Human Rights, Not Enough

Author(s): James Dwyer and Jonathan M. Mann

Source: The Hastings Center Report, Vol. 28, No. 1 (Jan. - Feb., 1998), p. 6
Published by: The Hastings Center
Stable URL: http://www.jstor.org/stable/3527966 .
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The doctor
might
have asked an
experi-
enced, sensitive African-American on staff
to talk with the
family.
The
key
to
resolving
such a cross-cultural
disagreement
was in
avoiding hasty assumptions
about what the
culture or the
family
believes. If the
family
mistrusted the medical
system,
the doctors
might
have
negotiated
in one
way.
If the
family
believed in God's
underlying partici-
pation
in human
events, the doctors
might
have
negotiated
in another
way.
In either
case, the doctors were not
obligated
to
give
costly,
futile, and
potentially
harmful treat-
ment
just
because
they
believed a culture or
a
family
demanded it.
Henry
S. Perkins
Helen P. Hazuda
The
University
of Texas
Health Science Center at San Antonio
Eric L. Krakauer
replies:
Each of the
respondents
makes a similar
point
with which I
quite agree.
When delib-
erating
with a
patient
or
surrogate
about
end-of-life decisions,
physicians
and ethics
consultants must
recognize
that each
patient
and
family
is
unique. Surrogates
are often
motivated
by guilt,
denial,
inability
to ac-
cept
death,
misunderstanding,
or
religious
conviction to insist on
aggressive life-sup-
port
measures in
spite
of their
apparent
"futility."
Yet the
variety
of
possible
reasons
for this insistence is infinite, and
hasty
as-
sumptions
indeed must be avoided.
My point
in
writing
this case
study
and
commentary
was to call attention to an ad-
ditional factor that
may complicate
these
deliberations and
produce
conflict over
questions
of life
support
and
futility.
This
factor,
largely ignored by
the bioethics liter-
ature, is racism. It is
well-recognized
that
cultural difference can contribute to such
conflict. In the United States, institutional-
ized racism has
helped generate
a cultural
difference between
working-class
African
Americans and
upper
middle-class
physi-
cians, who tend
disproportionately
to be
European-American.
I believe that, because
of this
background
of racism,
many
minori-
ty patients
and families
may
mistrust their
physicians
and the health care
system
and
that this mistrust
may complicate
end-of-
life
decisionmaking
more
frequently
than
has been
recognized.
Multiple
studies have shown that African
Americans tend to be less interested in ad-
vance directives and more interested in
ag-
gressive
life
support
than
European
Ameri-
cans. It has been
hypothesized
that mistrust
may
be a
major
reason for this, and at least
one
qualitative study
has borne out this
hy-
pothesis.
Thus far, few studies have used
standard
psychometric survey
methods to
The doctor
might
have asked an
experi-
enced, sensitive African-American on staff
to talk with the
family.
The
key
to
resolving
such a cross-cultural
disagreement
was in
avoiding hasty assumptions
about what the
culture or the
family
believes. If the
family
mistrusted the medical
system,
the doctors
might
have
negotiated
in one
way.
If the
family
believed in God's
underlying partici-
pation
in human
events, the doctors
might
have
negotiated
in another
way.
In either
case, the doctors were not
obligated
to
give
costly,
futile, and
potentially
harmful treat-
ment
just
because
they
believed a culture or
a
family
demanded it.
Henry
S. Perkins
Helen P. Hazuda
The
University
of Texas
Health Science Center at San Antonio
Eric L. Krakauer
replies:
Each of the
respondents
makes a similar
point
with which I
quite agree.
When delib-
erating
with a
patient
or
surrogate
about
end-of-life decisions,
physicians
and ethics
consultants must
recognize
that each
patient
and
family
is
unique. Surrogates
are often
motivated
by guilt,
denial,
inability
to ac-
cept
death,
misunderstanding,
or
religious
conviction to insist on
aggressive life-sup-
port
measures in
spite
of their
apparent
"futility."
Yet the
variety
of
possible
reasons
for this insistence is infinite, and
hasty
as-
sumptions
indeed must be avoided.
My point
in
writing
this case
study
and
commentary
was to call attention to an ad-
ditional factor that
may complicate
these
deliberations and
produce
conflict over
questions
of life
support
and
futility.
This
factor,
largely ignored by
the bioethics liter-
ature, is racism. It is
well-recognized
that
cultural difference can contribute to such
conflict. In the United States, institutional-
ized racism has
helped generate
a cultural
difference between
working-class
African
Americans and
upper
middle-class
physi-
cians, who tend
disproportionately
to be
European-American.
I believe that, because
of this
background
of racism,
many
minori-
ty patients
and families
may
mistrust their
physicians
and the health care
system
and
that this mistrust
may complicate
end-of-
life
decisionmaking
more
frequently
than
has been
recognized.
Multiple
studies have shown that African
Americans tend to be less interested in ad-
vance directives and more interested in
ag-
gressive
life
support
than
European
Ameri-
cans. It has been
hypothesized
that mistrust
may
be a
major
reason for this, and at least
one
qualitative study
has borne out this
hy-
pothesis.
Thus far, few studies have used
standard
psychometric survey
methods to
investigate
mistrust
among terminally
ill
pa-
tients or their
surrogates.
The available data
investigate
mistrust
among terminally
ill
pa-
tients or their
surrogates.
The available data
does not show differences in trust between
cultural
groups.
It has been
suggested,
how-
ever, that
patients
and
surrogates may
have
compelling
reasons to conceal mistrust and
that standard
survey techniques may
not be
well suited to
studying
this
highly
sensitive
phenomenon.
Given the
history
of medical racism and
current evidence of
unequal
access to health
care resources, mistrust of
physicians
and of
the health care
system
on the
part
of
African-American and other
minority pa-
tients is understandable. Medicine has not
yet proven
itself
entirely trustworthy.
In the
current
political
climate, mistrust is
likely
to
grow.
As affirmative action
programs
are dis-
mantled,
minority
medical school admis-
sions
drop,
and fewer international medical
graduates
find
positions,
American medi-
cine is
becoming
less
representative
of the
nation's
increasingly
diverse ethnic
make-up.
Meanwhile, as the ranks of the uninsured
and underinsured continue to swell,
com-
mercial interests exert ever
greater
control
over health care, intrude into the
patient-
doctor
relationship,
and
pressure physicians
to diminish
allegiance
to their
patients.
Trust is a
necessary
condition for medical
care,
especially
at the end of life. The
very
possibility
that
past
and
present
racisms
may compromise
it should
prompt
careful
attention to this matter from the medical,
bioethics, and health services research com-
munities.
Human
Rights,
Not
Enough
Madam: I
appreciate
the contrast that
Jonathan
Mann draws between medicine
and
public
health ("Medicine and Public
Health, Ethics and Human
Rights,"
HCR,
May-June
1997).
I also
appreciate
the em-
phasis
he
places
on the societal
aspect
and
determinants of health. But there are two
points
in his article that I cannot
accept.
First of
all,
I cannot
accept
the contrast
that Dr. Mann draws between the discourse
of ethics and the discourse of human
rights.
He claims that the discourse of ethics is in-
dividually
oriented, whereas the discourse of
human
rights
is
socially
oriented. It's fair to
say
that much of the
early writing
in med-
ical ethics focused on
problems
in acute
care,
emphasized
individual
autonomy,
and
tended to
neglect
social
aspects
and con-
texts. But I would not
say
the same about
ethics in
general
nor about medical ethics in
the last ten
years.
Discussions in ethics and
medical ethics include a wide
range
of voic-
es and orientations. There are Aristotelians,
Hegelians,
communitarians, civic
republi-
cans,
pragmatists,
feminists, narrative bio-
ethicists,
and others. All these writers tend
does not show differences in trust between
cultural
groups.
It has been
suggested,
how-
ever, that
patients
and
surrogates may
have
compelling
reasons to conceal mistrust and
that standard
survey techniques may
not be
well suited to
studying
this
highly
sensitive
phenomenon.
Given the
history
of medical racism and
current evidence of
unequal
access to health
care resources, mistrust of
physicians
and of
the health care
system
on the
part
of
African-American and other
minority pa-
tients is understandable. Medicine has not
yet proven
itself
entirely trustworthy.
In the
current
political
climate, mistrust is
likely
to
grow.
As affirmative action
programs
are dis-
mantled,
minority
medical school admis-
sions
drop,
and fewer international medical
graduates
find
positions,
American medi-
cine is
becoming
less
representative
of the
nation's
increasingly
diverse ethnic
make-up.
Meanwhile, as the ranks of the uninsured
and underinsured continue to swell,
com-
mercial interests exert ever
greater
control
over health care, intrude into the
patient-
doctor
relationship,
and
pressure physicians
to diminish
allegiance
to their
patients.
Trust is a
necessary
condition for medical
care,
especially
at the end of life. The
very
possibility
that
past
and
present
racisms
may compromise
it should
prompt
careful
attention to this matter from the medical,
bioethics, and health services research com-
munities.
Human
Rights,
Not
Enough
Madam: I
appreciate
the contrast that
Jonathan
Mann draws between medicine
and
public
health ("Medicine and Public
Health, Ethics and Human
Rights,"
HCR,
May-June
1997).
I also
appreciate
the em-
phasis
he
places
on the societal
aspect
and
determinants of health. But there are two
points
in his article that I cannot
accept.
First of
all,
I cannot
accept
the contrast
that Dr. Mann draws between the discourse
of ethics and the discourse of human
rights.
He claims that the discourse of ethics is in-
dividually
oriented, whereas the discourse of
human
rights
is
socially
oriented. It's fair to
say
that much of the
early writing
in med-
ical ethics focused on
problems
in acute
care,
emphasized
individual
autonomy,
and
tended to
neglect
social
aspects
and con-
texts. But I would not
say
the same about
ethics in
general
nor about medical ethics in
the last ten
years.
Discussions in ethics and
medical ethics include a wide
range
of voic-
es and orientations. There are Aristotelians,
Hegelians,
communitarians, civic
republi-
cans,
pragmatists,
feminists, narrative bio-
ethicists,
and others. All these writers tend
to
emphasize
the social nature of our
being
to
emphasize
the social nature of our
being
and
well-being.
Indeed, in different
ways
they attempt
to overcome the individualis-
tic orientation that is
implicit
in both much
of the
early
work in medical ethics and in
the discourse of human
rights.
The second
point
that I cannot
accept
concerns the
adequacy
of the discourse of
human
rights. Although
this discourse
may
prove
useful for certain
purposes
and
prob-
lems,
I doubt that it will
prove
to be an ad-
equate
discourse for
public
health. It
simply
leaves out too
many important
concerns
and considerations. It does not
provide
an
adequate
account of distributive
justice,
nor
a
deep
account of
community.
It does not
provide
an
adequate
account of the ethical
meaning
of
relationships,
the role of moral
imagination,
and the work of
caring
(which
is more than
respecting rights).
And
by
it-
self, it does not
provide
an account of the
virtues, institutions,
and modes of
reasoning
that we need to resolve conflicts of
rights.
So,
although
I
appreciate
Dr. Mann's
search for an ethics that will
prove
most
useful for
people
who work in the field of
public
health,
I think it would be a mistake
to
adopt uncritically
the discourse of hu-
man
rights.
I would
suggest
that
people
in
public
health listen to the diverse voices
within ethics.
James Dwyer
New York
University
and
well-being.
Indeed, in different
ways
they attempt
to overcome the individualis-
tic orientation that is
implicit
in both much
of the
early
work in medical ethics and in
the discourse of human
rights.
The second
point
that I cannot
accept
concerns the
adequacy
of the discourse of
human
rights. Although
this discourse
may
prove
useful for certain
purposes
and
prob-
lems,
I doubt that it will
prove
to be an ad-
equate
discourse for
public
health. It
simply
leaves out too
many important
concerns
and considerations. It does not
provide
an
adequate
account of distributive
justice,
nor
a
deep
account of
community.
It does not
provide
an
adequate
account of the ethical
meaning
of
relationships,
the role of moral
imagination,
and the work of
caring
(which
is more than
respecting rights).
And
by
it-
self, it does not
provide
an account of the
virtues, institutions,
and modes of
reasoning
that we need to resolve conflicts of
rights.
So,
although
I
appreciate
Dr. Mann's
search for an ethics that will
prove
most
useful for
people
who work in the field of
public
health,
I think it would be a mistake
to
adopt uncritically
the discourse of hu-
man
rights.
I would
suggest
that
people
in
public
health listen to the diverse voices
within ethics.
James Dwyer
New York
University
Jonathan
M. Mann
replies:
Naturally, any
effort to distinguish-
ethics and human
rights
in this case-will
likely overemphasize
differences, so the as-
sociative corrective
proposed
by Dwyer
is
appreciated. Similarly,
no uncritical
adop-
tion of the
viewpoint
of human rights is
proposed; public
health does not suffer
from a
diversity deficiency.
However, from the
perspective
of
public
health
practice,
human
rights
offers a
path-
way
forward for
analysis
and action in the
realm of societal determinants of health,
as
has been illustrated
by
the Cairo Conference
on
Population
and
Development,
as well as
by Amartya
Sen's observations on the
pro-
tection human
rights
offers
against
famine.
Further,
I am not
proposing
that human
rights
is an ethics for
public
health. Rather,
human
rights
offers an
approach
to
identify-
ing
and
responding
to the mission of
public
health
(to
ensure the conditions in which
people
can be
healthy),
thereby
providing
public
health with sufficient clarity
regard-
ing
its roles and
responsibilities
to allow
development
of an ethics of
public
health.
Finally,
a
curiosity:
I have never met a
human
rights
advocate who
questioned
the
value or contribution of ethics,
yet
I have
met
many philosophers
and ethicists who
question
the value or contribution of hu-
man
rights,
and I have always wondered
why.
Jonathan
M. Mann
replies:
Naturally, any
effort to distinguish-
ethics and human
rights
in this case-will
likely overemphasize
differences, so the as-
sociative corrective
proposed
by Dwyer
is
appreciated. Similarly,
no uncritical
adop-
tion of the
viewpoint
of human rights is
proposed; public
health does not suffer
from a
diversity deficiency.
However, from the
perspective
of
public
health
practice,
human
rights
offers a
path-
way
forward for
analysis
and action in the
realm of societal determinants of health,
as
has been illustrated
by
the Cairo Conference
on
Population
and
Development,
as well as
by Amartya
Sen's observations on the
pro-
tection human
rights
offers
against
famine.
Further,
I am not
proposing
that human
rights
is an ethics for
public
health. Rather,
human
rights
offers an
approach
to
identify-
ing
and
responding
to the mission of
public
health
(to
ensure the conditions in which
people
can be
healthy),
thereby
providing
public
health with sufficient clarity
regard-
ing
its roles and
responsibilities
to allow
development
of an ethics of
public
health.
Finally,
a
curiosity:
I have never met a
human
rights
advocate who
questioned
the
value or contribution of ethics,
yet
I have
met
many philosophers
and ethicists who
question
the value or contribution of hu-
man
rights,
and I have always wondered
why.
6 HASTINGS CENTER REPORT 6 HASTINGS CENTER REPORT January-February
1998
January-February
1998
This content downloaded from 163.178.101.228 on Thu, 23 Oct 2014 20:28:41 PM
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