Mandated HIV Testing: Can We Ethically Warrant the Imposition of Healthy Choices?


A
flurry of outraged discussion has continued in the wake of the voiced
objections of Colorado State Senator Dave Schultheis to a bill, SB-179,
which would, among other things, require HIV testing of all pregnant
women who don’t explicitly object to the testing. 

Schultheis
provoked the ire of Colorado Democrats, and AIDS and gay rights
advocates, when he said he planned to vote against the bill because
AIDS "stems from sexual promiscuity" and because the Legislature
shouldn’t "remove the negative consequences that take place from poor
behavior and unacceptable behavior." Schultheis cast the lone vote
against the bill, which passed the Colorado State Senate 32-1 and now
goes to the Colorado House of Representatives for their consideration.

The
bill mandates that blood be drawn at the woman’s first prenatal visit
and submitted for syphilis and HIV testing, but also states that the
pregnant women can decline to be tested for HIV.  If the bill passes
and is signed into law, we can only hope for reasonable regulations
that resolve the possible confusion of when the woman’s right kicks in,
and softens the coercive tone of the legislation.


The outcry and criticism of Schultheis’ seemingly invincible ignorance
and of the larger pattern of Colorado Republicans’ acquiescence to the
overtly homophobic commentary accompanying legislation that is not at
all gay-related, is of course warranted and understandable.  What is
hard to understand is the acquiescence of these same critics to the
assault on the autonomy and dignity of women that SB-179 and similar
measures represent.


HIV (still without a cure) carries multiple implications for a woman’s
health and life well beyond pregnancy.  With the persistent social
stigma attached to HIV, a positive test result forever changes the
personal life of the person diagnosed, and can trigger domestic
violence, lost housing or employment, and social isolation. These real
consequences of an HIV-positive result merit explicit discussions with
patients. Yet SB-179 assumes a pregnant woman doesn’t merit an
explanation of the purpose and meaning of an HIV test, nor can she be
trusted to make an appropriate decision if offered one.  Colorado
Democrat Nurse Thornton explains that the reason it’s so important to
test a woman for HIV when she’s pregnant is “to protect the unborn
baby” so that if she’s HIV positive “treatment is started immediately
to protect the baby.”  So much for mom.   


Thornton and the rest of them may want to read the July, 2008 USPHS
Task Force Recommendations on the use of antiretrovirals (ARVs) with
HIV-positive pregnant women.  In fact, healthy HIV positive women who
don’t need ARVs for their own health should wait at least until the
second trimester before starting treatment.  More to the point, the
2008 recommendations, which reaffirm the right of an HIV-positive woman
to retain control over treatment decisions that affect her and her
fetus, stress the importance of information and counseling to pregnant
women.

The recommendations state:  "After counseling and discussion, a
pregnant woman’s informed choice on whether to take antiretroviral
drugs either for her treatment or for prevention of mother-to-child
transmission or to follow other medical recommendations intended to
reduce perinatal HIV transmission should be respected. Coercive
and punitive policies are potentially counterproductive in that they
may undermine provider-patient trust and could discourage women from
seeking prenatal care and adopting health care behaviors that optimize
fetal and neonatal well-being
." 


Our friends who unanimously voted for SB-179 may also want to re-read
Colorado’s Patient Bill of Rights, similar to that adopted in nearly
every U.S. jurisdiction.  This gives hospital patients the rights to
give informed consent for all procedure and treatments following an
explanation in layperson’s terms; and to participate in all aspects of
one’s care plan and decisions, to refuse any test or drug, and to be
involved in any decisions that might involve ethical issues, or the
patient’s personal values and beliefs.

Prior to the recognition of informed consent as an affirmative legal
right in several states beginning in 1972, and before the development
of patient-centered care, the philosophy of “doctor knows best” applied
in physician-patient relationships.  The average patient, and
particularly the average woman, was considered too uninformed to
contribute anything to medical decision-making.  The doctor’s presumed
superiority in knowledge and his good intentions trumped any obligation
to ensure the patient’s understanding of, let alone full consent to,
whatever the doctor deemed in the patient’s best interests.  Sound
familiar? It continues to reflect many physicians’ comfort zone in
patient interactions, and persists in much of medical care where states
haven’t intervened with specific statutory directives.


In contrast, the relatively modern concept of informed consent is a
communication process between health care provider and patient and must
involve at least two components: the provision and discussion of
information, and the patient’s act of consent. Failing to object to a
procedure is not informed consent.


The Patients Bills of Rights that were adopted in the 1980s and 1990’s,
paralleling in many respects the philosophy of the Denver Principles
and the patient-centered HIV testing laws that developed over the same
period, had both supporters and opponents in the medical community.
The ongoing battles to eliminate patient protections from state HIV
testing laws track some of those earlier debates. 


There are physicians who continue to support a patient’s right to
understand and take part in HIV testing and care decisions; Kaiser
Permanente, the second largest provider of HIV-related care in the
country, and the Association of Nurses in AIDS Care, are two such
examples.  On the other hand, much of the medical establishment, as in
the past, oppose informed consent, and even the documentation that
consent was provided at all. 


If one accepts HIV testing as a gateway to care, and patient health
literacy and engagement in treatment as central to that care, then one
might think that counseling and communication that breaks down mistrust
and misunderstanding at the time of HIV testing is vital.   Even the
CDC acknowledged that in an opt-out testing program in Arkansas, more
than 15% of pregnant women tested didn’t even know that an HIV test had
been conducted.  At the same time, the most impressive statistics on
HIV testing uptake over recent years comes from New York, a state that
has kept written, informed consent on the books.  Here also, where
counseling and written consent still must precede HIV testing of
pregnant women, prenatal testing rates are near 100% and perinatal HIV
transmission is rare.


So with no evidence that documented informed consent is a barrier to
pregnant patients’ testing – indeed, there is evidence that informed
consent increases prenatal testing rates and alleviates fears and
mistrust that many patients report in their health care experiences –
why the persistence and energy in eliminating this nonexistent barrier?


If many health care providers, notably the nurses who draw the bloods
and counsel patients, see counseling as part of patient care, then why
the rush to change policies to suit the lowest common denominator?  Are
improved testing rates and ending the epidemic really served by
accommodating providers who believe that patient counseling
requirements are a waste of a professional’s precious time, rather than
accommodating the patient with fears and misconceptions who needs
information and is empowered by respectful care? 


It’s worth noting that greater than 99% of pregnant women screened for
HIV will test HIV-negative.  Meanwhile, 100% of pregnant women are
at-risk for HIV because of unprotected sex.  A short pre-test
educational session can ensure women of child-bearing age learn the
facts about HIV/AIDS as well as the strategies they need to remain HIV
free. And, provided the facts of the benefits of HIV testing for
themselves and their children, the vast majority of women will
voluntarily accept testing.


Asking pregnant patients to consent to HIV testing is not a burden.
With patients required to fill out and sign a multitude of forms –
HIPAA, release of records for insurance purposes, etc. – why is it
acceptable to eliminate a process and form that exists to benefit the
pregnant patient, in order to accommodate doctors who for the most part
don’t offer the tests anyway?   Is it based on a belief that the less
women know or are told, the less likely they are to object to testing?
Is it because it makes involuntary testing easier by making it nearly
impossible to prove, putting the burden on the pregnant patient to
argue against what her doctor has already drawn blood, and stated an
intention, to do?  Is it in any way connected to the race and economic
status of those women who are disproportionately affected?


A number of those in the AIDS and medical establishments see these
questions as besides the point.  These women are better off knowing
their HIV status.  If these women know their status, even if the
testing is a little coercive, it will help prevent further
transmission, and allow them to start treatment for themselves and
their potential offspring.  A reasonable, responsible woman would
choose testing, and all of the explanations and the technicalities of
consent get you to the same place, so what’s the difference?


The answers likely hinge on one’s view of whether good intentions
ethically warrant the imposition of healthy choices on people rather
than allowing them the autonomy to choose, or fail to choose, what the
professionals, or they, think is best for them. 


The view that such interventions are justified, I believe, misses,
forgets or severely minimizes the experiences that led to the Denver
principles, the patients’ bill of rights, and HIV testing legislation,
all of which are far more modern than the centuries-old “doctor knows
best” approach that the medical establishment is battling to extend to
HIV care. 


It also overlooks a significant part of what drives the HIV epidemic to
this day.  Namely, that women and people of color and gay men and poor
people of every stripe have been marginalized and left vulnerable by a
society, including the medical establishment, that has demeaned them
and encouraged the powerlessness and invisibility that in fact drives
people to take risks because their selves are worthless. 


And so the real outrage, and irony, is that apparently not one person
stood up for a woman’s right to dignity and autonomy, and that the only
correct vote on SB-179 was cast by an ignorant bigot for all the wrong
reasons.

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  • invalid-0

    I am amazed that there is even a question when it comes to not providing informed consent before HIV testing. Its intentions may be good, yes…but many people have good intentions and then engage in ethically questionable practices. I am an MSW student and I cannot tell you how much “informed consent” is drilled into our brains in every single class, despite the specific subject matter being handled. Doctors who knew best performed lobotomies, too.

  • invalid-0

    I do not know of any pregnant women who does not put her babies life in front of her own. If there is it may be that the mother does not know or is ill informed. This is outrageous! To think that we as women have no brains or capability to take care of ourselves and our children. These idiots forget that they got here by a very brave strong woman!!!
    Where is the talk about men being sexually permissive? It is only the womans fault? Give me a brake. What if the woman is raped and the rapist has hiv? Are these men put in jail for attemted murder? Of course they don’t talk about that. They are all men against women!! Outrageous once again.

  • invalid-0

    I suspect that part of the rationale for the change is the documentation requirements. In New York, we’re pretty much mandated in what we have to say in pre-HIV test counseling. All of that must be documented in someone’s chart. It takes time, which is limited in a busy medical practice. Often many physicians just won’t even offer the test because of this.
    .
    Is that an excuse? Of course not. I can understand the desire to decrease the overload of paperwork that physicians must deal with, but Colorado’s answer isn’t the right way to go about doing it. I would rather see some of the documentation rules changed than the requirement for informed consent itself.

  • emily-douglas

    I hear that, Dr. Dredd. As a former legal advocate for people living with HIV, I am staunchly in support of informed consent. At the same time, I am frustrated with how little time doctors spend with patients and how distant the possibility of a trusting relationship, in which context doctors can bring up HIV testing and assess the possible implications for a patient’s life. I don’t think bills like this are the solution, but the absence of such bills doesn’t mean that an open relationship that’s empowering for patients exists, either.

  • invalid-0

    Although I appreciate Dr. Dredd’s position that a lack of desire to document information related to HIV testing is no excuse for not offering a test, the doctor’s characterization of the documentation requirements in New York is inaccurate. Under New York law, the only documentation that is required is the signature of the test subject on the DOH-approved informed consent form for HIV testing. Informed consent does include pre-test counseling, and the law does prescribe what the pre-test counseling must include, but the law does not prescribe the format in which it is offered (oral, written, video) or that any of it be documented in the patient’s chart. The person ordering the HIV test merely has to ensure that the patient understands the information and certify on the lab requisition form that informed consent was obtained. That hardly seems like a burden, especially when you consider the implications of an HIV test.