genome
genome
•Genes versus Environment
•Body versus Mind
•Biomedical versus Psychosocial
•Medicine versus Psychiatry
•Curative versus Palliative
•Immortality versus Mortality
•Objective versus subjective data
•Theory versus Practice
•Traditional versus Complementary
•Reason versus Emotion
•Structure versus Gestalt
•Movement versus Perception
•Individuum versus Society
•Autonomy versus Relationship
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
Heart Failure Statistics Overview
• 6 million patients in US, 3 million with EF<40%, the most
common diagnosis for acute hospitalization
• Hospitalization costs account for 50% of total health care
costs in U.S., implying that better management of heart
failure to reduce hospitalization rates will have a major
economic impact
• Heart failure is a major focus of basic, translational,
clinical and health services research
• A historic opportunity for academic medical centers to
integrate treatment advances into a comprehensive
patient-centered heart failure management program
heart failure epidemiology
•Greater Los Angeles area >10,000,000
•heart failure > 100,000
•advanced heart failure (ADHF) >10,000
•prognosis similar to cancer
•cardiac repair treatment options incl BVPM, ICD >10,000-100,000
•palliative therapy >9,000-10,000
•lifetime mechanical circulatory support (destMCSD) >1,000
•heart transplantation (HTx) >100-200
•Total Artifical Heart (TAH) >100-200
UCLA AdHF Vision
We propose an integrated & accountable AHF-model to reconcile three goals:
•
to offer every heart failure patient the best survival and QOL
•
to offer the entire heart failure population the best survival and QOL
•
to achieve these goals with the most cost-effective concept.
We hope that by the end of 2015, we have developed a comprehensive regional advanced heart
failure model that
•
empowers patients to make informed personal choices
•
connects practitioners and centers in a care continuum
•
provides world class heart transplantation medicine
•
expands state-of-the art lifetime assist heart pump therapy
•
integrates quality-of-life options during the entire course of illness
•
unites all of the region’s providers to create an accountable care model
This bold strategy vision will only become reality if we
•
act as a multidisciplinary team
If we succeed, we will simultaneously
•
create a powerful translational research infrastructure
•
teach a successful professional development paradigm, and
•
advance a concept of science, technology, and humanism in one framework.
Inpatient Hospital:
Optimal Medical Therapy
Mechanical Support
Heart Transplantation
Outpatient Clinic:
Cardiomyopathy Center
Mechanical Support Center
Heart Transplant Center
UCLA transfer contacts
The on-call Cardiologist can be reached by calling the UCLA
Transfer Center 310-825-0909 or page operator at 310-794-6699 and
then asking to page the on-call Advanced Heart Failure physician –
pager number 34243.
• Reza Ardehali, MD, cell 650 787 9906 or pager 28639
• Arnold Baas, MD, cell 310-430-6172 or pager 23888
• Martin Cadeiras, MD, cell 205-202 5542 or pager 28627
• Daniel Cruz, MD, cell 310-625-6873 or pager 18103
• Mario Deng, MD, cell 646-229-3429 or pager 27937
• Eugene DePasquale, MD, cell 917-658-9086 or pager 29251
• Gregg Fonarow, MD, cell 310-948-2822 or pager 10678
• Ali Nsair, MD, cell 323-877-1453 or pager 27129
DHHS - Heart Failure 2012
Medical Center
30-Day Risk Standardized
Mortality Rates
30-Day Risk Standardized
Rehospitalization Rates
Ronald Reagan-UCLA Medical Center
8.9%*
23.8%
Santa Monica-UCLA Medical Center
9.0%*
24.3%
Cleveland Clinic Medical Center
9.2%*
27.3%†
Mayo Clinic (St Mary’s Hospital)
11.2%
26.2%
Duke University Medical Center
12.2%
23.9%
John Hopkins Medical Center
9.6%
25.6%
Massachusetts General Hospital
9.6%*
25.2%
New York Presbyterian Hospital
8.0%*
27.3%†
Stanford Medical Center
11.1%
24.0%
UCSF Medical Center
10.7%
25.2%
UCSD Medical Center
9.9%
26.5%
UC Davis Medical Center
9.5%
24.3%
UC Irvine Medical Center
11.8%
24.6%
Hospitals Nationwide (N=4821)
11.6%
24.7%
current AdHF transition
Number of HTx
120
CHF
100
80
60
40
Tx
* Number of HTx correlates with volume
programs and carries a residual factor and
leads to bigger pool of patients in other
areas of cardiology and heart disease
20
Transition
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015
Past Transplants
Future Projection
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
MicroBiome
EC
Senescence
miRNA
Heart Failure
PBMC
Neuro- EndocrineImmune Activation
Surface
Receptors
DNA
mRNA
Methylation
Metabolome
Organ
Dysfunction
Protein
Systemic Inflammatory
&
Compensatory AntiInflammatory Response
Soluble
Mediators
PLT
Figure 1: Theoretical study framework (active study components in DARK GREY). Heart failure (HF)
is linked to organ dysfunction (OD) via Neuo- Endocrine- Immune Activation mediated by complex
interactions between peripheral blood mononuclear cells (PBMC), endothelial cells (EC) and platelets
(PLT). Systemic inflammatory responses (SIRS) and Compensatory- AntiInflammatory Responses (CARS)
perpetuate OD and progression of HF.
disease burden, resources & research
Traditional Heart Failure Management:
Phase 4
Phase 3 Phase 1/2
The UCLA HEAL-MY-HEART Strategy:
Mild
Moderate
Advanced
rejection is a systemic response
Mobilized
dendritic cells
carry antigen to
lymph nodes to
prime high affinity
naïve T cells
Rejection-associated
inflammation
• Endothelial
activation
• Mobilization of
dendritic cells
•Expression of
inflammatory
mediators (e.g. IL-6)
endomyocardial biopsy
mild
severe
status quo monitoring






invasive & complication-prone
late-stage cellular rejection diagnosis
insensitive for humoral rejection
significant variability
no insight into molecular mechanisms
resource-intense
future monitoring







highly sensitive for rejection
strong negative predictive value
positive test >need for further workup
non-invasive
easily repeatable on outpatient basis
low complication rate
decreased costs
human peripheral blood
Plasma
Cells
Erythrocytes
Leukocytes
Platelets
Granulocytes
Eosinphils
Basophils
Neutrophils
T
CD4 (helper)
Mononuclear cells
Lymphocytes
B
Monocytes
NK (natural
killer cells)
CD8 (cytotoxic)
Plasma cells (antibody
production)
macrophages
peripheral blood mononuclear cells
Peripheral Blood Mononuclear Cells (PBMCs)
PBMC
Lymphocytes
Monocytes
• T cells
CPT Tube
• B cells
• NK cells
RBC Development
+ Platelets and residual granulocytes
and erythrocytes
Reticulocytes
gene expression technologies
DNA microarrays
quantitative real-time PCR
molecular algorithm
0
+ 1 x Metagene
1
– 2 x Metagene 2
– 3 x Metagene 3
4 x Gene 1
+ 5 x Gene 2
+ 6 x Gene 3
+ 7 x Gene 4
Deng/Eisen/Mehra et al. Am J Transplant 2006;6:150
AlloMap classifier
Weighted sum is mapped to range (0, 40)
CARGO clinical study summary
 Candidate gene selection
I
Discovery
~2 years
(microarray)
 Database / literature mining
 252 candidate genes
Development
~1 year
(PCR)
 Real-time PCR
Clinical
Validation
~1 year
(Molecular Test)

 Prospective, blinded, statisticallypowered (n = 270)
 Additional samples tested to further
define performance (n > 1000)
Hypothesis
– Gene expression profiling of peripheral blood
mononuclear cells can discriminate ISHLT grade 0
rejection (quiescence) from moderate/severe
(ISHLT grade ≥ 3A) rejection
 20-gene algorithm to distinguish
rejection from quiescence
(AlloMap molecular testing)
 Validation
III
Overview
– Cardiac Allograft Rejection Gene expression
Observational study = “CARGO”
– 8 center, 4-year observational study initiated in
2001 (22% of US HTx).
– 629 patients, 4917 post-transplant encounters
 285 Leukocyte microarray
 Algorithm development
II


Design & Result
Prospective, blinded validation study of 20 gene
algorithm demonstrated ability to distinguish Grade
3A rejection from quiescence
Deng/Eisen/Mehra et al. Am J Transplant 2006;6:150
what is the AlloMap testing process?

A sample for AlloMap testing can be obtained from a routine blood
draw. The blood is then processed and shipped to the XDx
Reference Laboratory for testing.
 The results of your
AlloMap test are faxed
to your doctor within 12 days.
 Your doctor notifies
you of your test results.
Invasive Monitoring Attenuation through Gene Expression

Study Design • Hypothesis
–Prospective
–Multi-center
–Non-blinded
–Randomized
–Non-inferiority

IMAGE
Patients
–6 months -5 years
post-Tx
To determine whether the monitoring of acute
rejection using GEP is not inferior compared to
the use of the EMB with respect to the event-free
survival
 Decrease in LV function, defined as LVEF
change ≥ 25% compared with the baseline,
or enrollment value, as measured by
echocardiography
 Development of clinically overt rejection
(heart failure, hemodynamic compromise)
 Death from any cause
–≥ 18 years old
–Stable outpatients
Pham/Deng/Kfoury et al. J Heart Lung Transplant 2007;26:808
Pham MX et al. N Engl J Med 2010;362:1890
IMAGE primary endpoint
FIGURE 2: PANEL A - Combined Primary End Point
Patients with Primary Event (%)
100
20
2-year event rate =
15.3 (EMB)
90
15
80
EMB
GEP
10
70
60
2-year event rate =
14.5 (GEP)
5
50
0
40
200
100
0
30
300
400
600
500
700
800
Days
20
10
Log Rank p-value: 0.863
0
0
No at Risk
No. at Risk
305
EMB
297
GEP
100
200
300
400
500
600
700
137
133
137
130
800
Days Since Randomization
278
273
252
252
221
207
181
177
160
162
73
36
2-year incidence of the composite primary outcome was similar between gene profiling
2: PANEL B - Death
andFIGURE
biopsy.
-5
Pham MX et al. N Engl J Med 2010;362:1890
1.0
0
100
No at Risk
No. at Risk
EMB
305
GEP
297
200
300
400
500
600
700
800
Days Since Randomization
IMAGE overall survival
278
273
252
252
221
207
181
177
FIGURE 2: PANEL B - Death
160
162
137
133
137
130
73
36
-5
1.0
Log Rank p-value: 0.819
0.9
1.00
Survival Probability
0.8
0.7
0.95
0.6
0.90
0.5
EMB
GEP
0.85
0.4
0.3
0.80
0.2
0
100
200
300
0.1
400
500
600
700
800
Days
0.0
0
100
No at Risk
No. at Risk
EMB
305
GEP
297
290
284
200
300
400
500
Days Since Randomization
259
284
231
284
215
209
176
177
600
700
154
147
154
144
800
147
144
Overall survival in the study was similar regardless of surveillance method
Pham MX et al. N Engl J Med 2010;362:1890
Biopsy N=292
1249
GEP
409
100
N=287
The frequency of biopsies
was reduced from 3.0
biopies/patient year of
follow-up in the EMB arm
to 0.5 in the GEP arm (p <
0.001)
50
The majority (87%) of
0
Number of Patients
150
IMAGE biopsy reduction
0
1
2
3
4
5
No. of biopsies per year
>=6
patients in the GEP group
had 2 or fewer biopsies per
patient year and 50% did
not require a biopsy during
study
IMAGE patient satisfaction
Pham MX et al. N Engl J Med 2010;362:1890
noninvasive monitoring in Europe
US clinical implementation
•> 35000 AlloMap tests
•> 9,000 patients
•> 40 centers with clinical protocols
systems biology
quiescence
clinical
pathophysiology
phenome
recipient
donor
pathology
recovery
metabolome
proteome
transcriptome
genome
molecular
immunology
rejection
clinical
pathophysiology
phenome
recipient
donor
pathology
molecular
immunology
time after tx
death
metabolome
proteome
transcriptome
genome
diagnostic/
predictive
test
Deng MC, Cadeiras M, Reed E. Curr Opin Organ Transplant 2013;18:569
multilevel longitudinal phenotyping
recovery
health
phenome
early
disease
(…) ome
late disease
(...) ome
proteome
transcriptome
genome
death
Time
HTx/MCS Evaluation
Multidomain HF Risk Prediction
PHASE 1
Surgery cohort
PHASE 0
Run-in cohort
PHASE 2
MOD-study cohort
PHASE 3
Follow-up cohort
CTRL
surgery
MOD
•death •death
•survivor•survivor
HTx/MCS-Eval
NoMOD
NoMOD
Clinical sample
baseline + 30d
baseline
d-1
d1
d3
d5
d8 qwk + SOFA-score d30±3
driven
1y±30d
Advanced Heart Failure Research Team
Principal Investigators
Peipei Ping Ph.D.
Mario Deng M.D.
Genomics
Elaine Reed Ph.D.
Proteomics
Immunogenetics
Co-investigators
Galyna Bondar
Ph.D.
Martin Cadeiras
M.D.
Nick Wisniewski
Ph.D.
Gene Expression
Lab
Clinical &
Translational HF
Data
Science
X’avia Chan
Ph.D
David Liem
M.D. Ph.D.
Proteomics, Metabolomics and
mitochondrial function
Yael Korin
Ph.D.
Flow
Cytometry
Murray Kwon Joanna Schaenman M.D. Jennifer Zhang
M.D. MBA.
Ph.D
Ph.D.
Infectious Ds
Surgical &
Translational HF immunology
Tx
immunology
Research Students and Research Assistants
Maral
Eleanor
Jay
Saad
Charlotte
Kevin
Jetrina
Victoria
Tiffany
Fadi
UC-BRAID general organization
UCD
Tong/
Flores
UCI
Lombardo
UCLA
Deng/
Cadeiras
Shemin/
Kwon
UCSD
Adler/
Copeland
UCSF
De Marco/
Wieselthaler
CTSI
UC-BRAID
Aim 1: Multilevel Phenotype Definition
Aim 2: Mechanistic Exploration
Aim 3: Prognostic Model Development
Implementing
Recruiting
TRANSLATION
Patient Clinical Data
PBMC GeneExpression Data
PBMC ImmunePhenotype Data
PBMC Mitochondrial Proteome Data
Consenting
Analyzing
Sampling
Acknowledgements & Support
 Douglas Bell M.D.
 Steven Dubinett M.D.
 Michael Palazzolo M.D. Ph.D.
Funding:
 NIH R21 Multidimensional biomarkers (MCD, MC)
 NIH R01 AI042819 (ER)
 NIH R01 CV-Proteomics (PPP, MCD)
 NIH R01 Systems Genetics of HF (JW, MCD)
 AHA Grant in Aid (MC)
 Juan Mulder Philanthropy Fund (MCD)
paradigm ... change?
Hey dudes what‘s up with the hairdo?
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
INDICATIONS:
Mr. More is a xx-year-old gentleman
with a history of myocardial
infarction, who had previously
undergone a HeartMate II and
developed a significant pericardial
effusion.
He
underwent
reexploration through thoracotomies
which
was
performed
earlier
yesterday. The patient had been
stable and was considered for
extubation where he had a significant
arrhythmia with low flows. Chest
compression was begun and despite
manipulation and increasing inotrope
his hemodynamics could not be
reversed. I was called and I came into
the hospital for initiation of the
AHF algorithm
team
patien
assess
t
end-of-life
ment
ye
no
situation?
com
unsuccessful
s urg
fort
ye
no
hosp
chronic
recompensation?
Deng
MC
et
al.
pump
ische
arrhyth
care
neurohorm
ent
s
ice IC
failure?
mia?
mias?
blockade
Htx Curr Opin
U/ Cardiol
& evaluation
potential
Htx
or
for
MC 2002;17:137
chronic MCSD
Team
Patient
Death as part of life
A patient is very sick. Mr. More. He is sedated. Dr. V gives an almost
imperceptible side shake to his head, moving his face in a grimace
his chin pushed up the lips tighten their corners pulled down
expressing something like “how sad” or “I cannot believe it”. We
approach the room; the glass doors are completely opened. Five
health professional attendings are inside the room, others are
coming and going. Some are discussing, looking at the patient,
looking at the monitors, others are intervening on the patient with
cuts, tubes sucking the blood, large clamps attached to his leg. It is
an emergency …
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
It is an emergency yet the voices, the movements rather than urgent
are precise efficient coordinated and all in low volume. It is as if all
that really counts is concentrated in one small space, in a gaze, in a
movement. There are questions on how it happened I see it in the
tense focused faces of the intensive care attending doctors, and
fellows, one just walked in the room with the large dark circles
under the wide opened almost round, bloodshot eyes; I see it in the
silence of the nurses. They are worried they are astounded they are
mad they are sad; it is grave but the volume low….
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
The patient is intubated. Naked on the hospital bed. Catheters are
cutting out of his flesh from almost each part of the body: legs arms
belly chest mouth. The intensive care bedside nurse and the
cardiothoracic surgeon fellow, wearing disposable yellow coats and
blue thick gloves, are performing a surgical procedure, inserting
and moving tubes in the legs, in the groin. Their movements are
precise, efficient, coordinated; they are not hectic; they must focus
on stabilizing the patient. They are. They are focused on the organs
failing, on blood clotting.The patient is intubated, blood stains his
naked body. Blood spatters over the nurse’s and surgeon fellow’s
disposable yellow coats, on their clogs, on the floor. …
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
All the attention focused on the bed scene: the surgeon and nurse
working incessantly on the patient’s body.Health professionals
entering the room wear the yellow coat and the blue gloves.
They stop few steps away from the scene forming a semicircle
around the patient, the nurse the surgeon fellow. They look from
monitors to patient, to surgeon to nurse and back to monitors. They
exchange brief comments, few nod; indicate the blood collected in a
transparent container, trends on the monitors and the patient’s inert
body.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Further out near the entrance another group of health professionals
are watching the entire scene. They are closer to me and I can hear
them discussing the case gently. What has happened? How exactly?
What time did it start? Next to me, outside the room in another
semicircle formed around its entrance another group. They also
exchange few comments, few questions about the family, when to
talk to them, what to say, “He was doing so well yesterday.” ….
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
I can picture being at the outer circle
of a giant Spiral. Closer to the
patient: “the here and now”:
stabilizing the patient, now. As the
spiral’s sides open away from the
bed, the space incorporates larger
dimensions; the time scale opens to a
trajectory: how the patient is
responding since the last hour,
farther away on a par with the
distance from the patient’s bed the
time scale expands to reach twenty
four hours.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
The last, in furthermost position
from the patient’s bed in the
concentric semicircles of heath
professionals, as to incorporate all,
the entire life trajectory including the
patients’ future and his the family.
Here I can feel their worries their
bewilderment their sadness …
…their pain.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
The impression is of a place where blood, breathing, suffering,
dying, living have their own space, each with multiple layers of
being in existence the gene, the molecule, the tissue, the organ, the
person level, all have their own dignity.
In the CTICU, the organized distribution in different discourse
levels around the patients’ bed allows focusing on the organ, on the
recent medical course, on life and death, on the person level.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
“Hello Mrs. More”
“Hello Dr. D.”
“You have my contact, my card
with all the numbers, the
cellphone, pager. You get in
touch with me any time, you
know “
She is expecting news. She leaves
the chair in the small private
waiting room she has been
sitting in since last night
Dr D takes her hand and keeps it
until she sits again. He sits in the
only empty chair left, just in
front of her corner chair. In the
waiting room other six people
are sitting, family members.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Silence
Dr. D: “The last 12 hours were
not good “
Mrs. More nods
Dr. D: “Over night he had a fast
heart beat and was also bleeding
so that the heart function is not
the way it should be…. it was
unexpected ”
Mrs. More nods
Dr. D looks at the rest of the
family and looks back to Mrs.
More
Silence
Dr. D waits until she nods.
Dr D continues
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Dr. D: “that is why he needed
the short assist heart pump and
now … with all that he is still
bleeding”
Silence
Dr D: “That is not a good
situation”
Silence
….The bleeding is having effects
on the liver, on the kidney.
Silence
Mrs. More looks at him.
Death as part of life
Dr. D talks in short simple
sentences; slowly, as if the words
are originating from the silence
in the room, his long pauses
making it dense.
Dr. D: continues looking at
her.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Dr. D. “ how was the
conversation last night with Dr.
K?
Mrs. More recounts the meeting
…. He could get worse but he
could recover…
Death as part of life
Mrs. More recounts the meeting
with the surgeon during the
early morning hours after he
was called in for an emergency
surgery implanted the small
short time pump implantation in
Mr. More’s chest.
From this Dr D thinks that she
knows there are uncertainties. It
could go either way. She has
hope.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Dr. D: “after he had fast heart
beat and the bleeding
the heart function is not the way
it should be .
Dr. D does not remove his gaze
from her and with the same slow
pace he starts revisiting what
happened.
Dr D: It is very unfortunate
The same occurrences, but now
he introduces stronger words in
his sentences: what before was
“unexpected” becomes “very
unfortunate” and I understand.
He wanted to know where she
was in the understanding and
accepting mindset…
Mrs More nods
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Mrs More: “What do you think of
the situation?”
Dr. D. revisits the medical situation
adding more details
Dr D:
“So …”
[8 sec ].
Mrs More nods
She had hope. Now he is moving
her to prepare for death.
He does it slowly with much care
waiting for her to allow him to
continue, all these silences,
pauses.
Dr D: “While all that is going on
now is continuing ” [3 sec]
Chances for a good outcome are
diminishing … ” [20 sec ]
The very long pause is
communicating as much as the
words…
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Mrs More turns to the others
family members and asks if they
have any thing to ask … No
Dr. D. gives her his card again:
“Here are all my contact
numbers including the cellphone.
You can call me anytime, we will
be back but at any time you want
to update …
This is an on going emergency
situation”
He does not move, he is sitting in
front of her. No sign of leaving
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Dr. D: What was your
impressiom of Mr More’s health
during the last days?
Mrs More is not sure; he was not
doing that well something was a
little off. She could not say what
precisely, he looked a little off.
Mrs. More and Dr. D. talk about
Mr. More’s entire medical course
till the previous night then Dr. D
continues the narrative on what
happened during the past hours,
again, now adding more details.
He stops.
Dr. D: it is unfortunate
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
Mrs More: “What is your
suggestion?”
Dr. D. “I want you to know this
[3 secs]
“You are his decision maker”
Dr D’s gaze always on her. Mrs.
More starts crying silently.
Dr D: “ I want you and the
family to be together and talk”
The doctor is leaning toward her
as much as she is also toward
him
All the others are silent.
The doctor continues, it is time
to tell, she is ready to hear: there
is a possibility that somebody
from the team will come out
sometimes later to ask her what
is her decision
She is silently crying. Not the
only one.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
Team
Patient
Death as part of life
All in the room including us listening in at the door are
brought to the same point: death is imminent. Death as part
of life.
The doctor stands up and embraces Mrs. More.
We leave.
The encounter is over.
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
recommendations - summary
1. Government health insurers and care delivery programs as well as private
health insurers should cover …
2. Professional societies and other organizations that establish quality
standards should develop standards for clinician-patient communication…
3. Educational institutions, credentialing bodies, accrediting boards, state
regulatory agencies, and health care delivery organizations should establish
the appropriate training, certification, and/or licensure requirements…
4. Federal, state, and private insurance and health care delivery programs
should integrate the financing of medical and social services…
5. Civic leaders, public health and other governmental agencies, communitybased organizations, faith-based organizations, consumer groups, health
care delivery organizations, payers, employers, and professional societies
should engage their constituents…
Institute of Medicine. Dying in America. Nat Acad Press. Washington 2014
UCLA Innovation-Transformation
2/13/2013
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
Research: RelationalAct Model
Clinical
Team
Patient
Clinical
Research
Team
Research
Stage 1 Participant Interviews
Stage 2 Encounter Recording and Analysis
Stage 3 Co-Generation of Dialogue
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
RelationalAct
Healthcare
Professional
RELATIONALACT
•Dyadic Nature of Encounter
•Iteration of Encounter
•Subjectivism of Perspective
Patient
•Mystery of the Other
•Explanation of Process
•Authenticity of Decision
•Relational Presence
preparation
•Curative versus Palliative
•Genes versus Environment
•Body versus Mind
•Biomedical versus Psychosocial
•Medicine versus Psychiatry
initiation
continuation
conclusion
•Immortality versus Mortality
•Objective versus subjective data
•Individuum versus Society
•Autonomy versus Relationship
Raia F & Deng M. Relational Medicine. World Scientific/Imperial College Press 2014
..
Patient
as average of
population
Healthcare
Professional
..
Patient
as assembly of
molecules
Healthcare
Professional
..
Healthcare
Professional
RELATIONALACT
•Relational Presence
•Dyadic Nature of Encounter
•Iteration of Encounter
•Subjectivism of Perspective
•Mystery of the Other
•Explanation of Process
•Empowerment to Assume Agency
Patient as
Person with
Organs, Cells,
Proteins, Genes
Figure 1A: The EBMparadigm tends to abstract
from
features
of
the
individual person that are
not part of the EMB-cohort
description.
Figure 1B: The Molecular
Medicine paradigm tends to
abstract from features of the
individual person that are
not part of the molecular
level.
Figure 1C: RelationalAct
(RA) encounter between
healthcare professional and
patient:
recurring
encounter aspects
and
encounter phases (details
see Raia & Deng 2014).
preparation
initiation
continuation
conclusion
Raia F & Deng M. Personalized Medicine 2014 (in press)
outline
•US Health System Challenges & Transformation
•UCLA Integrated Advanced Heart Failure Program
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
•Alignment #2: Personhood: Is Dying Part of Living?
•Alignment #3: Personalized Medicine for the Population
•Perspectives
UCLA AdHF Vision 2011-2015
We propose an integrated & accountable AHF-model to reconcile three goals:
•
to offer every heart failure patient the best survival and QOL
•
to offer the entire heart failure population the best survival and QOL
•
to achieve these goals with the most cost-effective concept.
We hope that by the end of 2015, we have developed a comprehensive regional advanced heart
failure model that
•
empowers patients to make informed personal choices
•
connects practitioners and centers in a care continuum
•
provides world class heart transplantation medicine
•
expands state-of-the art lifetime assist heart pump therapy
•
integrates quality-of-life options during the entire course of illness
•
unites all of the region’s providers to create an accountable care model
This bold strategy vision will only become reality if we
•
act as a multidisciplinary team
If we succeed, we will simultaneously
•
create a powerful translational research infrastructure
•
teach a successful professional practice paradigm, and
•
advance a concept of science, technology, and humanism in one framework.
•Alignment #1: Are Genes, Cells, Organs Part of the Person?
UCLA AdHF Vision 2011-2015
We propose an integrated & accountable AHF-model to reconcile three goals:
•
to offer every heart failure patient the best survival and QOL
•
to offer the entire heart failure population the best survival and QOL
•
to achieve these goals with the most cost-effective concept.
We hope that by the end of 2015, we have developed a comprehensive regional advanced heart
failure model that
•
empowers patients to make informed personal choices
•
connects practitioners and centers in a care continuum
•
provides world class heart transplantation medicine
•
expands state-of-the art lifetime assist heart pump therapy
•
integrates quality-of-life options during the entire course of illness
•
unites all of the region’s providers to create an accountable care model
This bold strategy vision will only become reality if we
•
act as a multidisciplinary team
If we succeed, we will simultaneously
•
create a powerful translational research infrastructure
•
teach a successful professional practice paradigm, and
•
advance a concept of science, technology, and humanism in one framework.
•Alignment #2: Personhood: Is Dying Part of Living?
UCLA AdHF Vision 2011-2015
We propose an integrated & accountable AHF-model to reconcile three goals:
•
to offer every heart failure patient the best survival and QOL
•
to offer the entire heart failure population the best survival and QOL
•
to achieve these goals with the most cost-effective concept.
We hope that by the end of 2015, we have developed a comprehensive regional advanced heart
failure model that
•
empowers patients to make informed personal choices
•
connects practitioners and centers in a care continuum
•
provides world class heart transplantation medicine
•
expands state-of-the art lifetime assist heart pump therapy
•
integrates quality-of-life options during the entire course of illness
•
unites all of the region’s providers to create an accountable care model
This bold strategy vision will only become reality if we
•
act as a multidisciplinary team
If we succeed, we will simultaneously
•
create a powerful translational research infrastructure
•
teach a successful professional practice paradigm, and
•
advance a concept of science, technology, and humanism in one framework.
•Alignment #3: Personalized Medicine for the Population
UCLA AdHF Vision 2011-2015
We propose an integrated & accountable AHF-model to reconcile three goals:
•
to offer every heart failure patient the best survival and QOL
•
to offer the entire heart failure population the best survival and QOL
•
to achieve these goals with the most cost-effective concept.
We hope that by the end of 2015, we have developed a comprehensive regional advanced heart
failure model that
•
empowers patients to make informed personal choices
•
connects practitioners and centers in a care continuum
•
provides world class heart transplantation medicine
•
expands state-of-the art lifetime assist heart pump therapy
•
integrates quality-of-life options during the entire course of illness
•
unites all of the region’s providers to create an accountable care model
•Alignment
Cells,
Organs
This
bold strategy #1:
visionAre
will Genes,
only become
reality
if we Part of the Person?
• •Alignment #2:
act asPersonhood:
a multidisciplinary
team
Is Dying
Part of Living?
If we succeed, we will simultaneously
•Alignment #3:
Personalized Medicine for the Population
•
create a powerful translational research infrastructure
•
teach a successful professional practice paradigm, and
•
advance a concept of science, technology, and humanism in one framework.
2013 UCLA Integrative Heart Failure
Update 2015 & Focus on Organ Transplantation
Saturday, May 23, 2015
UCLA Medicine Culture - Teamwork