Patient Rights vs. Distributive Justice

Dorothy Guellec


right of the patient to direct his or her medical care and health outcome, known

as patient autonomy, and the right of society to control and allocate

"limited resources", known as distributive justice will certainly

collide. In an ideal world, or in an egalitarian society all individuals would

have access to healthcare.


U.S. health system now takes into account the imperatives of corporate

management, shareholders, and the investment community in addition to the

patient’s interests. In past articles I have briefly mentioned the PSDA (Patient

Self Determination Act) and other Advance Care Directives. The real question is:

are they binding and if so upon whom? In March 1999 the AMA ‘s (American Medical

Association) Council on Ethical and Judicial Affairs published a paper in an

attempt to resolve conflicts. There were 5 items but 2 and 3 are really eye

opening. They stated, "Patients and surrogates should be made aware that

physicians are under no obligation to provide futile care. Futile or medically

inappropriate care should not be offered ‘theoretically’ with the expectation

that it will be refused". That means that Advance Directives have no legal

force at all, and patients, families and care givers would be wasting their time

and causing emotional grief to no avail since wishes do not have the force of



the past, those who provided health care were presumed to be governed by beliefs

in a set of ethical and social responsibilities that took precedence over

economic concerns. This is no longer true. According to Hiller (1986), six

ethical principles are relevant for health care leaders. They are: beneficence,

non-malfeasance, respect for persons, justice, utility and truth telling. This

is all very theoretical. In the real world patients and their families have no

idea what really determines outcomes. Adding to the complexity of end-of-life

issues, some authors writing on bioethics have suggested and argued forcefully

that, if there is little chance for recovery, the physicians may refuse to

deliver life-sustaining care, even if requested by patients or surrogates. What

is a patient to do? The ideal answer is to trust one’s physician. In the absence

of this a family member or surrogate could be enlisted to enforce the patient’s

wishes but thorny problems can arise.


American system relies heavily on the substituted judgment standard. The system,

which is about 15 years old, seeks to identify a surrogate to make the decision

that the patient would have made – putting oneself in the patient’s shoes as it

were. It relies and falls on the premises that the surrogate knows something of

the patient’s preferences. Many studies have demonstrated the inability of

family members or others to predict the wishes of the patients. Even patients

themselves who complete advance directives when healthy, are very likely to

change their minds later, due to what Rebecca Dresser has called "the

Metaphysical Objection to Advance Directives." She argues that it is

important for the patients completing advance directives to understand the

medical circumstances to which they might later be subject. She says, "Such

understanding is important not to ensure the autonomy of the decision maker but

to ensure the autonomy of the incapacitated person. Legally these two persons

are the same (e.g. both Michael Martin), but they are very different ‘selves’

(e.g. Michael Martin before and Michael Martin after the accident). The radical

differences in values, attitudes, and similar attributes which individuals often

undergo when they become incompetent make the person at the later point in time

a different person." In other words, the person who wrote the advance

directive is a different "person" from the incompetent person bound by

it. The person actually facing death is not the same person as before. This

theory does not fit neatly with the way Western law treats individuals. Dresser

calls this "hard paternalism." And asks, "the later self’s best

interests are defined by that individual in an earlier point in time, rather

than by another party. Ought this to be sufficient to remove the ethical and

legal concerns paternalism elicits?" Healthy people might not think that

expensive wheelchairs and portable ventilators were important, because they felt

that the disabled quality of life was very low and could not be significantly

raised. Nevertheless, not surprisingly, once patients became ill, they were far

more likely to prefer a longer life with a disability than a short one without

it. Most persons completing advance directives underestimate the quality of life

with disability because individuals adapt to their disabilities. The real

problem is that individuals are making decisions for their future selves that

those future selves would not want made.




week a startling report surfaced called "To err is Human" This 200+

page book lays out a comprehensive strategy for government, industry, consumers,

and health providers to reduce medical errors, and it calls on Congress to

create a national patient safety center to develop new tools and systems needed

to address persistent problems. I spoke with one of the committee members Dr.

Joseph Scherger, Associate Dean for Clinical Affairs, University of California

at Irvine College of Medicine. He said," Hospitals are dangerous places and

patients need advocates every step of the way." That struck me as quite an

admission. One major study found that medical errors kill about 44,000 people a

year in hospitals. Another puts the number much higher at 98,000. This may be

the tip of the iceberg due to all the incidents that were not reported. Even

using the lower estimate, more people die from medical mistakes each year than

from highway accidents, breast cancer, or AIDS. Patients in the hospital now are

kind of edgy. The headlines created by this study are making them nervous. Who

would blame them? The doctors are trying to blame the nurses who in turn are

trying to blame others, and round and round it goes. The press release from the

National Academy of Sciences and The Institute of Medicine who published the

report states "These stunningly high rates of medical errors – resulting in

deaths, permanent disability, and unnecessary suffering – are simply

unacceptable in a medical system that promises first to ‘do no harm.’



care news from the Web


Should physician entrepreneurs be held to professional standards? This is about

Dr.Koop Surgeon General retired and Dr.


Aetna may adopt United Health’s model to give doctors more say on treatment

(Wall St. Journal)


Lawyer seeks public support for settlement with HMO’s (Wall St. Journal) High

profile lawyer Richard Scruggs has been trying to drum up interest in filing

class actions suits against HMO’s. He is the lawyer in the tobacco litigation.


Providers leaving Aetna, voicing dissatisfaction. (Philadelphia Inquirer)

Hospitals and doctor groups scattered around the country have walked away from

millions of dollars in patient revenues from Aetna U.S. Healthcare in a series

of unusually public rifts with the managed-care insurer.


Emboldened by a ‘guild,’ therapists to abandon managed care. Four years ago a

group of Connecticut psychotherapists made the riskiest move of their careers.

They severed ties with most insurance companies and formed an alliance of

independent practitioners.


Feds pile on healthcare bankrupts – Reduced federal government reimbursements

have forced a number of healthcare companies to enter bankruptcy this year

7) auctions blood, plasma, and medical products on Web (APW Orange, Calif. Hospitals needing blood plasma or syringes have a new

source: an online auction where supplies ranging from vaccines to rubber gloves

are sold to the highest bidder.



is a "Hospitalist"?


hospitalist is a physician who specializes in inpatient medicine. The New

England Journal of Medicine in 1996 said that this specialty would burgeon for

several reasons. First, because of "cost pressures, managed-care

organizations will reward professionals who can provide efficient care." In

the out patient setting, the premium on efficiency requires that the physician

provide care for a large panel of patients and be available in the office to see

them promptly as required. There is no greater barrier to efficiency in

outpatient care than the need to go to the hospital to see an unpredictable

number of inpatients. The hospitalist trend is already visible at both teaching

and nonteaching hospitals in areas where managed care has taken root- almost

everywhere. Internists’ worst fears about the hospitalist movement appear to be

coming true in south Florida.


to the ACP-ASIM Observer May 1999 In February, Prudential HealthCare-South

Florida told its 3,000 physicians that it would soon require them to transfer

the acute care of their patients to hospitalists. Starting March 15, 1999

hospitalists began caring for Prudential members in nine hospitals and a dozen

sub-acute facilities. The Prudential program is one of the country’s most

far-reaching efforts to use mandatory hospitalists-it could affect 230,000

patients in one geographical area. What ever happened to the doctor patient

relationship through thick and thin? Many doctors were shocked by Prudential’s

news that they would have to hand over care of their hospitalized patients.

"We think it’s a further erosion of the patient-physician relationship and

promotes the further isolation of the physician."


are so many changes, almost daily that it is hard to keep up, but maybe we are

moving to a better model for healthcare.




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