Testimony Before the President’s Council on Bioethics: Protecting Patients’ Rights


Editor’s Note: The following is excerpted from written testimony submitted by Lois Uttley, director of the MergerWatch Project, to the President’s Council on Bioethics, which is meeting Thursday and Friday of this week. Lois’s testimony concerns the harmful implications of proposed Dept. of Health and Human Services regulations regarding provider conscience, and puts forward alternative regulations that would protect patients’ conscience and access to care.

Recently, a great deal of public attention and public policy
has been focused on protecting the religious and ethical beliefs of health
providers. As your council discusses this issue, I urge you to consider another
imperative – protecting the rights of patients to receive accurate medical information
and needed treatment in a timely manner. In a pluralistic society such as we
have in the United States,
public policy must carefully balance the needs and rights of all affected parties.

Let’s use an example to make this discussion very concrete:

A 19-year-old rape victim – let’s call her Sally
– is brought to a hospital emergency department by the police. The physician
who treats her numerous injuries – Let’s call him Dr. Brown — omits any
mention of the potential to prevent pregnancy from the rape by using emergency
contraception, because he does not approve of it for religious reasons. Many
hours later, Sally leaves the hospital without being informed about emergency
contraception, or offered the medication. A friend takes her back to the
college dorm where they live and Sally, exhausted, falls asleep for 24 hours. Because emergency contraception is the most effective
when taken shortly after unprotected intercourse, Sally’s opportunity to
prevent pregnancy has now been greatly diminished.

 

What has just happened? Is this proper medical care? What
are Sally’s rights? What are Dr. Brown’s? And, how should they be properly
balanced? 

The patient’s rights

Let’s start with Sally. After all, the patient is supposed to be the focus of what the health professions now refer to as "patient-centered care." According to the Institute of Medicine, "patient-centered care is defined as health care that establishes a partnership among practitioners, patients and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care."

One of the central tenets of patients’ rights and
"patient-centered care" is the right to informed consent. For a patient to make
an informed decision about medical treatment, he or she must have knowledge of all
potential treatment options, and their risks and benefits. In this case, the
rape victim has not been informed about an important potential treatment option
- use of emergency contraception to prevent pregnancy. As it happens, Sally is
one of the millions of American women of reproductive age who are not aware of
EC. So, Sally has had no opportunity
to consider this option or use her own moral, ethical or religious perspectives
to decide whether she wishes to risk the chance of bearing the child of a
rapist. Further, she has had no chance to discuss with her physician the
potential medical complications of an unplanned pregnancy, in view of her existing
medical conditions, which include diabetes.

How could this violation of patients’ rights be corrected? The
simplest method would be to require all hospital emergency department
personnel, including Dr. Brown, to always offer EC to rape victims who are of
reproductive age.

Physicians’ rights
and responsibilities

But now, let’s focus on Dr. Brown. A fundamentalist Christian,
he believes that emergency contraception is the same thing as abortion, even
though medical and scientific experts say that is untrue and the FDA has stated
unequivocally that emergency contraception prevents pregnancy and does not
cause an abortion.

Dr. Brown argues that requiring him to give emergency
contraception to Sally would violate his religious beliefs. "I shouldn’t have
to give up my religious freedom in order to be a doctor," he says.

Let’s pause for a moment to consider whether personal
beliefs that are unsupported by or unrelated to medical science should be
considered valid reasons why a licensed medical professional should be
permitted to refuse to provide needed medical care, especially in an emergency
situation in a facility that serves the general public. How far should we allow
Dr. Brown or one of his colleagues to go with such claims? If Dr. Brown also
believes that AIDS is a just punishment from God for perverted behavior, should
he be allowed to refuse to treat any
patients with AIDS? What if one of his colleagues believes that under Islamic
law, anyone who committed murder
should be sentenced to death? Should he be permitted to refuse to treat
suspected murderers who are brought to the emergency room for treatment of
wounds suffered in the attack? Where would we draw the line between acceptable
and unacceptable moral reasons for refusing to provide care?

In the interests of moving our analysis along, however,
let’s set that issue aside and see if there is a compromise we could arrive at
that would permit Dr. Brown to refuse to give EC to Sally, while still ensuring
that she gets the medication in a timely manner. What if we just require Dr. Brown to refer
Sally to another physician or a nurse in the emergency department who could inform
her about EC and provide her the medication if she wishes to use it?

That, too, is unacceptable, Dr. Brown says, because it
requires him to cooperate in helping the patient receive treatment he finds
morally objectionable. "I cannot be implicated in any way in helping her commit
an immoral act," he states.

One could argue that Dr. Brown’s professional responsibilities
to his patient should obligate him to provide Sally with at least a referral in
such a situation. But, under a proposed "Provider Conscience Regulation" issued
by the U.S. Department of Health and Human Services (HHS) on August 26, 2008,
no entity receiving federal funding (such as the hospital where Dr. Brown works)
could require him to give Sally the medical information or referral she needs
if he claims a religious objection. To attempt do so would be to "discriminate"
against him, and could result in the loss of federal funding, according to the
rule. Not a single other physician or
nurse in the hospital could be required to step in and give Sally what she
needs, if that health professional held the same views as Dr. Brown.

Moreover, HHS has proposed a very expansive definition of the
term "assist in the performance of" to permit refusals for "participation in any activity with a reasonable connection to the
objectionable procedure, including referrals, training and other arrangements
for offending procedures." Arguably, this definition would permit a pharmacy
technician to refuse to stock emergency contraception in the hospital pharmacy,
or a hospital purchasing agent to refuse to order it. Again, we face the
question of where we should draw the line between acceptable and unacceptable
refusals. The proposed HHS rule would seem to draw no line at all, instead
allowing medical professionals and hospital personnel to use personal moral or
religious beliefs to exempt themselves from any
medical obligations to their patients.

Let’s consider another alternative – requiring the hospital
to be responsible for ensuring that Sally’s rights as a patient are protected.

Hospital responsibilities

Arguably, the hospital should
already
be responsible for ensuring that Sally’s medical needs are met. In
order to participate in the federal Medicare program, and to be reimbursed
under the Medicaid program, hospitals must adhere to "Conditions of
Participation." These conditions are meant to ensure that patients’ rights are
respected and they received medically appropriate care. For example, hospitals
are required to:

  • "Honor a patient’s right to make informed
    decisions regarding his or her medical care."
  • "Meet the emergency needs of patients in
    accordance with acceptable standards of practice."
  • "Have pharmaceutical services that meet the
    needs of patients."

 

But since the Medicaid/Medicare Conditions of Participation has
not yet been enforced to require the provision of EC to rape victims, a
number of states have enacted so-called EC in the ER or Compassionate
Care for Rape Victims laws. These statutes specifically require
hospitals to offer emergency contraception to rape victims, or, at
minimum, inform rape victims about the potential to use the medication
to prevent pregnancy.

How should the hospital go about fulfilling these
responsibilities for patients like Sally? Should administrators fire Dr. Brown
and replace him with someone who will dispense EC to rape victims? No, that
would not be the preferable way of dealing with this situation, because there
are far less drastic options available.

Instead, the hospital could offer Dr. Brown a transfer out
of the ER into another unit of the hospital where he would not be expected to
dispense EC, and replace him in the ER with someone who has no objections to
EC. Such an arrangement would be an example of a "reasonable accommodation"
under Title VII of the Civil Rights Act of 1964, which requires employers to
reasonably accommodate an employee’s religious beliefs or practices, unless doing
so places an "undue hardship" on the employer’s business. This type of careful balancing
of competing rights is a hallmark of American public policy.

But, Dr. Brown might argue that he is being discriminated
against even by such a reasonable accommodation, because it removes him from
the practice of emergency medicine, which he sees as his mission in life. The
proposed HHS rule might give him ammunition to do so, because it lacks any attempt to balance his rights with the patients’
rights and the obligation of the hospital to serve its patients.

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HHS Secretary Michael Leavitt, in a press conference to
release the department’s proposed rule, went so far as to frame the issue this
way: ""Freedom of conscience is not to be surrendered upon issuance of a
medical degree." He told reporters, "This is about protecting the right of
a physician to practice medicine according to his or her moral compass."

Is there another solution? How about requiring the hospital
to have a routine protocol of offering EC to all rape victims, and designating
someone on each shift who does not object to EC to step in, inform the patient
about EC and offer it? This surely would be somewhat cumbersome, and would
require careful management of hospital staffing schedules. It also would
require that Dr. Brown and any other hospital emergency department personnel
who have objections to dispensing EC disclose those objections up front, so
that hospital administrators can make appropriate scheduling decisions.

Religious hospital
claims to "conscience" rights

But what if the hospital as an institution operates under a religious
doctrine that expresses grave reservations about the use of emergency
contraception? Let’s put Dr. Brown and Sally in the emergency department of St.
Mary’s Roman Catholic Hospital. Like other Catholic hospitals, it is governed
by the Ethical and Religious Directives
for Catholic Health Care Services (ERDs),
which offer guidance about EC that has been interpreted in a variety of ways.  Some
Catholic hospitals provide EC to all rape victims. Some administer a pregnancy
test, even though such a test would only be able to detect a pregnancy that was
established prior to the rape (and if the woman is already pregnant, she does
not need EC). Some require the rape victim to undergo an ovulation test. If the
test comes back positive, EC is denied because of the hypothetical possibility
that there might be a fertilized egg in existence. Still other Catholic
hospitals refuse to offer EC at all.

St. Mary’s Hospital, as it
happens, is one of the Catholic hospitals that refuse to allow any dispensing
of EC. Moreover, the hospital does not permit staff to even discuss EC with
patients like Sally, citing another two of the ERDs.

Under a new state law taking effect in six months, St.
Mary’s and all other hospitals in this state (including Catholic ones) will be
required to offer EC to rape victims. Dr. Gray, a colleague of Dr. Brown’s in
the emergency department, is happy about the new law, because he believes it is
his professional and ethical obligation to serve the patient’s medical needs,
and he wants to be able to offer EC to patients like Sally. He is upset about
what he views as the hospital’s violation of his rights to use his own ethical
beliefs and his medical training in deciding how to treat patients. (The
proposed HHS regulation, it should be noted, does not seem to protect
physicians like Dr. Gray, who wish to provide
medical treatment, not refuse it, but
are stymied by institutional religious restrictions.)

St. Mary’s, which opposed the new law, hopes to argue that since
it considers emergency contraception to be an abortifacient, it cannot be
compelled to obey the law. Administrators of St.
Mary’s plan to cite the proposed HHS rule which, in seeking to enforce
compliance with a longstanding federal law allowing federally-funded hospitals
to refuse to perform abortions or sterilizations, seems to leave the definition
of abortion open to interpretation.

The regulation, as promulgated, dropped a definition of
abortion that had appeared in an earlier draft that had attempted to conflate
contraception with abortion by including anything
that could interfere with a fertilized egg. But, as the Washington Post
reported, supporters and critics alike agreed that the language remains broad
enough to apply to contraceptives. HHS
Secretary Leavitt, in response to reporters’ questions about the proposed rule,
acknowledged that there was no definition of abortion and that some medical
providers may want to "press the definition" and make the case that some forms
of contraception are tantamount to abortion, according to the Wall Street
Journal.

Does this mean that state health officials who try to
enforce the new state law at St. Mary’s – in order to ensuring that all rape
victims are offered emergency contraception — might risk being found guilty of
"discrimination" against St. Mary’s? Could the state lose all of its federal
health funding as a result? Is that really the outcome we should be seeking in
federal policy?

If St. Mary’s were to be successful in its claim, what would
happen to rape victims who need emergency contraception? Should they be
expected to go to drugstores to buy it, even though they have just suffered a
traumatic attack, may have had their clothes torn and may have been robbed of
their purses, their money and their car keys? What if the local pharmacy also
objects to emergency contraception? The proposed HHS rule, which purports to be
about protecting health providers from having to perform abortions and
sterilizations, extends provider conscience protections to pharmacies (and
also, it should be noted to a wide variety of other health care institutions,
including nursing homes and dentists offices).

Should rape victims be expected to leave St. Mary’s and go
to a different hospital, again in a traumatized state? What if St. Mary’s is the only local hospital?

Conclusions

To hear HHS Secretary Leavitt and his colleagues tell it, the
department’s regulatory might and funding power must be marshaled behind medical
professionals in this country who, they contend, are at serious risk of
retaliation, firing or being forced to surrender their medical licenses for
exercising their religious consciences. The department’s introduction to its
proposed rule on provider conscience states, "There appears to be an attitude
toward the health professions that health care professionals and institutions should
be required to provide to assist in the provision of medicine or procedures to
which they object, or else risk being subjected to discrimination." The
Department’s commentary, however, did not supply a single example of a health
professional who actually had been discriminated against.

Secretary Leavitt claimed at his press conference releasing
the proposed regulation that "there is nothing in this rule that would in
any way change a patient’s right to
a legal procedure" and that "this regulation does not limit patient
access to health care."

But, as the story of Sally, Dr. Brown and St. Mary’s
Hospital has demonstrated, that would not be the case. In fact, the proposed
HHS rule has the potential to seriously undermine the already fragile balance
between providers’ rights and patients’ rights in the American health care
system. It would tip the scales far over in the direction of objecting health
providers, and leave patients at risk of going without needed medical
information and care. It would allow
providers’ personal moral beliefs to come before patients’ rights and would take
American health care in the opposite direction from "patient-centered care."

Recommendations

Clearly, the proposed HHS rule should be withdrawn. It is
both unnecessary and overreaching in its broad interpretation of those existing
statutes.

But I also recommend that your council consider ways in
which public policy could more strongly protect patients’ rights and access to
care, without unduly burdening individual health practitioners who have moral
objections to providing certain medical services. What would be some ways of
doing this?

  • Patients’ right to informed consent must
    be paramount.
    Patients must be informed of all potential treatment
    options so that they are able to give fully informed consent, based on
    medical recommendations and the patient’s own ethical or religious
    beliefs.
  • Acute care hospitals and any other health facilities that are licensed to
    serve the general public and receive patients needing emergency care must
    be required to provide such care immediately.
    When time-sensitive emergency
    care is needed — such as for rape, an ectopic pregnancy or a miscarriage
    - a hospital must be required to provide it immediately on site.
  • The ability of non-objecting health
    practitioners to fulfill their duty to their patients must be safeguarded.
    Physicians and other caregivers must be guaranteed the right to
    discuss all treatment options with patients, regardless of whether those
    options are permitted at the hospital or other health facility, and must
    be able to assist patients in obtaining desired treatment at alternate
    facilities.
  • When health institutions serving the
    general public have treatment restrictions based on religious or ethical
    principles, they should be expected to disclose those policies to patients
    and individual health providers
  • For non-emergency care, referrals to
    alternate practitioners or facilities must be made if treatment is being
    refused.

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  • invalid-0

    The proposed rule states that it is to apply to “individuals and entities with moral objections to abortion and other medical procedures.”

    There are an infinite number of “other medical procedures” one could claim offended one’s conscience, in addition to refusing EC and appropriate counseling for rape victims. There is no burden to declare in advance what any given doctor may find objectionable, the proposed rule states explicitly that “The Department seeks to avoid judging whether a particular action is genuinely offensive to an individual.”

    What if a doctor refused to treat someone because they were gay or transgendered? Could Christian doctors refuse to treat atheists? Could feminist doctors refuse to treat pornographers? Will patients have to submit to questioning on their beliefs before they can be treated?

  • invalid-0

    Is there evidence that there has been widespread discrimination against medical workers that are ‘following their consciences’? Is there an epidemic of doctors being forced to perform abortions and sterilizations? What has really brought on this proposed rule?