When Conscience Limits Care
An HIV-positive woman elects to have a Cesarean section to minimize the risk of infecting her baby. She asks the surgeon to tie her tubes during the procedure to prevent further pregnancies. He refuses and tells her she will have to have a separate operation at a different hospital at another time if she wants a tubal ligation. She later finds out her insurance won't pay for this operation at any hospital -- and that it won't pay for birth control pills, either.
A woman has been sexually assaulted and is rushed to the nearest emergency room for care. The risk of HIV infection is discussed and she takes a test, but she is not told that using condoms during the next few months could prevent her husband from becoming infected. She is also not offered emergency contraception or told that a different hospital might give her something to keep her from becoming pregnant. Since emergency contraception must be provided within 72 hours of sexual intercourse, not knowing about this option resulted in her pregnancy -- and placed her in a painful personal dilemma of deciding whether to have an abortion.
These aren't real stories, but they could be. Many people do not realize that the extent of care offered by medical facilities that operate under the guidance of the Catholic Church may not be equal to care available from other, non-Catholic, health providers. Some interpretations of Catholic healthcare guidelines may prohibit medical staff from educating patients about condom use to avoid HIV infection, from honoring a patient's end-of-life requests and from even mentioning the option of abortion or providing referrals to other providers who will.
These exceptions to comprehensive care may not become apparent until a medical need arises and a requested service is denied. In cases where the full range of medical options is not discussed and no referral is offered, the gap in care may not become apparent at all. This is a particular problem for people with HIV, who often have complicated and intertwining needs for treatment, diagnosis, counseling and support. It has been recognized -- and mandated in some states' HIV care guidelines -- that services for HIV-infected people should be bundled together in facilities that enable one-stop shopping for personal and family healthcare. It's also widely recognized that barriers to care -- whether geographic, economic, cultural or social -- limit the quality of care that people receive, which can result in poorer outcomes for individuals and their families. Finally, the experience of the HIV community has made it clear that an individual's full and free participation in treatment decisions encourages a greater investment in the outcome of those decisions -- and restricting patient choice undermines the engagement of patients with their health needs.
What the Church Guidelines Mean
The guidelines that limit services at Catholic healthcare facilities are derived from elemental Church doctrines about the sacredness of human life; that life begins at the moment of conception and that interfering with the natural order of reproduction, life and death is wrong. Based on these core convictions, the personal behavior of Catholics is regulated by Church edicts against artificial contraception, artificial fertility techniques, abortion, euthanasia and the death penalty. In addition, the Church attempts to limit its complicity in these activities by not enabling or facilitating their practice by agencies and resources under its control.
The National Conference of Catholic Bishops, which represents the Roman Catholic Church in this country, has produced a document known as "Ethical and Religious Directives for Catholic Health Facilities." Often referred to as "The Directives," it is the authoritative basis for limiting the medical services that Catholic healthcare providers may offer.
While Catholic providers must "adopt these Directives as policy, [and] require adherence to them . . . as a condition for medical privileges and employment," in practice, various decision-makers are able to interpret and apply the Directives differently. Generally, it is the responsibility of a local bishop to determine how the Directives will translate into policy at institutions under his purview. A conservative diocese may interpret the Directives narrowly and demand full adherence, while facilities under less strict jurisdiction may skirt some guidelines and tease out loopholes in others. Individual providers may choose to ignore certain prohibitions altogether.
Because interpretations of the guidelines are determined regionally, and because it is difficult to obtain quantitative information about the extent to which restrictions are actually imposed or evaded, no one can precisely assess to what degree the Directives are limiting access to comprehensive healthcare. But from different parts of the United States, both studies and anecdotal reports indicate that this is not a hypothetical issue.
Many people don't realize that a significant number of hospitals and other healthcare facilities in their community may be obligated to follow Church ethical guidelines. An individual may select a doctor from a list of in-plan providers without understanding that the doctor admits patients to a hospital with limited care. Many people, because of geographical constraints, may have no convenient alternative to Catholic healthcare. Still others may find their medical options limited because of where an ambulance took them for emergency care.
Catholic facilities and agencies do not always make it clear in advertising and patient handbooks what aspects of care they restrict. Depending on a bishop's direction, the facility's administration, or an individual provider's conscience, some or all of these options may not be available:
Medical staff may be prohibited from educating patients about using condoms to prevent HIV and STD infections -- even patients who are in serodiscordant sexual relationships. The prohibition may also extend to people having homosexual intercourse where conception is not an issue. Some providers may also refuse to discuss harm-reduction techniques for active drug users.
HIV-positive women with multi-drug resistant virus could possibly be denied access to an experimental drug if a clinical trial requires that birth control measures be used.
Unfortunately, it is common for women to find out they are HIV-positive at the same time they learn they are pregnant. At a Catholic facility, the provider may be forbidden to discuss a woman's option to abort the pregnancy.
Staff at a Catholic facility may refuse to honor a patient's end-of-life request to reject artificial nutrition and hydration.
Some Catholic facilities may not offer referrals -- or even inform patients about the opportunity for services they do not provide. This leaves the least informed patients with an impression that no other options exist. Even facilities that choose to provide referrals can create unreasonable barriers by requiring that patients go elsewhere for important aspects of their care.
Healthcare advocates are also concerned about Church lobbying to restrict research on stem cells, restrictions on in vitro fertilization, artificial insemination, sterilization and tubal ligation. The experimental technique of "washing" sperm to safely allow an HIV-infected man to father a child may also fall outside of Church guidelines for natural insemination.
While healthcare providers affiliated with other religious bodies may impose limits on certain aspects of care, primarily abortion, a national organization called The MergerWatch Project asserts that none are as restrictive as Catholic healthcare providers. More than 11 percent of the nation's community hospitals are Catholic facilities, and they account for more than 16 percent of community hospital beds, according to the Catholic Health Association of the United States. Some Catholic hospitals and hospital networks further extend their ethical reach by applying the guidelines to all affiliated outpatient clinics and even to non-Catholic tenants of Church-owned office facilities.
Today, many financially secure non-profit Catholic hospitals have become key players in what some have called "merger mania." As the trend towards consolidation within the healthcare industry continues, an increasing number of resources are coming under the control of a relatively small number of decision-makers. When secular healthcare organizations agree to merge or form partnerships with Catholic hospitals and healthcare systems, the terms of these agreements can extend Catholic ethical policies to the non-Catholic facilities. For a secular organization pressed to merge out of financial necessity, adopting the Catholic restrictions as part of an alliance that keeps the doors open may seem like a small compromise.
Other quasi-business entities that affect people's healthcare can also be governed by religious guidelines. Non-profit HMOs and insurance companies guided by Church policies have been allowed to limit the care available to their customers. Some insurance beneficiaries, including people who receive health insurance through Medicaid, have been shuttled into these HMOs without being told that they will not receive comprehensive medical care.
For non-Catholic hospitals entering business relationships with Catholic hospitals, one strategy to preserve family planning services has been to negotiate exceptions to the rules at the non-Catholic sites. But recently, the National Conference of Catholic Bishops has become more assertive with its members and their healthcare facilities about implementing the Directives. At a June 2001 conference in Atlanta, the Conference declared sterilization to be "intrinsically immoral" -- implicitly telling Catholic hospitals that their non-Catholic partner hospitals should not be providing sterilization services at all.
Lois Uttley, vice president of The Education Fund of Family Planning Advocates of New York State (MergerWatch's parent organization), suggests that the Conference "cracked down" as a direct response to some of the creative compromises that have been used to skirt Catholic regulations. "I think what this signals is a tightening of the hold of the hierarchy," she warns.
With Catholic providers strengthening their control over an increasingly large portion of the healthcare marketplace, it is reasonable to anticipate that denials of service arising from ethical mandates will multiply in the future.
Where the System Breaks Down
It's often suggested that the best accommodation between reality and the restrictions is a "work-around" tactic commonly used by sympathetic medical personnel at Catholic healthcare facilities. It's not known how many or how often providers sidestep their employers' rules and simply share information they deem appropriate with patients on a private basis, but some say this is the best way to help patients without making waves.
Uttley holds that this is no solution at all."I call it the 'don't ask, don't tell' policy in healthcare, and it's a very dangerous policy," she says. "It opens the door for anti-choice or anti-gay people in the hospital to 'rat on' physicians who are violating the [restrictions]." Physicians and nurses can face grave repercussions, including dismissal -- particularly those who signed statements pledging adherence to the hospitals' ethical policies. Refusing to sign such a statement is not necessarily an effective means of protection. At least two physicians who did so have been fired or refused admitting privileges, according to Uttley.
Religious exemptions from city, state or federally mandated standards of care have been granted in exchange for pledges to refer patients to appropriate service providers when ethical restrictions limit that care. Yet the mechanisms for monitoring and enforcing the effectiveness of these makeshift solutions have received little attention. How can the funding agency insure that people are properly referred or even informed that referrals are available? Furthermore, referral may not be practical or humane in some cases. A terminally ill patient who has requested that artificial nutrition and hydration be removed may not realistically be able to arrange for care at another facility during his or her last days.
Uttley also cautions about grave shortcomings in the referral policies that some Catholic facilities enact to mollify their critics. She points to New York State's policy of providing Catholic facilities with blank envelopes containing referral lists compiled by the state department of health. "This envelope is simply handed to the patient. In our view it's an unconscionable compromise. An appropriate referral is to say, 'I don't have this service available, but let me call such-and-such a place and make an appointment for you.'" Some feel an even better accommodation would be to provide transportation to and from the off-site provider.
GMHC's Director of Health Policy, Susan M. Dooha, agrees. "The problem with referral schemes is that they compromise the 'one-stop shopping' principle that has been proven essential to effective healthcare, and creates additional barriers for already overburdened HIV-positive people."
Dooha maintains that accepted standards of care should be maintained when church-affiliated healthcare providers enter into contracts with government. "The state," she says, "which represents you and me, shouldn't allow watered-down care to be paid for with our tax dollars. If a hospital receives Medicaid funding, for example, the public should expect to find a full range of Medicaid-covered services offered. And if an HIV provider is dependent on public money, it should be expected to provide barrier-free care. If you ask people to jump extra hurdles to access essential services that should be part of a package, then you can expect that someone will be harmed when they don't get the care they need. Government has a duty to prevent that harm."
How Healthcare Advocates Are Responding
Healthcare advocates, especially those focusing on reproductive rights, have formed networks that oppose religiously influenced healthcare on the local, state and national levels. Different groups are working on various priorities and strategies. MergerWatch, for example, monitors business transactions that threaten reproductive healthcare and helps community members fight to retain reproductive health services in the new networks.
On a different front, Californian advocates scored a victory in 2000 with legislation to mandate that consumers are informed about providers with restrictive policies. The legislation requires insurers to clearly disclose in provider guides and promotional materials which services may be restricted.
Many established groups and coalitions actively working on these issues offer HIV/AIDS organizations and concerned members of the public an array of resources and opportunities for local action. Lourdes Rivera of the National Health Law Project recommends that local advocates "really scrutinize the services currently available in the community." By doing an inventory of what is and isn't provided, advocates can arm themselves to fight efforts to further reduce patients' options.
MergerWatch's Uttley urges people to document cases in which patients have been denied information or services. MergerWatch and other groups utilize this information in their campaigns. (To report cases to MergerWatch, go to www.mergerwatch.org.)
This information can also be used to alert the community about objectionable policies already in place. "Look at how a community hospital advertises itself," says Rivera, who is managing attorney of her organization's Los Angeles office. A hospital may claim to offer a "full" array of HIV/AIDS services or reproductive services, for example, while it actually adheres to religious restrictions. People make choices about care for themselves and their families "based on what the institutions say they are providing," Rivera states.
The reproductive health community has been actively alerting affected communities, including those involved with HIV/AIDS, to the public health implications of religious-based limits on access to care. GMHC's Dooha encourages HIV/AIDS organizations to grapple with this issue, noting that dealing with restrictions to access can help make specific prevention and care measures more effective. "People with HIV don't need single services in a vacuum," she says. "Quality HIV care involves the whole ball of wax."
Back to the GMHC Treatment Issues September 2001 contents page.