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Human Rights, Not Enough

Author(s): James Dwyer and Jonathan M. MannSource: The Hastings Center Report, Vol. 28, No. 1 (Jan. - Feb., 1998), p. 6Published by: The Hastings CenterStable URL: http://www.jstor.org/stable/3527966.

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8/10/2019 The Hastings Center Report Human Rights Not enough 1998.pdf

2/2

The doctor

might

have asked an

experi-

enced,

sensitive African-American n 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

underlyingpartici-

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 cultureor

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

consultantsmust

recognize

hat 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

ife-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,

argely

gnored

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.

believe

that,

because

of this

background

of

racism,

many

minori-

ty

patients

and

families

may

mistrust their

physiciansand 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

n

ad-

vance

directivesand

more interested

n

ag-

gressive

ife

support

than

European

Ameri-

cans.

It has

been

hypothesized

hat

mistrust

may

be a

major

reason for

this,

and at least

one

qualitative

tudy

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 n 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

underlyingpartici-

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 cultureor

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

consultantsmust

recognize

hat 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

ife-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,

argely

gnored

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.

believe

that,

because

of this

background

of

racism,

many

minori-

ty

patients

and

families

may

mistrust their

physiciansand 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

n

ad-

vance

directivesand

more interested

n

ag-

gressive

ife

support

than

European

Ameri-

cans.

It has

been

hypothesized

hat

mistrust

may

be a

major

reason for

this,

and at least

one

qualitative

tudy

has borne out this

hy-

pothesis.

Thus

far,

few studies have used

standard

psychometric

survey

methods to

investigate

mistrust

among

terminally

ll

pa-

tients

or

their

surrogates.

The availabledata

investigate

mistrust

among

terminally

ll

pa-

tients

or

their

surrogates.

The availabledata

does

not show differences

n

trust between

cultural

groups.

It

has

been

suggested,

how-

ever,

that

patients

and

surrogates

may

have

compelling

reasons o

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

currentevidence of

unequal

access

o health

care

resources,

mistrustof

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.

n the

current

political

climate,

mistrust

s

likely

to

grow.

As affirmative ction

programs

re

dis-

mantled,

minority

medical

school admis-

sions

drop,

and

fewer

international

medical

graduates

find

positions,

American

medi-

cine is

becoming

less

representative

f the

nation's

increasingly

iverse

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

o their

patients.

Trust s a

necessary

ondition

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

om-

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

he

em-

phasis

he

places

on the

societal

aspect

and

determinants of health.

But

there

are

two

points

in his

article hat

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

he discourse

of

human

rights

s

socially

oriented.It's air

to

say

that much of the

early

writing

in med-

ical ethics focused on

problems

in acute

care,

emphasized

ndividual

autonomy,

and

tended to

neglect

social

aspects

and

con-

texts. But I would not

say

the same

about

ethics

in

general

nor

about medicalethics

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,

eminists,

narrative

bio-

ethicists,

and

others.

All

these writers

tend

does

not show differences

n

trust between

cultural

groups.

It

has

been

suggested,

how-

ever,

that

patients

and

surrogates

may

have

compelling

reasons o

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

currentevidence of

unequal

access

o health

care

resources,

mistrustof

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.

n the

current

political

climate,

mistrust

s

likely

to

grow.

As affirmative ction

programs

re

dis-

mantled,

minority

medical

school admis-

sions

drop,

and

fewer

international

medical

graduates

find

positions,

American

medi-

cine is

becoming

less

representative

f the

nation's

increasingly

iverse

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

o their

patients.

Trust s a

necessary

ondition

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

om-

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

he

em-

phasis

he

places

on the

societal

aspect

and

determinants of health.

But

there

are

two

points

in his

article hat

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

he discourse

of

human

rights

s

socially

oriented.It's air

to

say

that much of the

early

writing

in med-

ical ethics focused on

problems

in acute

care,

emphasized

ndividual

autonomy,

and

tended to

neglect

social

aspects

and

con-

texts. But I would not

say

the same

about

ethics

in

general

nor

about medicalethics

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,

eminists,

narrative

bio-

ethicists,

and

others.

All

these writers

tend

to

emphasize

the

social

natureof our

being

o

emphasize

the

social

natureof 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

or

public

health.

It

simply

leaves

out too

many

important

concerns

and considerations.

It does not

provide

an

adequate

account

of distributive

ustice,

nor

a

deep

account

of

community.

It

does

not

provide

an

adequate

account

of the

ethical

meaning

of

relationships,

he role of

moral

imagination,

and

the work of

caring

(which

is

more than

respectingrights).

And

by

it-

self,

it

does

not

provide

an account of

the

virtues,

nstitutions,

and modesof

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

or

public

health.

It

simply

leaves

out too

many

important

concerns

and considerations.

It does not

provide

an

adequate

account

of distributive

ustice,

nor

a

deep

account

of

community.

It

does

not

provide

an

adequate

account

of the

ethical

meaning

of

relationships,

he role of

moral

imagination,

and

the work of

caring

(which

is

more than

respectingrights).

And

by

it-

self,

it

does

not

provide

an account of

the

virtues,

nstitutions,

and modesof

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,

o the

as-

sociative correctiveproposed 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 or

analysis

and

action

in the

realm

of societaldeterminants

of

health,

as

has

been

illustrated

y

the

Cairo

Conference

on

Population

and

Development,

as

well as

by

Amartya

Sen's

observations

on the

pro-

tection

human

rights

offers

against

amine.

Further,

am

not

proposing

that

human

rights is an ethics for publichealth. Rather,

human

rights

offers

an

approach

o

identify-

ing

and

responding

o

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,

o the

as-

sociative correctiveproposed 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 or

analysis

and

action

in the

realm

of societaldeterminants

of

health,

as

has

been

illustrated

y

the

Cairo

Conference

on

Population

and

Development,

as

well as

by

Amartya

Sen's

observations

on the

pro-

tection

human

rights

offers

against

amine.

Further,

am

not

proposing

that

human

rights is an ethics for publichealth. Rather,

human

rights

offers

an

approach

o

identify-

ing

and

responding

o

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

HASTINGS

CENTER REPORT

January-February

998

anuary-February

998

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