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�TAB 2
�MRY
10
'93
10:34
FROM flflER SOC
LflU-nED
PAGE . 002
Privacy and Security of Health Care Infonnation
A complex health care information
infrastructure will
exist
under a reformed health care system. The success of tbe new system
will
depend,
in
trustworthiness
of
part,
the
on
the
accuracy.
information,
and
the
correctness
privacy
i n d i v i d u a l s to control the d i s c l o s u r e of personal
and
r i g h t s of
information.
A l l p a r t i c i p a n t s in the new system (consumers and p a t i e n t s , health
plans, health a l l i a n c e s , and the national health board) w i l l need
a c c e s s to high q u a l i t y information for informed d e c i s i o n making. At
the same time, everyone must have confidence t h a t information of a
p r i v a t e nature i s adequately protected.
American s o c i e t y places a high value on
autonomous decision-making,
and
the
individual rights,
protection
of
the
private
sphere from governmental or other i n t r u s i o n . Concerns about p r i v a c y
transcend
the
health care s e t t i n g . Americans b e l i e v e t h a t
p r i v a c y r i g h t s as consumers are not adequately protected. I n a
their
1991
H a r r i s p o l l on consumer privacy conducted f o r Equifax, I n c . , 79% of
the respondents indicated t h e i r concern about t h r e a t s to p r i v a c y .
Nearly three-quarters (71%) believed that consumers have l o s t a l l
c o n t r o l over how personal information about them i s c i r c u l a t e d and
1
used. P u b l i c fear and d i s t r u s t of both technology and
bureaucracy
i s l i k e l y to increase as c o l l e c t i o n , storage, and dissemination of
information
Health
become automated.
care
information
is
1
perhaps
the
most
intimate,
�MRY 10
'93
10:34
FROM flMER SOC LfiU-MED
PRGE.003
President's Health Care Reform Task Force
Privacy and Security
of Health Care Information
Policy Paper
Prepared
by
Working Group 10 - Information Systems
Working Group 17 - E t h i c a l Foundations
D r a f t 7/S
May 10, 1993
�MRY 10 '93 10:35
FROM RMER SOC LRU-MED
p e r s o n a l , and s e n s i t i v e
i n d i v i d u a l . As the U.S.
and
PRGE.004
of any information maintained
about an
health care system grows i n s i z e , scope,
i n t e g r a t i o n , the v u l n e r a b i l i t y of t h a t information w i l l
also
increase.
T h i s chapter e x p l a i n s the privacy and s e c u r i t y o b j e c t i v e s f o r
the c o l l e c t i o n , storage, and use of health care information i n the
new system and the means to a t t a i n those o b j e c t i v e s . The goals are
to ensure: (1) the i n t e g r i t y of health data so t h a t information i s
a c c u r a t e , c o r r e c t and trustworthy —
is
critical
to q u a l i t y
the i n t e g r i t y of information
p a t i e n t c a r e , assessment
of s e r v i c e s ,
r e s e a r c h , and p u b l i c health; (2) the a v a i l a b t l j , t y of health data so
t h a t authorized persons who need the information f o r l e g i t i m a t e
health
purposes
have ready
access t o the data
—
i f clinical
information i s not r e a d i l y a v a i l a b l e to health care p r o v i d e r s , the
best i n t e r e s t s of p a t i e n t s may be s i g n i f i c a n t l y compromised; and
(3)
the privacy, of p a t i e n t s so t h a t they
personal
information
can be assured
remains p r i v a t e and w i l l
that
not be d i s c l o s e d
without t h e i r knowledge and permission.
The goals of i n t e g r i t y , a v a i l a b i l i t y , and p r i v a c y can only be
achieved
by e s t a b l i s h i n g
an appropriate
privacy
and s e c u r i t y
framework. The terms p r i v a c y , c o n f i d e n t i a l i t y , and s e c u r i t y a r e
used i n the following ways i n t h i s chapter. Pr.i.vacy, although a
highly complex concept,
restricted
i s defined a s a c o n d i t i o n of l i m i t e d or
accessibility
to some aspect
of the person.
2
This
chapter focuses on informational p r i v a c y so t h a t information about
a
person
i s beyond
the range
of
others
without
specific
�MAY
10
'93
10:35
FROM fiMER SOC
LPlU-MED
PRGE . 005
I
authorization.
3
Informational privacy covers a person's h e a l t h care
records (whether automated or manual) as w e l l as h e a l t h information
revealed
i n medical
CSI)fi.deo.tA.#li.1ty.
i s
testing
closely
such
related
as
genetic
to
or
HIV
testing.
informational
privacy.
C o n f i d e n t i a l i t y i s defined as information obtained i n the course of
a h e a l t h care p r o f e s s i o n a l / p a t i e n t r e l a t i o n s h i p , such t h a t by i t s
very nature i t should not be revealed to others unless the person
i s f i r s t made aware and consents for p a r t i c u l a r purposes i n advance
of
i t s disclosure.
Security refers
to
p r o t e c t i n g data
systems
a g a i n s t unwarranted d i s c l o s u r e , modification, or d e s t r u c t i o n and to
safeguarding the system
itself.
T h i s chapter f i r s t examines information i n f r a s t r u c t u r e l i k e l y
to
emerge
in
the
new
health care
system.
This
includes
the
continued development of automated systems and the establishment of
a unique i d e n t i f i e r necessary for access to health c a r e . Second, a
b r i e f examination of current law on p r i v a c y and c o n f i d e n t i a l i t y i s
provided
to shoe the
wide v a r i a b i l i t y
and
inadequacy
of
legal
safeguards. T h i r d , the e t h i c a l foundations for safeguarding p r i v a c y
are
explored so t h a t changes i n law and p o l i c y are c o n s i s t e n t with
sound e t h i c a l v a l u e s . Fourth, a s e t of f a i r information p r a c t i c e s
are
presented t h a t w i l l guide a l l p a r t i c i p a n t s i n the new system i n
the c o l l e c t i o n
and
use of c o n f i d e n t i a l
health information
systems,
information. F i f t h ,
particularly
the
security
of
automated
systems,
i s examined. F i n a l l y , the chapter s e t s out a s e r i e s of
a c t i o n s necessary for ensuring the i n t e g r i t y , a v a i l a b i l i t y ,
confidentiality
of
health records. The
most important
of
1
a" ^
these
�MAY 10 '93 10:36
actions
panel
FROM AMER SOC LAU-MED
PAGE.006
i s t h e e s t a b l i s h m e n t o f a data p r o t e c t i o n and s e c u r i t y
( 5 ) as p a r t
of the National
Health
Board t o oversee and
manage p r i v a c y and s e c u r i t y i n t h e new system.
Health Information i n a New Health Care System
The collection and transmission of vast amounts of health
information in automated form will occur with or without reform of
the health care system. The new system will also create a need for
additional information for monitoring patient care and assessing
system performance. This will require the sharing of a large volume
of detailed health information among system players, including the
National Health Board, health alliances, accountable health plans,
and public health departments. The health care infrastructure that
will exist under the new system will have the following features
that are critically
important in providing
high quality
cost
effective health care, but require rigorous privacy safeguards,
t o rp a ted .„ H e a.}, .£.h__ I n f p r ma tX on
The
new system w i l l s t o r e and t r a n s m i t more and more h e a l t h
i n f o r m a t i o n i n e l e c t r o n i c form. Automation w i l l s u p p o r t e f f o r t s t o
p r o v i d e higher q u a l i t y , c o s t e f f e c t i v e h e a l t h c a r e . Data c o l l e c t e d
w i l l provide
i n f o r m a t i o n needed f o r q u a l i t y assurance, a n a l y s i s o f
p r a c t i c e p a t t e r n s and p a t i e n t outcomes, and s c i e n t i f i c
research,
a l l o f which c o n t r i b u t e t o higher q u a l i t y c a r e . These d a t a can a l s o
b e t t e r i n f o r m consumers of t h e i r h e a l t h care c h o i c e s . H e a l t h
c o s t s can be reduced by e l i m i n a t i n g t h e need f o r d u p l i c a t e
care
tests,
make i t e a s i e r t o d e t e c t f r a u d based upon more d e t a i l e d e x a m i n a t i o n
�MAY 10 '93 10:36
of
FROM AMER SOC LAU-MED
practice,
and eliminate
enormous
PAGE.007
paperwork
burdens
from
p a t i e n t s , health care p r o f e s s i o n a l s and health plans. Automation
also
supports
Information
the goal
will
of p o r t a b i l i t y
be r e a d i l y
available
of health
coverage.
i n a mobile s o c i e t y , a s
consumers move from provider to provider, plan to p l a n .
The ease of c o l l e c t i o n , storage and transmission of data over
electronic
networks a l s o
creates s i g n i f i c a n t
risks
to privacy.
Health records can contain a vast amount of personal information:
demographic information such as age, sex, race, and occupation;
financial
information
such
as employment
status
and income;
information about d i s a b i l i t i e s , s p e c i a l needs and other e l i g i b i l i t y
criteria
for f e d e r a l or s t a t e s u b s i d i e s ; medical information such
a s diagnoses, treatments, disease h i s t o r i e s such a s mental i l l n e s s ,
drug or alcohol dependency, AIDS and STOs; and s o c i a l
information
such as family s t a t u s , sexual r e l a t i o n s h i p s , and l i f e s t y l e c h o i c e s .
This information
i s frequently s u f f i c i e n t t o provide a d e t a i l e d
p r o f i l e of the i n d i v i d u a l . T r a d i t i o n a l medical records, moreover,
are
only
a subset
of automated
records containing
substantial
h e a l t h or personal information held by educators, employers, law
enforcement, c r e d i t
and banking, and government agencies. (See
Figure 1 ) .
The importance of privacy and s e c u r i t y of automated records i s
widely acknowledged with numerous governmental and nongovernmental
committees working on the i s s u e .
Accounting
Office
(GAO) report
government
s e t out national
4
A soon to be r e l e a s e d General
recommends
standards
that
the f e d e r a l
f o r the p r o t e c t i o n of
�MRY 10 -93 10:37
FROM RMER SOC LRU-MED
PAGE.008
automated records.*
Health...Secy ri,.tY...Car.ds
Under the new system, health s e c u r i t y cards w i l l be i s s u e d t o
all
c i t i z e n s and lawful r e s i d e n t s of the United
them to r e g i s t e r
i n an accountable health
States entitling
plan
and to r e c e i v e
s e r v i c e s under a f e d e r a l l y defined b e n e f i t s package. B a s i c both to
health care reform and already i n progress
e f f o r t s a t developing
e l e c t r o n i c health care networks i s the use of a unique i d e n t i f i e r
for each person. A unique i d e n t i f i e r i s necessary
the
accuracy
of information
and the e f f i c i e n t
to help ensure
operation
of the
health care system.
Perhaps the most c r i t i c a l
s i n g l e d e c i s i o n regarding
privacy
and s e c u r i t y i n the reformed health care system i s whether to use
the
social
s e c u r i t y number (SSN)
Almost a l l of the recent
as the i n d i v i d u a l
health care
initiatives
identifier.
have proposed
using the SSN as the unique personal i d e n t i f i e r because i t provides
the
most cost
reliably
e f f e c t i v e way of i d e n t i f y i n g the i n d i v i d u a l and
collecting
and sharing
personal
<F7
information.
Social
s e c u r i t y numbers at present are not completely r e l i a b l e i d e n t i f i e r s
which may cardholders
numbers.
having d u p l i c a t e or f r a u d u l e n t l y
The p r i n c i p a l
reason
i s that
until
obtained
the l a t e
1970s
s t r i n g e n t documentation requirements were not implemented. I t could
c o s t i n the range of $1.5 to 2.5 b i l l i o n to v e r i f y the
of a l l holders and i s s u i n g a new, more secure
identities
card.'
Many people i n the privacy community have r a i s e d o b j e c t i o n s to
the use of the SSN because of i t s extensive use f o r a l a r g e v a r i e t y
�MAY 10 '93 10:37
of
FROM AMER SOC LAU-MED
PAGE.009
n o n - h e a l t h r e l a t e d purposes and t h e p o t e n t i a l a b i l i t y t o l i n k
databases.
Among
department
t h e users
stores,
o f t h e SSN a r e debt
utilities,
check
validation
collectors,
services,
super
m a r k e t s , c a b l e t e l e v i s i o n , c r e d i t c a r d i s s u e r s , banks, major o i l
companies,
t h e I n t e r n a l Revenue S e r v i c e , o t h e r F e d e r a l agencies
( m i l i t a r y . Parent Locator S e r v i c e , Food Stamps, S e l e c t i v e S e r v i c e
System), m a i l i n g l i s t
agencies,
companies,
insurance companies,
c r e d i t bureaus, law enforcement
t h e Medical
Information
Bureau,
motor v e h i c l e s departments, employers, s c h o o l s and u n i v e r s i t i e s ,
and
state
agencies.
9
Many people f e a r t h a t
the Social
number has become a d e f e c t o n a t i o n a l i d e n t i f i e r .
1 0
Security
Evan Hendricks
noted:
"Not o n l y does t h e SSN make i t e a s i e r f o r l a r g e
i n s t i t u t i o n s t o compare t h e i r databases, i t a l l o w s
curious
individuals
(including
private
detectives,
computer hackers o r o t h e r s t r a n g e r s you m i g h t n o t want
snooping i n your p r i v a t e l i f e ) t o "hop" from database t o
database and draw o u t a p r o f i l e o f your b u y i n g h a b i t s and
personal l i f e s t y l e . "
The
alternative
to SSN a s a unique
identifier
would be a
number with no use other than f o r the new health c a r e system, and
no embedded l o g i c .
Each
person's
health s e c u r i t y
number, then,
would be j u s t a s p r i v a t e as t h e i r health record.
Whatever the unique i d e n t i f i e r
necessary
to mitigate the f e a r s
t h a t i s chosen, i t w i l l be
expressed
by many c i t i z e n s by
e s t a b l i s h i n g a national privacy p o l i c y t h a t e x p l i c i t l y f o r b i d s the
l i n k i n g of health carie and other information using the SSN or any
other number. Exceptions f o r l i m i t e d , c l e a r l y defined purposes such
�MRY 10 '93 10:38
FROM RMER SOC LRU-MED
PAGE.010
a s development of s t a t i s t i c a l information
may
be permitted.
identifier
will
in n o n - i d e n t i f i a b l e form
Further d i s c u s s i o n of a l t e r n a t i v e s f o r a unique
begin
immediately, and an i d e n t i f i e r
will
be
e s t a b l i s h e d very e a r l y i n the reform process.
Pat i e n t ..Based... L o ng i t yd i na 1 ..He a 1th.. Re c o r ds
The
growing
needs
for detailed
micro-level
health
data
generated by health care reform are emerging i n an environment i n
which the future v i s i o n of health information
systems i s already
undergoing r a d i c a l change. Although many health records have long
existed
i n automated
form, they
have t r a d i t i o n a l l y
tended t o
support s p e c i f i c functions such as the laboratory, pharmacy, or
finance department. A fundamental s h i f t to patient-based records i s
now
occurring
a s part
of longei—term
n a t i o n a l e l e c t r o n i c patient-based
efforts
toward
health information
building
networks.
11
The development of e l e c t r o n i c health care networks permitting
standardized
patient-based
information
to flow
nationwide, and
perhaps even world wide, means that the c u r r e n t p r i v a c y p r o t e c t i o n
focus,
r e q u i r i n g the i n s t i t u t i o n to protect
i t s records must be
reconsidered. Our past thinking assumed a paper or automated record
created
and protected
patient-based
screen.
1Z
by the provider.
We may now e n v i s i o n a
record that anyone i n the system can c a l l up on the
Because JocatSon has l e s s meaning i n an e l e c t r o n i c world,
p r o t e c t i n g privacy r e q u i r e s attaching privacy p r o t e c t i o n s t o the
h e a l t h record i t s e l f , rather than to the i n s t i t u t i o n t h a t generates
it.
1 3
p.y.al Sy.sten»§.„ot..Hei,L£h._Becord.s.
8
�MAY 10 '93 10:38
FROM AMER SOC LAU-MED
PAGE.011
While many h e a l t h care s e r v i c e s w i l l
be p r o v i d e d
framework o f t h e new h e a l t h care system, some w i l l
within the
be p r o v i d e d
o u t s i d e o f i t . As a r e s u l t , a n a t i o n a l p r i v a c y p o l i c y must apply t o
all
h e a l t h care records whether o r n o t they were g e n e r a t e d i n t h e
new system.
H e a l t h records o u t s i d e o f t h e new system may be g e n e r a t e d from
many d i f f e r e n t sources: s e r v i c e s not covered i n t h e comprehensive
b e n e f i t s package under t h e new system may be purchased
supplemental insurance;
through
l a r g e employers may choose t o o p t o u t o f
t h e system; Medicare may remain o u t s i d e
14
o f t h e new s y s t e m ; and
some e p i d e m i o l o g i c a l , b e h a v i o r a l , and h e a l t h s e r v i c e s research may
be conducted o u t s i d e o f t h e new system.
Breaches
of privacy
outside
accountable
health
p l a n s may
c r e a t e unintended and u n d e s i r a b l e consequences f o r t h e o p e r a t i o n o f
t h e new h e a l t h care system.
for
15
Because t h e same r e c o r d s may be used
b o t h system and non-system purposes, a r e a l danger e x i s t s t h a t
abuses o c c u r r i n g o u t s i d e the new h e a l t h c a r e system w i l l be f a l s e l y
attributed
t o i t thereby
creating
negative
i m p r e s s i o n s of. how
i n f o r m a t i o n i s handled.
Current L e g i s l a t i v e P r o t e c t i o n of P r i v a c y
CTO BE INSERTED by Madison Powers]
To
i n c l u d e : Federal
( P r i v a c y A c t o f 1974; Drug and A l c o h o l
p r o v i s i o n s ) s t a t e and l o c a l law, common law.
Theme:
Show
inadequacy
of current
protection
and wide
�MAY 10 '93 10:39
FROM RMER SOC LRU-MED
PAGE.012
v a r i a b i l i t y among j u r i s d i c t i o n s .
The
The
E t h i c a l Framework f o r Privacy
nature and degree o f p r o t e c t i o n which s h o u l d be accorded
t o t h e i n d i v i d u a l ' s i n t e r e s t s i n p r i v a c y and c o n f i d e n t i a l i t y a r e
among t h e most s i g n i f i c a n t q u e s t i o n s t o be addressed i n t h e process
o f h e a l t h care r e f o r m . The t a s k i s t o secure an adequate measure o f
r e s p e c t f o r t h e p r i v a c y and autonomy o f t h e i n d i v i d u a l
consistent
w i t h s o c i e t a l needs f o r an e f f i c i e n t system o f h e a l t h c a r e f i n a n c e
and
d e l i v e r y , an adequate and r e l i a b l e
informational basis f o r
h e a l t h care p l a n n i n g , and an enhanced c a p a b i l i t y f o r p r o m o t i n g and
p r o t e c t i n g t h e p u b l i c ' s h e a l t h . The p o t e n t i a l harm t o i n d i v i d u a l
interests
from
disclosure
of
i n f o r m a t i o n , as w e l l as a s t r o n g
personal
medical
or
health
presumption i n o u r s o c i e t y i n
f a v o r o f r e s p e c t i n g autonomy Cor t h e r i g h t o f t h e i n d i v i d u a l t o
retain
powerful
c o n t r o l over aspects o f h i s o r her own p e r s o n )
provide
arguments i n f a v o r o f r e s t r i c t i n g t h e access o t h e r s may
have t o such i n f o r m a t i o n . However, t h e i n f o r m a t i o n a l r e q u i r e m e n t s
f o r r e a l i z i n g l e g i t i m a t e s o c i e t a l g o a l s o f h e a l t h c a r e r e f o r m may
necessitate
t h a t more r a t h e r than
less personal
information i s
g e n e r a t e d , c o l l e c t e d , and made a v a i l a b l e t o d e s i g n a t e d o t h e r s f o r
a v a r i e t y of treatment,
The
research, and p o l i c y p l a n n i n g
purposes.
l i t e r a t u r e on p r i v a c y abounds w i t h accounts o f t h e moral
foundations
or j u s t i f i c a t i o n s
f o r rules of privacy.
j u s t i f i c a t i o n f o r respecting privacy resides
10
A
primary
i n the p r i n c i p l e of
�MAY 10 '93 10:39
respect
FROM fiMER SOC LflLJ-ME D
PAGE .013
f o r autonomy. To respect
the privacy
of others
i s to
respect t h e i r autonomous wishes not to be accessed i n some r e s p e c t - not to be observed or have information
a v a i l a b l e to others. Respecting
about themselves made
privacy i s an important means of
f o s t e r i n g and developing a sense of s e l f , of personhood, and of
personal
autonomy. I n the absence of some p r i v a c y ,
individuals
cannot formulate autonomous preferences or, more b a s i c a l l y , develop
the
capacity
development
to be s e l f
and
governing. Privacy
maintenance
of
intimate
also
enhances the
human r e l a t i o n s h i p s —
r e l a t i o n s of t r u s t , f r i e n d s h i p and respect. I t i s arguably one of
the d e f i n i n g c h a r a c t e r i s t i c s of intimate r e l a t i o n s h i p s t h a t they
involve the s h a r i n g - f r e e l y given- of p r i v a t e information,
spaces,
and
a c t s . In an intimate r e l a t i o n s h i p , we allow another to enter
the
otherwise
cherished
p r i v a t e sphere
and respected,
of our l i v e s .
I f privacy
both the c a p a c i t y f o r , and meaning o f ,
intimate d i s c l o s u r e i n human r e l a t i o n s h i p s a r e c l e a r l y
Finally,
information
i s not
frequently
i s viewed
as a
diminished.
resource,
the
possession of which by others enables them to e x e r c i s e power over
i n d i v i d u a l s . T h i s r a i s e s the p o s s i b i l i t y of e x p l o i t a t i o n and the
consequent
16
being. '
17
foundational
loss
of psychological,
I t i s not necessary
moral
justification
social,
to resolve
for
and economic w e l l which
i s the more
respecting
privacy—the
formation of intimate r e l a t i o n s h i p s , respect f o r autonomy, or the
development
of
personhood
and
the
capacity
for
autonomous
e x p r e s s i o n . The c e n t r a l point i s that p r i v a c y ' s moral value i s i n
the main d e r i v a t i v e , and based on a complex of moral commitments
11
�MAY 10 "93 10:40
and
FROM AMER SOC LAU-MED
PAGE.014
concerns.
S e v e r a l moral arguments have been used to j u s t i f y
confidentiality
intrinsic
to
r u l e s of
i n the health care context: c o n f i d e n t i a l i t y i s
the
professional/patient
very
nature
relationship,
of
the
health
care
characterized as i t i s
(or
should be) by t r u s t and intimacy; c o n f i d e n t i a l i t y i s a t l e a s t an
i m p l i c i t and sometimes e x p l i c i t promise embedded i n the i n s t i t u t i o n
of health care and i t i s wrong to break a promise; c o n f i d e n t i a l i t y
is
necessary
to bring
about good t o p a t i e n t s and t o s o c i e t y ,
without t h i s assurance, people would not share medically r e l e v a n t
information; and c o n f i d e n t i a l i t y i s necessary to prevent p a t i e n t s
from the harm t h a t could reasonably b e f a l l
them i f information
collected
t o become
i n the course
of treatment
a v a i l a b l e . C o n f i d e n t i a l i t y i s important
were
publicly
i n health care not only
because i t i s a s i g n i f i c a n t component of informational p r i v a c y , but
a l s o because i t advances these other moral v a l u e s , i n a d d i t i o n to
respecting privacy.
The e t h i c a l j u s t i f i c a t i o n s f o r p r i v a c y p r o t e c t i o n s and r u l e s
of c o n f i d e n t i a l i t y point to a v a r i e t y of underlying harms t h a t may
result
from unwanted d i s c l o s u r e s of personal medical
or health
s t a t u s information. I n t r i n s i c moral harms a r e those t h a t
result
from the mere f a c t of an unwanted or u n j u s t i f i e d d i s c l o s u r e of
personal
information.
Many moral
views
at least
recognize the
d e s i r a b i l i t y of p r o t e c t i n g i n d i v i d u a l s a g a i n s t i n s u l t t o d i g n i t y
and
the lack
of respect
f o r the person
evidenced
by
such
d i s c l o s u r e s . Consequential harms are those which are a r e s u l t of a
12
�MRY 10 '93 10:40
FROM RMER SOC LRUJ-MED
PAGE .015
l o s s of p r i v a c y , and they matter morally regardless of whether the
l o s s of privacy i s a consequence of an i n t e n t i o n a l , negligent, or
perfectly
innocent
action
of another.
The morally
significant
f e a t u r e of such l o s s e s of privacy l i e i n the a c t u a l harm that i s
caused. A breach of privacy can r e s u l t i n economic harms such as
l o s s of employment or employability, insurance or i n s u r a b i l i t y , or
housing.
I t can a l s o r e s u l t
Disclosure
of
some
in social
conditions
or p s y c h o l o g i c a l
can be
harms.
stigmatizing,
cause
embarrassment, s o c i a l i s o l a t i o n , and the l o s s of self-esteem. These
r i s k s a r e e s p e c i a l l y great when the perceived causes of the medical
condition
or i l l n e s s include the use of i l l e g a l
drugs, s o c i a l l y
d i s f a v o r e d forms of sexual expression, or other behavior not widely
s o c i a l l y approved. Moreover, s t i g m a t i z a t i o n may be a consequence of
such d i s c l o s u r e s i n some instances even when the p o t e n t i a l causes
do not involve any despised choices or behavior on the part of the
a f f e c t e d i n d i v i d u a l . Family members, neighbors, and work a s s o c i a t e s
may withdraw s o c i a l
conditions
mental
or
support from those learned
or d i s e a s e s ,
emotional
e s p e c i a l l y i f such
instability
or
to have c e r t a i n
conditions
physical
or
involve
behavioral
a t t r i b u t e s t h a t some i n d i v i d u a l s f i n d uncomfortable t o observe.
Although privacy i s important, i t i s not always unambiguously
a p o s i t i v e value.
Nor i s i t always paramount i n c o n f l i c t s
with
other cherished values. For example, there may be a need t o a c c e s s
an
i n d i v i d u a l ' s personal
health
information
i n order t o prevent
harm t o an i d e n t i f i a b l e person, or to b e n e f i t the person who i s the
subject
of
the information,
or to b e n e f i t
13
another
person.
�MAY 10 '93 10:41
FROM AMER SOC LAU-MED
PAGE.016
A l t e r n a t i v e l y , access t o the i n f o r m a t i o n may be needed i n o r d e r t o
f u r t h e r t h e l e g i t i m a t e and valued s o c i a l i n t e r e s t s o f a l l c i t i z e n s
i n such m a t t e r s as p u b l i c a c c o u n t a b i l i t y , m o n i t o r i n g and e v a l u a t i o n
of the health
care system, e f f i c i e n c y i n t h e d e l i v e r y o f c a r e ,
s c i e n t i f i c advance and medical knowledge, and t h e p u b l i c ' s h e a l t h .
Any
infringement
of privacy
must
be done
i n the least
i n t r u s i v e manner p o s s i b l e . The i n f o r m a t i o n accessed must be no more
t h a n i s necessary t o accomplish the end j u s t i f y i n g t h e
and
must be r e s t r i c t e d
t o only
infringement
those persons who have a t r u l y
l e g i t i m a t e need t o know. A l s o , t h e r e s h o u l d be a s t r o n g presumption
favoring
genuine
informed
consent;
wherever
p e r m i s s i o n o f t h e person who i s t h e s u b j e c t
should
be o b t a i n e d .
identifiable
error
I n general,
the
of the information
t h e more
t h e i n f o r m a t i o n , t h e more l i k e l y
o r be m i s l e a d i n g ,
possible,
comprehensive and
i t i s t o contain
and t h e more s e n s i t i v e o r p o t e n t i a l l y
damaging i f d i s c l o s e d , t h e g r e a t e r t h e moral burden on t h o s e who
have such i n f o r m a t i o n i n t h e i r possession.
F a i r Information
Practices
A major p o l i c y e f f o r t on c o n f i d e n t i a l i t y emerged i n t h e e a r l y
1970s t h a t has e n d u r i n g importance today. The A d v i s o r y Committee on
Automated
Personal
Data
information practices."
Systems developed
principles of
"fair
1 8
F a i r i n f o r m a t i o n p r a c t i c e s s t i p u l a t e t h a t i n d i v i d u a l s about
whom d a t a a r e c o l l e c t e d have t h e r i g h t t o know about and approve
t h e uses t o which data a r e p u t , t h a t no s e c r e t
14
data systems a r e
�MAY 10 '93 10:41
FROM AMER SOC LAU-MED
PAGE.017
permitted to e x i s t , and that i n d i v i d u a l s have the r i g h t t o review
and
to
correct
data
about
themselves.
Specifically,
fair
information p r a c t i c e s require t h a t :
Information
necessary
should
be c o l l e c t e d
to the extent
out the purpose
to carry
only
f o r which the
information i s c o l l e c t e d .
Information c o l l e c t e d f o r one purpose should not be used
for another
purpose without
the i n d i v i d u a l ' s
informed
consent.
Information
necessary
should
to carry
be
disposed
of when
no
out the purpose f o r which
longer
i t was
collected.
Methods
to ensure
accuracy,
completeness, and t i m e l i n e s s
reliability,
relevance,
of information should be
i nstituted.
Individuals
should
be
notified
( i n advance
of the
c o l l e c t i o n of information) a s t o :
-
whether the f u r n i s h i n g of information i s mandatory
or voluntary;
-
what the record keeping
practices
a r e concerning
the information;
what the uses w i l l be made of the information.
I n d i v i d u a l s should be permitted to inspect and c o r r e c t
information concerning
15
themselves.
�MAY 10 '93 10:41
FROM AMER SOC LAU-MED
PAGE.018
Informed... Consent
If
a central
ethical
value
behind
privacy
i s personal
autonomy, then the i n d i v i d u a l must be afforded the r i g h t to consent
to
most d i s c l o s u r e s of i d e n t i f i a b l e
information; procedures f o r
ensuring informed consent a l s o have t o be expanded, enhanced, and
1
r e g u l a r i z e d . ' Informed consent
r e q u i r e s adequate information to
enable a person to make a genuinely informed
c h o i c e . The person,
t h e r e f o r e , needs information about the purpose of d i s c l o s u r e , to
whom
i t will
be made,
during
what
period
of time,
and the
safeguards against d i s c l o s u r e . The p a t i e n t must have the c a p a c i t y
to reasonably understand that information and must have competency
to
provide
legally
effective
consent.
The i n d i v i d u a l
must be
presented with a t r u l y voluntary choice, and must consent t o the
specific
disclosure.
Where
d i s c l o s u r e of information
without
consent i s authorized or required by law, p a t i e n t s have the r i g h t
to be informed.
20
Informed consent, i n i t s best sense, should u s u a l l y be founded
on
an i n t e r a c t i v e ,
meaningful,
dialogue
between
a health
p r o f e s s i o n a l and p a t i e n t . C r e a t i v e and responsive informed
procedures
can r e a d i l y
supplement
this
be b u i l t
personal
into
dialogue.
automated
This
includes
care
consent
systems
to
automatic
reminders of the need to renew an informed consent statement
after
the l a p s e of an agreed-upon time.
U e . . of... Da t a_ f or... . n tended.,. jP u rpgses
s..
1
One of the core f a i r information p r a c t i c e s i s t h a t personal
data
should
be used
only
f o r the purpose f o r which
16
they
were
�MAY 10 '93 10:42
collected.
FROM AMER SOC LAU-MED
PAGE.019
"The purpose f o r which personal
data
are collected
should be s p e c i f i e d not l a t e r than a t the time of data c o l l e c t i o n
and the subsequent use l i m i t e d to the f u l f i l l m e n t of those purposes
or such others a s are not incompatible with those purposes and a s
are
s p e c i f i e d on each occasion of change of purpose."
21
.A.cc§§s. ...to ...Recq. r ds.
D e f i n i n g t h e parameters o f who has access t o h e a l t h r e c o r d s
and
under
what
conditions
i s extraordinarily
important i n
p r o t e c t i n g p a t i e n t p r i v a c y . P a t i e n t s have t h e most c o n t r o l over t h e
accuracy and use o f t h e i r h e a l t h r e c o r d s i f t h e y have t h e r i g h t t o
review and c o r r e c t those r e c o r d s . P a t i e n t s have t h e s t r o n g e s t c l a i m
t o c o n t r o l l i n g access o f o t h e r s t o t h e i r h e a l t h r e c o r d s when t h e y
are
i n i d e n t i f i a b l e f o r m , s i n c e t h e i n f o r m a t i o n i s p e r s o n a l t o them
and u n a u t h o r i z e d d i s c l o s u r e can r e s u l t i n harm. The most i m p o r t a n t
uses o f i d e n t i f i a b l e h e a l t h r e c o r d s w i t h t h e p a t i e n t ' s consent a r e
for
t h e purposes o f d i r e c t p a t i e n t c a r e , u t i l i z a t i o n
quality
r e v i e w , and
assessment.
Disclosure
of unlinked
and unlinkable data
quality
assurance and assessment
of system
require
consent
of any personal
i n the absence
for research,
performance may not
stake
in
the
intended use of the data. However, e t h i c a l and p o l i c y review of the
need f o r and use of information
isstill
identifiable
i s d i s c l o s e d , i t should
consist
health
information
important.
When nononly
of the information that i s necessary t o accomplish the
l e g i t i m a t e purpose. Such information must only be used f o r t h a t
purpose
with
strong p r o t e c t i o n of the c o n f i d e n t i a l i t y
17
of t h a t
�MAY 10 -93 10:42
FROM PMER SOC LAU-MED
PAGE.020
information.
S e I f . Reqy.J.ation
Privacy
protection
i s enhanced
if all
health
p l a n s and
p r o v i d e r s produce t h e i r own i n f o r m a t i o n codes w i t h i n t h e framework
of
fair
national
privacy
information
data
practices
protection
protection
and g u i d e l i n e s
panel
policy
(see
below).
i s an e x c e l l e n t
established
by a
Preparation
of a
method o f r e q u i r i n g
s p e c i a l i z e d groups t o c o n s u l t t h e i r own s e l f - i n t e r e s t , t o r e p o r t on
t h e i r own good p r a c t i c e s , and t o f o r m u l a t e
reasonable s o l u t i o n s t o
o u t s t a n d i n g problems. Such e f f o r t s a t s e l f - r e g u l a t i o n can r e s u l t i n
pamphlets and p u b l i c n o t i c e s t h a t can be used t o b e t t e r i n f o r m
the
g e n e r a l p u b l i c about the p r i v a c y code i n p l a c e and assuage consumer
concerns. I d e a l l y , adherence t o a sound i n f o r m a t i o n code s h o u l d be
reviewed on an ongoing b a s i s by a P r i v a c y
t h e p l a n and
In
provider
order
P r o t e c t i o n Committee a t
level.
t o develop
h e a l t h p l a n s and p r o v i d e r s
sound
privacy
practices,
accountable
must t r a i n and r e t r a i n s t a f f ;
d e t a i l e d manuals o f a p p r o p r i a t e
procedures; and
develop
m o n i t o r and
audit
compliance w i t h s t i p u l a t e d norms.
S e c u r i t y of Health Information Systems
The
National
Research C o u n c i l
recommends t h a t
"The n a t i o n
needs computer technology t h a t s u p p o r t s s u b s t a n t i a l l y i n c r e a s e d
s a f e t y , r e l i a b i l i t y , and,
in particular, security."
s e c u r i t y as:
18
2 2
They
defined
�MAY 10 '93 10:43
FROM AMER SOC LAU-MED
PAGE.021
"...protection against unwanted disclosure, modification
or destruction of data in a system, and also ... the
safeguarding of systems themselves. Security, safety, and
reliability
together
are
elements
of
system
trustworthiness—which inspires the confidence that a
system will do what it is expected to do"
As automated systems i n c r e a s i n g l y contain standardized health
care
information
electronic
capable
networks,
systems design,
of
being
transmitted
widely
"society becomes more vulnerable
over
to poor
accidents that d i s a b l e systems, and a t t a c k s on
computer systems".
24
Opportunities f o r using e l e c t r o n i c health care
networks may a l s o be l o s t i f there i s s e r i o u s m i s t r u s t of t h e i r
safety.
E s t a b l i s h i n g appropriate s e c u r i t y standards w i l l , w i t h i n the
proper l e g i s l a t i v e framework, both strengthen p a t i e n t p r i v a c y and
c o n f i d e n t i a l i t y and assure that information i s a v a i l a b l e t o improve
the q u a l i t y and e f f i c i e n c y of health care s e r v i c e s . With e x i s t i n g
paper systems, requests for information often r e s u l t i n the r e l e a s e
of data
t h a t a r e not pertinent to the current
documents a r e xeroxed and/or faxed
request a s t o t a l
to u s e r s . With computerized
systems, t a i l o r e d s e l e c t i o n of data items from an i n d i v i d u a l health
record
i s easy
information
thereby
making
that i s necessary
establishment
i t possible
t o only
to the i n q u i r y a t hand. With the
of appropriate access requirements,
more a c c u r a t e ,
r e l i a b l e , and c o s t - e f f i c i e n t protection of health care
can
be
achieved
than
with
share the
non-automated
systems.
information
Moreover,
technology o f f e r s a means of c r e a t i n g audit t r a i l s f o r monitoring
all
i n s t a n c e s of access
to and d i s c l o s u r e of automated
health
records on i n d i v i d u a l s . This involves computers producing logs t h a t
19
�MAY 10 '93 10:43
can
FROM AMER SOC LAU-MED
be consulted
complaints
PAGE.022
by s u p e r v i s o r s
and s e c u r i t y
officers
when
a r e received from i n d i v i d u a l s or a s u s p i c i o u s record
occurs. Thus, patterns of s t a f f browsing i n p a t i e n t s " records might
be
identified
officers.
and questioned
by s e c u r i t y
and data
protection
2 5
At the same time, computers make the anonymous exploring of
data an a n t i s e p t i c process. Computerization
makes f i l e s t h a t were
d i f f i c u l t to use e a s i e r to a c c e s s , and thus i n c r e a s e s the range of
secondary
uses made of the data. A s i n g l e breach of s e c u r i t y can
r e s u l t i n a very large amount of information about a l o t of persons
being
d i s c l o s e d . Computerization
also
makes i t e a s i e r
to link
information from many sources together i n c r e a s i n g the p o t e n t i a l f o r
undue i n t r u s i v e n e s s into people's
records and l i v e s .
Individuals
find
where
about
i t difficult
resides
and how
Computerization
to understand
that
information
information
has been
can make i t extremely
linked
difficult
or
them
used.
to effectively
c o n t r o l the r e - d i s c l o s u r e of information. Records can be e a s i l y
t r a n s m i t t e d a c r o s s s t a t e l i n e s , making i t d i f f i c u l t for any s t a t e
to o f f e r reasonable p r o t e c t i o n s .
26
Although, making a computer system one-hundred percent secure
i s not f e a s i b l e , there i s much that can be done t o p r o t e c t records
with c a r e f u l planning and use of technology. Technological advances
i n e l e c t r o n i c systems
are proceeding
a t an a c c e l e r a t e d pace and
today's s t a t e of the a r t systems w i l l soon be replaced with more
s o p h i s t i c a t e d systems. Data p r o t e c t i o n p o l i c i e s , i f they are t o be
e f f e c t i v e i n t h i s rapidly changing environment, must not be t i e d t o
20
�MAY 10 '93 10:44
FROM RMER SOC LAU-MED
PAGE.023
s p e c i f i c systems and system c a p a b i l i t i e s , but rather must e s t a b l i s h
p r i v a c y p r o t e c t i o n guidelines that define system goals but do not
s p e c i f y how these goals w i l l be reached. These p r o t e c t i o n s w i l l be
most e f f e c t i v e i f privacy i s addressed
developing
those
d i r e c t l y a t t h e outset i n
e l e c t r o n i c systems. They should
with
authorized
access
are able
authorized purposes a t authorized
guarantee
to access
that
only
records f o r
times.
Because computer technology i s r a p i d l y evolving i t w i l l a l s o
be necessary
to fund an ongoing research program t o ensure
that
these advances do not erode s e c u r i t y p r a c t i c e s . There w i l l a l s o be
a
need
f o r oversight
and management s t r u c t u r e s promoting the
development and proper use of system s e c u r i t y p r i n c i p l e s i n the
development and implementation of health care data systems.
E f f e c t i v e s e c u r i t y protection f o r health care information w i l l
require
use of technology
that
i s not r e g u l a r l y used
i n most
computer systems and networks today. While t h i s technology e x i s t s
and has been shown to be e f f e c t i v e and a f f o r d a b l e , i t i s not widely
used because i t would have to be r e t r o f i t t e d to e x i s t i n g systems or
because of perceived c o s t s or inconvenience.
A continuing concern
has
security
been
the a c c e p t a b i l i t y of computer
to
health
p r o f e s s i o n a l s i f s e c u r i t y i s perceived a s slowing down the flow of
information
needed f o r providing health c a r e . These concerns a r e
v a l i d p a r t i c u l a r l y i n emergency s i t u a t i o n s where seconds count or
where the p a t i e n t i s unable to supply the necessary
The
necessary
steps
for
identified
achieving
by the National
greater
21
information.
Research
computer
27
Council as
security
and
�MAY 10 -93 10:44
FROM AMER SOC LAU-MED
PAGE.024
t r u s t w o r t h i n e s s a r e as a p p l i c a b l e t o h e a l t h computer systems as t o
those s e r v i n g o t h e r purposes. These s t e p s i n c l u d e : p r o m u l g a t i n g a
comprehensive
Principles"
security
s e t of
"Generally
Accepted
which would p r o v i d e a c l e a r
features,
assurances
System
Security
statement o f e s s e n t i a l
and p r a c t i c e s .
2 8
Among t h e major
elements o f these p r i n c i p l e s a r e q u a l i t y c o n t r o l , access c o n t r o l on
code as w e l l
protection
as d a t a ,
user
of executable
identification
code,
security
and a u t h e n t i c a t i o n ,
logging,
a
security
a d m i n i s t r a t o r , data e n c r y p t i o n , o p e r a t i o n a l s u p p o r t t o o l s t o a s s i s t
i n v e r i f y i n g t h e s e c u r i t y s t a t e o f t h e system, independent a u d i t s
of t h e system and hazard a n a l y s i s . L e v e l s o f access can a l s o be
established
recognizing
the varying
degrees o f s e c u r i t y
required
f o r d i f f e r i n g kinds o f i n f o r m a t i o n .
The
against
adequacy o f data s e c u r i t y systems can a l s o be e v a l u a t e d
prior
threats
to
confidentiality.
Threats
to
c o n f i d e n t i a l i t y can emerge from o u t s i d e an o r g a n i z a t i o n as w e l l as
among an i n s t i t u t i o n ' s own personnel and t h e s e c u r i t y system s h o u l d
be designed t o address each type o f t h r e a t . Regular s e c u r i t y checks
s h o u l d be conducted and r e c o r d e d .
29
Needed Actions
P r i v a c y and s e c u r i t y p r o t e c t i o n f o r h e a l t h i n f o r m a t i o n w i l l be
an i n t e g r a l p a r t o f t h e development o f t h e new h e a l t h c a r e system.
The
f o l l o w i n g a c t i o n s a r e needed:
Establish,
through
preemptive
Federal
22
legislation,
a
national
�.0
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�MAY 10 '93 10:45
FROM AMER SOC LAU-MED
PAGE.02S
health care system or e x i s t s outside of i t and a l l types
of
health
care
(electronic
information,
or paper),
a r c h i v e ) or user/holder
location
regardless
of
(storage,
form
transit,
(government, provider, p r i v a t e
organization);
protect
a l l individually
identifiable
information equally, s i n c e d i f f e r e n t
health
care
individuals
will
have d i f f e r e n t perceptions of what should be considered
sensitive;
establish
enforceable
and meaningful
mechanisms and
p e n a l t i e s to ensure compliance and define
responsibilities
f o r policy
setting,
implementation
administration,
monitoring, enforcement, and standards s e t t i n g .
A national privacy framework w i l l be founded on a code of f a i r
information p r a c t i c e s . The code w i l l
about whom data
are collected
stipulate that
individuals
have the r i g h t to know about and
approve the uses to which the data are put, t h a t no s e c r e t
data
systems are permitted to e x i s t , and that i n d i v i d u a l s have the r i g h t
to review and to c o r r e c t data about themselves.
EstafrJIsh
a
system
of
universsl
identifiers
systern
24
for
the
health
care
�M Y 10 '93 10:46
A
F O A E S C LAU-MED
RM MR O
Unique i d e n t i f i e r s
PAGE.027
are needed t o help ensure
accuracy of
i n f o r m a t i o n and e f f i c i e n t operation o f the health care
system.
However, such i d e n t i f i e r s should not become a r i s k t o the privacy
of the i n d i v i d u a l . Although the Social Security Number (SSN) i s the
most obvious candidate f o r a health care i d e n t i f i e r , there are
serious concerns about the privacy i m p l i c a t i o n s i n i t s use. Further
discussion and examination of a l t e r n a t i v e s w i l l begin immediately
and an i d e n t i f i e r scheme w i l l
be established very e a r l y i n the
reform process.
Effective
the
security
issuance
development
Federal
protection
of
of
security
security
government
for
health
standards
standards
will
assume
will
a leadership
The current voluntary process
security
for automated systems.
33
core
information
requires
guidance.
Further
and
also
be
role
fostered
in
and
this
the
process.
has not resulted i n adequate
The promulgation of national
security standards and guidance i s necessary to ensure that the
intent of national privacy protection l e g i s l a t i o n covering health
care information systems w i l l be met.
Federal
authority
for developing
health
care
information
security standards and their further development w i l l be vested i n
the
National
Health
Board with
active participation by other
relevant Federal agencies (e.g. the National I n s t i t u t e of Standards
and Technology, Department of Heaith and Human Services, Department
of
Defense, Department
of Veterans: Affairs,
25
National
Highway
�MRY 10 '93 10:46
Traffic
FROM RMER SOC LRU-MED
Safety
ftdministration,
PRGE.028
and t h e Consumer P r o d u c t
Safety
Commission).
Establish
National
security.
a Data
Health
While
Protection
and Security
Board
overseeing
for
the National
policy
setting
role,
plans,
and providers
will
and managing
Health
states,
health
also
Panel (s) as part
Board
will
alliances,
be active
of the
privacy
and
the
major
play
accountable
partners
in this
health
process.
E s t a b l i s h i n g a Data P r o t e c t i o n and S e c u r i t y P a n e l ( s ) as p a r t
of t h e National
Health
Board w i l l
fill
a major gap i n America's
privacy
and s e c u r i t y framework. The p r o p o s a l
privacy
protection
1974.
34
entity
has been
f o r creation of a
recommended by many
T h i s panel's r e s p o n s i b i l i t i e s w i t h r e s p e c t
t o the privacy
and c o n f i d e n t i a l i t y of h e a l t h c a r e i n f o r m a t i o n w i l l
-
since
include:
s e t t i n g standards through i n t e r p r e t i v e r u l e s and/or g u i d e l i n e s
t h a t must be f o l l o w e d by members o f t h e h e a l t h c a r e
reform
system;
-
m o n i t o r i n g and e v a l u a t i n g t h e i m p l e m e n t a t i o n o f s t a n d a r d s
s e t by s t a t u t e s , r e g u l a t i o n s , o r g u i d e l i n e s ;
-
c o n d u c t i n g r e s e a r c h , s t u d i e s , and i n v e s t i g a t i o n s ;
-
supplementing
other
mechanisms
26
i n the health
care
reform
�NPY
10 '33 10:47
FROM PMER SOC LPU-MED
PPGE.029
.... . ^ ., ^^mvw^m
syste.
though
which
citizens
i n f o r m a t i o n c o l l e c t e d and
qu«stion
the propriety of
used by v a r i o u s p a r t i c i p a n t s i n t h e
system;
-
advising
t h e President
and t h e Congress,
government
a g e n c i e s , s t a t e s , and o t h e r p a r t i c i p a n t s i n t h e
health
c a r e reform system;
-
supporting
the development of consent forms g o v e r n i n g t h e
d i s c l o s u r e and r e - d i s c l o s u r e of i n f o r m a t i o n t o
persons, f o r a u t h o r i z e d
This
panel's
authorized
purposes, a t a u t h o r i z e d
responsibilities with
times.
respect t o s e c u r i t y o f
h e a l t h care i n f o r m a t i o n systems w i l l . i n c l u d e :
-
setting
security
" standards
.through
I r e g u i a t i o n : .and/or
guidelines;
r e q u i r i n g sec
health
urity
care
standards t o be implemented i n a l l
information
systems, and
establishing
p e n a l t i e s f o r f a i l u r e t o do s o ;
creating
incentives
for timely
completion o f s e c u r i t y
s t a n d a r d s development;
funding
pilot
projects
demonstrating; the
27
technology
�MAY 10 '93 10:47
FROM AMER SOC LAU-MED
PAGE.030
required f o r implementing s e c u r i t y standards and s h a r i n g
information i n the health care s e t t i n g ;
working with the health provider
community to f o s t e r
development of s e c u r i t y
responsive to t h e i r
practices
goals of providing e f f e c t i v e medical c a r e .
Establish
B comprehensive
education
and awareness
system
including
program
among all
the consumers
whom information
is
being
fostering
members
of
these
privacy
and
of the health
health
security
reform
services
care
care
about
collected.
Unless those involved i n the health care system a r e aware of
their
have
r i g h t s and r e s p o n s i b i l i t i e s , e s t a b l i s h e d p r o t e c t i o n s w i l l
limited
impact.
The National
Health
Board
will
play
a
l e a d e r s h i p r o l e i n f o s t e r i n g the development and implementation of
o r i e n t a t i o n and t r a i n i n g
programs f o r personnel
with a c c e s s t o
health care information as w e l l as supporting the development of
programs f o r f o s t e r i n g consumer awareness about t h e i r r i g h t s with
respect to the development and r e - d i s c l o s u r e of information about
them. Because of i t s major s i g n i f i c a n c e , s p e c i a l e f f o r t s should be
d i r e c t e d a t encouraging
consumers t o permit the use of information
about them f o r authorized research purposes.
Handbooks d e s c r i b i n g p a t i e n t s r i g h t s with respect t o records
maintained
about
them w i l l
be d i s t r i b u t e d
28
by health
alliances
�MRY 10 '33 10:48
FROM RMER SOC LRU-MED
and/or accountable
PAGE.031
health plans. Individuals have the right to
expect, and the system has the obligation to provide, assurances
that personal records are accurate, timely and complete, and that
records w i l l be confidential and maintained in a secure system.
The success of the new health care system depends in large
part on the integrity of information and the confidence of the
public that private information w i l l be vigorously protected.
(t:\PRIY-7S.lRr...C:\l(>O0CS\HCPtlLlCr\PRI»-JS.UT
29
�MRY 10 '93 10:48
FROM RMER SOC LRU-MED
PRGE.032
Notes
1. Louis H a r r i s and Associates, I n c . and Westin AF. E q u i f a x
on Consumers i n t h e I n f o r m a t i o n A g e
r
Second Annual
Update.
Report
Equifax.
1992.
2. For a survey of l i m i t e d access or r e s t r i c t e d a c c e s s d e f i n i t i o n s
see,
Allen
A, U n e a s y A c c e s s ; P r i v a c y
New J e r s e y , Rowman and Allanheld.
endnotes 29-39.
f o r Women i n A F r e e
Society,
1987: 11., and accompanying
3. Dp. c i t . A l l e n .
4.
C>I°an and Renee to add c i t e s . ]
5.
The d i s c u s s i o n i n the paragraph i s a synopsis of information
contained
in
Toward
an Electronic
Standards and Developments*
Number I . January 1993.
Patient
Record;
Updates
on
Medical Records I n s t i t u t e , Volume I ,
6.
The Medical and Health Insurance Reform Information Act of
1992.
7.
Stark B i l l , Health Care Cost Containment and Reform Act of
1993,
HR-200, 103rd Congress, F i r s t S e s s i o n . January 5, 1993S.
Statement by Gwendolyn S. King, Commissioner of S o c i a l
S e c u r i t y , Before the Subcommittee on S o c i a l S e c u r i t y , Committee on
Ways and Means on S o c i a l S e c u r i t y Card and Number, February 27,
1991.
9. S m i t h R E . R e p o r t
Numbers,
A Special
on t h e C o l l e c t i o n a n d U s e o f S o c i a l
Report
from t h e P r i v a c y
Journal.,
Security
Privacy
J o u r n a l , Providence. 1885. See Attachment A: E x c e r p t s from Mr.
Hendricks's Testimony before the House Committee on Ways and Means'
Subcommittee on S o c i a l S e c u r i t y .
10.
11.
Ibid.
Dick
RS, EB S t e e n ,
e d s . The C o m p u t e r
Based Patient
Record,
I n s t i t u t e of Medicine, National Academy of S c i e n c e s . Washington,
D.C. 1991: 32-35. While p a r t i c u l a r groups vary i n the s p e c i f i c s of
t h e i r v i s i o n , those focusing on development of automated health
c a r e systems, such as the Computei—based P a t i e n t Record I n s t i t u t e ,
Medical Record I n s t i t u t e , and the American National Standards
I n s t i t u t e , see the system of s e v e r a l p a r t s emerging i n the long
run:
a comprehensive longitudinal computei—based p a t i e n t
record containing a l l c l i n i c a l , f i n a n c i a l and r e s e a r c h
data.
30
�MRY 10 -93 10:48
FROM RMER SOC LRU-MED
PRGE.033
a " n a t i o n a l " e l e c t r o n i c network f o r a c c e s s i n g
this
health record f o r a v a r i e t y of purposes such as primary
c a r e , insurance payment, peer review, c o s t containment,
p u b l i c health and research purposes.
use of a smart card f o r purposes ranging from p r o v i d i n g
health insurance coverage information t o providing a
conception-to-death record of a l l health c a r e .
use of unique p a t i e n t - s p e c i f i c i d e n t i f i e r s nation, and
perhaps, world wide.
12. John Fanning addressed t h i s i s s u e i n h i s A p r i l 1, 1993
memorandum, "Musing of John Fanning on Legal C o n t r o l s f o r
Information Held i n Computerized Systems."
13. The d i s c u s s i o n i n the paragraph i s a s y n o p s i s of information
contained
in
Toward
an Electronic
Patient
Record;
Updates
on
Standards and Developments, Medical Records I n s t i t u t e , Volume I ,
Number I . January 1993.
14. Medicare records are covered by the P r i v a c y P r o t e c t i o n Act of
1974. Medicaid records are covered by s t a t e law but a r e required
t o comply with T i t l e 19 of S o c i a l S e c u r i t y Act when used by s t a t e
agencies to administer that program.
15. O p . c i t . Waller, 1991, s t a t e s : "Thus, the lack of adequate,
uniform, national protection of p a t i e n t records may hinder f u l l
development and r e l e a s e of p a t i e n t information".
From a somewhat d i f f e r e n t prospective, the c u r r e n t patchwork of
s t a t e law and regulation c r e a t e s problems f o r the development of
computerized systems that must a l s o be resolved. As d i s c u s s e d by
OK Fulton i n "Legal Problems A r i s i n g i n the Automation of
Health Records",
Legal Review,
T o p i c s i n H e a l t h R e c o r d Management,
December 19S7, e l e c t r o n i c records and s i g n a t u r e s a r e c u r r e n t l y not
accepted within the legal framework of many s t a t e s and a r e ,
consequently, not admissible evidence i n s t a t e c o u r t s .
16. Op. c i t . Parent.
17. Op. c i t . Gavison.
18.
Westin
AF. Computers,
Health Records,
and Citizens*
Rights.
National Bureau of Standards Monograph 1S7, Washington D.C.
December 1976.
19.
Rozovsky
F A . C o n s e n t t o T r e a t m e n t ; A P r a c t i c a l G u i d e . . .2nd e d . ,
Boston. 1990.
20. Beauchamp T. "Informed Consent," i n Veatch RM, ed., Medical
E t h i c s , Boston. 1989: 180.
31
�MPY
10 '93 10:49
21.
FROM fiMER SOC LflLJ-ME D
Organization
Guide! ines
on
the
for
Economic
Protection
of
PAGE . 034
Cooperation
P r i v a c y and
and
Development.
Transborder
Flows
of
Personal Data. P a r i s . 1981: 10.
22.
Computers
at
Risk:
Safe
Computing
in
the
Information
Age,
System
Security
Study
Committee.
Computer
Science
and
Telecommunications Board, Commission on
Physical
Sciences,
Mathematics and Applications, National Research C o u n c i l . 1990: 2.
23. I b i d .
24. I b i d .
25.
Bruce
JAC,
Privacy
and
Confidentiality
of
Health
Care
Information. 2nd ed., American Hospital P u b l i s h i n g I n c . 1988.
26. These i s s u e s have been covered i n many sources already c i t e d as
well as i n many other sources including Rothfeder 2, P r i v a c y for
S a l e ; How C o m p u t e r i z a t i o n
Secret,
Simon
&
H a s Made E v e r y o n e ' s P r i v a t e
Schuster,
1992; Op.cit.
Toward
L i f e a n Open
an
Electronic
P a t i e n t R e c o r d ; U p d a t e s on S t a n d a r d s a n d D e v e l o p m e n t s , 1 9 9 3 ; DHEW,
R e c o r d s , C o m p u t e r s a n d t h e R i g h t s o f C i t i z e n s , 1 9 7 3 ; W a l l e r A,
" P a t i e n t s * Rights I s s u e s " from "Legal Aspects of Computer Based
P a t i e n t Records and Record Systems", The Computer-Based P a t i e n t
Record, I n s t i t u t e of Medicine, 1991.
S i m i l a r concerns have been expressed by the Computer P r o f e s s i o n a l s
f o r S o c i a l R e s p o n s i b i l i t y (CPSR) regarding computerization more
g e n e r a l l y . I n h i s testimony before the Subcommittee on Government
Information, J u s t i c e and A g r i c u l t u r e , Committee on Government
Operations, U.S. House of Representatives, May 16, 1990, Mark
Rotenberg who d i r e c t s CPSR's Washington O f f i c e s t a t e d "there i s
l i t t l e question that new computer technology has made i t e a s i e r f o r
large o r g a n i z a t i o n s to c o l l e c t and exchange data. And i t has made
p o s s i b l e inferences about i n d i v i d u a l behavior bases on t h i s
information.
Computer technology
has spawned an
enormous
p r o l i f e r a t i o n of d e t a i l e d t r a n s a c t i o n a l data t h a t can be used f o r
purposes detrimental to the i n t e r e s t s of the person involved. The
problem today i s that there i s inadequate p o l i c y guidance to ensure
the p r o t e c t i o n of privacy for t h i s personal information".
27. This
American
Symposium
i s s u e was discussed
Medical Informatics
on
Computer
i n many of the s e s s i o n s of the
A s s o c i a t i o n ' s S i x t e e n t h Annual,
Applications
in
November 8 through 11, 1992 i n Baltimore
Medical
Care,
held
on
Md.
28. I b i d . This s e c t i o n draws heavily on d i s c u s s i o n s contained on
pages 4 through 6 and pages 28 and 29.
29. C u r r e n t l y , the majority of standards i n the U.S. a r e developed
through a voluntary consensus process with p a r t i c i p a t i o n from both
the p u b l i c and p r i v a t e s e c t o r s . Within the Federal government, the
32
�MAY 10 '93 10:53
FROM AMER SOC LAU-MED
PAGE.001
Omnibus Budget R e c o n c i l i a t i o n Act of 1989 assigned the Agency for
Health Care P o l i c y and Research (AHCPR) within the Department of
Health and Human S e r v i c e s r e s p o n s i b i l i t y for developing automated
medical record standards. AHCPR has pursued t h i s o b j e c t i v e by
a c t i v e l y supporting ANSI's Health Informatics Standards Planning
Panel and other a c t i v i t i e s encouraging standards developments.
30. For example, the Omnibus Budget R e c o n c i l i a t i o n Act of 19S9,
Pub. L. No. 101-239, § 6103(a), created the Agency for Health Care
P o l i c y and Research (AHCPR) (Public Health S e r v i c e Act, t i t l e IX,
42 U.S.C. §§ 299 et s e q . ) .
I t a l s o e s t a b l i s h e d a program of
research on health care outcomes and procedures ( S o c i a l S e c u r i t y
Act, § 1142, 42 U.S.C. § 1320b-12) and mandated that
.... the Secretary of Health and Human S e r v i c e s s h a l l
report to the Congress on the f e a s i b i l i t y of l i n k i n g
r e s e a r c h - r e l a t e d data described i n s e c t i o n 1142(d) of the
S o c i a l Security Act with s i m i l a r data c o l l e c t e d or
maintained by non-Federal e n t i t i e s and by Federal
agencies other than the Department of Health and Human
S e r v i c e s (including the Departments of Defense and
Veterans A f f a i r s and the O f f i c e of Personnel Management)
(Omnibus Budget R e c o n c i l i a t i o n Act of 1989, Pub. L. No.
101-239, § 6 1 0 3 ( b ) ( 2 ) ) .
The
r e s e a r c h - r e l a t e d data r e f e r r e d to are useful f o r
...research with respect to the outcomes, e f f e c t i v e n e s s ,
and
appropriateness of health
care
s e r v i c e s and
procedures i n order to i d e n t i f y the manner i n which
d i s e a s e s , d i s o r d e r s , and other health conditions can most
e f f e c t i v e l y and appropriately be prevented, diagnosed,
t r e a t e d , and managed c l i n i c a l l y ;
(Ibid.).
T h i s research, known as medical e f f e c t i v e n e s s
research,
i n v e s t i g a t e s the e f f e c t s of a l t e r n a t i v e treatments of a given
medical condition on the eventual outcomes r e a l i z e d by the
patient.
Evaluating the e f f e c t s of medical care on p a t i e n t
outcomes i s not a new idea. However, i t has r e c e n t l y received
increased emphasis because of concerns for the q u a l i t y and the
c o s t of medical care.
31. Waller A, " P a t i e n t s ' Rights I s s u e s " from "Legal Aspects of
Computer Based Patient Records and Record Systems", The Computet—
Based P a t i e n t Record, I n s t i t u t e of Medicine. 1991.
32. Westin AF, op. c i t . , 1992:60.
33.
34.
33
�Clinton Presidential Records
Digital Records Marker
This is not a presidential record. This is used as an administrative
marker by the William J. Clinton Presidential Library Staff.
This marker identifies the place of a tabbed divider. Given our
digitization capabilities, we are sometimes unable to adequately
scan such dividers. The title from the original document is
indicated below.
Divider Title:
JL
�TAB 3
�THE PHYSICIAN-PATIENT RELATIONSHIP
Ezekiel Emanuel and Linda Emanuel
Recent discussions of the physician-patient relationship have usually been presented as
a stark divide between patient autonomy and physician paternalism. This paper tries to re-think
the physician-patient relationship by delineating four ideal types. All the models have a role for
autonomy, but as distinguished by different understandings of the nature of patient autonomy.
The paper rejects the conventional view of patient autonomy developed over the last two
decades by patient advocates and the law especially in decisions on informed consent because
1) it has a faulty view of autonomy as control, 2) it has a faulty view that patients have fixed
and known values, and 3) it reduces physicians to mere technicians executing the patient's
wishes.
Instead the paper advocates what is called a deliberative ideal of the physician-patient
relationship in which physicians help patients articulate their values and then the physician tries
to persuade patients of what course of action would realize the highest or best values. The ideal
of autonomy here is not control but moral development and better self-understanding by patients.
The deliberative ideal of the physician-patient relationship has several important
implications for reforming the health care system including: 1) emphasizing primary care
physicians who have long term relationships with their patients and have time to discuss values
with their patients, 2) changes in the standards of informed consent and malpractice to emphasize
patient understanding rather than information transfer, and 3) shift in our conception of patient
autonomy from control to self-understanding and moral development.
INFORMATIVE
INTERPRETIVE
DELIBERATIVE
PATERNALISTIC |
Patient Values
Defined,fixedand
known to the
patient
Inchoate and
conflicting
requiring
clarification
Open to
development and
revision through
deliberation
Shared by physician
and patient
Patient
Autonomy
Choice of and
control over
medical care
Increased selfunderstanding
Moral development
Assenting to
objective values
Physician
Obligations
Providing factual
information and
implementing the
patient's wishes
Elucidating and
interpreting the
patient's values in
the medical context
Articulating worthy
values and
persuading the
patient to pursue
these in the
medical context
Promoting the
patient's well-being
independent of the
patient's current
preferences
�Special Communication H M ^ ^ B ^ ^ H ^
Four Models of the
Physician-Patient Relationship
Ezekiel J. Emanuel, MD, PhD, Linda L. Emanuel, MD, PhD
DURING the last two decades or so,
there has been a struggle over the patient's role in medical decision making
that is often characterized as a conflict
between autonomy and health, between
the values of the patient and the values
of the physician. Seeking to curtail physician dominance, many have advocated
an ideal of greater patient control. Others question this ideal because it fails to
acknowledge the potentially imbalanced
nature of this interaction when one party
is sick and searching for security, and
when judgments entail the interpretation of technical information. Still others are trying to delineate a more mutual
relationship. ' This struggle shapes the
expectations of physicians and patients as
well as the ethical and legal standards for
the physician's duties, informed consent,
and medical malpractice. This struggle
forces us to ask, What should be the ideal
physician-patient relationship?
We shall outline four models of the
physician-patient interaction, emphasizing the different understandings of (1)
the goals of the physician-patient interaction, (2) the physician's obligations,
(3) the role of patient values, and (4) the
conception of patient autonomy. To elaborate the abstract description of these
four models, we shall indicate the types
of response the models might suggest in
a clinical situation. Third, we shall also
indicate how these models inform the
current debate about the ideal physicianpatient relationship. Finally, we shall
evaluate these models and recommend
one as the preferred model.
As outlined, the models are Weberian
ideal types. They may not describe any
particular physician-patient interactions
but highlight, free from complicating details, different visions of the essential
characteristics of the physician-patient
1
14
6 6
Fiom tne Division ol Cancer Epidemiology and
Control, Dana-FarDer Cancer institute. Boston, Mass
(E.J.E.): Program m Ethics and the Professions,
Kennedy School of Government Harvard University.
Cambridge. Mass (E.J.E and L L.E.): and Division of
Medical Ethics. Harvard Medical School. Boston. Mass
(L.L.E.) L.L.E is also a Teaching and Research
Scholar of the American College ol Physicians
Reprint reduests to Division of Cancer Epidemiology
and Control. Dana-Faroer Cancer Institute, 44 Binney
Si. Boston. MA 021 15 (Dr E J Emanuel).
J A M A , April 22/29. 1 9 9 2 - V o l 2 6 7 , No. 16
7
interaction. Consequently, they do not
embody minimum ethical or legal standards, but rather constitute regulative
ideals that are "higher than the law" but
not "above the law." "
1
THE PATERNALISTIC MODEL
First is the paternalistic model, sometimes called the parental or priestly
model. In this model, the physician-patient interaction ensures that patients
receive the interventions that best promote their health and well-being. To
this end, physicians use their skills to
determine the patient's medical condition and his or her stage in the disease
process and to identify the medical tests
and treatments most likely to restore
the patient's health or ameliorate pain.
Then the physician presents the patient
with selected information that will encourage the patient to consent to the
intervention the physician considers
best. At the extreme, the physician authoritatively informs the patient when
the intervention will be initiated.
The paternalistic model assumes that
there are shared objective criteria for
determining what is best. Hence the
physician can discern what is in the patient's best interest with limited patient
participation. Ultimately, it is assumed
that the patient will be thankful for decisions made by the physician even if he
or she would not agree to them at the
time." In the tension between the patient's autonomy and well-being, between choice and health, the paternalistic physician's main emphasis is toward the latter.
In the paternalistic model, the physician acts as the patient's guardian, articulating and implementing what is best for
the patient. As such, the physician has obligations, including that of placing the patient's interest above his or her own and
soliciting the views of others when lacking
adequate knowledge. The conception of
patient autonomy is patient assent, either
at the time or later, to the physician's determinations of what is best.
9
10
THE INFORMATIVE MODEL
Second is the infonnatiue model,
sometimes called the scientific," engi-
10
neering, or consumer model. In this
model, the objective of the physicianpatient interaction is for the physician
to provide the patient with all relevant
information, for the patient to select the
medical interventions he or she wants,
and for the physician to execute the selected interventions. To this end, the
physician informs the patient of his or
her disease state, the nature of possible
diagnostic and therapeutic interventions, the nature and probability of risks
and benefits associated with the interventions, and any uncertainties of knowledge. At the extreme, patients could
come to know all medical information
relevant to their disease and available
interventions and select the interventions that best realize their values.
The informative model assumes a
fairly clear distinction between facts and
values. The patient's values are well defined and known; what the patient lacks
is facts. It is the physician's obligation
to provide all the available facts, and
the patient's values then determine what
treatments are to be given. There is no
role for the physician's values, the physician's understanding of the patient's
values, or his or her judgment of the
worth of the patient's values. In the
informative model, the physician is a
purveyor of technical expertise, providing the patient with the means to exercise control. As technical experts, physicians have important obligations to provide truthful information, to maintain
competence in their area of expertise,
and to consult others when their knowledge or skills are lacking. The conception of patient autonomy is patient control over medical decision making.
1
I
THE INTERPRETIVE MODEL
The third model is the interpretive
model. The aim of the physician-patient
interaction is to elucidate the patient's
values and what he or she actually wants,
and to help the patient select the available medical interventions that realize
these values. Like the informative physician, the interpretive physician provides the patient with information on
the nature of the condition and the risks
and benefits of possible interventions.
The Physician-Patient Relationship — E m a n u e l & Emanuel
Reprinted Irom JAMA » 77M Journal ol the American Medical Assodation
April 2229, 1992 Volume 267
Copyright 1992. American Medical Assodation
2221
I
�I
Comparing the Four Models
Interpretive
Informative
Paternalistic
Deliberative
Patient values
Defined, fixed, and known to the
patient
Inchoate and conflicting, requiring elucidation
Open to development and revision through moral discussion
Objective and shared by physician and patient
Physician's
obligation
Providing relevant factual information and implementing patient's selected intervention
Elucidating and interpreting relevant patient values as well as
informing the patient and implementing the patient's selected intervention
Articulating and persuading the
patient of the most admirable
values as well as informing
the patient and implementing
the patient's selected intervention
Promoting the patient's wellbeing independent of the patient's current preferences
Conception ot
patient's autonomy
Choice of. and control over,
medical care
Self-understanding relevant to
medical care
Moral self-development relevant
to medical care
Assenting to obiective values
Conception of
physician's role
Competent technical expert
Counselor or adviser
Friend or teacher
Guardian
Beyond this, however, the interpretive
physician assists the patient in elucidating and articulating his or her values
and in determining what medical interventions best realize the specified values, thus helping to interpret the patient's values for the patient.
According to the interpretive model,
the patient's values are not necessarily
fixed and known to the patient. They
are often inchoate, and the patient may
only partially understand them; they
may conflict when applied to specific
situations. Consequently, the physician
working with the patient must elucidate
and make coherent these values. To do
this, the physician works with the patient to reconstruct the patient's goals
and aspirations, commitments and character. At the extreme, the physician
must conceive the patient's life as a narrative whole, and from this specify the
patient's values and their priority.
Then the physician determines which
tests and treatments best realize these
values. Importantly, the physician does
not dictate to the patient; it is the patient who ultimately decides which values'and course of action best fit who he
or she is. Neither is the physician judging the patient's values; he or she helps
the patient to understand and use them
in the medical situation.
In the interpretive model, the physician is a counselor, analogous to a cabinet minister's advisory role to a head of
state, supplying relevant information,
helping to elucidate values and suggesting what medical interventions realize
these values. Thus the physician's obligations include those enumerated in
the informative model but also require
engaging the patient in a joint process
of understanding. Accordingly, the conception of patient autonomy is self-understanding; the patient comes to know
more clearly who he or she is and how
the various medical options bear on his
or her identity.
1213
THE DELIBERATIVE MODEL
Fourth is the deliberative model. The
aim of the physician-patient interaction
is to help the patient determine and
2222
3n&
JAMA, April 22/29, 1992-Vol 267. No. 16
choose the best health-related values
that can be realized in the clinical situation. To this end, the physician must
delineate information on the patient's
clinical situation and then help elucidate
the types of values embodied in the available options. The physician's objectives
include suggesting why certain healthrelated values are more worthy and
should be aspired to. At the extreme,
the physician and patient engage in deliberation about what kind of healthrelated values the patient could and ultimately should pursue. The physician
discusses only health-related values, that
is, values that affect or are affected by
the patient's disease and treatments; he
or she recognizes that many elements of
morality are unrelated to the patient's
disease or treatment and beyond the
scope of their professional relationship.
Further, the physician aims at no more
than moral persuasion; ultimately, coercion is avoided, and the patient must
define his or her life and select the ordering of values to be espoused. By engaging in moral deliberation, the physician and patient judge the worthiness
and importance of the health-related values.
In the deliberative model, the physician acts as a teacher or friend, engaging the patient in dialogue on what
course of action would be best. Not only
does the physician indicate what the patient could do, but, knowing the patient
and wishing what is best, the physician
indicates what the patient should do,
what decision regarding medical therapy would be admirable. The conception of patient autonomy is moral selfdevelopment; the patient is empowered
not simply to follow unexamined preferences or examined values, but to consider, through dialogue, alternative
health-related values, their worthiness,
and their implications for treatment.
11
COMPARING THE FOUR MODELS
The Table compares the four models
on essential points. Importantly, all models have a role for patient autonomy; a
main factor that differentiates the models is their particular conceptions of pa-
tient autonomy. Therefore, no single
model can be endorsed because it alone
promotes patient autonomy. Instead the
models must be compared and evaluated, at least in part, by evaluating the
adequacy of their particular conceptions
of patient autonomy.
The four models are not exhaustive.
At a minimum there might be added a
fifth: the instrumental model. In this
model, the patient's values are irrelevant; the physician aims for some goal
independent of the patient, such as the
good of society or furtherance of scientific knowledge. The Tuskegee syphilis
experiment " and the Willowbrook hepatitis study " are examples of this
model. As the moral condemnation of
these cases reveals, this model is not an
ideal but an aberration. Thus we have
not elaborated it herein.
15
17
1
19
A CLINICAL CASE
To make tangible these abstract descriptions and to crystallize essential differences among the models, we will i l lustrate the responses they suggest in a
clinical situation, that of a 43-year-old
premenopausal woman who has recently
discovered a breast mass. Surgery reveals a 3.5-cm ductal carcinoma with no
lymph node involvement that is estrogen receptor positive. Chest roentgenogram, bone scan, and liver function
tests reveal no evidence of metastatic
disease. The patient was recently divorced and has gone back to work as a
legal aide to support herself. What
should the physician say to this patient?
In the paternalistic model a physician
might say, "There are two alternative
therapies to protect against recurrence
of cancer in your breast: mastectomy or
radiation. We now know that the survival with lumpectomy combined with
radiation therapy is equal to that with
mastectomy. Because lumpectomy and
radiation offers the best survival and
the best cosmetic result, it is to be preferred. I have asked the radiation therapist to come and discuss radiation treatment with you. We also need to protect
you against the spread of the cancer to
other parts of your body. Even though
The Physician-Patient Relationship —Emanuel & Emanuel
�the chance of recurrence is low, you are
young, and we should not leave any therapeutic possibilities untried. Recent
studies involving chemotherapy suggest
improvements in survival without recurrence of breast cancer. Indeed, the
National Cancer Institute recommends
chemotherapy for women with your type
of breast cancer. Chemotherapy has side
effects. Nevertheless, a few months of
hardship now are worth the potential
added years of life without cancer."
In the informative model a physician
might say, "With node-negative breast
cancer there are two issues before you:
local control and systemic control. For
local control, the options are mastectomy or lumpectomy with or without
radiation. From many studies we know
that mastectomy and lumpectomy with
radiation result in identical overall survival, about 80% 10-year survival.
Lumpectomy without radiation results
in a 30% to 40% chance of tumor recurrence in the breast. The second issue
relates to systemic control. We knowthat chemotherapy prolongs survival for
premenopausal women who have axillary nodes involved with tumor. The
role for women with node-negative
breast cancer is less clear. Individual
studies suggest that chemotherapy is of
no benefit in terms of improving overall
survival, but a comprehensive review of
all studies suggests that there is a survival benefit. Several years ago, the NCI
suggested that for women like yourself,
chemotherapy can have a positive therapeutic impact. Finally, let me inform
you that there are clinical trials, for
which you are eligible, to evaluate the
benefits of chemotherapy for patients
with node-negative breast cancer. I can
enroll you in a study if you want. I will
be happy to give you any further information you feel you need."
The interpretive physician might outline much of the same information as the
informative physician, then engage in
discussion to elucidate the patient's
wishes, and conclude, " I t sounds to me
as if you have conflicting wishes. Understandably, you seem uncertain how
to balance the demands required for receiving additional treatment, rejuvenating your personal affairs, and maintaining your psychological equilibrium. Let
me try to express a perspective that fits
your position. Fighting your cancer is
important, but it must leave you with a
healthy self-image and quality time outside the hospital. This view seems compatible with undergoing radiation therapy but not chemotherapy. A lumpectomy with radiation maximizes your
chance of surviving while preserving
your breast. Radiotherapy fights your
breast cancer without disfigurement.
JAMA. April 22/29. 1992-Vol 267. No 16
Conversely, chemotherapy would prolong the duration of therapy by many
months. Further, the benefits of chemotherapy in terms of survival are
smaller and more controversial. Given
the recent changes in your life, you have
too many new preoccupations to undergo
months of chemotherapy for a questionable benefit. Do I understand you? We
can talk again in a few days."
The deliberative physician might begin by outlining the same factual information, engage in a conversation to elucidate the patient's values, but continue,
"It seems clear that you should undergo
radiation therapy. It offers maximal survival with minimal risk, disfigurement,
and disruption of your life. The issue of
chemotherapy is different, fraught with
conflicting data. Balancing all the options, I think the*best one for you is to
enter a trial that is investigating the
potential benefit of chemotherapy for
women with node-negative breast cancer. First, it ensures that you receive
excellent medical care. At this point, we
do not know which therapy maximizes
survival. In a clinical study the schedule
of follow-up visits, tests, and decisions
is specified by leading breast cancer experts to ensure that all the women receive care that is the best available anywhere. A second reason to participate
in a trial is altruistic; it allows you to
contribute something to women with
breast cancer in the future who will face
difficult choices. Over decades, thousands of women have participated in
studies that inform our current treatment practices. Without those women,
and the knowledge they made possible,
we would probably still be giving you
and all other women with breast cancer
mastectomies. By enrolling in a trial you
participate in a tradition in which women
of one generation receive the highest
standard of care available but also enhance the care of women in future generations because medicine has learned
something about which interventions are
better. I must tell you that I am not
involved in the study; if you elect to
enroll in this trial, you will initially see
another breast cancer expert to plan
your therapy. I have sought to explain
our current knowledge and offer my recommendation so you can make the best
possible decision."
Lacking the normal interchange with
patients, these statements may seem
contrived, even caricatures. Nevertheless, they highlight the essence of each
model and suggest how the objectives
and assumptions of each inform a physician's approach to his or her patients.
Similar statements can be imagined for
other clinical situations such as an obstetrician discussing prenatal testing
or a cardiologist discussing cholesterolreducing interventions.
THE CURRENT DEBATE AND THE
FOUR MODELS
In recent decades there has been a
call for greater patient autonomy or, as
some have called it, "patient sovereignty,"- conceived as patient choice
and coii.trol over medical decisions. This
shift toward the informative model is
embodied in the adoption of business
terms for medicine, as when physicians
are described as health care providers
and patients as consumers. It can also
be found in the propagation of patient
rights statements, in the promotion of
living will laws, and in rules regarding
human experimentation. For instance,
the opening sentences of one law state:
"The Rights of the Terminally 111 Act
authorizes an adult person to control
decisions regarding administration of
life-sustaining treatment. . . . The Act
merely provides one way by which a
terminally-ill patient's desires regarding the use of life-sustaining procedures
can be legally implemented" (emphasis
added). Indeed, living will laws do not
require or encourage patients to discuss
the issue of terminating care with their
physicians before signing such documents. Similarly, decisions in "right-todie" cases emphasize patient control over
medical decisions. As one court put it-':
0
21
22
The right to refuse medical treatment is basic and fundamental. . . . Its exercise requires no one's approval. . . . [TJhecontrollivg decision belongs to a competent
informed patient. . . . It is not a medical
decision for her physicians to make. . . . It is
a moral and philosophical decision that, being a competent adult, is [the patient's]
alone, (emphasis added)
Probably the most forceful endorsement of the informative model as the ideal
inheres in informed consent standards.
Prior to the 1970s, the standard for informed
consent
was
"physician
based." *- Since 1972 and the Canterbury case, however, the emphasis has
been on a "patient-oriented" standard of
informed consent in which the physician
has a "duty" to provide appropriate medical facts to empower the patient to use his
or her values to determine what interventions should be implemented.-^'
1
26
7
True consent to what happens to one's self is
the informed exercise of a choice, and that
entails an opportunity to evaluate knowledgeably the options available and the risks
attendant upon each. . . . fl]t is the prerogative of the patient, not the physician, to determme. for himself the direction in which his
interests seem to lie. To enable the patient to
chart his course understandably, some familiarity with the therapeutic alternatives
and their hazards becomes essential.'-' (emphasis added)
The Physician-Patient Relationship—Emanuel & Emanuel
2223
I
�I
SHARED DECISION MAKING
Despite its dominance, many have
found the informative model "arid." "
The President's Commission and others
contend that the ideal relationship does
not vest moral authority and medical
decision-making power exclusively in the
patient but must be a process of shared
decision making constructed around
"mutual participation and respect." "
The President's Commission argues that
the physician's role is "to help the patient understand the medical situation
and available courses of action, and the
patient conveys his or her concerns and
wishes." ' Brock and Wartman stress
this fact-value "division of labor"—having the physician provide information
while the patient makes value decisions—by describing "shared decision
making'' as a collaborative process
2
2
21
fc
28
29
in which both physicians and patients make
active and essential contributions. Physicians bring their medical training, knowledge, and expertise—including an understanding of the available treatment
alternatives —to the diagnosis and management of patients' condition. Patients bring
knowledge of their own subjective aims and
values, through which risks and benefits of
various treatment options can be evaluated.
With this approach, selecting the best treatment for a particular patient requires the
contribution of both parties.
Similarly, in discussing ideal medical
decision making, Eddy"' argues for this
fact-value division of labor between the
physician and patient as the ideal:
It is important to separate the decision process into these two steps. . . . The first step
is a question of facts. The anchor is empirical evidence. . . . [T]he second step is a
question not of facts but of personal values or
preferences. The thought process is not analytic but personal and subjective. . . . [I]t
is the patient's preferences that should determine the decision. . . . Ideally, you and I
["the phy.siciansl are not in the picture. What
matters is what Mrs. Smith thinks.
This view of shared decision making
seems to vest the medical decisionmaking authority with the patient while
relegating physicians to technicians
"transmitting medical information and
using their technical skills as the patient
directs." Thus, while the advocates of
"shared decision making" may aspire toward a mutual dialogue between physician and patient, the substantive view informing their ideal reembodies the informative model under a different label.
Other commentators have articulated more mutual models of the physician-patient interaction. ''Prominent among these efforts is Katz' The
Silent World of the Doctor and Patient.
Relying on a Freudian view in which
self-knowledge and self-determination
211
5
:tl
2224
JAMA. April 22/29. 1992-Vol 267, No. 16
are inherently limited because of unconscious influences, Katz views dialogue as a mechanism for greater selfunderstanding of one's values and
objectives. According to Katz, this viewplaces a duty on physicians and patients
to reflect and communicate so that
patients can gain a greater selfunderstanding and self-determination.
Katz' insight is also available on
grounds other than Freudian psychological theory and is consistent with the
interpretive model.
111
OBJECTIONS TO THE
PATERNALISTIC MODEL
It is widely recognized that the paternalistic model is justified during emergencies when the time taken to obtain informed consent might irreversibly harm
the patient. -'" Beyond such limited circumstances, however, it is no longer tenable to assume that the physician and patient espouse similar values and views of
what constitutes a benefit. Consequently,
even physicians rarely advocate the paternalistic model as an ideal for routine
physician-patient interactions.
12
32
OBJECTIONS TO THE
INFORMATIVE MODEL
The informative model seems both descriptively and prescriptively inaccurate. First, this model seems to have no
place for essential qualities of the ideal
physician-patient relationship. The informative physician cares for the patient in the sense of competently implementing the patient's selected interventions. However, the informative physician lacks a caring approach that requires
understanding what the patient values
or should value and how his or her illness impinges on these values. Patients
seem to expect their physician to have
a caring approach; they deem a technically proficient but detached physician
as deficient, and properly condemned.
Further, the informative physician is
proscribed from giving a recommendation for fear of imposing his or her will
on the patient and thereby competing
for the decision-making control that has
been given to the patient. Yet, if one
of the essential qualities of the ideal physician is the ability to assimilate medical
facts, prior experience of similar situations, and intimate knowledge of the
patient's view into a recommendation
designed for the patient's specific medical and personal condition, "'then the
informative physician cannot be ideal.
Second, in the informative model the
ideal physician is a highly trained subspecialist who provides detailed factual information and competently implements the
patient's preferred medical intervention.
Hence, the informative model perpetu3
3
ates and accentuates the trend toward
specialization and impersonalization
within the medical profession.
Most importantly, the informative
model's conception of patient autonomy
seems philosophically untenable. The informative model presupposes that persons possess known and fixed values,
but this is inaccurate. People are often
uncertain about what they actually want.
Further, unlike animals, people have
what philosophers call "second order desires," that is, the capacity to reflect
on their wishes and to revise their own
desires and preferences. In fact, freedom of the will and autonomy inhere in
having "second order desires" and being able to change our preferences and
modify our identity. Self-reflection and
the capacity to change what we want
often require a "process" of moral deliberation in w-hich we assess the value
of what we want. And this is a process
that occurs with other people who know
us well and can articulate a vision of w^ho
we ought to be that we can assent to.
Even though changes in health or implementation of alternative interventions can have profound effects on what
we desire and how we realize our desires, self-reflection and deliberation play
no essential role in the informative
physician-patient interaction. The informative model's conception of autonomy is
incompatible with a vision of autonomy
that incorporates second-order desires.
33-35
1:1
OBJECTIONS TO THE
INTERPRETIVE MODEL
The interpretive model rectifies this
deficiency by recognizing that persons
have second-order desires and dynamic
value structures and placing the elucidation of values in the context of the
patient's medical condition at the center
of the physician-patient interaction.
Nevertheless, there are objections to
the interpretive model.
Technical specialization militates
against physicians cultivating the skills
necessary to the interpretive model.
With limited interpretive talents and
limited time, physicians may unwittingly
impose their own values under the guise
of articulating the patient's values. And
patients, overwhelmed by their medical
condition and uncertain of their own
views, may too easily accept this imposition. Such circumstances may push the
interpretive model toward the paternalistic model in actual practice.
Further, autonomy viewed as self-understanding excludes evaluative judgment of the patient's values or attempts
to persuade the patient to adopt other
values. This constrains the guidance and
recommendations the physician can offer. Yet in practice, especially in pre-
The Physician-Patient Relationship—Emanuel & Emanuel
�1C
ventive medicine and risk-reduction interventions, physicians often attempt
Tsuade patients to adopt particular
h-related values. Physicians fre-ntly urge patients with high cholesD1 levels who smoke to change their
jtary habits, quit smoking, and begin
exercise programs before initiating drug
therapy. The justification given for these
changes is that patients should value
their health more than they do. Similarly, physicians are encouraged to persuade their human immunodeficiency virus (HlV)-infected patients who might
be engaging in unsafe sexual practices
either to abstain or, realistically, to adopt
"safer sex" practices. Such appeals are
not made to promote the HIV-infected
patient's own health, but are grounded
on an appeal for the patient to assume
responsibility for the good of others.
Consequently, by excluding evaluative
judgments, the interpretive model
seems to characterize inaccurately ideal
physician-patient interactions.
OBJECTIONS TO THE
DELIBERATIVE MODEL
The fundamental objections to the deliberative model focus on whether it is
proper for physicians to judge patients'
values and promote particular healthrelated values. First, physicians do not
sess privileged knowledge of the pri/ of health-related values relative to
•er values. Indeed, since ours is a
•alistic society in which people esuse incommensurable values, it is
likely that a physician's values and view
of which values are higher will conflict
with those of other physicians and those
of his or her patients.
Second, the nature of the moral deliberation between physician and patient, the physician's recommended interventions, and the actual treatments
used will depend on the values of the
particular physician treating the patient.
However, recommendations and care
provided to patients should not depend
on the physician's judgment of the worthiness of the patient's values or on the
physician's particular values. As one
bioethicist put it'"':
The hand is broken: the physician can repair
the hand; therefore the physician must repair the hand — s well as possible —without
a
regard to personal values that might lead the
physician to think ill of the patient or of the
patient's values. . . . [Alt the level of clinical
practice, medicine should be value-free in
the sense that the personal values of the
physician should not distort the making of
-medical decisions.
"hird, it may be argued that the dejrative model misconstrues the pur> of the physician-patient interac. Patients see their physicians to
JAMA, April 22/29, 1992-Vol 267. No. 16
receive health care, not to engage in
moral deliberation or to revise their
values. Finally, like the interpretive
model, the deliberative model may easily metamorphose into unintended paternalism, the very practice that generated the public debate over the
proper physician-patient interaction.
THE PREFERRED MODEL AND THE
PRACTICAL IMPLICATIONS
Clearly, under different clinical circumstances different models may be appropriate. Indeed, at different times all
four models may justifiably guide physicians and patients. Nevertheless, it is
important to specify one model as the
shared, paradigmatic reference; exceptions to use other models w-ould not be
automatically condemned, but would require justification based on the circumstances of a particular situation. Thus,
it is widely agreed that in an emergency
where delays in treatment to obtain informed consent might irreversibly harm
the patient, the paternalistic model correctly guides physician-patient interactions. Conversely, for patients who have
clear but conflicting values, the interpretive model is probably justified. For instance, a 65-year-old woman who has
been treated for acute leukemia may have
clearly decided against reinduction chemotherapy if she relapses. Several
months before the anticipated birth of her
first grandchild, the patient relapses. The
patient becomes torn about whether to
endure the risks of reinduction chemotherapy in order to live to see her first
grandchild or whether to refuse therapy,
resigning herself to not seeing her grandchild. In such cases, the physician may
justifiably adopt the interpretive approach. In other circumstances, where
there is only a one-time physician-patient
interaction without an ongoing relationship in which the patient's values can be
elucidated and compared with ideals,
such as in a walk-in center, the informative model may be justified.
Descriptively and prescriptively, we
claim that the ideal physician-patient
relationship is the deliberative model.
We will adduce six points to justify this
claim. First, the deliberative model more
nearly embodies our ideal of autonomy.
It is an oversimplification and distortion
of the Western tradition to view respecting autonomy as simply permitting a
person to select, unrestricted by coercion, ignorance, physical interference,
and the like, his or her preferred course
of action from a comprehensive list of
available options. ' Freedom and control over medical decisions alone do not
constitute patient autonomy. Autonomy
requires that individuals critically assess their own values and preferences;
34 3 r
determine w hether they are desirable;
affirm, upon reflection, these values as
ones that should justify their actions;
and then be free to initiate action to
realize the values. The process of deliberation integral to the deliberative
model is essential for realizing patient
autonomy understood in this way.
Second, our society's image of an ideal
physician is not limited to one who knows
and communicates to the patient relevant factual information and competently implements medical interventions. The ideal physician —often embodied in literature, art, and popular
culture —is a earing physician who integrates the information and relevant
values to make a recommendation and,
through discussion, attempts to persuade the patient to accept this recommendation as the intervention that best
promotes his or her overall well-being.
Thus, we expect the best physicians to
engage their patients in evaluative discussions of health issues and related values. The physician's discussion does not
invoke values that are unrelated or tangentially related to the patient's illness
and potential therapies. Importantly,
these efforts are not restricted to situations in which patients might make "irrational and harmful" choices-" but extend to all health care decisions.
9
Third, the deliberative model is not a
disguised form of paternalism. Previously there may have been category mistakes in which instances of the deliberative model have been erroneously identified as physician paternalism. And no
doubt, in practice, the deliberative physician may occasionally lapse into paternalism. However, like the ideal
teacher, the deliberative physician attempts to persuade the patient of the worthiness of certain values, not to impose
those values patemalistically; the physician's aim is not to subject the patient to
his or her will, but to persuade the patient
of a course of action as desirable. In the
Laws, Plato characterizes this fundamental distinction between persuasion
and imposition for medical practice that
distinguishes the deliberative from the
paternalistic model:
37
A physician to slaves never gives his patient
any account of his illness . . . the physician
offers some orders gleaned from experience
with an air of infallible knowledge, in the
brusque fashion of a dictator. . . . The free
physician, who usually cares for free men,
treats their diseases first by thoroughly discussing with the patient and his friends his
ailment. This way he learns something from
the sufferer and simultaneously instructs him.
Then the physician does not give his medications until he has persuaded the patient; the
physician aims at complete restoration of
health by persuading the patient to comply
with his therapy.
The Physician-Patient Relationship-Emanuel & Emanuel
2225
I
�Fourth, physician values are relevant
to patients and do inform their choice of
a physician. When a pregnant woman
chooses an obstetrician who does not
routinely perform a battery of prenatal
tests or, alternatively, one who
strongly favors them; when a patient
seeks an aggressive cardiologist who
favors procedural interventions or one
who concentrates therapy on dietary
changes, stress reduction, and life-style
modifications, they are, consciously or
not, selecting a physician based on the
values that guide his or her medical decisions. And, when disagreements between physicians and patients arise,
there are discussions over which values
are more important and should be realized in medical care. Occasionally, when
such disagreements undermine the
physician-patient relationship and a
caring attitude, a patient's care is transferred to another physician. Indeed, in
the informative model the grounds for
transferring care to a new physician is
either the physician's ignorance or incompetence. But patients seem to
switch physicians because they do not
"like" a particular physician or that
physician's attitude or approach.
Fifth, we seem to believe that physicians should not only help fit therapies
to the patients' elucidated values, but
should also promote health-related values. As noted, we expect physicians to
promote certain values, such as "safer
sex" for patients with HIV or abstaining from or limiting alcohol use. Similarly, patients are willing to adjust their
values and actions to be more compatible with health-promoting values.
This is in the nature of seeking a caring
medical recommendation.
Finally, it may well be that many physicians currently lack the training and capacity to articulate the values underlying
their recommendations and persuade patients that these values are worthy. But,
in part, this deficiency is a consequence of
the tendencies toward specialization and
the avoidance of discussions of values by
physicians that are perpetuated and justified by the dominant informative model.
Therefore, if the deliberative model
seems most appropriate, then we need to
implement changes in medical care and
education to encourage a more caring approach. We must stress understanding
rather than mere provisions of factual information in keeping with the legal standards of informed consent and medical
malpractice; we must educate physicians
not just to spend more time in physicianpatient communication but to elucidate
and articulate the values underlying their
medical care decisions, including routine
ones; we must shift the publicly assumed
conception of patient autonomy that
38
2226
shapes both the physician's and the patient's expectations from patient control
to moral development. Most important,
we must recognize that developing a deliberative physician-patient relationship
requires a considerable amount of time.
We must develop a health care financing
system that properly reimburses—
rather than penalizes—physicians for
taking the time to discuss values with
their patients.
CONCLUSION
Over the last few decades, the discourse regarding the physician-patient
relationship has focused on two extremes: autonomy and paternalism.
Many have attacked physicians as paternalistic, urging the empowerment of
patients to control their own care. This
view, the informative model, has become dominant in bioethics and legal
standards. This model embodies a defective conception of patient autonomy,
and it reduces the physician's role to
that of a technologist. The essence of
doctoring is a fabric of knowledge, understanding, teaching, and action, in
which the caring physician integrates
the patient's medical condition and
health-related values, makes a recommendation on the appropriate course of
action, and tries to persuade the patient
of the worthiness of this approach and
the values it realizes. The physician with
a caring attitude is the ideal embodied
in the deliberative model, the ideal that
should inform laws and policies that regulate the physician-patient interaction.
Finally, it may be worth noting that the
four models outlined herein are not limited to the medical realm; they may inform the public conception of other professional interactions as well. We suggest
that the ideal relationships between lawyer and client," religious mentor and laity, and educator and student are well described by the dehberative model, at least
in some of their essential aspects.
We would like to thank Robert Mayer. MD.
Craig Henderson. MD, Lynn Peterson, MD, and
John Stoeckle. MD. as well as Dennis Thompson,
PhD. Arthur Applbaum. PhD. and Dan Brock,
PhD. for their critical reviews of the manuscript.
We would also like to thank the "ethics and the professions" seminar participants, especially Robert
Rosen, JD, Francis Kamm. PhD. David Willdns. JD.
and Oliver Avens. who enlightened us in discussions.
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23. Boiiuia c Superior Court. 225 Cal Rptr 297
(1986).
24. Natanson c Kline, 350 P2d 1093 (Kan 1960).
25. Appelbaum PS, Lidz CW. Meisel A. Informed
Consent: Legal Theory and Clinical Practice. New
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J
r
The Physician-Patient Relationship —Emanuel & Emanuel
Printed and Published in the United States ol America
�Clinton Presidential Records
Digital Records Marker
This is not a presidential record. This is used as an administrative
marker by the William J. Clinton Presidential Library Staff.
This marker identifies the place of a tabbed divider. Given our
digitization capabilities, we are sometimes unable to adequately
scan such dividers. The title from the original document is
indicated below.
Divider Title:
M
�TAB 4
ABSTRACT
Baily, Mary Ann, " Rationing Medical Care "
Describes a process for defining adequacy of health care, e.g. decent minimum.
Viewed as problematic because of difficulty achieving consensus in pluralistic society and
because physicians generally consider it unethical to set care in accord with costs. Baily
asserts that a delivery system based on a decent minimum requires limits to be set in accord
with costs. There is also no consensus on how much patients should be told about the limits
on care imposed to conserve resources. The article does not rely upon one ethical theory.
Baily notes the common theme of the importance of health care and its dependence upon an
individual's health condition. Recommends that care must vary according to individual need.
Points to the critical importance of the components of definitions of adequacy and to the
process undertaken to do so.
�427
c same time, the public must be
ence.
Original paper
: fairest way to pay for care is
-hould pay more than the poor,
more than those that earn less,
ihrough the income tax system,
ny, may need additional help in
ETHICS AND MEDICAID:
A NEW LOOK AT AN OLD PROBLEM
1
MARILYN L. BACH, Ph.D.
CHARLES N. OBERG, M.D.
NICHOLAS A. BRYANT
JERI L. BOLEMAN
urance program that recognizes
gether under the same insurance
lot a privilege.
2
3
1
IX-partmcnt of Commerce, 1991.
cs<.'ll-out. The Washington Post 1991 Oct
Abstract: Recent proposals to reform Medicaid, driven primarily by the
need for cost containment, rarely pay explicit attention tovalues. Thispaper
presents tfie Medicaid Values Framework, the authors' interpretation of a set
of societal ideals embodied in Title XIX of the Social Security Amendments of
1965. The Framework comprises seven interlocking values that are stratified
into three interdependent tiers—access, quality, and equity. We use the access
and equity tiers to analyze treatment of Aid to Families with Dependent
Children (AFDC) and Supplemental Security Income (SSI) recipients under
Medicaid. We document striking inequities in eligibility standards and in
funding for the twogroups—inequities that unexpectedly fail to translate into
marked disparities in access to Medicaid. In conclusion, we comment on why
the present inequities exist and why they are ethically unacceptable.
Key uvrds: Access to health services; Medicaid; medical ethics
! States. Washington, DC U.S. General
C: U.S. Coiigression.il Research Service,
1
OF MEDICAID, which serves 24 million of our most disadvantaged
and politically vulnerable citizens, has climbed to over 10 percent of the
H E COST
' Department of Laboratory Medicine and Pathology, Medical School and DivLsion of Health
Services Research and Policy, School of Public Health, University of Minnesota, Box 724, UMHC,
420 Delaware Street S.E., Minneapolis, M N 55455
Department of Pediatrics, University of Minnesota Medical School, Hennepin County Medical
Center, 701 Park Avenue, Minneapolis, MN 55415
Center for Biomedical Ethics, University of Minnesota, Box 724, UMHC, 420 Delaware Street
S.E., Minneapolis, M N 55455
:
5
journal of Health Care for the Poor and Underserved, Vol. 2, No. 4, Spring 1992
�Bach, Oberg, Bryant, et al.
Ethics and Medicaid
428
national health care expenditures in the pas,: decade w th the stato share
projected to climb from $51 billion in 1992 to $95 bill,on by 199/. The
overwhelming magnitude of this escalation is sparkmg heated debate and
stim^htinc numerous proposals for reform, the most sahent of wh,ch .s
P c s - J e t Bush's recent p r o ^ s a l tocap Medicaid allocation/ These m.t.atjvej.
crafted in an environment that is dominated by the need for cos containment
re v pay explicit attention to values-the ethical tenets that relate directly to
ever. The proposed framework is intended toprovideanethicalcounterbalance
to guide the advocacy and development of health care initiatives for the
underserved. Because this framework is focused on the interface between the
underserved recipient and government, it does not include values that are
associated withotheractors in the health caresystem. The President's Commission for the Study of Ethical Problems in Medicine in 1983 supports this
perspective: "...efforts to contain rising health care costs are important but
should not focuson limiting theattainment of equitable access for the least wellserved portion of the public."
TheSocial Security Amendments of 1965, a product of President Johnson's
Great Society programs, were enacted during an era of unparalleled idealism—
idealism reflected in seven values that appear in Title IX of the Amendments.
(See Appendix for relevant statutory excerpts.) The Medicaid Values Framework stratifies these seven interlocking healthcare values in to three interdependent tiers. The three tiers represent idealized stages that are inherent in the
delivery of health care services (Figure 1). The values liberalization of eligibility
10
^ n n c p l e s thai o f f ^ broad guidelines for the ethical delivery o P - e n -day
health care services. In contrast, our research .s based on historical and
i i s b t veanalys.s. Itallowsustoconstructaframeworkofvaluesrootedmthe
Z o n ' s historical, social, legislative, and ethical fabric. Moreover, our framework depicts the complex and highly interactive nature of the
The delivery of health care services for the underserved. Webeheve that this
i T r t fodarify the ethical ideals present in major stages of health care delivery,
and to^view the transaction from Ihe pcrspecti ve of the u nderserved, represents
FIGURE 1
MEDICAID VALUES FRAMEWORK
The Equity Tier
a n 0 n
?h:lSr^eare oposing-theMed,caidya,uesPramewor^s
our interpretation of a set of societal ideals derived from four mapr
stahUorv language of Title XIX of the Social Security Amendments of 1965 a
ev^ew of Vu- Handbook of Public Assistance Admin,strat,on ubhshcd by the
ederal government to provide guidance to the states in administenng the,r
Medicaid programs; an analysis of Congressional committee reports; and a
review of relevant Senate and House committee hearings preceding enactment
p r
?
V a l u c s ^ ^
work approach to analyze selected facets of the Medicaid program f om 1965 to
U,e present. In conclusion, we will offer a summahon of our findings and a
commentary.
Values and health care: The Medicaid Values Framework
American health care embodies a number of values (cost^ffectiveness
e f f i c i e n t federalism, physician autonomy, etc.) that reflect the interests of
provTdcS p o l i c y m a k e r ' a d ^
health care s v '
^'ven present-day cost pressures, which create d sinccn
Uvel to o r o ^
re for the underserved, it is our belief that a set of ethical
values tJguiu
.formofourhealthcaresystemismoreimportantnowthan
429
The Quality Tier
The Access Tier
Encompasses assistance and geographic accessibility.
�430
Bach, Oberg, Bryant, et al.
Ethics and Medicaid
(elixibility) and access constitute the first her ("access") of the Framework The
ta t c s / o n f i d c M i t y . recipient choice, broadening scope of care (scope o care) a n ,
ZaUty assurance (quality) represent the second tier ("quahty ). The third her
C
tv") contains the value equality of care, the fundamental and culminating
d e f f l t e Framework, which is attained through the aggregate interaction of
he values in the preceding tiers. It is important to stress that the values m t h *
F amework are a'set of ideals^thica. goals that ought to be stnved for, which
differ from operational values-values that are actually in effec t.
The access tier. Eligibility and access are the values in the first tier of the
Framelork 1 Z cess t,er, and'represent the initial stages by which a pojenha
r c o p S t enters the health care system. Because a potential recipient must
financial and c a ^ ^
Sgibility is the f.rst requisite to access. The eligibility language of Titk. XIX
directed the states to "liberalize" eligibility requirements and to^e tab . h
eligibility criteria that were "reasonable," "consistent," and "comparable for all
croups" within Medicaid."
«;«;
The health care value access has two distinct dimensions: recipient assis
tance and geographic accessibility. The assistance dimension of access rcflec s
he suppoft and attentiveness that current or potential health care rec,p,ems
houldTcei ve when attempting to secure health care. Despite a dear. W t o y
directive ("assistance shall be furnished...to all individuals wishing to make
application for medicalassis*^^
mon assistance barriers to access include the stigma associated with welfare
programs, complicated eligibility forms, a lack of awareness or understanding
K
program benefits, language incompatibility between providers and patients and lengthy enrollment procedures.
_
Geographic accessibility encompasses the reduction o physical ton*
c^longLancesbetweenpaticntsai^
UnsporLo^noncentr^
care The Congressional framers were mindful of these barners when they
d ' e c t c ^ h a t state plans for administering Medicaid "shall be in effect in all
political subdivisions of the state."
The quality tier. The quality tier is the intermediary stage from the access
tie.totheecluityLandreprUntsthenextplateauinthedeliveryofhealthcare
e ^c s U indudes the values confidentiality, recipient choice, scope ofc™>, and
™ X Title XIX augmented and employed these quahty-ennchmg health care
v Z e s that were found in previous legislation, because ,t sought to provide
Ic ess to the mainstream of medicine for the nation s poor.- However he
values of eligibility and access continue to play an instrumental role in the
delivew of hfalth "are as the recipient progresses to the quality tier; even after
a Z Z cnu
Medicaid program, a cessation in either of the access-tier
values will i
-ly negate the recipient's access to the quality tier.
a
13
431
The value confidentiality, explicitly recorded in Title XIX as a safeguard
restricting "the use or disclosure of information...to purposes directly connected with the administration of [Medicaid]," provides a bridge between the
access tier and the quality tier because it plays an integral role in both tiers.
Confidentiality entails the right of an individual to protect and control personal
information, and includes the concurrent obligation of others to respect the
confidentiality of an individual's records.
Although a recipient can gain
access to health care without the protection of confidentiality, confidentiality is
an essential value for high-quality health care.
The values recipient choice and scope of care are closely related. Recipient
choice is predicated on respect for a health care recipient's autonomy and
addresses the freedomof an individual to choose from among alternative plans
of health care. Scope of care refers to a comprehensive array of effective
preventive and other medical services sufficient to provide a "decent basic
minimum" of care. Title XIX required the states to expand their scope of care
to include five basic services: inpatient hospital services, outpatient hospital
services, laboratory and x-ray services, skilled-nursing home services, and
physician services." By 1975, state plans were to indude all preventive,
diagnostic, curative,andrehabiIitativeservicesor goods "furnished, prescribed
or ordered" by an accredited physician.
The preferences, values, and medical needs of individual recipients
cannot be respected without adequate recipient choice and scope of care.
Moreover, inordinate restrictions of recipient choice and scope of care inevitably create a polarity between the quality of medical care received by the poor
and that received by the rest of the population.
The value quality, bridging the tiers of quality and equity, amplifies the
mutually interactive impact of the values of confidentiality, scope of care, and
recipient choice. Quality also encompasses the structure, process, and outcome
measures used in the humane and respectful delivery of health care. In 1965,
policymakers understood quality to mean care delivered in accredited organizations by accredited health care personnel who are abreast of state-of-the-art
knowledge. '' The Handbook of Public Assistance Administration, developed by
federal welfare administrators to guide states in implementing Title XIX of the
Social Security Amendments of 1965, addresses quality in explicit language:
"The Congress has made very clear its intent that the medical and remedial care
and services made available to recipients under Ti tie XLX be of high quality and
in nowise [sic] inferior to that enjoyed by the rest of the population." '
715
16
17
18
7
1
1
The equity tier. Equity, that which is just or fair, is attained by assuring
individuals a "decent basic minimum." Equity as a goal in the provision of
health care was not incorporated into major health care legislation for diverse
segments of the poor prior to the Social Security Amendments of 1965. The
value equality of care, embodying the Medicaid princip'
< -'ty, is the
fundamental and culminating ideal of the Medicaid Values
,and has
two distinct dimensions. First, equitable treatment was to L.^ pi^ . .ued to the
17
20
�Bach, Oberg, Bryant, et al.
Ethics and Medicaid
432
various groups—families with dependent children, the aged, the blind, the
disabled, and others—receiving Medicaid. Second, Medicaid recipients were to
be provided with the same level of care available to the general population. "' - '
The goal of equality of care (comparability) among the different populations of Med icaid recipients is generally accepted. But experts differ sharply on
the second dimension of equality of care—that recipients be provided with
health care equivalent to that available to thegeneral population. The following
statutory citation provides support for our assertion that an ideal of Medicaid
was to provide Medicaid recipients with health care equivalent to that available
to the general population:
,2
g
2
Medical assistance madeavailable to individuals under Titles I, IV, X, XIV, and XV...shall
not be less in amount, duration, or scope than the medical or remedial services made
available to individuals not receiving aid or assistance under any such plan."
Although one can infer that this excerpt supports our broader definition
of equity, vagueness prevents a definitive ruling. For example, "individuals not
receivingaid" could refer to persons covered by either private insuranceornonMedicaid public insurance; the "amount, duration, or scope" of such services
can vary depending on which of the two populations one considers. This lack
of explicitness may leave our interpretation open to question. However, the
following citations from The Handbook of Public Assistance Administration further
support our interpretation:
433
Access and equity within Medicaid: 1965-1990
Although the values framework we have developed from the Social
Security Amendments of 1965 allowsa myriad of analytic options, we will limit
our analysis in this paper to the access tier and the first dimension of the equity
tier—equality of care between subgroups within Medicaid. Since the equity tier
represents the culmination of all of the values in the framework working in
Sg 8 <
measurement of the first dimension of the equity tier reflects the
combined impact of values from both the access tier and the quality tier.
Our analysis of Medicaid will focus on Aid to Families with Dependent
Children (AFDC) and Supplemental Security Income (SSI) populations, which
constihite over 90 percent of all Medicaid recipients. After using proxies
(financial eligibility, enrollment in Medicaid, case management, and denial
rates) to estimate theattainment of access-tier values for these two populations,
we will use expenditures as a broad proxy to evaluate the first dimension of the
equity tier—comparability between AFDC and SSI subgroups. It should be
noted that while the proxies we haveselected involve simplifyingassumptions,
they provide first-order measurement tools for the clarification and analysis of
this complex problem.
a
r c
a t e
o u r
24
The access tien Comparing AFDC and SSI eligibility standards, assistance barriers, and geographic factors. Since potential Medicaid recipients
must first meet the eligibility requirements of their respective cash-assistance
programs, AFDC and SSI, financial eligibility standardsconstitutea valid proxy
for Medicaid eligibility.
Stark disparities in eligibility exist today between Medicaid subgroups,
despite the emphasis on comparability in the Social Security Amendments of
1965. Many of the present disparities can be traced to the inception of the Social
Security Amendments of 1972. This legislation gave the SSI population—the
aged, the blind, and the disabled—a federal ceiling for their Income Benefit
Standard, the income that a potential SSI recipient may receive and still qualify
for program benefits. In contrast, the Standard of Need for potential AFDC
eligibles—pregnant women, children, and families with dependent c h i l d r e n was to be dictated solely by the individual states.* Table 1 shows the marked
discrepancies that exist between these standards today. The Income Benefit
Standard for the SSI population is indexed to keep pace with inflation and is
approximately 90 percent of the federal poverty level, whereas the average
AFDC Standard of Need is presently less than 50 percent of the poverty level.
The Omnibus Budget Reconciliation Act of 1981 (OBRA 1981), a major
cost-cutting vehicleof the Reagan Administration, further exacerbated disparities in Medicaid eligibility between the AFDC and SSI populations. OBRA 1981
25
The medical assistance made available must be sufficient in amount, duration, and scope
reasonable to achieve its purpose. A token service which can only be ineffective on the
one hand, and wasteful of funds on the other, will not be considered satisfactory.
Institutional care should not be less in amount than would be required by most of the
persons needing this kind of care."
The passage of Title XIX marks the beginning of a new era in the medical care for lowincome families. The potential of this new Title can hardly be over-estimated, as its
ultimate goal is the assurance of complete, continuous, family-centered medical care of
high quality to persons who are unable to pay for it themselves. The law aims much
higher than the mere paying of medical bills, and States, in order to achieve its high
purpose, will need to assume responsibility for planning and establishing systems of high
quality medical care, comprehensive in scope and wide in coverage. '
1
Because Title XIX and supporting administrative documents contain
many internal inconsistencies and contradictions, a definitive interpretation of
this title is extremely difficult. Moreover, the federal government left broad
discretion to the states, which served, in many instances, to obfuscate federal
goals—goals which were often not adequately supported either fiscally or
poli ticaily. Granting thecomplexity,ambiguity, and contradictions inherent in
the Social Secur
* mendments of 1965 and supporting documents, we maintain thatan id
leXlX was to provide Medicaid recipients with healthcare
equivalent to
vailablc to the general population.
• Income Benefit Standards and Standards of Need are similar. The
population; the second, to the AFDC population. An Income Disregard (1
term that is used for both populations.
o the SSI
juivalent
�434
.
Bach, Oberg, Bn/ant, et al.
Ethics and Medicaid
imposed selected restrictive eligibility requirements on the AFDC population
that modified provisions of the work incentive program, an in.t.ati vedesigned
o hasten the transition from welfare to gainful employment. These restrictions
were mandatory for all states and aimed primarily at famihes w.th earned
ncomTand oWer children (19-20 years old). OBRA 1981 also limited gross
- me or AFDC recipients to 150 percent of the state Standard of Need," For
" S S of states, the new AFDC standards relaxed eligibility requirements.
435
But for the majority,statee]igibility requirementsbecame much more stringent.
OBRA 1981 quickly eliminated 442,000 working families from the Medicaid
program. In contrast, the legislation did not target eligibility standards for the
SSI population.
The financial criteria used to determine eligibility for AFDC vary widely
from state to state. For example, in 1990, the AFE>C Standard of Need in Alaska
was 76.9 percent of the federal poverty level, strikingly different from Alabama's
standard of 13.4 percent of the federal poverty level. The National Governors'
Association found that the average Standard of Need as a percentage of the
federal poverty level decreased from 71 percent in June 1975 to 48 percent in
January 1986 to a level of 47.4 percent by 1990. '' In contrast, over the course
of the past two decades, SSI recipients have enjoyed annual cost-of-living
adjustments to maintain their eligibility and benefit standard at approximately
90 percent of the federal poverty level. This has significantly enhanced their
Medicaid eligibility.
Beginning in 1984, Congress passed a sequential cluster of legislative
proposals intended specifically to address the discrepancies in Medicaid eligibility between the SSI population and selected groups within the AFDC population. Data from the National Governors' Association show that as of July 1990,
all states and the District of Columbia had expanded their Medicaid programs
by creating more generous income limits for pregnant women and children.
Eighteen states and the District of Columbia had set their income threshold at
the maximum level of 185 percent of the federal poverty level and 27 states had
set it at 133 percent. Additionally, 46 states no longer review the assets of
pregnant women and their children when determining Medicaid eligibility.
But these liberalized eligibility guidelines apply primarily to pregnant
women and youngerchildren. Thus, most of theinordinateincquities resulting
from the Social Security Amendments of 1972 and OBRA 1981 have not been
adequately mitigated. With income thresholds for AFDC families and medically needy older children still stringent, there are currently major disparities in
eligibility standards not only between the SSI and AFDC populations but also
among AFDC subgroups.
As discussed, eligibility is an essential component of access. However,
eligibility alone does not preemptively determine Medicaid enrollment, because access is the net result of several interdependent factors. Access to
Medicaid can be significantly impeded by assistance barriers and geographic
factors, which clarifies why the significant differences in financial eligibility
standards for the potential AFDCandSSl populationsdocumented in thispaper
do not translate directly into parallel differences in Medicaid enrollment.
Both Medicaid subgroups, potential AFDC and SSI recipients alike, face
formidable barriers to access when attempting to secure health care through
Medicaid. In the following discussion, we assess access to Medicaid for the
AFDC and SSI populations. After presenting a broad overv'
'
^ss for
these two Medicaid subgroups, their accessibility to Medicaic
, with
respect to the Framework's access-tier values.
27
28
TABLE 1
A COMPARISON OF AFDC vs. SSI ELIGIBILITY STANDARDS
AFDC
Basis for eligibility
Standard of Need
Geographic
variability
Equivalence of
standards
Standard of Need varies
substantially from stale to state.
Restnctiveness of
income disregards"
Standard of Need has eroded
throughout the last two decades.
It is now less than 50 percent of
the federal poverty level.
Income Disregards" are more
restrictive, resulting in relatively
easy loss of AFDC and Medicaid
benefits:
. S30 in monthly earnings for 12
months and one-third of
remaining earnings for only
four consecutive months;
. S*) per month for workrelated expenses;
. SI75 per month per child for
child care.
No AFIX: family of three may
have a gross family income
above l.V percent of the state's
Standard of Need.
SSI
Income Benefit Standard
Income Benefit Standard has
been federally based since 1972.
Income Benefit Standard is
indexed annually to inflation
with a Cost of Living Adjustment. The 1984 level was 88.4
percent of the federal poverty
level.*
Income Disregards are more
generous, resulting in enhanced
eligibility for SSI and Medicaid
benefits:
• S20 of monthly income from
any source, plus the first S65 of
monthly earned income and
one-half ot remaining
earnings.
• Income Benefit Standard for eligible couples receiving SSI
" Income Disregard relates to the amount of mcome that a potential recipient may earn and still
^ ^come D.regard is no, counted agams, the Standard of Need or Income
^ " Z ^ i T v
j u n S n of ,
Income Disregau
Representatives. Background material and data on programs within the
I - on Ways .md Means. C o m m i t Pnn. W M C , 10,-4, March m<>.
.SH figures.
2
29
28
28
�436
Bach, Oberg, Bryant, et al.
Ethics and Medicaid
Enrollment in Medicaid, a proxy for overall access to the•P^gram,did not
keep pace with the total numberof persons living in poverty from 1972 to 1989.
In the 1980s there was a significant increase in the number of people living in
novertv and a concomitant failure of the Medicaid program to grant access to
£ s increasing number." In v e ^ recent years, efforts to broaden enrollment m
Medica d have brought modest improvements; in 1990, 45.2 percent of those
persons living in poverty were actually covered by the Medicaid program' , as
SmTa ed with 39.1 percent in 1980 and 41.0 percent in 1986.- Even w, h this
improvement, however. Medicaid falls far short of providing access to the large
nnmbor of novertv-stricken persons who need it.
Data on the numbc-r of persons living in poverty who are potentially
eliKibleforAFDCandSSIarenotreadilyaccessible^onsequently.itisdiff.cult
to compare access to Medicaid for the SSI and AFDC populations with a high
degree of precision. However, data on Medicaid participaton by age can be
used to estimate overall access to Medicaid between the AFDC and SSI populations based upon categorical eligibility.
Although Congress intended for Medicaid to ultimately serve all poor
non-elderly adults and children, the programs actually covered only 38.1
percent of non-elderly adults and 61.9 percent of children living in poverty in
W O All in all, fewer than half of the AFDC population who were po enhally
eligible for Medicaid actually had access to the program. Similarly, Medicaid
served only 30.4 percent of persons over the age of 65 living m poverty This
elderly population constitutes an estimated 50 percent of the SS population,
Despite recent attempts at liberalizing disability definitions for the SSI population the past two Administrations have imposed very restrictive categoncal
definitions for SSI eligibility, which limits this group's access to Medicaid^
These data support the conclusion that access to Medicaid ,s severely comprormsed for botMhe AFDC and the SSI populations, with the AFDC population
faring somewhat better than the SSI population. This is an unexpected finding,
given the clear advantage in financial eligibility enjoyed by potential SSI
437
and no expertise in guiding AFDC clients through the process of obtaining
services. I n con trast, persons in the SSI popula tion are much more likely to have
access to comprehensive case management services. For example, many states
use Medicaid Section 2176 Home and Community-Based Waivers, authorized
by Congress in OBRA 1981, to provide case management to persons who are at
riskof institutionalization. ' * Additionally, theConsolidated Omnibus Budget
Reconciliation Actof 1985 (COBRA 1985)alIowsstate Medicaid plans to include
optional case management to targeted subgroups such as the elderly, the
developmentally disabled, pregnant women, and persons with mental health
problems. Elderly persons have access to case management services funded
by other sources, such as Area Agencies on Aging, Medicare, HMOs, and the
Veteran's Administration. Finally, in several states, persons with developmental disabilities are eligible for and required to receive case management
services which may be funded by a combination of federal, state, and county
dollars.- "
States generally require that potential recipients apply for either the SSI
or AFDC program before applying for Medicaid. Applicants can be denied for
a variety of reasons which include failure to meet financial, categorical, or
procedural criteria. Many applicants, particularly those who are disadvantaged, requirespecial guidance tosuccessfully apply for AFDC orSSI. Thesheer
complexity of the application process presents a formidable procedural barrier
to access; denial rates in 1989 were 26 percent for AFDC applications and over
48 percent for SSI applications. During that year, 62 percent of all AFDC
applications that were denied were turned down for procedural reasons.
Denialsoccur in thcSSI population for both categorical and procedural reasons.
Measured by the proxy of denial rates, the AFDC population fares better than
does the SSI population. Thus, the striking disparities in eligibility standards
between AFDC and SSI are partially mitigated by the substantial disparities in
denial rates.'' '"
Geographic concerns are particularly relevant for the AFDC population
because of significant variations in Medicaid eligibility requirements and
benefits from state to state. Such variability can exacerbate difficulties that
potential recipients may ha vein applying for benefits, and can affect the benefits
they may recei ve—especially if the client moves from state to state or lives near
state lines. Consequently, eligibility standards for the AFDC and SSI programs
provide a valid proxy for the geographic component of access. Moreover, the
AFDC population is less likely to have a case manager to assist them in
overcoming geographic barriers.
Recent national statistics show marked urban/rural differentialsin Medicaid benefit levels, provider reimbursement, and provider participation.
Thc'se three categories of differentials, combined with the poor economic
environment in the rural United States, undoubtedly restrict "iral recipients'
access to Medicaid and quality health care. Although bot'
'ents in
Medicaid subgroupsareaffected by this relativeinaccessibil,
i AFDC
recipients living in these areas arc governed by strict state-to-state elicibilitv
15 3
37
38
1
0
43
r L > C i P 1
To'further explore this finding, and to continue our effort to measure
access to Medicaid, we will use theavailab.lity of case management and ratesof
denial for the AFDC and SSI programs as proxies for the
^
^
^
2
of access. This analysis employs a broad definition of case management tha
ircludcs assistance vvith the enrollment process itself • Certainly not all potcnhal
Medicaid recipients require case management to gam access to Medica^i
services butforthosewhoneedsuchassistance,casemanagementcanmeanthe
difference between success and failure. Thus, availability of case management
is a relevant proxy for assistance.
l,Uhecurrentsystem,theAFrX:populationisgenerallyatad sadvantage
in obtaining case management services. The person who most closely fills the
c.se manar
for AFDC clients is the financial worker who reviews an
applicant'.
.s to determine eligibility for the program. These workers
scTveanim,
..t role, but they typically have little background in healthcare
1
43
�Ethics and Medicaid
438
Bach, Oberg, Bn/ant, et al.
standards. The combination of these two factors renders potential AFDC
recipients in rural America among the most compromised with respect to
access.
The equity tien Comparing AFDC and SSI for equality of care. The
Social Security Amendments of 1972 marked not only a major divergence in
eligibility standards for potential AFDC and SSI populations, but also the
generation of sharp differences in expenditures between these Medicaid subgroups. In this section of the paper, we use expenditures as a proxy to assess
equality of care between Medicaid subgroups—the first dimension of this value.
The following review demonstrates that the Medicaid ideal of providing
equitable treatment to different Medicaid subgroups has not been realized.
Historically, AFDC recipients have constituted the largest subgroup of
the Medicaid population. Yet they have received a much smaller proportion of
Medicaid funds than do the aged and disabled. This is due in large part to
differences in the health care needs of AFDC and SSI populations. The elderly
have much higher disease rates and frequently require hospitalization, physician care, advanced technology, and nursing-home care. Aged and disabled
persons are also more apt than the AFDC population to require 24-hour longterm care. Consequently, the per capita cost of serving disabled or older
Medicaid recipients is typically higher than the per capita cost of serving AFDC
clients.'
Figure 2 depicts the expanding disparity that exists between the SSI and
AFDC subgroups. The sharp slope of the SSI curve suggests an exponential
growth in expenditures received, while the relatively constant slope of the
AFDC curve approximates a simple arithmetic function. For example, between
1972 and 1976, the average annual rate of increase in expenditures for the SSI
population was $1.38 billion per year, whereas the rate for the AFDC popula tion
was $0.65 billion per year. Between 1984 and 1988, expenditures for the SSI
population jumped $2.73 billion per year, while those for the AFDC population
rose modestly at an average annual rate of only $0.83 billion per year.
Since 1972, SSI subgroups have enjoyed disproportionate increases in
fundscompared to AFDCsubgroups—increases that farexceed theamountone
might expect even after considering the SSI population's higher per capita
health care needs. Data presented in Figure 3 show that the proportion of
Medicaid recipients who are from the SSI population has remained constant at
29 percent since the Social Security Amendments of 1972, while the expenditures allocated to this population have increased from just over 50 percent in
1972 to nearly 75 percent in 1988. Conversely, the proportion of Medicaid
recipients who are from the AFDC population has risen from 62 percent in 1972
to 68 percent in 1988. However, this population has experienced a concurrent
drop in the proportion of Medicaid expenditures allocated to AFEKZ. In 1972,
Medicaid exp' ' ures per capita for the SSI population were roughly three
times greatc
he per capita expenditures for the AFDC population. By
439
FIGURE 2
MEDICAID PAYMENTS BY SUBGROUP, 1972-1989
40,000 -i
35,000 -
30.000 -
25,000 c
o
5
2
20,000 -
o
o
15,000 -
11
-
:f
10,000 -
5.000 -
1970
1975
1980
Year
1985
1990
Source: Reference 25.
1988, Medicaid expenditures per capita for the SSI population were over seven
times greater than those of the AFDC population.
Figure 3 demonstrates that while the AFDC population has expanded
since 1972, theshareof Medicaid resources allocated tothisgroupdropped from
33 percent in 1972 to 24 percent in 1988. In contrast, the share of expenditures
allocated to the SSI group has increased markedly, even though the SSI population has not undergone a comparable expansion.
45
�Bach, Oberg, Bryant, et al.
Ethics and Medicaid
440
Discussion
FIGURE 3
MEDICAID EXPENDITURES AND RECIPIENTS, 1972-1988*
MEDICAID RECIPIENTS
1972
1980
441
1988
MEDICAID EXPENDITURES
80 n
Through the use of proxies, our study has focused on the access and
equity tiers of the Medicaid Values Framework with respect to the program's
treatment of potential and actual AFDC and SSI recipients, documenting and
dissecting significant inequities between these two populations. Although
some experts differ with our broad definition of equality of care for Medicaid
recipients—health care equivalent to that available to the general population—
it is generally accepted that Title XIX directed the states to provide equitable
treatment to all groups within Medicaid. Clearly, the program has not held to
this ideal. This section of the paper will examine some of the social, political, and
ideological factors that ha vecontributed to the major disparities between the SSI
and AFDC populations.
Initial set-up of Medicare and Medicaid. Many of the inequities in
Medicaid expenditurescanbeattributed to the fact that Medicaid and Medicare
were initially set up to share funding of health care expenses for the elderly.
When Medicare was established. Congress understood that many elderly
persons could not afford to pay the deductibles for the program. Congress
sought to remedy this barrier by allowing recipients of cash assistance to "buy
into" Medicare by using Medicaid dollars. Thus, by providing the funds for
Medicare deductibles, co-payments, and other obligations. Medicaid allowed
the indigent aged access to the Medicare program. The vision of balance and
equity among a number of needy groups (families with dependent children, the
aged, the blind, the disabled, etc.) in 1965 did not anticipate the mushrooming
of the aged population, the extraordinary cost of today's high technology and
long-term care for the aged and the disabled, and theemergence of Medicaid as
a primary payer for today's long-term care. Stevens and Stevens address the
genesis of this problem in specific terms:
60 Social welfare analysts noted the relatively limited scope of Title XVIII (Medicare) in
terms of persons covered (the elderly only), the types of health care covered (chiefly
hospital and related care), and the presence of deductibles and co-insurance. In this
respect Title XIX (Medicaid) was intended as a catch-all program "to pick up the pieces,"
most notibly with respect to covering needy groups other than the aged, to paying for
out-of-hospital and nursing-home care, and to paying the remaining charges imposed on
impoverished Medicare patients.*
0)
cn
ro
o
5
1972
1980
1988
* Tin.' pxTcentigi"' • ' recipients and expenditures do not equal 100 because of the categorical group
' here), which contains other Medicaid recipients who are under the SSI or
"cither" (nc
AFIX." um
Source: Kel'e,
Negative fiscal impact on states. It is extremely difficult from a political
and economic perspective to remove the elderly and the disabled, particularly
those who reside in long-term care institutions, from the Medicaid program. If
these individuals were deemed ineligible for Medicaid benefits, the states
would be forced to assume these health care costs. Consequently, the states
potentially face a far greater financial loss by deeming the elderly 'igible for
Medicaid than they do by deeming the AFDC population i ^ ^ f t
;
�Ethics and Medicaid
Bach, Oberg, Bn/ant, et al.
Impact of lobbies. The SSI group has very powerful lobbies toensure that
the federal government covers the proliferating health care costs of the aged and
disabled. Because Medicaid funds nearly 43 percent of all nursing-home
expenditures in this country, the powerful nursing-home lobbies vigorously
resist policy changes that would reduce revenues for elderly and disabled
Medicaid patients living in nursing homes. The private sector would lose a
great deal should the public sector withdraw its support of these lucrative
Medicaid patients. Thus, in a political scenario, it is reasonable to assume that
decisionmakers prefer the aged and the disabled over the AFDC population
because they are fiscally important to institutions that have political clout.
Children and poor families, in contrast, arc not nearly as lucrative to health care
providers and have less political clout. In addition, advocates for children and
poor families have not attained sufficient political status to force policymakers
to adequatelv reckon with their position.
To measure the attainment of Framework values from 1965 to the present, we
have reviewed the program's treatment of potential and actual AFDC and SSI
recipients with respect to the access and equity tiers of the Framework.
The Framework has enabled us to dissect and scrutinize the sequential
stages from eligibility and access to equality of care. The nuances of these
findings wcreclarified by using the Medicaid Values Framework. Ouranalysis
demonstrates how inequities in eligibility and access along with marked discrepancies in equality of care between these two Medicaid groupsha ve compromised the ideal of equity.
Table 2 presents a summation of our findings. Clearly, the AFDC
population is much more compromised than the SSI population with respect to
eligibility. One of the major findings of this work is that the striking disparities
in financial eligibility standards between the SSI and AFDC populations do not
translate into marked disparities in access. To further analyze this unexpected
finding, we employed enrollment rates, the availability of case management,
denial rates, and eligibility standards as proxies for the various constituents of
the access tier. Ouranalysis demonstrates that financial eligibility standards,
the availability of case management, and geographic accessibility favor the SSI
population, while denial and enrollment rates favor the AFDC population.
Therefore, access for both groups is compromised. A second major finding
addressing theequity tier was thatalthough compromised accessaffects AFDC
442
30
The undeserving poor. One explanation of why we sec such marked
discrepancies between the SSI and AFDC populations echoes back to this
country's negative view of the poor. With certain exceptions—the aged, the
disabled, the blind, and children—the poor are viewed aslargely responsible for
their plight and therefore "undeserving."*' In the eyes of American society, the
adults of the present AFDC population are the undeserving poor—people tobe
deplored—who are somehow responsible for their abject condition. In contrast,
SSI recipients are perceived as the "deserving poor" whose medical needs lie
largely beyond their own control. The view that the AFDC population is
undeserving is not new. Historical basis for this position is found just before
enactment of Medicaid in the 1965 writings of Eveline M. Bums:
No longer corresponding to the earlier image of the blameless mother, (usually a white
widow) left alone to care for her children, the present |1 W>5| AFI^C population consists
of an ever-increasing degree of women who are legally separated or divorced without
appropriate support, who are deserted, or who are unwed mothers...reaction Ito this
changing composition) has been... to restrict access to the only existing program, AFDC,
and to deny aid to families where the mother is held to be having illicit relations with a
man or to have produced illegitimate children, or who for other, often specious, reasons,
is held not to be providing a "suitable home.""
443
TABLE 2
A COMPARISON OF AFDC AND SSI USING
THE MEDICAID VALUES FRAMEWORK
VALUE
EQUALITY OF CARE
A
PROXY
RELATIVE STANDING*
AFDC
SSI
Expenditures
+
ACCESS
Burns argues for the creation of an assistance program "for which the sole
eligibility/ requiicinent uvuhi be need, regardless of cause [emphasis added |."
Unfortunately, such an equitable assistance program has not emerged. It is
unethical that persons be deemed eligible for Medicaid benefits according to
their categorical standing, rather than according to their need.
Enrollment
+
4K
Conclusion
In this
compositec
Assistance Barriers
Geographic Access
ELIGIBILITY
we have proposed the Medicaid Values Framework, a
icalth care values stratified into three interdependent tiers.
• + Better off
- Worse off
= Comparable
Case Management
Denial Rate
Eligibility for AFDC or SSI
Eligibility for AFDC or SSI
+
+
+
�Ethics and Medicaid
444
and SSI populations alike, marked disparities in financial allocations between
the two populations have arisen since 1965.
These findings contradict the original intent of Title XIX of the Social
Security Amendments of 1965, which charged the states with providing equitable access to health care for all needy groups within Medicaid. As the
President's Commission for the Study of Ethical Problems in Medicine stated,
"Society has an ethical obligation to ensure equitable access to health care for
all." Since we believe there are no morally relevant properties distinguishing
the AFDC and SSI populations, both groups have an equal moral claim to
Medicaid. Consequently, the present discrepancies within Medicaid violatethe
principles of fairness and justice and must not be tolerated.
In this paper, we used the Framework as an instrument to dissect and
clarify a complex set of problems within Medicaid, but it can also play an
integral role in enabling our society to design a just and affordable health care
system. It will provide the architects of future health care reform with a moral
guide to counterbalance increasingly severe fiscal pressures, and to work
toward attaining health care equity for our most vulnerable citizens.
Bach, Oberg, Bn/ant, et al.
445
reduction in aid or assistance (other than so much of the aid or assistance as is
provided for under that plan of the State approved under this title) provided
for eligible individuals under a plan of such State approved under Title I, IV,
X, XIV, or XVI. (Section 1902 22(b)4, p. 348)
Access
Provide that all individuals wishing to make application for medical assistance
under the plan shall have the opportunity todoso and that such assistanceshall
be furnished with reasonable promptness to all eligible individuals. (Section
1902(8), p. 344)
w
This pnper was completed in the Departments of Laboratory Medicine and Pathology and
Pediatrics, University of Minnesota. The work was supported by the Earl E. and Doris J. Uakken
Foundation, the Park Nicollet Medical Foundation, Biomedicus Inc., DLB Marketing, Hennepin
Faculty Associates, and the Departments of Laboratory Medicine & Pathology and Pediatrics,
University of Minnesota.
Dr. Marilyn Bach wishes to acknowledge assistance with the initial development of the
Medicaid Values Framework by Dr. Arthur Caplan, Dr. Dorle Vawter, and Jake Priester, Center for
Biomedical Ethics, University of Minnesota.
The authors wish to acknowledge the assistance of Christy Hall, Deborah Hinrichs, Laura
Iversen, Beth Jordan, Margaret Klumpp, Joia Mukherjee, Victor St. George, Stephen Spates, and
Paula Williams.
We also wish to thank Ellen Benavides, Clarke Chambers, John Eyler, Amy Hilden, Ian Mill,
George lloshmo, Kobert Kane, Mary Kennedy, Arlene Louton, Sharon Patten, and Catherine
Skovholt for their valuable critiques. Additionally, we wish to thank the following organizations
for data provision: the Office of Research and Statistics, Sodal Security Administration, and the
Minnesota LVpartment of I lealth and 1 luman Services.
Provide that it [the state plan) shall be in effect in all political subdivisions of
the state, and, if administered by them, be mandatory upon them. (Section
1902(a)(1), p. 344)
Quality
Assurance
(Quality)
. . .include descriptions of. . .standards and methods that the state will use
to assure that the medical or remedial care and services provided to recipients
of medical assistanceareof%/;quality. |Emphasisaddcd.l (Section 1902(22)( D),
p. 348)
Broadening
Scope of Care
(Scope of
Care)
Liberalization of
Eligibility
(Eligibility)
1. shall not be less in amount, duration or scope than the medical assistance
made available to individuals receiving aid or assistance under any other
such State plan. (Section 1902(a)10(A)(i), p. 345)
2.
shall not be less in amount, duration or scope than the medical or remedial
care and services made available to individuals not receiving aid or
assistance under any such plan. (Section 1902 10(a)(A)(ii), p. 345)
ocretary shall not approve any Slate plan for medical assistance if he
nines that the approval and operation of the plan will result in a
The Secretary shall not make payments under the preceding provisions of this
section to any State unless the State makes a satisfactory showing that it is
making efforts in the direction of broadening the scope of its care and services
made available under the plan and in the direction of liberalizing...eligibility
rcfiiiiemails.... [Emphasis added.] (Section 1903(2)(e), p. 350)
Include reasonable standards (which shall be comparable for all groups) for
determining eligibility for and the extent of medical assistance under the plan
which (A) are consistent with the objectives of this title. (Section 1902(17), p.
346)
SOURCE A N D CITATION
Medical assistance made available to individuals under state plans approved
under Titles I, IV, X, XIV, and XVI:
The Secretary shall not make payments under the preceding provisions of this
section to any State unless the State makes a satisfactory showing that it is
ma king efforts in the direction of brnuU-iiing tlie scofieofils care and services made
available under the plan and in the direction of liberalizing...eligibility requirements... (Emphasis added.) (Section 1903(2)(e), p. 350)
...with a view toward furnishing by July 1,1975, comprehensive care and
services.. .. To enable such individuals to attain or retain independence or selfcare. (Section 1903(2)(e), p. 350)
APPENDIX
Equality of Care
...provide for distribution of funds from Federal or State sources, for
carrying out the State plan . . . which will assure that the lack of adequate funds
from local sources will not result in lowering the amount, duration, scope, or
qwiliti/ of care and services available under the plan. [Emphasis added.)
(Section 1902(a)(2), p. 344)
A state plan for medical assistance must—
VALUES DERIVED FROM P L. fW-K7, SOCIAL SECURITY AMENDMENTS OF 1965
VALUE
A state plan for medical assistance must—
Recipient
Choice
Provide that in determining whether an individual is blind, there shall be an
examination by a physician skilled in the diseases of the eye or by an optometrist, whichever the individual may select. (Section 1902(a)(12), p. 345)
Provide for the development of alternate plans of care, making maximum
utilization of available resources.... (Section 1902(a)(20)(c), p. 347)
Confidentiality
Provide safeguards which restrict the use or d isclosure of information concerning applicants and recipients to purposes directly connected with the administration of the plan. (Section 1902(a)7, p. 344)
�446
Ethics and Medicaid
Bach, Oberg, Bn/ant, et al.
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Stevens R, Stevens R. Welfare medidne in America. N e w York: The Free Press, 1974.
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�Clinton Presidential Records
Digital Records Marker
This is not a presidential record. This is used as an administrative
marker by the William J. Clinton Presidential Library Staff.
This marker identifies the place of a tabbed divider. Given our
digitization capabilities, we are sometimes unable to adequately
scan such dividers. The title from the original document is
indicated below.
Divider Title:
�TAB 5
ABSTRACT
Baily, Mary Ann, " Rationing Medical Care
Describes a process for defining adequacy of health care, e.g. decent minimum.
Viewed as problematic because of difficulty achieving consensus in pluralistic society and
because physicians generally consider it unethical to set care in accord with costs. Baily
asserts that a delivery system based on a decent minimum requires limits to be set in accord
with costs. There is also no consensus on how much patients should be told about the limits
on care imposed to conserve resources. The article does not rely upon one ethical theory.
Baily notes the common theme of the importance of health care and its dependence upon an
individual's health condition. Recommends that care must vary according to individual need.
Points to the critical importance of the components of definitions of adequacy and to the
process undertaken to do so.
�t a i l xyy^
K
S T U A R T F. S P I C K E R
useless in determining what we ought to do. We can, for instance, properly criticize the
United Kingdom for failing to initiate their subtle and tacit policy of "incrementalism"
with regard to hemodialysis for ESRD on the basis of a comprehensively conducted
CBA. Thomas Halper quite correctly has pointed out that the actual "selectors" for
treatment or non-treatment for ESRD are the general practitioners, since they serve as
gatekeepers for renal hemodialysis treatment |5|. Unfortunately, their decisions are
binding and are not made outside the clinic, as perhaps they should be.
The "replacement case": the voluntary aborting of an affected fetus followed at later
life by the birth of a non-affected fetus from the same woman. The "non-replacement
case": the voluntary aborting of an affected fetus followed by no future birth by the
same woman.
4
BIBLIOGRAPHY
[1]
[2]
|3|
[4]
[5|
|6|
[7|
[8]
[9]
|10|
Beauchamp, T. L. and Childress, J. F.: 1983, Principles of Biomedical Ethics,
2nd edition, Oxford University Press, New York.
Enthoven, A. C: 1978, 'Consumer-Choice Health Plan: Inflation and Inequity in
Health Care Today", New England Journal of Medicine 298, 650—658.
Enthoven, A. C : 1978, 'Consumer-Choice Health Plan: A National-Health
Insurance Proposal Based on Regulated Competition in the Private Sector', New
England Journal of Medicine 298,
709-720.
Graven, D., et al:. 1984, The Price of Life: Ethics and Economics: Report of the
Task Force on the Affordability of New Technology and Highly Specialized Care:
Life at Any Price?, Minnesota Coalition on Health Care Costs, Minneapolis,
Minnesota.
Halper, T.: 1985, 'Life and Death in a Welfare State: End-stage Renal Disease in
the United Kingdom', Milbank Memorial Fund Quarterly 63, 52—93.
Heckler, M. M., et al.: 1985, 'Ethics, Rationing and Economic Reality',
Federation of American Hospitals Review 18, 14—43.
Hilton, B., el al.: 1973: Ethical Issues in Human Genetics, Plenum Press, New
York.
Mount Sinai Hospital Annual Report: 1984, "No Easy Answers: The Issue of
Medical Ethics', Mount Sinai Hospital, Hartford, Connecticut.
President's Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research: 1983, Screening and Counseling for
Genetic Conditions: A Report on the Ethical, Social, and Legal Implications of
Genetic Screening, Counseling, and Education Programs: U.S. Government
Printing Office, Washington, D C.
Twiss, S. B.: 1974, 'Ethical Issues in Genetic Screening: Models of Genetic
Responsibility', in Bergsma, et al. (eds.). Ethical, Social and Legal Dimensions of
Screening for Human Genetic Disease, Stratton Intercontinental Medical Book
Corp., New York, pp. 2 2 0 - 2 6 1 .
Readi^~ No. 44
Rationing Medical Care;
jesses for
Defining Adequacy. The . .ce o f Health
(Dordrecht: D. Reidel, 1986)
RATIONING M E D I C A L CARE:
PROCESSES FOR DEFINING A D E Q U A C Y
I.
INTRODUCTION
For most people, health care is special because of its importance in
preventing pain and suffering, preserving the ability to pursue a normal
life plan, providing information and relieving worry, and reflecting a
community's concern for its members. As a result, ensuring access to
health care is an important goal for modern societies. Translating this
goal into practical policy, however, has proved more difficult than
accepting it in principle.
In the health policy literature, three implicit concepts of equitable
access are current ([21], [35]). One is based completely on patient need
rpi ^01. [23], [58], [59]). A second emphasizes market outcome [6].
:t compromise between the other two, gives special priority
level of care (a "decent minimum" or "adequate level"),
.are above this level to be handled by markets. In the present
paper I am concerned primarily with this latter concept of a decent
minimum or adequate level of health care.
The decent minimum approach commands considerable support,
whether on pragmatic grounds or out of philosophical conviction.
Nevertheless, there is difficulty in making it operational. The difficulties
are of three kinds. First, there is no consensus on the specification of
the decent minimum. The care actually available to those who cannot
afford to pay varies arbitrarily along dimensions unrelated to health
condition. It is unclear how to develop a principled consensus on the
content of the decent minimum in a pluralistic society such as the
United States.
Second, this approach conflicts with physicians' current perceptions
of their ethical duty. A delivery system based on a decent minimum
requires limits to be set on care in accord with cost. In the United
States, many physicians feel it is unethical to consider cost in their
clinical decisions, let alone to set limits on the care provided that vary
with income and source of payment ([2], [4], [41], [42], [50]).
Third, there is no consensus on how much patients must be told
165
1
G. J. Agich and C. E. Begley (eds.). The Price of Health, 165-184.
© 1986 by D. Reidel Publishing Company.
�166
MARY ANN BAILY
about the limits on care imposed to conserve resources. The paternalistic model of the physician-patient relationship has given way in
recent years to a model of shared decision making in which patients
receive much more information about treatment options than in the
past. But this makes it more difficult for the provider to act as the
gatekeeper, refusing resources the patient wants.
In this paper I discuss these barriers to implementation of a decent
minimum. I argue that they are difficult but not impossible to surmount
and suggest some strategies for doing so.
I I . DEFINING THE DECENT M I N I M U M
In seeking a concrete specification of the decent minimum, it is natural
to look for guidance in the philosophical arguments advanced in its
favor. However, I do not offer a critical evaluation of the competing
theories. Instead, I focus on the process of translating the decent
minimum approach into practical policy rather than justifying it. In a
pluralistic society, no one ethical theory is likely to become dominant.
Although the underlying theories are very different, they do in fact have
practical implications in common, and so their differences are less
important in practice than they at first appear. Thus, considerable
policy insight can be derived from the philosophical arguments even
without choosing among them. For example, all the arguments imply
that the importance of health care — the extent to which it is special —
depends on an individual's health condition. Therefore, a decent
minimum cannot be simply an amount of money or a fixed amount of
care; it must be defined in relation to health state. Any system to
deliver the basic minimum must be able to vary the care according to
individual need.
All philosophical arguments imply that the definition of adequacy
should depend on the availability of resources. The benefits of health
care must be weighed against costs in the light of competing uses for
resources. Specification of adequate care for a particular health
condition requires specification not only of the kind and amount of
care but also of the quality, which will not necessarily be the highest
possible. For some conditions, adequacy may even mean no treatment
at all.
This point means that defining adequacy requires detailed information on medical technology and on preferences — how health benefits
RATIONING M E D I C A L CARE
167
can be produced and how society regards the trade-offs o.iong different kinds of benefits obtainable from health care and between health
benefcts and other kinds of benefits. Since technology, preferences, and
resource availability are changing constantly, the specification of an
adequate level must be capable of constant revision. Thus, it is
incorrect to assume, as many people do, that the decent minimum
approach implies a once and for all decision which is then imposed on
the delivery system. Rather, what is needed is an ongoing process
capable of incorporating changing information on technology, preferences, and resource availability.
Because adequacy is dependent on health condition, the process
requires the active cooperation of providers. They will have to evaluate
the health state of their patients and their clinical decisions will have to
reflect the current specification of the adequate level standard. Since
that specification takes cost into account as well as benefits, individual
provider ethics must allow doctors to limit beneficial care. In other
words, they must be allowed to ration.
The process must be linked to the political process. In the United
States, this is an obvious way to incorporate societal preferences. More
importantly, guaranteeing access to an adequate level of care for the
poor requires the coercive power of government to ensure availability
of funds.
There are also differences among the philosophical arguments which
should be noted. A major difference is in the importance ascribed to
the claim of personal health care on society's resources. For some,
individuals have a right to obtain a decent minimum; for others, there is
no right but society has an obligation to provide it. For the rest, there is
neither a right nor an obligation, but to provide a minimum of health
care would be good. Indeed, it would be a moral outrage if society did
not provide at least r basic minimum of care to the needy.
This difference is of less practical significance than it seems at first.
All three positions imply reliance on government to pursue a collective
goal. The rights- and obligation-based arguments provide stronger
justifications for coercive government action, such as interference in
individual consumption plans. However, in a society that readily
accepts taxation to provide public libraries, recreational facilities,
highways, and the like — the absence of which would not be a moral
outrage — the last position seems strong enough. Note that the strength
of the claim does not bear on its extent.
�168
MARY A N N BAILY
RATIONING MEDICAL CARE
A second deference among arguments lies in the differing priorities
implied in specifying exactly what is guaranteed. The equal opportunity
formulation emphasizes care that enables a restoration to normal
functioning. A utilitarian formulation might put more emphasis on the
relief of pain and suffering even if there were no possibility of return to
normal functioning. A contractarian formulation based on Rawls'
maximization of the least advantaged, the so-called maximin principle,
might give more care for rare conditions than a utilitarian formulation.
Again, the difference among theories is of less practical significance
than it appears. For practical policy, the difficulty is not that the
adequate level is characterized differently by the different approaches,
but that these approaches do not provide a concrete characterization of
adequacy at ail ([4], [15]).
emphasize that I am not proposing that the standard o»
currently
received by the middle class be extended to all. There is nearly
universal agreement that this standard is wasteful and inefficient. In the
existing delivery system, there is no effective mechanism for ensuring
that appropriate account of cost is taken in the making of clinical
decisions. Both consumers and providers face perverse incentives; as a
result, the standard of care now delivered to the average middle class
person does not represent the standard such a person would choose if
the costs were reflected in actual health insurance premiums and taxes
I I I . ADEQUACY AS A STANDARD OF CARE
ACCEPTABLE TO THE MIDDLE CLASS
How then to set the level? I suggest that in the United States adequacy
should be specified as a standard of care that is acceptable to the
middle class. In other words, the floor should be such that when that
level of care is guaranteed, a person of average income feels no
necessity to purchase additional care, even though more is available at
its social cost. This would mean that the majority of the population,
including the poor, would receive a common standard of care. Equity
of access would be defined in terms of equality relative to the level of
services consumed by the middle class.
Such a common standard, however, is not required by the logic of
the decent minimum. The decent minimum concept of equity of access
does not preclude, but rather supports two-class — even multi-class systems, since incomes and preferences differ and people who want
more than adequate care are permitted to buy it at social cost.
However, setting a middle-class standard, under the right conditions,
would overcome some practical difficulties in implementing the decent
minimum and serve as a reasonable approximation to the level of care
morally required.
Of course, it might be objected that such a system would be prohibitively expensive. After all, the appeal of the decent minimum approach
for many is the permission it gives to abandon the goal of providing
expensive "mainstream" medicine to the poor. It is thus important to
3
169
((71, [251, [26]).
A decent minimum approach requires doctors to limit beneficial
care. Setting one basic standard of care as normal practice (with the
understanding that there would be standards above that) would be far
easier for the medical profession to accept than setting a normal
standard for the average patient and an explicitly lower standard for the
poor.
Doctors resist the role of rationer of societal resources. Of course,
the role is often thrust upon them, nonetheless. The apportionment of
scarce resources among patients with competing needs is most apparent
when there is a physical shortage of resources such as intensive
care beds, dialysis machines, or donated organs, but in fact, limits
on beneficial care are common. For example, most doctors would
acknowledge that they allocate their scarce time among patients and
that some patients would benefit from more physician time spent on
histories and careful examination [47]. However, doctors prefer not to
see their activities as rationing.
A fair rationing system is actually in the patient's interest since
patients ultimately pay the cost of low benefit care in higher insurance
costs. If the doctor's ethical obligation includes serving as agent in the
economist's sense of acting in the patient's best interests given the
patient's preference and financial situation, then it is ethical for the
doctor to participate actively in rationing. Of course, if the patient is not
paying out-of-pocket at the time clinical decisions are made, the patient
will have an incentive to subvert the system, but at least there should
be no ethical conflict for the physician in upholding it, under this
interpretation.
Many people prefer the ethic of the doctor as patient advocate — the
ethic that the doctor's duty is to provide all beneficial care without
regard to cost. Doctors find it difficult enough to balance patient good
�1'/
MARY ANN BAILY
against their own good; acting as steward of society's resources seems
far too difficult a task. Likewise, patients prefer to have their doctors
acting in their best interest, rather than sacrificing their welfare to some
concept of the social good ([41), [42]).
Unfortunately, there is no way to preserve clinical autonomy for
doctors to respond to individual situations, allow them to practice an
ethic dictating that they do everything possible for their patients
(without regard to cost), and limit the care patients receive to that
which is worth its cost. It has been suggested that the task could be
accomplished by some combination of limits on resources and explicit
rationing rules; within these restrictions, doctors then could be patient
advocates ([27], [47]). But the complexity of medical technology and the
variability in individual cases are so great that doctors can always
sabotage the system if they choose unless there is very extensive and
intrusive review of clinical decisions. A rationing system cannot function effectively unless doctors accept its legitimacy.
It is possible to have a system in which there are two rationing
standards, one for the poor and another for the better off. Some
developing countries, for example, have a public system of care in
which a radically different standard of care is delivered than is
delivered to private patients. In these countries, some doctors work in
public clinics and in private practice, moving back and forth easily
between the two standards. Most American doctors, however, have
ethical difficulties with a standard of treatment that varies in medically
important ways with a person's income or the source of payment.
Therefore, it might be easier to obtain the cooperation of doctors if
there were one standard of care for the majority of the population.
Would such a standard require a level of care that exceeds the
public's sense of what is morally required? In other words, would the
standard be unacceptably high? The evidence is mixed. On the one
hand, the rhetoric surrounding public programs suggests strong suspicion of "two-class" medical care and institutions that serve only the
poor. Medicare and Medicaid were designed to integrate the elderly
and the poor into the mainstream of medical care. Aspects of care
which are seen as amenities or relatively unimportant to outcome such
as waiting time, amount of time spent with a doctor, or continuity of
provider can vary in ways unacceptable to the average paying patient,
but people do not seem to be comfortable with the idea that the actual
standard of medical treatment should vary with a person's income
RATIONING MEDICAL CARE
171
or the source of payment. Medical malpractice law recognizes that
standards of care may vary from one locality to another and between
general practitioner and specialist; it does not recognize, however, a
variation in standard of care based on the income or insurance status of
the patient.
Of course, there is a gap between rhetoric and reality. Many people
do not have access to care, and the actual standard of care provided to
the poor does not match the rhetoric. Although public hospitals are
supposed to deliver the same standard of care as other hospitals, many
are not supplied with the funds to do so. Medicaid patients cannot find
mainstream doctors to treat them because Medicaid reimbursement
rates are so low.
In responding to this situation, the American public faces a dilemma.
On the one hand, people believe that in the richest country in the
world, every citizen ought to have access to good medical care. On the
other hand, they have the uneasy sense that the standard of care now
received by the middle class is wasteful and expensive, and not entirely
satisfactory at that; yet, they believe that extending that standard of care
to the poor will be prohibitively expensive and not worth the money in
the benefits it provides.
It is instructive that people prefer to deal with this dilemma by
persisting in believing in the face of evidence to the contrary that, with
occasional unfortunate exceptions, everyone in this country already has
access to good care. Once in a while the system fails, but normally
people who really need health care receive it, and the health care they
receive compares favorably with the care available to the average
person. The more concerned people are about the size of government
expenditures, the more unwilling they are to believe that serious
deficiencies in access to care exist.
If people did not have a moral intuition that adequate care should be
available to all, and that adequacy means a standard of care acceptable
to the average paying patient, this tendency would not be so strong.
Thus, I think there is support for a standard of adequacy defined as that
acceptable to the average person if the practical problem of the high
cost of such a standard can be solved.
Those who do not believe the societal obligation is so extensive
might be convinced to support the standard on other grounds (15).
Some groups may deserve health care in compensation for past injuries
that have resulted in lower health status — minority groups or combat
4
�17.
MARY ANN BAILY
veterans. Other care may be j'istified on prudential grounds — social
benefits from the greater productivity of a healthy work force or savings
in other public programs. Finally, setting adequacy at a level that is
satisfactory to the majority of the population lessens the danger that the
floor will be allowed to fall too low because it is a separate level set for
a politically powerless group. The history of institutions providing
public services to low income or minority groups suggests that they are
less responsive than institutions serving members of the broad middle
group ([8], [33], [38j, [39]).
It might be argued that the standard of care would not be too high
but too low. This objection seems implausible for conditions that are
reasonably likely to happen to the average person. By the very logic of
the decent minimum, well-informed people of average means can be
expected to want at least that level of care; it is difficult to see why they
should be forced to guarantee themselves access to more than they
want.
People may not be well-informed, however. Even if well-informed,
they may be subject to systematic biases in their decision making.
Setting the standard of care requires people to weigh probabilities — to
decide how much it is worth spending on hypertension treatment to
lower the risk of cardiovascular disease, to decide whether they want to
pay to guarantee the availability of a heart transplant when the chances
of needing one are very small, and so on. Decision making under
uncertainty is difficult. Studies have shown that people have particular
difficulty making decisions when there is a small probability of a very
adverse event. Of course, many decisions in health care are of this type.
The fact that the probability of incurring many illnesses is not evenly
distributed raises an additional problem. Those conditions that are
unlikely to be experienced by the average person may receive less
consideration than more common conditions of similar severity.
Genetic and congenital conditions raise this problem in particularly
clear form.
It is important to emphasize that the standard of care acceptable to
the person of average income would be a reasonable first approximation to an adequate level, but it would not necessarily be fully satisfactory. People might well differ in their assessments of the extent to which
it should be modified and in which direction. Unfortunately, the conditions that this approach would not handle well — for example,
preventive care, genetic and congenital conditions, and organ trans-
RATIONING MEDICAL CARE
173
plants — are exactly the conditions about which the underlying philosophical theories differ. Even if a consensus about the amount of care
required could be reached, I do not think it will be easy to assure that
the system actually provides everything necessary, if it is not likely to be
used by the average person. A variety of institutional mechanisms
would be needed to deal with the questions and conflicts that would
arise. These mechanisms might include special congressional committees, private charitable organizations, hospital ethics committees,
and so on.
This debate, however, would take place within a system in which the
broad outlines of adequacy were set. This would be an improvement
over the existing situation. There would be an economizing of social
attention. Questions such as whether prenatal care would be provided
and in what amounts, how much cancer screening should be provided
to the general population, and whether well-child care should be
provided, would be settled and society could concentrate on questions
such as how much care should be available for hemophiliacs.
I V . T W O E X A M P L E S OF PROCESSES FOR D E F I N I N G
AND DELIVERING AN ADEQUATE LEVEL
Admittedly, there is still considerable indeterminacy in the approach
recommended. What does it mean in practical terms to say "the floor
should be such that when that level of care is guaranteed, a person of
average income feels no necessity to purchase additional care, even
though more is available at its social cost?" What is average income?
How can the tradeoffs between health benefits and costs be observed
without losing the benefits of risk-spreading through insurance? How
can providers be brought to respect these tradeoffs in their clinical
decisions? What percentage of care bought outside the system for a
given condition triggers a re-evaluation of the level within the system?
How is the cost of the system to be distributed so that no one's burden
is excessive?
These questions could be answered in a variety of ways. My purpose
here, however, is not to answer them, but to argue that they can be
answered. In other words, I am only arguing that a practical system can
be developed along the lines described. To demonstrate this thesis,
consider two systems which have attracted special attention recently for
their resource allocation process and the ethical acceptablility of the
�174
MARY ANN BAILY
resulting distribution of care: a national health service such as that of
Great Britain and a system of competing health plans such as Alain
Enthoven's Consumer Choice Health Plan. The two systems are very
different ideologically - socialized medicine versus market competition. Yet they are similar in that each constitutes a delivery system in
which is embedded a process for defining and guaranteeing universal
access to a standard of care which approximates adequacy.
The British National Health Service (NHS) has been examined in
fascinating detail by Henry Aaron and William Schwartz (1). They
describe how the standard of care provided by the NHS is determined.
What is interesting for this paper is the complexity of the process. It is
often assumed that the decent minimum must be determined by a
"central czar", or at least a "central committee", at a level far removed
from the patient, and then imposed on the delivery system through
inflexible regulation. This is not necessarily the case. Even in the
"socialized" National Health Service, there is no single authority making
all the decisions. Instead, a system of interlocking levels operates with
different mechanisms at different levels.
At the top is a global budget for the entire health service determined
by the Treasury and approved by the Cabinet and House of Commons
— in other words, through a political process in which health care
competes with other goods. At the bottom are the general practitioners,
paid on a capitated basis and serving as gatekeepers to the system. In
between are regional and district planning authorities and the hospitals.
The regions receive fixed budgets which are then allocated by planning
authorities including physicians and non-physicians. The hospitals also
receive fixed budgets, which are allocated by the medical staff,
composed of salaried physicians working directly for the hospital.
This complex process has the characteristics described as essential to
defining and delivering adequate care. First, it is a process, not a static
allocation, in which the level of care provided evolves with changing
technology and societal preferences. Second, there is a political
mechanism for determining the overall availability of resources to the
sector and weighing health benefits against other uses of resources.
Third, both physicians and non-physicians participate in the allocation
process at the middle levels, where tradeoffs are made among various
health benefits. And fourth, the use of physicians as gatekeepers at the
individual patient level ensures that the care provided varies with health
condition.
RATIONING M E D I C A L CARE
175
Viewed from this perspective, the NHS is certainly not perfect.
Attempts to eliminate regional inequalities in the distribution of health
care personnel and facilities have not been completely successful.
Criteria for obtaining treatment vary from one area to another; for
example, the criteria for selection for hemodialysis vary from center to
center. Rationing of care falls disproportionately on care that requires
expensive equipment, since it is easier to limit supply of such equipment and thus limit doctors in this way than it is to ration other kinds
of care.
Nevertheless, the system seems to work. The small size of the private
sector in medicine over the first three decades of the NHS's existence
attested to the acceptability to the average Briton of the standard of
care provided, although the private sector's spectacular recent growth
suggests that the standard may no longer be as acceptable.
A different approach to health care delivery is the Consumer Choice
Health Plan (CCHP) ([25], [26]). This approach leaves more choice to
the individual consumer and relies less on bureaucratic decision making
and control. Consumers are given incentives through the income tax to
join health plans, so-called health maintenance organizations (HMOs).
Each health plan is a kind of mini-health service, which sets a standard
of care for its members. Competition among health plans leads to a
distribution of standards of care that reflects consumer preferences. A
system of government regulation is designed to ensure that the competition takes place along socially desirable lines — for example, that
consumers are well-informed about the differences among health plans.
What makes this a method of setting an adequate level is the provisions for the poor and for others who would have difficulty obtaining
health insurance coverage in a purely private market. These people are
allocated purchasing power to enable them to join health plans. A
complex set of regulations ensures that these people will belong to
health plans that also serve middle class Americans and that they will
receive a certain basic list of services. CCHP has been criticized for
providing only a list of required basic services rather than specifying
amounts in relation to health condition as well ([4], [15], [19]). A list of
services clearly does not constitute a specification of adequacy — but in
CCHP, the HMO includes a rationing agent and a set of incentives and
regulations conditioning the behavior of the HMO.
As with National Health Service, Consumer Choice Health Plan
embodies a process of defining adequacy in which the standard of care
�17c
177
MARY ANN BAILY
RATIONING M E D I C A L CARE
guaranteed to all can evolve over time. Physicians serve as gatekeepers,
adjusting the care provided to individual patient need but operating
within organizations that have financial incentives to weigh the benefits
of care against the costs. Instead of relying on the political process, the
preferences of consumers, backed by their freedom to change plans if
dissatisfied, are expected to determine tradeoffs among health benefits
and between health and other goods. The government's role is limited
to maintaining the conditions necessary to allow consumers' preferences to influence the outcome and assuring that everyone has the
resources to join a plan.
To be sure, this proposal has its weaknesses ([4], [21], [56]).
Consumers may have difficulty judging the different rationing approaches and choosing among them. Alain Enthoven has devoted
considerable attention to the information issue in recognition of this
([25], [26]). Nevertheless, it is a serious problem since consumers would
need to know both the stated policies and the degree to which the plan
follows them before informed choices could be made. For example, all
members of a plan may prefer that organ transplants, sophisticated
perinatal care for defective newborns, or expensive rehabilitation
services be available. The plan may make these part of its offered
treatments, but quietly ensure that very few patients are considered
"medically suitable" for them. The patients' own families may not be
aware that beneficial care has been denied, let alone the rest of the plan
membership.
Also, regulatory mechanisms may not succeed in channeling competition among plans along socially desirable lines. In particular, there
are strong financial incentives to control the composition of membership in a plan to avoid persons who use services intensively — to avoid
enrolling them in the first place and to induce them to disenroll when
their high utilization becomes apparent. These actions can be taken in
subtle ways which are hard to control by regulation or market pressure.
HMOs can use the geographical location of their facilities, waiting
times, the quality level of particular departments, and a host of other
variables to influence the composition of their patient populations. For
example, if young families are profitable and older men entering the
heart attack years are not, the HMO could let it be known that their
pediatricians arefirst-ratebut their cardiologists are only average [43].
Though neither NHS nor CCHP is perfect, both do set a level
of care available to all that is a satisfactory first approximation to
adequacy. In both, the process is dynamic and layers of decision
making are involved. In both, there is a complex combination of
political, administrative, and individual decision-making processes,
although the balance of these is different in the two systems.
V. CLINICAL DECISION MAKING IN A RATIONING SYSTEM
In both the NHS and the CCHP, and in any likely alternative, doctors
play a key role in setting the necessary limits on the care patients
receive. In the case of the British National Health Service there are
limits on resources and some explicit rationing rules. Aaron and
Schwartz, however, explain various ways that doctors are able to
circumvent these restrictions. These authors rightly stress the importance of physician cooperation with the process of limit-setting in the
making of clinical decisions as a key factor in making the system work
([l],p.l03).
It is important to emphasize that this does not mean that doctors are
performing cost-benefit analyses at the bedside. What actually happens
in NHS or an HMO is an evolution of the standard of care into a costconscious one. Although doctors rail against "cookbook medicine" and
emphasize the need for individualized treatment, there actually is a
standard way of handling most medical conditions. If a patient sues for
malpractice, another doctor can go into court and testify as to whether
or not the accused doctor was practicing an acceptable standard of
medicine. In a national health service, and to a lesser extent in an
HMO, a resource-saving standard of care develops. The uncertainty in
medicine about what really works and the variability in medical practice
associated with it facilitates this development. In the area in which
benefits are uncertain, doctors can permit other factors to influence
their decisions and still satisfy their ethical beliefs. In these circumstances, they would not be denying beneficial care for reasons of cost.
However, Aaron and Schwartz found that calling dialysis "not beneficial" for an individual was sometimes a way of rationing without
acknowledging it ([ 1 ], p. 104).
Many find such an approach disturbingly dishonest. But if there is a
societal consensus that cost is a legitimate factor in the receipt of care,
and if it is not carried too far, a case can be made in its favor. There is
an important sense in which something can be beneficial, but not worth
�1
179
MARY ANN BAILY
RATIONING MEDICAL CARE
having. If a fair process is employed to decide when benefits are not
worth their costs, it is not unethical to say the care is not important or
to deprive a patient of a costly treatment. If doctors were to be troubled
by denying care to certain patients, their hesitation should be taken as
an indication that the standard of care in fact might not be adequate.
This is particularly likely to be the case in the United States which can
afford a generous standard of adequacy.
Nevertheless, when beneficial care is denied, a serious ethical
problem does arise. What should the patient be told? Should he be told
something could be done, but it is not worth doing? Should he be told
that nothing can be done? Or, should he simply be told nothing?
How much information ought a doctor in a rationing system provide
about treatment options that are not available within the system?
Bioethicists have devoted little attention to this. In recent years, the
paternalism that formerly characterized the doctor-patient relationship
has given way to an ideal of open communication and the exercise of
patient autonomy. Yet the literature on patient-provider communication tends to focus on the patient's right to know rather than the
practical problems this poses in a system in which options are limited.
Several possible models for doctor-patient communication in a
rationing system can be suggested. They are not mutually exclusive and
each can be found to some extent in the existing delivery system.
1. The patient is told of all beneficial options and allowed to choose,
but finanical constraints are imposed which give incentives to make the
correct choices. Traditionally, these choices are made through insurance policies with extensive cost-sharing and many exclusions. The
provider is kept out of the process; all the incentives are on the
consumer. Unfortunately, this conflicts with the consumer's goal in
purchasing insurance protection against financial risk.
2. The patient is told of all beneficial options and makes his own
choice, but the doctor exercises judgment about what the third party
payor should pay. The patient can receive more care than the insurance
company pays for (the doctor may even recommend more), but the
patient would have to pay for it himself. The use of the physician as the
company's advisor permits additional risk-spreading to be accomplished at reasonable cost by providing a more sensitive instrument for
controlling utilization and the doctor is able to preserve his clinical
autonomy.
Two difficulties arise with this approach. First, it may be feasible for
major alternatives (as with surgery vs. medical management of a
condition, an expensive drug vs. one that is cheaper but somewhat less
effective), but where should the doctor draw a line? Need he explain
that the hospital has chosen to use a lower quality of suture than the
best available in the operating room? That a diagnostic test is being
omitted that is very expensive, but has a one in a thousand chance of
producing important information for his treatment? Such total communication surely requires more participation in the details of care than
the patient wants. Yet, if the patient must consent to any limit on
beneficial care, it would seem to be required.
A second difficulty arises if the patient is unlikely to be able to pay
for the treatment. In some cases, might it not then be cruel and
pointless to tell him of its existence? Should a Mississippi dirt farmer be
told of an expensive cancer treatment available at Sloan-Kettering that
has a one in a thousand chance of saving his life if there is only a one in
a million chance that he could take advantage of it? Undoubtedly there
are situations in which a patient would want to know about alternatives
the doctor cannot provide, but must the doctor inform him of all
alternatives and if not, where is the line to be drawn?
3. The patient consents in advance to the fact that he will not be
offered all possible choices. For example, a person joining a health
maintenance organization is told in advance that the HMO doctors will
not inform him of all the options that are possible, but will omit some
for reasons of cost. By joining, he consents to such a practice. In a
national health service, it is understood that there are limits on choice.
Even if such an advance directive is ethically acceptable, there is
probably still an obligation on the part of the doctor to inform a patient
of options not provided when the doctor thinks that the patient might
want to purchase the care outside the system or lobby for a change in
the range of options provided. Again, the difficulty is knowing where to
draw the line.
4. The medical profession defines the standard of practice in a way
that limits the available options to those for which benefits bear a
reasonable relation to costs (and to provide some guidance as to
when exceptions to the rules are appropriate). An example would be
consensus development conferences which allow cost to be a factor in
the final recommendations. Patients then only are informed of those
options which are part of standard medical practice. The NIH has used
such conferences in recent years to influence medical practice with
�180
respect to Caesarean deliveries, prenatal diagnosis, treatment of
travellers' diarrhea, and other issues.
V I . CONCLUSION
A practical framework for health policy based on guaranteeing universal
access to an adequate level of care is appealing. However, any system
which delivers an adequate level of care at reasonable cost will require
limits on beneficial care, and if these limits are to be imposed
equitably, the cooperation of physicians is essential. An important
consequence of this point is that the ethical duties of doctors in setting
limits on patient care and in informing patients about the nature of such
limits need to be clarified. An ethic which requires doctors to provide
all beneficial care whatever the cost and to inform the patient in full
about any choices that could conceivably affect the benefits he could
receive has the charm of simplicity. However, it is incompatible with
designing a practical system for delivering adequate care.
(
' 4 iS J l o c re" susid in Jhe'sense tha. it is used in dtscusstons of physictan
praclt' e and in malpractice law - the compendium of routtne ways of handhng medtca.
^The mo're'concerned people are about the stze of government expenditure, the more
unwillin* they are to believe that serious def.c.enc.es m access to care ex.st. The
eaa n o the commisstoners to a hearing held by the Prestden, s Comm.sston „. n
xample of this. A. this hearing, individuals testified about the.r own problems ,n
obtline health care. Each case was carefully selected to illustrate a structural defect m
t
y cm r her than a failure of the system to operate as designed. In other words
by log c .here was a large Cass of individuals who must have W " ™ * * * ™ * "
d fficulties. The commissioners who were particularly reluctant to enlarge the scope of
Zernment responsibility in health care were most vehement m objecting to h s
hearing on the grounds that it was "anecdotal". They also were the most reluctant o
e pMhe sTanlard statistical evidence presented to them on differences ,n ..ccess to
care A similar phenomenon can be seen w,th respect to hunger m the United States.
g
BIBLIOGRAPHY
in
George Washington
Washington, D. C.
"
University
|2|
NOTES
1
In this approach, "ensuring equitable access to care" means everyone should be
able to obtain an "adequate level" or "decent minimum" of care, the exact amount
depending only on health state, without having to bear an "excessive burden" in
financial cost, travel, and waiting time. People who want more than this level of care
should be able to purchase it at its unsubsidized supply cost. The precise content of the
adequate level and the definition of excessive burden are value judgments depending on
society's trade-offs among different kinds of health care and between health care and
other commodities. In this concept of equity, therefore, health care is considered
differently from other goods in that it ensures that people can get care recognized as
important, whether or not they can pay; yet, it requires neither a commitment of
resources so open-ended (hat it jeopardizes the pursuit of other social goals, nor
restrictions on the amounts people can spend on health care out of their own resources.
The policy literature on the basic minimum or adequate level concept is extensive, see
(|2|,|25|,|261,[36|,|37|,|40|,[51|,|52|.|53|).
Nevertheless, strong philosophical arguments can be and have been advanced in
support of the decent minimum. These arguments are utilitarian, contractarian, or
libertarian in nature. As such, they employ the premises of these ethical theories to
examine the basis for believing that health care is special, the existence of a moral right
to health care or alternatively, a societal obligation to provide it, and the extent of any
:
181
RATIONING MEDICAL CARE
MARY ANN BAILY
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(511 President's Commission for the Study of Ethical Problems in Medicine and
�MARY ANN BAILY
D A V I D D. F R I E D M A N
Biomedical and Behavioral Research- lOHT c „ •
COMMENTS ON " R A T I O N I N G M E D I C A L CARE:
PROCESSES FOR D E F I N I N G A D E Q U A C Y "
|53|
|54|
|55j
|56|
|57|
(58|
[59|
Rieh,
H
h
n
W/LnssSSK^KS' " "" ^ '
Mary Ann Baily begins her paper by setting out, in general terms, the
idea of a "decent minimum approach" to providing health care. She
goes on to argue for defining the "decent minimum" as the level that
should be (but not the level that is) chosen by the middle class, and to
discuss reasons why it should and ways in which it could be made
available to everyone.
Baily's paper is built around a normative proposition — that
everyone should get a "decent minimum" of health care. The author
does not herself provide a defense of this proposition. Instead, she cites
a variety of other writers who have defended it, and devotes her paper
to discussing how the objective might be achieved.
While the paper takes the form of a positive discussion of how
certain goals are to be achieved, goals which the author observes that
other people are in favor of, I believe that it can and should be
discussed in both normative and positive terms. A large part of the
paper is devoted to discussions of normative issues such as what a
"decent minimum" means and all of the paper is motivated by a normative issue. Further, the paper itself is shot through with normative
language. Phrases such as "decent minimum", "it would be a moral
outrage if. . . ," "adequacy," and the like cannot be described as valuefree descriptions of alternative objectives. Hence, in the first part of this
commentary, I will deal with normative issues that the paper raises. In
the second part, I will go on to consider the positive issues.
I.
PHILOSOPHY
Baily's essential normative proposition is that everyone should be
provided with a "decent minimum" of health care — and hence that if
some individuals are unable to provide that decent minimum for
themselves, it should be provided for them by others. Underlying most
arguments in favor of this proposition is the claim that health care is in
some sense a special good — essentially different from most or all of
185
G. J. Agich and C. E. Begley (eds.). The Price of Health, 185-197.
© 1986 by D. Reidel Publishing Company.
�
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Title
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Health Care Reform
Identifier
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2006-0810-F
Description
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<p>This collection consists of records related to Hillary Rodham Clinton's Health Care Reform Files, 1993-1996. First Lady Hillary Rodham Clinton served as the Chair of the President's Task Force on National Health Care Reform. The files contain reports, memoranda, correspondence, schedules, and news clippings. These materials discuss topics such as the proposed health care plan, the need for health care reform, benefits packages, Medicare, Medicaid, events in support of the Administration's plan, and other health care reform proposals. Furthermore, this material includes draft reports from the White House Health Care Interdepartmental Working Group, formed to advise the Health Care Task Force on the reform plan.</p>
<p>This collection is divided into two seperate segments. Click here for records from:<br /><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0810-F+Segment+1"><strong>Segment One</strong></a> <br /><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0810-F+Segment+2"><strong>Segment Two</strong></a></p>
Provenance
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Clinton Presidential Records
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William J. Clinton Presidential Library & Museum
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Paper
Dublin Core
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Ethical Foundations Briefing Book [2]
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Health Care Task Force
General Files
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2006-0810-F Segment 1
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Box 47
<a href="http://clinton.presidentiallibraries.us/items/show/36144" target="_blank">Collection Finding Aid</a>
<a href="https://catalog.archives.gov/id/12090749" target="_blank">National Archives Catalog Description</a>
Provenance
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Clinton Presidential Records: White House Staff and Office Files
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William J. Clinton Presidential Library & Museum
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Adobe Acrobat Document
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Preservation-Reproduction-Reference
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5/5/2015
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42-t-2194630-20060810F-Seg1-047-005-2015
12090749