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Friday, September 12, 2008

Session 6: Public Comments

Borchelt, Uttley, Mikochik, Klaus, Christiansen, Fogel, Taqi, Harrison, Goulart, Goldschein, Imbody, Benzio

(Additional Written Public Comments)


CHAIRMAN PELLEGRINO:   In this part of the meeting, we proceed as follows. Each of you has registered, and only those registered will be called upon to comment. Because of time limitations, we customarily allow five minutes. I will call you your name and your affiliation and suggest, I hope, with apology, that brevity, focus, and clarity is the best way to get your message across. It will get into the record and will be available. Without further ado, we ask you to try to – not only try to but to keep the five-minute limit. First I will call on Gretchen Borchelt – forgive me if I've mispronounced the name – of the National Women's Law Center.

MS. BORCHELT: Thank you, and I will try to keep to five minutes, as requested. My name is Gretchen Borchelt, and I am a senior counsel with the National Women's Law Center here in Washington, DC. The center has been in existence since 1972, working to improve the lives of women and girls in this country. We're a nonpartisan, nonprofit organization.

A major focus of our work has been the issue of religious refusals to provide health care services. And our main goal is to ensure that religious restrictions on health care are not imposed to the detriment of women's health. And I did provide written comments which focus on the impact of religious restrictions on health care services for all patients, and in particular the impact on women's reproductive health.

But I was wanting to speak today about something else that is in my written comments, which is the legal landscape. I think it's particularly relevant given yesterday's discussion. We heard a lot of talk yesterday about the issue of accommodation and whether religious beliefs and patient's needs could be accommodated. And I think we could look to the law and find an answer there, which is that Title VII, which is the federal law that prohibits employment discrimination on the basis of religion, has been in existence. It's part of the Civil Rights Act of 1964. And what is says is that employers cannot refuse to hire or cannot fire employees based on their religious beliefs or practices. It also says employers cannot discriminate or treat employees in an unfavorable [manner] in the terms of employment, such as assignments and benefits, because of the employee's religious beliefs.

And so courts that have interpreted Title VII have said that an employer has a duty to provide a reasonable accommodation to employees who have religious beliefs as long as that accommodation does not constitute an undue hardship on the employer's business. So courts have said — it's very clear that Title VII is a working accommodation system that provides a careful balance between an employer's need to protect an employee's religious beliefs and the needs of the people that the employer serves.

And I would say that this accommodation system does work, and we heard yesterday from Dr. Brody, who said that in the Michigan legislature, when they were considering a very broad refusal bill, none of the legislators could actually come up with an example of someone who had been fired or discriminated against or forced to perform a service that he or she didn't believe in. And I believe that's because Title VII is working, and in the employment context you are seeing accommodations being made. So I would urge the Council to, when you're thinking about an accommodation system, to look at Title VII and how it's been used in the health care field, because it actually has been. There have been many cases about health care providers' religious rights to refuse and how the patient needs to be accommodated.

The other thing that I would like to mention today briefly is the proposed regulation that the Department of Health and Human Services put out last month, which I know is included in your briefing materials. And I would just say the proposed rule, according to HHS, is meant to inform providers about their legal obligations under three laws. And you heard about the laws yesterday. They're also in your background materials. They're the Church Amendment, the Coats Amendment, and the Weldon Amendment, and they give providers the right to refuse to provide abortion or sterilization services.

Now HHS says that the intent of this regulation is to clarify existing law, but in fact it would do just the opposite. The language is very expansive and very ambiguous, and in fact it would cause confusion for health care providers, for state and local governments, and for research institutions. And one of the problems is that the proposed rule doesn't include a definition of abortion, and it leaves the door open for insurance plans and hospitals and other entities to define abortion in any way they choose, and that could reach common forms of birth control.

Another problem with the proposed rule is that it doesn't talk about how it interacts with Title VII. It seems that it could even be meant to upset the kind of careful accommodation system that Title VII has put into place and which is working. And so it's very disturbing that Title VII isn't even mentioned in this rule at all, which, again, will lead to confusion in terms of how the system is already working.

The proposed rule also undermines patients' access to information, to counseling and to referrals, and it also says nothing about protecting patients in emergency situations. And I know those were all situations that were discussed yesterday.

And then finally, I should mention, just as troubling as that, the rule would expand the realm of who can refuse and on what circumstances. So Dr. Paris yesterday questioned how far the Church Amendment could go, and he wondered whether it should apply to, for example, staff stocking pharmacy shelves or staff who administer claims in the office. And this proposed rule would reach all of those types of employees and many more.

So we are very troubled by this proposed rule, and I urge the Council to consider it carefully and to make its views known to HHS in terms of how far-reaching and unnecessary this proposed regulation is.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you very much. Next on our list is –

PROF. ROWLEY: Can I ask a question? Did you say that you have a fuller statement that's been submitted to the Council?


PROF. ROWLEY: And I guess the question is, do we have it in our briefing books?

DR. DAVIS: It will be appended to the transcripts. We have a number of them, and they've been coming in in series. We couldn't get all in the briefing books. So what we're going to do is append them to the transcript. They'll be part of the official record. They'll be available to you as well as the public.

PROF. ROWLEY: Thank you.

CHAIRMAN PELLEGRINO: Next on our list is Lois Uttley. I'm sorry – again, I apologize if I'm wrong – of the Merger Watch Project.

MS. UTTLEY: Yes. It's Uttley. Lois Uttley. Thank you very much, Chairman Pellegrino. I'm the director of a project called Merger Watch, and the project is about protecting patients' rights and access to care in situations where religiously sponsored hospitals are merging with nonsectarian hospitals, and helping to devise ways of balancing these conflicting rights and obligations.

I've come this morning to talk mostly about the discussion you had yesterday about provider conscience and reproductive care, but I do second the comments of Dr. Dresser about how there are some interesting implications for end of life care as well in which providers may not wish to honor patients' wishes.

My written testimony, which I submitted, uses a case example to take you through the situation of a rape victim who goes to the emergency room and is not provided with even information about emergency contraception. I cannot go through that whole case this morning in my brief opportunity, but I recommend that you take a look at it.

I just want to hit a couple of key points, though. As your council discusses the issue of provider conscience, I really urge you to consider another imperative to protect the rights of patients to receive accurate medical information in need of treatment in a timely manner and to use their own ethical beliefs in medical decision making.

I was quite struck yesterday with a discussion about patient-centered care, which I had assumed was something that most of us agreed with and is an aspiration of the profession, but there was some suggestion yesterday that perhaps it would lead to the subjugation of a physician's clinical judgment to the uninformed demands of a patient or turn the physician into a mere technician filling consumer demands.

I think you might all agree that the Institute of Medicine definition of patient-centered care is more appropriate: health care that establishes a partnership among practitioners, patients, and families to ensure that physicians respect patients' wants, needs, and preferences.

So I want briefly to comment also on the health and human services regulations that have been issues that are in your packet. Secretary Levitt has insisted that he proposed regulation would not in any way change a patient's right to a legal procedure, would not limit patient access to care. And I think you'll see from the analysis I've presented of the rape victim case that that really is not the case. In fact, those regulations would allow health care practitioners and health care institutions to violate a patients' right to informed consent by refusing to tell the patient about those potential treatment options that the provider finds objectionable, would allow health practitioners to refuse to provide patients with any medical services or information the provider finds morally objectionable even for reasons that are completely contrary to medical science or based on discriminatory views.

Further, it would allow the health practitioner to refuse to even provide the patient with a referral to another practitioner. It would obligate nearly 600,000 health care institutions to certify that they do not discriminate against practitioners with moral objections to certain services but with no similar obligation to certify that patients' medical needs will also be met.

So I want to recommend that this Council carefully look at those HHS regs, and I would urge that you recommend maybe withdrawing and giving future consideration. And I want to recommend that you also, in drafting any white paper about provider conscience, put in some ways in which patients rights should be protected, including patients' right to informed consent must be considered paramount, acute care hospitals and other health care facilities that are licensed to serve the general public and receive patients needing emergency care must be expected to provide such care immediately.

I wish you would protect the ability of nonobjecting health practitioners to fulfill their duty to their patients when they are working in facilities that wish to gag them and prevent them from fulfilling their duties.

And, finally, I would urge that for nonemergency care referrals to alternative practitioners or facilities must be expected in situations in which the institution or provider disagrees for a moral reason.

So thank you so much for the opportunity to present this testimony.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Stephen Mikochik of the National Catholic Partnership on Disability.

MR. MIKOCHIK: Thank you, Dr. Pellegrino, for the opportunity to speak. Unfortunately I don't have a PowerPoint presentation. I want to speak for a few minutes, if I could, on the issue of futile care and the concerns that we disabled people have about the practice. And we're talking about care, particularly the withdrawal or withholding of life support by a physician contrary to the wishes of their patients or their surrogates.

Just to introduce myself, my name is Steve Mikochik, and I'm a professor of Constitutional law at Temple Law School in Philadelphia. I'm also the chair elect of the National Catholic Partnership on Disability. This is an organization that was established by the United States Catholic Bishops to implement their pastoral statement on the rights and needs of persons with disabilities.

We are – “we” meaning the 14 million American Catholics, who we represent – concerned about futile care. And, simply put, we're concerned that cost containment and the pressures to contain costs are going to have a strong influence on doctors in the future, as they do presently, to withdraw or withhold life support, not because they think it's futile in prolonging the lives of disabled people, but because they think the lives that such treatment prolongs are themselves futile.

Doctors are human, and they share to some extent the same negative attitudes that pervades society concerning disability. And if you couple that with cost containment, it poses a problem. I think it blinks reality to ignore or deny the fact that physicians in the future will make decisions about life support for disabled people based on the physician's perception of the quality of that life. And, more disturbing, I think, insurers are going to be, I think in the future, far less likely to pay for that support than they are now for disabled people to continue their lives.

I think particularly the problem of insurers less likely to pay might offset the reluctance physicians have – as pointed out by Dr. Pope – to resist the requests, particularly of surrogates. If insurers are less likely to pay for the continued life support, that's going to be an additional incentive on the part of physicians to decline, withhold, or withdraw it. The landscape legally is very receptive now to that type of decision by physicians.

I find it very uncomfortable to disagree with someone named Pope, but I do have to disagree to some extent with his characterization of the Texas law. This was a 1999 law that Texas passed. It as a compromise provision. We in the National Catholic Partnership on Disability were informally but substantially involved in 2007 with the Texas Catholic Conference on this issue. The reason is because the Baby Emilio case arose from a Catholic hospital in Austin.

Dr. Pope is right to say that there is no definition of appropriate or inappropriate care in the Texas statute, but he didn't mention that the statute only applies to the withholding or withdrawal of treatment if the patient is qualified. And the statute says to be qualified a patient either has to have a terminal condition or the patient has a condition that is permanent and prevents the patient from making decisions for herself or for caring for herself and would prove fatal if the life support in question was removed.

Now you can kind of sit back and think about horrible hypotheticals – you know, somebody who is profoundly developmentally disabled is unable to make decisions for themselves. Or somebody who is a quadriplegic and has problems breathing is unable to care for themselves. You'd say to yourself, “Well, the legislature never intended the statute to apply to that situation.” Except the Supreme Court of Texas has said if a statute is plain on its face – and this statute is – a court cannot look at the legislative history. Right? So the statute is to be applied on its own four terms. And obviously this is an open invitation to making quality of life decisions concerning futile care, concerning the perpetuation of life support for disabled people. And, as Dr. Pope indicated, it understates the broad flexibility given to physicians to withdraw life support because they consider it inappropriate or ineffective.

Now, I'm not trying to criticize Dr. Pope. I know he's making a good-faith effort to deal with these issues. But I gather from what he was saying, the less standards the better because the process should deal with it without any intervention of external standards. The problem with any process-based determination is that it perpetuates prejudices concerning what is reasonable. This is why, for example, historically we haven't let legislatures make decisions concerning the free exercise of religion, because their decisions would promote the exercise of a majority of religions, but religions like Jehovah Witnesses or Seventh Day Adventists that aren't majority religions wouldn't get the same accommodation because they don't fit into to the kind of basic notion of what is a reasonable religious practice. We don't let legislatures historically make those judgments. We require that they adhere to external standards. You shall not prohibit the free exercise of anyone's religion, majority or minority.

If we're talking about ethics committee decisions – and remember in Texas they're not subject to judicial review. Courts in Texas can review only whether there are alternative placements available. They cannot review whether the decision to withdraw treatment is inappropriate. An ethics committee is quite likely to carry forward the same prejudices concerning disability as are pervasive in the rest of society.

Now, we know this is a terribly difficult issue. We've submitted for your review a statement that we developed and approved this summer trying to lay out standards that call for a strong presumption in favor of continued life support. We're not experts in the area. You are. But we ask you, in considering what policies to recommend to the President on the issue of futile care that you recommend policies that strongly presume in favor of life support so that the decision to withdraw or withhold treatment is made not on the quality of the life involved but on the quality of the treatment at issue, because we think that it's not too much to say that the lives of countless disabled people hang in the balance.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Dr. Hanna Klaus of the National Family Planning Center of Washington. Dr. Klaus.

DR. KLAUS: Thank you very much. I appreciate the fact that I'm allowed to speak with you. I'm sorry that Dr. Lyerly is not here, because I want to comment on the ACOG committee decision, the ethics committee. I'm a life fellow of ACOG, a longtime obstetrician/gynecologist, and I've seen ACOG change completely from the focus on saving the mother and the child to disregarding the child entirely, even though ACOG still has the logo of a woman holding up her baby.

But listen to this. Obviously I think we've already said that if someone is opposed for any reason to doing an abortion, they cannot be forced to do it. But more and more people who are opposed to abortion are sort of forced out of this specialty, limiting the choice of doctors available to patients. Not a week goes by that I don't get asked, “Can you recommend a pro-life obstetrician/gynecologist?” And, by the way, I live in this metropolitan area. “Can you recommend someone who will treat natural family planning choices with respect?”

I wish there were far more people who are doing that. And that brings me to the question of “Who defines the standard of care?” We've shifted in the last half century from restoring health or at least alleviating disease and preventing death to providing technical support for lifestyle changes, some of which involve considerable long- and short-term risks to life and health.

Fertility is not a disease, yet we have attacked it as if it were. When treating pathology, the physician weighs the possible benefits against the possible risks, but there is no risk in possessing normal fertility, whose control can be managed easily with modern natural family planning methods.

Examples abound of instances where drugs with long-terms risks of pathology are prescribed or dispensed on demand. For instance, in Los Angeles a contraceptive steroid is given regularly to women of Mexican extraction even though it is known that they are quite likely to develop diabetes mellitus Type 2 within 15 to 20 years. Another example of that is the treatment of polycystic disease of the ovary. I realize I am getting into specialty areas here, but this is widely known and yet women and girls continue to receive contraceptive steroids because they might get pregnant, as I heard at a specialty meeting. Never mind that in 15 or 20 years they're going to be at high risk for diabetes and all the costs to them and to society, plus the fact that when contraception is made widely available the result is promiscuous behavior and tremendous rise in sexually transmitted diseases and also a lot of unplanned pregnancies.

Fifty-eight percent of woman who came for abortion, according to the last national survey of Family Growth, were using contraception during the month of conception. So that's no great triumph. The same thing happened in Scotland, when they gave women emergency contraceptive pills and the abortion rate didn't go down. And this is a very large study through a WHO.

I would also submit that the articles which the ethics committee selected were [strategically] selected [to support only one point of view]. They did not show anything, for instance, that would cause anyone to suspect that emergency contraception with Plan B was not the only way to go. In fact, it isn't. EC does not have that high a success rate either. It's only useful if it's given before the final phase of ovulation begins, and yet this is being put out as if it were a wonderful thing, frankly to profit many people who provide pills.

So I would suspect that we need to ask, first of all, for support for physicians to practice according to their conscience and to make sure that physicians who have that conscience position are available to women who want that same choice.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you very much, Dr. Klaus. Our next speaker is Dr. Sandy Christiansen of Care Net.

DR. CHRISTIANSEN: I think I can say good afternoon, Chairman and distinguished members. It is my privilege to be here.

As an obstetrician/gynecologist who has chosen not to perform elective terminations of pregnancy, I can attest to the difficulties and pressures that physicians face when attempting to practice according to their conscience. When I began my residency in 1986, I fully expected it to be physically and emotionally draining, but I wasn't prepared for the intolerance and hostility that I would face because of my faith. I was the only intern who elected to not perform abortions, and it was understood that it was because of my Christian convictions. One of my fellow interns was frequently given the opportunity to scrub in on gynecologic cases, and I approached my chief resident and inquired, “I would like the same opportunity.” And she said, “Well, this person was working hard at doing the abortions, and so she gained this privilege, which you refused to do, so you do not get the perk.” At the time, I did not question this injustice, believing I didn't have any recourse, but since then I've come to understand that I missed learning opportunities simply because of my values.

Another incident that occurred during my residency training is a flagrant example of discrimination and disrespect. I was chief resident at this time now. Several years have gone by, and I was in charge of the obstetrical service. A patient came to the labor floor who was to have a late mid-trimester abortion, and I approached my attending physician and explained that I was uncomfortable participating in this patient's care because of my beliefs, but I had made arrangements with another resident to take care of this patient. She proceeded to reprimand me loudly in front of my team of residents, interns, and students, accusing me of abandoning my patient, of shirking my responsibilities, and being insensitive to my patient. Not once did she acknowledge the legitimacy of my action or the fact that this patient was being well taken care of. I was stunned by this outburst, which not only denigrated my values but my character and professionalism as well.

Today, these are not isolated incidents, sadly, but part of increasing pressures that health care professionals are facing to conform to the socio-political dogma of reproductive rights, of which the November 2007 ACOG Ethics Committee Opinion is a good example. A recent survey from the Christian Medical and Dental Association noted that 40 percent of respondents had experienced some level of discrimination during their lifetime based on their pro-life views.

Recently I spoke to a group of students from the University of Maryland and Johns Hopkins School of Medicine. Our future health care providers, doctors, nurses, and scientists are also concerned about these issues, and that's partly why I'm here today — for them. My hope is that through Secretary Leavitt 's proposed regulations that our future health care providers will be free to practice according to their conscience without the fear of loss of learning opportunities, reprimand, or loss of their very jobs.

This is not just simply a religious issue nor simply a reproductive rights issue. I believe it speaks to who we are as a society and what we value. Last week Los Angeles Times included an op-ed from someone named Crispin Sartwell, who identified himself as a pro-choice atheist but went on to say that he supports Secretary Leavitt's proposed regulations, which I believe are designed to bolster existing laws supporting conscientious refusal. I couldn't agree more with his statement, and I quote:

The extent to which an institution seeks to expunge individual conscience and moral autonomy is the extent to which it is totalitarian and dangerous. The idea that I resign my conscience to the institution or to the state is perhaps the single most pernicious notion in human history. It is at the heart of the wars and genocides of this century and the last.

In closing, last week, I read about Randy Stroup of Oregon, who was diagnosed with metastatic prostate cancer and applied for health insurance, which the state denied because it was calculated that he had less than a five percent chance of surviving. But the State had an alternative solution for him: they were willing to pay for his physician-assisted suicide. Brave New World, here we come.

Lastly – I'm about to close here. I feel that we really have fallen so far from the ethical and moral principles that founded the practice of medicine, and I will close with a comment about Francis Schaefer 's and C. Everett Koop's 1979 book Whatever Happened to the Human Race. They wrote of society being on the edge of a great abyss, and from my view I feel that our ride on the slippery slope in fact is taking us into the abyss. And it is my hope that someone – and hopefully this group here – will throw us a big rope, because I believe that supporting physicians' First Amendment rights protects the First Amendment rights of us all.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you, Dr. Christiansen. Our next speaker – yes, sir?

DR. HURLBUT: Could I ask the speaker where your training took place, where those incidents took place?

DR. CHRISTIANSEN: I'll say Philadelphia.

CHAIRMAN PELLEGRINO: Our next speaker is Susan Fogel of the National Health Law Program.

MS. FOGEL: Thank you, Dr. Pellegrino and Council members for this opportunity to speak on this really critical issue of patient care and refusals.

I'm an attorney with the National Health Law Program. We're a national public interest law firm that works to improve access and quality of care for low-income people, minorities, people with disabilities, and the elderly. And we approach the issue of refusals and religious restrictions from that perspective.

I also want to echo some of the comments that have been made that raise concerns about the HHS regulations. I think everything that I want to say again emphasizes why those regulations really threaten quality and predictable delivery of health care. I have also submitted written comments, so I just want to make a few points.

We've already heard – and you all know – that the basics of modern health care delivery are evidence-based practice, patient centeredness, and prevention, which collectively are intended to ensure quality of care. Failure to adhere to prevailing standards of care and accepted medical practice really harm individual patients in very concrete ways.

I think too often the analysis of health care refusals becomes a debate that sounds like a moral contest between providers and patients, and what gets left out of the conversation is the real medical consequences to patients. There is real patient harm that needs to be considered in this analysis. Certainly the individuals for whom we advocate are the most vulnerable and really suffer the greatest consequences.

This debate often seems to rest on certain assumptions that we think really need deeper analysis. One is that the services to which people are objecting or refusing to deliver are optional elective lifestyle, not necessary to health or well-being, and are based on just whims and desires of women. The second challengeable assumption is that there only limited or acceptable burdens on people. And third is that the patient can obtain these services elsewhere.

I think that for low-income women in particular all of these assumptions are erroneous. Lower income women often don't have access to health care, they are locked into managed care plans, they perhaps can't afford to pay for treatment out of pocket, and they – even in urban areas, if they have health insurance we know that limits their treatment options. So we don't want to think about this as an abstract or philosophical debate but really something that has real impact on patients.

In addition to health care refusals there's been a lot of talk about individual providers. I want to make sure that we also look at the other side, which are institutional restrictions which prohibit providers from offering care that they and their patients may have decided is appropriate in accordance with medical standards of care.

There was an article in the American Journal of Public Health just last month, I think, looking at miscarriage management and real incidents of what has happened in hospitals that prohibit physicians from acting what they consider to be in the best interest of their patients.

There's a story about a doctor. All of the names in the study are anonymous, but he had a patient who was 19 weeks pregnant. She had a premature rupture of her membranes. The fetus was not yet viable. The patient was septic. She had a dangerous infection that was threatening her life, but the fetus had a heart beat, and the hospital refused to allow him to terminate the pregnancy. And, as he said, we were giving her medication to keep her blood pressure up, using a cooling blanket to keep her temperature down. The woman was dying before our eyes, and still the termination was not approved. The outcome is the patient was in the ICU for ten days. The fetus died in utero, and she suffered significant health — long-term health problems.

We also want to look at the fact that in a health care patient provider relationship there is an inherent imbalance of power. Part of that power is based on the knowledge and judgment of the health care provider. It is erroneous to suggest that patients come into this relationship in an equal balancing position. Also, restrictions on information services don't take place in an open marketplace. We know patients don't really have – often don't have good choices.

So contrary to the modern trends of health care delivery of evidence-based, patient centered, health care refusals and denials of care really are taking women's health backwards to a paternalistic health care system where treatment decisions are made by physicians and systems, not by physicians and patients.

Medical guidelines give us some really concrete guidance, I think, and ways to analyze the impact of these restrictions. I just want to give a couple examples, not of what medical associations say about refusals, but if we think about the fact refusals are permission to opt out of providing care that would otherwise be accepted medical practice.

So what do they say? We know they all talk about informed consent. Informed consent is intended to help begin to balance the relationship between providers and patients. The American Medical Association says the physician's obligation is to present the medical facts accurately to the patient. The physician has an ethical obligation to help patients make choices among the therapeutic alternatives. Obviously if providers are allowed to opt out of even discussing those alternatives, we really have to question whether there is even a possibility of real, informed consent.

There also are many medical conditions for which contraception and pregnancy termination can be medically indicated. I think a recent study showed there were 11.7 million prescriptions for potentially teratogenic medications filled every year by women of reproductive age. Now, needless to say those women need access to contraceptives to protect their health.

In fact, you may all know about Accutane. It's an acne medication. The impacts on a developing fetus are so significant for women taking Accutane that the FDA has a program called I Pledge where women actually – and physicians – are supposed to sign in and register. Women are advised, they have to be on two forms of contraceptive, and the FDA says that natural family planning is not an effective method of birth control.

In examples of pregnancy termination, even when there is an intended or a wanted pregnancy, there are times when pregnancies go awry. We know that women with serious cardiovascular conditions, women with lupus, women with epilepsy may face a difficult decision about whether or not to terminate a pregnancy. Premature rupture of membranes, preeclampsia. These are all conditions where women need to get good information, be well counseled, and she and physicians need to make good decisions about whether they want to continue a pregnancy to term by balancing women's health versus the potential for a viable birth outcome. But religious restrictions and refusals take those decisions away from women and away from providers and put those decisions back in the hands of – often in the hands of institutions that are making decisions based on religion and ideology and moral beliefs but that have nothing to do with evidence, have nothing to do with patient-centeredness.

So in conclusion, we just want to bring the conversation back to what happens to patients, real health outcomes, and look at those qualities when we're analyzing refusals.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Irum Taqi. Again, if I've mispronounced it, I apologize.

MS. TAQI: Good afternoon. You pronounced it correctly, actually. My name is Irum Taqi. I am Assistant Director of Public Policy at Physicians for Reproductive Choice and Health. Physicians for Reproductive Choice and Health is a national nonprofit organization based in New York City comprised of doctors who support evidence-based reproductive health care for every American. We work with governmental entities, the media, the public, and our colleagues to ensure that all patients have access to quality services as well as the knowledge and freedom to make their own decisions about their reproductive health.

Dr. Anne Davis is an associate professor of Obstetrics and Gynecology at Columbia Presbyterian Medical Center in New York City, and she is also the medical director of Physicians for Reproductive Choice and Health. Dr. Davis could not be here today, so I am going to read an abridged version of her written testimony on her behalf addressing the specific issue of conscientious refusal in the provision of reproductive health care.

“I am an academic obstetrician/gynecologist and specialist in family planning. In my practice, I provide the full range of contraceptive services, including birth control pills, patches, rings, injections, emergency contraception, IUDs, and surgical sterilization. I also provide medical and surgical abortions. I work with women who have commercial insurance and Medicaid, as well as uninsured women. When patients come for consultations, I provide complete and factual information about their options. Some talk to me about reproductive health issues as they relate to the practice of their religion. My practice includes Catholic, Jewish, and Muslim women. Others discuss their moral or ethical concerns. In every case, we decide together on the care that best meets their medical, religious, and moral needs. If they need a service I cannot or will not provide, I refer them to doctors who can. The principles I follow — helping my patients make informed decisions about their health and ensuring that they get what they need in a timely, sensitive manner even when I am unable to provide it — keep people safe. These principles are not unique to me, nor are they radical. They are the underpinnings of the medical profession.

“Yet recently the Department of Health and Human Services (HHS) has threatened to cast these principles aside. The department has proposed regulations that could allow hospitals, doctors, and other health care workers to deny women access to effective birth control, regardless of the consequences for their health. These regulations would protect clinicians who refuse to provide patients with factual information about or referrals for basic health care services like sterilization and abortion and would even protect workers who are not directly involved in patient care.

“The HHS regulations allow healthcare professionals to stonewall my patients whose chronic illnesses make pregnancy potentially lethal by withholding information about contraception or abortion. I am reminded of my patient Sara, an orthodox Jewish woman who has seven children and a diagnosis of breast cancer. In consultation with her husband and her rabbi, we chose an IUD as the appropriate contraceptive method to maintain her health and accommodate her religious beliefs. If the regulations go into effect, women like Sara could be left unprotected and at risk of worsening illness and even death.

“Physicians for Reproductive Choice and Health and I believe that individual physicians may refuse to perform medical procedures that conflict with their religious or moral beliefs. Existing law amply protects this right, allowing individuals to abstain from providing abortion and sterilization services while simultaneously honoring patients' rights to reproductive health care. The proposed regulations, however, would sacrifice the patient's well-being in favor of the provider's conscience.

“Physicians have a professional duty and obligation to tell their patients if their religious or moral beliefs might compromise the patient's access to comprehensive and timely reproductive health care — and yet the HHS regulations make no mention of this obligation. If a physician refuses to prescribe birth control pills, perform a tubal ligation, provide medical or surgical abortions, or discuss emergency contraception, women have a right to know this prior to accepting treatment by the physician. If doctors fail to disclose that they do not provide the range of family planning services, patients might face misinformation, additional costs, dangerous delays in care, unintended pregnancies, and less safe abortions. I have had patients whose medical problems are accompanied by enormous turmoil and pain, and I want to help them as quickly as possible. But the HHS regulations would only make these situations worse, adding to patients' confusion, frustration, and desperation.

“As an ob/gyn, my primary obligation remains with my patients. If I were a neurologist or a podiatrist, I would uphold the same standard. Physicians do not have the right to impose their beliefs on patients.

“Accordingly, physicians who refuse to provide health care must, at a minimum, be required to refer their patients to a doctor who can provide them with accurate information and medical care in a timely, appropriate, and respectful manner.

“Physicians for Reproductive Choice and Health supports the American College of Obstetricians and Gynecologists committee opinion issued last year.

“In conclusion, I'd like to say that women in the United States already face a host of legal, financial, and logistical obstacles in obtaining the full range of reproductive health care. We should make basic health services more accessible, not undermine the doctor-patient relationship and cause harmful delays in treatment.

“The HHS regulations would limit patients' access to medical information and basic services, and my conscience refuses to go along.”

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Dr. Donna Harrison, President of the American Association of Pro-Life Obstetricians and Gynecologists.

DR. HARRISON: Members of the Council, thank you for allowing me to address you. My name is Dr. Donna Harrison. I'm a Diplomat of the American Board of Obstetrics and Gynecology. I am also president of the American Association of Pro-Life Obstetricians and Gynecologists. AAPLOG is one of the largest special interest groups within the American College of Obstetrics and Gynecology, and I address you on behalf of our membership of 2,000.

On behalf of the AAPLOG membership I am asking the President's Council to consider writing an opinion on three ethical questions pertaining to the attack on our rights of conscience as health care workers: number one, the attack on our right to conscientious refusal to perform or refer for abortions; number two, the use of the power of a professional licensing board to discriminate against physicians who do not comply with a controversial ethical position; and, number three, the use of flawed and biased ethical analyses as the basis for judgment of health care providers' ethical character.

All of these current issues arise from the continuous professional harassment which pro-life physicians experience from the American College of Obstetrics and Gynecology. Now in conjunction with the wording of the new maintenance of certification requirements of the American Board of Obstetrics and Gynecology, I have attached in paper format and electronic format – I've submitted to this council documentation of what I'm saying in this report.

ACOG's effort to eliminate pro-life obstetricians and gynecologists from practicing is long standing. We have been battling the right of conscientious refusal for the last twenty years, as illustrated by the past and current continuous effort to make participation in abortions mandatory for Ob/Gyn residents in training programs. I also experienced very similar harassment as Dr. Christiansen during my residency program.

However, the latest effort has been to officially attack the ethical character of pro-life Ob/Gyns who refuse to perform or refer for abortions. In January of 2008 the American Board of Obstetrics and Gynecology, which is the professional body determining board certification and which should be separate from ACOG, stated in writing that noncompliance with ACOG “ethical statements and principles” would be grounds for revocation of board certification. Board certification is necessary for an OB/Gyn to obtain hospital privileges nationwide.

Despite numerous letters from AAPLOG, pro-life physicians, and organizations across the country, the American College of Ob/Gyn has not rescinded its controversial ethical statement 385, which states that, number one, pro-life physicians must refer for abortion; number two, patient autonomy trumps physicians' conscience; number three, conscientious objections to abortion amount to subjective feelings on the part of the physician; and, number four, pro-life physicians should relocate next to abortionists to facilitate referrals.

As long as ACOG ethics statement number 385 holds and the wording of ABOG's maintenance of certification, which requires compliance at the price of board certification, pro-life ob/gyn's are at risk of bogus accusations of “unethical professional behavior,” and they risk their board certification suspension for years while under “investigation.”

AAPLOG appeals to the President's Council for Bioethics to investigate this abuse of power in the name of medical ethics. We have detailed our concerns and have electronically submitted them to you as well as submitted some of what I submitted electronically in writing. It should be attached.

Thank you on behalf of pro-life obstetricians and gynecologists.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Kimberly Goulart of Compassion & Choices.

MS. GOULART: Thank you, and I apologize ahead of time. I'm getting over a cold.

Thank you, Chairman Pellegrino and Council members. My name is Kimberly Goulart, and I have the honor of working with Compassion & Choices and its more than 35,000 members to improve end of life care options for Americans.  Compassion & Choices is the oldest and largest organization in the country focused on ensuring that Americans have access to the full array of end of life care options, including palliative care, improved pain care, hospice care, and legal aid-in-dying. Compassion & Choices has more than 25 years of experience in advocacy and service. Much of the work we do is accomplished through grassroots efforts of our members and volunteers, who generously give their time and support to strengthen communities through direct service to terminally ill patients and their families.  Compassion & Choices also works with policy makers on the local, state, and federal levels to ensure that the law facilitates an environment where patients are fully informed of all their options and are empowered to make their own decisions about their end of life care in consultation with family and medical providers.

Since its inception, Compassion & Choices has focused its resources on arming patients and their families with the tools to effectively and openly discuss the medical options available to them at the end of life.  As we encountered an increasing number of patients around the country, we have learned that dying patients needlessly suffer due to a lack of essential information. As a result, many spend their last days in agony. Too many patients make one of the most important decisions of their lives – how they will live their final days – without being fully informed of their legal rights and, in some cases, all of their medical options.  Doctors have a responsibility to put the information and power to choose in the patients' hands.

Refusal clauses, sometimes referred to as conscience clauses, can undermine the very basic principle of being fully informed of and having access to all of their medical options.  These clauses allow physicians and other medical professionals to refuse to perform a procedure for moral or religious reasons. Depending on how they are written, these policies can allow medical professionals to refuse to provide a referral to another medical professional that will provide a particular service or even to inform the patient of the option of that procedure.  While these refusal clauses frequently specifically address the religious and moral objections to sterilization procedures and abortion, they are often broadly drafted to extend to any procedure which may be controversial or viewed as morally objectionable.  In the area of end of life care, institutions and individuals opposed to withdrawing feeding tubes, aggressive pain care management, providing support to a patient choosing to voluntarily stop eating and drinking, or to the practice of  palliative sedation  could claim these are objectionable and are thus within the scope of refusal laws.

This is particularly worrisome for patients at the end of life who are often unaware of their options, hesitant to initiate conversations with their providers about certain options, and often unable to remove themselves from their current health care setting in order to seek treatment elsewhere. When dying patients are suffering in the final stages of terminal illnesses, they should be able to receive counseling on a full range of options. This thereby empowers them to make fully informed medical care decisions, including the legal and medically accepted options of refusing life-prolonging interventions, opiate pain management, palliative sedation, and voluntarily stopping eating and drinking.

It is well documented that pain is frequently undertreated despite requests by patients and families.  Some health care professionals, including those at the bedside, have personal and religious beliefs opposing pain relief, even in circumstances in which professional norms require it to be offered. These laws can remove any obligation on behalf of any employee of a health care entity to inform patients of all of their treatment options or to refer a patient to another provider. This very notion of denying patients access to any such information runs afoul to the fundamental healthcare principles of autonomy and informed consent.

Many patients trust their provider to give them the full range of information on all of their end of life options. Refusal clauses that empower providers to deny patients appropriate counseling and referrals leave many patients unaware that their options are even available or that they have a right to seek treatment elsewhere.  At a minimum, we would ask that in order to maintain at least some level of autonomy, patients should have the notice that a facility or provider might refuse to offer information or referrals regarding certain types of treatment based on the provider's personal moral and religious views.

The right of medical professionals to exercise their moral and religious beliefs should not be accommodated at the expense of the right of the patient to have access to a the full array of medical care, and in particular the right of dying patients to be given the information and access to services they deserve to be able at the end of life with as much self determination, peace, and dignity as possible. We at Compassion & Choices will continue to fight to ensure that all Americans have access to the full range of end of life care options, and we will continue to advocate against policies that limit patient access to information or services as they approach the end of life.

I thank you for this opportunity to address the panel.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Sondra Goldschein of the American Civil Liberties Union.

MS. GOLDSCHEIN: Nobody ever pronounces my name correctly, but you did. Thank you very much.

Good morning. My name is Sondra Goldschein, and I am the Director of State Advocacy for the American Civil Liberties Union's Reproductive Freedom Project. As you know, the ACLU is a nationwide nonpartisan, nonprofit organization of more than 500,000 members dedicated to protecting the principles of freedom and equality that are set forth in the Constitution and the various civil rights laws. I thank you for the opportunity to talk with you today about the issues raised when religious belief affects decision making about reproductive health care.

Now, the ACLU has grappled with this question for many years, and it is particularly important to us because of our long-standing commitment to both religious liberty and reproductive freedom. And to give you just a taste of our work in both areas, the ACLU was a founding member of the coalition that supported the Religious Freedom Restoration Act, which is a law to preserve or restore the highest level of Constitutional protection for religious exercise.

Across the country we have a full docket of cases where we represent persons challenging burdens on the exercise of their religious beliefs. For example, we have sued to protect the right of Jewish students to wear a Star of David pendant to school. We have sued to defend the right of conservative Christian activities to broadcast on public access television. We have sued to protect the right of a Christian inmate to preach in his correctional facility.

And we have been equally vigilant in our advocacy of reproductive freedom. The ACLU fought long and hard to persuade Congress to pass the Freedom of Access to Clinic Entrances Act, the FACE Act, to protect reproductive health clinics, patients, and professionals from deadly violence. We have participated in nearly every critical Supreme Court case protecting reproductive freedom, from Roe versus Wade to Planned Parenthood versus Casey to Gonzales versus Carhart.

And when we began to hear stories of religiously based refusals to provide reproductive health care, we quickly realized that we needed to develop a framework for analysis that would protect both of those core values to the greatest extent possible. And I will briefly describe our framework and then offer some concrete examples so you can see our framework in action.

So our framework centers around two key questions. First we ask whether the refusal places burdens on people who do not share the beliefs that motivate the refusal. And second we ask whether the objector is a sectarian institution engaged in religious practices or whether it's an entity, whether religiously affiliated or not, that provides services to the general public. The more that services are made available to the general public and the less the services relate to an institution's religious mission, the less acceptable an institution's claimed right to refuse.

What does this mean in application? Let's start with an individual health care provider's refusal. We think that an individual health care providers' refusal to provide a health service should be protected, but in order to lessen the burden on the patient, that individual health care provider should be required to give complete and accurate information, to give appropriate referrals, to effectuate informed health care decisions, and to provide care in an emergency. That is a true balance for us between reproductive freedom and religious liberty. And the same can be said of institutions whose primary purpose is to practice and teach religion, like temples, churches, and mosques. Those institutions should not have to provide health care coverage or health care that violates their religious beliefs. But when institutions, such as hospitals, health care plans, pharmacies or other corporate entities serve and employee diverse populations, their refusal can impact a wide number of people who do not necessarily share their beliefs. So when those institutions move into the public world, they have to play by public rules.

So some real examples. We believe that a doctor, nurse, or pharmacist who cannot in good conscience participate in abortions or contraceptive services should be allowed to refuse so long as a patient is ensured safe and timely alternative access to treatment, but a hospital shouldn't be able to refuse to provide emergency contraception to a rape survivor. A hospital employs people of diverse faiths, and it serves people of diverse faiths.

A church, though – an opposite – should not have to purchase contraceptive coverage for its employees, but an administrative assistant that's working at a Catholic university or a Catholic hospital shouldn't have to pay for her contraceptives out of pocket. So the factors that we identified, those two questions, will lead to these kinds of fair results.

And so I just want to briefly say that based on this framework, we've looked at the proposed HHS regs, and we do not think that those regs provide an adequate balance of reproductive freedom and religious liberty. The proposal suggests that religious refusals should trump patients' basic health care needs, and we do not think that's an appropriate balance of religious freedom and reproductive rights.

So thank you for your time today, and we recommend that the Council advocate for solutions that appropriately balance patient access to health care with religious liberty, and we have a report that I have back there if anyone is interested in learning about this framework in more detail. Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Jonathan Imbody of the Christian Medical Association.

MR. IMBODY: Thank you, Dr. Pellegrino, and thank you, members, for staying around to hear from the grass roots. I appreciate that and postponing your lunch to do so.

The argument has been advanced that protecting the civil rights of health care professions will somehow decrease patient access to health care. In fact, the opposite is true, and an email recently received from a medical student helps illustrate why. Medical student Trevor K. Kitchens writes: “I am a first-year medical student in the beginning stages of deciding which specialty I would like to pursue. I am currently very interested in OB/GYN, but I am afraid of the relationship between this field and abortion.” Then he adds, “By the way, I am a hundred percent against abortion, and there is no way I would perform one. Moreover, there is no way I would tell a patient that abortion is an option under any circumstance, because I do not believe it is an option.”

And then he continues, “My concern is that I will start a residence and would subsequently be required at some point to give a patient the option of abortion, which I would refuse.” And Trevor says, “My fear is that taking this stand would cost me my residence position.” Now, if that is what it comes down to, he says, “I will be glad to take the stand for Jesus Christ and give up my position. However, I would really like to be able to avoid this situation and complete my residence so that I could go on and serve the Lord in that field.”

Now, Trevor is a medical student whose life-honoring values are consistent with the long-standing medical tradition of Hippocrates. Yet he senses that his life-honoring views will ironically disqualify him from a profession in obstetrics and gynecology because of the climate of discrimination, heavy-handed politics, and coercion in that field.

Well, Trevor 's fears seem well-founded. We've heard about the ACOG and the ABOG statements, which would essentially make obstetricians choose between following long-standing medical ethics codes or losing their board certification and essentially their careers.

Two out of five of the members of the Christian Medical Association report being pressured to compromise their adherence to ethical standards. Residents report losing clinical privileges for refusing to perform abortions. Physicians report losing their positions for refusal to participate in life-ending prescriptions and procedures.

Well, as life-honoring medical students, residents, physicians and other healthcare professionals are systematically forced out of the field of obstetrics and gynecology, their loss ultimately impacts patients. Their loss will impact life-affirming pregnant women who specifically seek physicians, as my wife did, who share their views and do not participate in abortions. Their loss will especially impact poor patients, since faith­-based and other conscientious physicians and institutions are among the most likely to be caring for the underserved. And their loss will impact the medical community, which is enriched by the reminder that time-tested objective standards of medical ethics protect patients and constrain the physician to first do no harm.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our final speaker is Dr. Karl Benzio of the Christian Medical and Dental Association Lighthouse Network.

DR. BENZIO: Thank you very much, Chairman and Council. I am honored and humbled to be able to serve here today.

Right of conscience versus right of convenience. We are here because certain groups want to perform procedures or enact processes that are unconscionable, unethical, and convenient. They need to remove conscience in others, which they can't, or legislate against conscience to advance their agenda. There is so much evidence against this abolition of conscience from medical practice, I am going to present a few of those arguments.

Starting with the Hippocratic Oath, certainly in 400 B.C., there was erosion of health care, the doctor-patient relationship, and the action of physicians. Hippocrates made a moral pledge to his gods and to society to do no harm by not being complicit in abortions, killings by physicians, or breaking confidentiality.

Second point is, if you strip conscience rights, it's a mixed message to physicians. Society, professional organizations, and law makers want physicians to have a conscience, values, morals as evidenced by Stark laws that legislate against kickbacks, self-referrals, and other financial incentives that would potentially interfere with patient care. There's legislation that polices pharmaceutical and medical device company incentives for product use. There's rules against sexual conduct with patients. There's whistle blower protection laws against people that express their conscience.

Probably the most egregious event was Auschwitz where, because of unconscionable and unethical methods, we had a very hard time accepting all this unbelievable science that we garnered due to the horrible ways that we were able to come upon that evidence. Now, telling me that I can't practice because of my conscience sort of goes in the face of these other examples and messages.

We certainly want doctors that have a conscience and use their ethics, morals, and principles. If we were in a car accident an unconscious, we would certainly want a physician to be taking care of us that would have morals, values, and a code of conduct to be able to treat us. We wouldn't want financial incentives, insurance interests, medical device companies, research results, fame, political gain, or other people's finances or needs to interfere with a decision-making process that would be ethical and appropriate.

As a teenager in Northern Jersey as an Italian with friends involved in organized crime, I was approached to go to medical school for free, residency for free, undergrad for free, and have a very nice practice. In response, I would be able to give certain care to their constituency as well as cover up mistakes. Interestingly, they approached me because of my trustability, then asked me to practice unconscionably as a result.

When physicians do lethal things, it erodes the trust that doctors and patients have in each other. It interferes with the openness of communication that patients can have. It also opens the door wide open of the slippery slope that lead to other, more egregious behaviors in that, as Dr. Pope presented, that bubble of intractable cases grows and grows and grows larger.

To get an idea of what happens when you remove ethics and conscience from a profession or system, we just need to look at the terrible state of affairs of or legal system, where the goal is pursuit of truth and honest discourse, but there's laws and different elements that preclude against the evidence and the truth being presented clearly and openly. As a result, people don't trust lawyers, the legal system. There's ridicule of the system and attempts to circumvent the system. I would not want to see that happen to our medical system, which unfortunately is heading in that direction and/or some of those elements at this point.

The government is also another system where conscience is sometimes missing or at least perceived to be missing, and we see the contempt and the apathy by our society with regard to the government situations.

As far as my personal practice, I am a psychiatrist. As a parent we know that giving things isn't always the compassionate and loving thing. To give the 12-year-old the keys to the car certainly is not the loving, compassionate thing. As far as abortion, doing the compassionate, loving thing isn't always complying with the request for an abortion. I have treated women that have had abortions. I've treated fathers of aborted children and dealt with their sequelae of post-traumatic stress disorder and depression and suicidality.

Giving emergency contraception is another one of those convenient things that isn't necessarily the loving and compassionate act. I've treated rape victims that have had abortions and the negative outcomes from that. I've treated rape victims that have carried their child and have wonderful experiences with loving that child, the child loving them, and the trend is growth that happens relationally, psychologically, and spiritually by trying to figure out, well, why did this happen, then, if I had this positive outcome?

We talked about patient-centered medicine, but as a psychiatrist I unfortunately impose my conscience on patients at times because I stop them from committing suicide. That's their wish, and I either commit them or hospitalize them against their will to stop them from imposing what they would like to do. We're also called by law to – the Tarasoff law to stop people from killing others, and the duty to inform is again imposing my conscience on theirs.

Certainly legal commitments to hospitals and psychiatric settings again is me imposing my conscience. Finding people incompetent to then undergo procedures that are presumed in their best interest is another area where we impose our conscience values over the requests or the process of the patient.

People want to go to physicians with similar beliefs. Especially as a psychiatrist we're involved significantly in their decision-making process, in the values that move their life forward. So I had a patient referred to me who wanted to have an abortion or was on antidepressant, got pregnant, and her psychiatrist told her that she needed to have an abortion. And she was able to find me out through her church, and we were able to see the pregnancy through, a very healthy, very wonderful result.

Another patient was referred to me and was being called psychotic by their psychiatrist and was on medications that they didn't need to be on because the psychiatrist didn't understand their ability to communicate because of their faith, which some of this phenomena was.

Many patients haven't pursued addiction or mental health treatment because of the fear that the care they get or the counsel they get will be contrary to their beliefs regarding sanctity of life, marriage, and that man is made in three spheres, and all three spheres of spirit, mind, and body need to be addressed.

There is also much from a scientific standpoint that I won't be able to go into now because of time, but there is much information and evidence about SPECT scans. The evidence of SPECT shows us about the need for morals and values in decision-making and effective decision-making on brain chemistry and healthy brain chemistry production.

In summary, the conscience rights are the last wish for those who can't speak for themselves, such as unborn babies, the mentally retarded, terminally ill, disabled, incompetent, elderly, the unconscious, mentally ill, slaves, illegal immigrants, or those ignorant of the complicated system.

Society and our U. S. Constitution originally taught us to protect that voice, and physicians are often the last audible voice. Taking away conscience rights silence that voice. Please don't, because some day that voice could be the last advocate and morals between you, your spouse, your parents, your kids, and inhumane, unconscionable, and unethical actions or policies.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Thank you very much, Dr. Pope. Thank you to the members of the Council. And we will adjourn our meeting. Have a good trip home.

  - The President's Council on Bioethics -  
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