Patient choice resources
Although they are talking about performing a c/section against the mother’s will here, this statement seems to imply, to me in a parallel fashion, that doctors should not interfere with a womans choice of home birth. This statement would contradict ACOGs position regarding home birth especially if the argument becomes the safety of the fetus.
Number 390 • December 2007 [PDF format]
Ethical Decision Making in Obstetrics and Gynecology*
Informed Consent Process
Often, informed consent is confused with the consent form. In fact, informed consent is "the willing acceptance of a medical intervention by a patient after adequate disclosure by the physician of the nature of the intervention with its risks and benefits and of the alternatives with their risks and benefits" (27). The consent form only documents the process and the patient decision. The primary purpose of the consent process is to protect patient autonomy. By encouraging an ongoing and open communication of relevant information (adequate disclosure), the physician enables the patient to exercise personal choice. This sort of communication is central to a satisfactory physician–patient relationship. Unfortunately, discussions for the purpose of educating and informing patients about their health care options are never completely free of the informant’s bias. Practitioners should seek to uncover their own biases and endeavor to maintain objectivity in the face of those biases, while disclosing to the patient any personal biases that could influence the practitioner’s recommendations (28, 29). A patient’s right to make her own decisions about medical issues extends to the right to refuse recommended medical treatment. The freedom to accept or refuse recommended medical treatment has legal as well as ethical foundations.
As previously noted, one of the most important elements of informed consent is the patient’s capacity to understand the nature of her condition and the benefits and risks of the treatment that is recommended as well as those of the alternative treatments (30). A patient’s capacity to understand depends on her maturity, state of consciousness, mental acuity, education, cultural background, native language, the opportunity and willingness to ask questions, and the way in which the information is presented. Diminished capacity to understand is not necessarily the same as legal incompetence. Psychiatric consultation may be helpful in establishing a patient’s capacity, or ability to comprehend relevant information. Critical to the process of informing the patient is the physician’s integrity in choosing the information that is given to the patient and respectfulness in presenting it in a comprehensible way. The point is not merely to disclose information but to ensure patient comprehension of relevant information. Voluntariness—the patient’s freedom to choose among alternatives—is also an important element of informed consent, which should be free from coercion, pressure, or undue influence (31).
ACOG
Number 306, December 2004
(Replaces No. 237, June 2000)Committee
Opinion
This document provides risk
management information that is
current as of the date issued and
is subject to change. This document
does not define a standard
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Copyright © December 2004
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Informed refusal. ACOG Committee
Opinion No. 306. American College
of Obstetricians and Gynecologists.
Obstet Gynecol 2004;104:1465–6.
Informed Refusal
ABSTRACT: Informed refusal is a fundamental component of the informed
consent process. Informed consent laws have evolved to the “materiality or
patient viewpoint”standard. A physician must disclose to the patient the risks,
benefits, and alternatives that a reasonable person in the patient’s position
would want to know to make an informed decision. Throughout this process,
the patient’s autonomy, level of health literacy, and cultural background
should be respected. The subsequent election by the patient to forgo an intervention
that has been recommended by the physician constitutes informed
refusal. Documentation of the informed refusal process is essential. It should
include a notation that the need for the intervention, as well as risks, benefits,
and alternatives to the intervention, and possible consequences of refusal,
have been explained. The patient’s reason for refusal also should be documented.
Informed refusal is inextricably intertwined with the process of informed
consent. After addressing the risks, benefits, and alternatives of a proposed
medical treatment, surgical procedure, or diagnostic test, an explanation of
the risks of refusing or declining the proposed intervention also must be
given; this should be considered a fourth element of the consent process. Just
as a patient has the right to consent to treatment, she may choose to refuse
treatment. Patients are entitled to participate with their physicians in a process
of shared decision making (1).
Informed consent laws have evolved from the relatively paternalistic
“professional or reasonable physician” standard to the “materiality or patient
viewpoint” standard. In the professional or reasonable physician standard, a
physician must disclose to a patient the risks and benefits that are customarily
disclosed by the medical community for that medical treatment, surgical
procedure, or diagnostic test. In the materiality or patient viewpoint standard,
a physician must disclose to the patient the risks, benefits, and alternatives
that a reasonable person in the patient’s position would want to know to make
an informed decision. In making such disclosure, a physician also must make
allowance for the patient’s level of health literacy and cultural background. It
often is helpful, for example, to ask the patient to explain in her own words
her understanding of the essential elements of this patient–physician
exchange of information. As is frequently emphasized, informed consent is a
process and not a mere document.
VOL. 104, NO. 6, DECEMBER 2004
ACOG Committee Opinion No. 306 Informed Refusal 1465Once a patient has been informed of the material
risks, benefits, and alternatives, as well as the
option to refuse, the patient has the right to exercise
complete autonomy in deciding whether to undergo
the recommended medical treatment, surgical procedure,
or diagnostic test; to choose among a variety of
treatments, procedures, or tests; or to refuse to undergo
these treatments, procedures, or tests. The election
by the patient to forgo an intervention that has
been recommended by the physician constitutes
informed refusal.
In the past, documentation of informed refusal
has not been an important element; however, it has
become important in the present health care environment.
Managed care and increased patient autonomy
are 2 factors that warrant a reexamination of the need
for documentation of informed refusal. The widespread
implementation of managed care and utilization
review sometimes has created a conflict between
cost containment, sometimes camouflaged as “medical
necessity,” and best medical practices or even
standard medical practices. It is not uncommon for a
physician to recommend a medical treatment, surgical
procedure, or diagnostic test that will not be paid
for by a third-party insurance carrier. Legal precedents
have established that an attending physician
should act as a patient advocate in such coverage disputes
and attempt to convince the managed care
organization that coverage is medically indicated.
Despite such advocacy, however, there will be situations
in which physicians will not prevail on behalf
of their patients. In such circumstances, a physician
should discuss with the patient whether she wishes to
accept personal financial responsibility for the medical
treatment, surgical procedure, or diagnostic test,
or whether to seek alternative funding. If the patient
refuses to undergo the medical treatment, surgical
procedure, or diagnostic test for economic or other
reasons, the physician should document the informed
refusal in the patient’s medical record. In some situations
the physician might want to obtain a written
statement from the patient, acknowledging that the
risk of refusal was fully explained.
The increased emphasis on patient autonomy in
medical decision making has given rise to other circumstances
in which documentation of an informed
refusal is appropriate. Despite a physician’s medical
advice or recommendation, a patient who is informed
of the material risks, benefits, and alternatives of particular
interventions may elect to forgo them because
of cultural or religious beliefs, personal preference, or
comfort. This decision should be respected. (Patient
choice in the maternal–fetal relationship may require SEE ABOVE
special considerations. Guidance for these issues can
be found in another ACOG publication [2].) Alternatively,
the patient may weigh the risks and benefits
differently than the physician or, simply, the patient
may not understand the risk of refusal.
Whenever a patient refuses a medical treatment,
surgical procedure, or diagnostic test, the physician
should document the informed refusal in the
patient’s medical record and include the following
information:
• The patient’s refusal to consent to a medical
treatment, surgical procedure, or diagnostic test
• Documentation that the need for the treatment,
procedure, or test has been explained
• The reasons stated by the patient for such refusal
• A statement that the consequences of the
refusal, including possible jeopardy to health or
life, have been described to the patient
References
1. American College of Obstetricians and Gynecologists.
Informed consent. In: Ethics in obstetrics and gynecology.
2nd ed. Washington, DC: ACOG; 2004. p. 9–17.
2. American College of Obstetricians and Gynecologists.
Patient choice in the maternal–fetal relationship. In:
Ethics in obstetrics and gynecology. 2nd ed. Washington,
DC: ACOG; 2004. p. 34–6.
1466
Editorial
Should Refusal to Undergo a Cesarean Delivery Be a Criminal Offense?
Richard L. Berkowitz, MD
Figure. Richard L. Berkowitz, MD
Those providing medical care for pregnant women certainly know that they are responsible for both the woman herself and the 1 or more fetuses she is carrying. Regardless of when one believes that life begins, we all understand that concerns about the well-being of a "viable" human fetus are as relevant as those relating to the mother who is carrying it. Book titles, conferences, and untold numbers of peer-reviewed articles refer to the "Fetus as a Patient," and those of us who focus our attention on the provision of antenatal medical and/or surgical therapy are constantly aware of the fact the recipient of our care is a resident in the pregnant woman’s uterus. Physicians naturally strive to maximize beneficial outcomes for their patients, and often serve as advocates on their behalf—but are there limits to that advocacy?
Caring for more than 1 patient in a pregnancy can be very complicated because sometimes the best interests of the separate parties are in conflict. Ongoing compromise of 1 twin in utero at 27 weeks might dictate that rapid delivery would be life-saving, but that delivery could seriously jeopardize the other twin from the sequelae of severe prematurity. The appropriate therapy of worsening hemolysis, elevated liver enzymes, low platelets syndrome at 26 weeks is delivery for maternal indications, but that could seriously endanger a baby born at such an early gestational age. The first case is extremely difficult and involves a kind of "Sophie’s choice," but this type of decision is most frequently made by informed parents after evaluating the degree of compromise being suffered by the affected twin and the track record of the neonatal intensive care unit into which the delivered babies will be going. The second case is usually unambiguously decided in favor of the mother, regardless of the gestational age, because of the well-established principal in our society that concerns about the medical well-being of a mother outweigh those relating to her fetus. In the case of Senberg v Carhart (530 US 914 [2000]), the Supreme Court has specifically ruled that a late-term abortion cannot be prohibited when a mother’s health is at stake.
More than a quarter of American deliveries are currently performed by cesarean, for a variety of reasons. Women undergoing those procedures voluntarily agree to undergo major abdominal surgery to maximize the potential for a healthy outcome for their babies, even though in most cases there is no direct health benefit for the mother. Many other examples exist of things done by and to pregnant women for the express purpose of benefiting their fetuses. These range from reduction in daily alcohol consumption, and acceptance of bed rest for preterm contractions to major dietary alterations, multiple finger sticks, and frequent injections for the management of insulin-dependent diabetes, the performance of transabdominial intravascular transfusions for the treatment of severe fetal anemia in utero, and even submission to open surgical repair of neural tube defects. All of these things are done selflessly but voluntarily. What, however, should be done if a woman doesn’t choose to act in what her caregivers think is in the best interests of her fetus? Is she obligated to do so? Prosecutors in Utah undoubtedly feel that she is.
Melissa Rowland was charged with the murder of her stillborn twin because she failed to accede to the advice of her obstetrician to undergo a cesarean delivery. These charges were subsequently dropped when she accepted a plea of child endangerment for using drugs during pregnancy. The facts of the case are tragic. Ms. Rowland is a woman with a long history of mental illness and substance abuse. According to press reports,1–4 her first set of twins was born when she was 14 years old, 2 of her 6 children were given up for adoption, 1 was taken away by child protective services, and she had been convicted of child endangerment of 1 of the others. She had undergone 2 prior cesarean deliveries and claimed that she was terrified to have another because the doctors wanted to cut her open from "breast bone to pubic bone." She was advised to have a cesarean delivery on January 2, 2004 because of decreased amniotic fluid volume and poor fetal growth. She initially refused but finally agreed to undergo an abdominal delivery 11 days later. One twin was born alive and survived but tested positive for cocaine and alcohol. The other was judged to have died in utero approximately 2 days earlier. The Salt Lake County District Attorney’s Office filed murder charges under a state statute that defines a fetus as a person for the purposes of criminal prosecution.
In this issue of Obstetrics & Gynecology, Minkoff and Paltrow5 discuss the justification for, and implications of, this judicial action and find them to be extremely concerning. They present several legal and ethical arguments against forcing a woman to undergo a cesarean delivery, but the one I find most compelling is that relating to the case of McFall v Shimp (10 Pa DC3d 90 [1978]) adjudicated by the Allegheny County Court in 1978. In that case the first cousin of a man with life-threatening aplastic anemia was found to be the only compatible donor for a marrow transplant. He refused his cousin’s request to undergo a marrow aspiration and was subsequently brought to court to seek an injunction compelling him to submit to the procedure. While finding the potential donor’s refusal to help his cousin reprehensible, the court denied the plaintiff’s appeal. In addition to the statement quoted in the article by Minkoff and Paltrow, the opinion from that case states, "Our society, contrary to many others, has as its first principle the respect for the individual, and that society and government exist to protect the individual from being invaded and hurt by another," (McFall v Shrimp) and "For a society which respects the rights of one individual, to sink its teeth into the jugular vein or neck of one of its members and suck from it sustenance for another member, is revolting to our hard-wrought concepts of jurisprudence. Forcible extraction of living body tissue causes revulsion to the judicial mind. Such would raise the specter of the swastika and the Inquisition, reminiscent of the horrors this portends" (McFall v Shrimp).
If a 3-month-old neonate requires a renal transplant, its mother cannot be forced to provide a kidney even if she has the only compatible one to be found. Therefore, assuming that she is competent to make rational decisions, forcing a woman to undergo a major operative procedure when she is pregnant denies her the rights she will have after she has delivered. This is clearly discriminatory. If the undelivered mother is found to be incapable of making a rational decision, other mechanisms should be brought into play to decide on an appropriate course of action; Ms. Rowland’s competence was not raised as an issue in her case.
Minkoff and Paltrow5 eloquently point to the problems that can follow from the notion that pregnant women can be found criminally negligent for behavior that endangers their fetuses. Will we be jailing women for refusing to reduce their cigarette consumption during pregnancy or being unwilling to undergo a multifetal pregnancy reduction in a high-order multiple pregnancy that results in the birth of very premature infants? There is no end to the variations on that theme. Given the propensity in this country to assign blame for virtually any bad outcome, think of the multiple possible recriminations that can be assigned whenever a baby is born that is less than perfectly healthy.
Despite my strong advocacy for the fetus, I agree with the conclusions reached by Minkoff and Paltrow.5 Informed consent means that individuals being offered a medical option have the right to refuse it. We obtain informed consent before performing cesarean deliveries for precisely that reason. There is no question that pregnancy is a unique state and that obstetric patients have an ethical responsibility to optimize the outcome for their fetuses, but that does not mean that they should surrender their legal rights to have control over what is done to their bodies.
doi:10.1097/01.AOG.0000148159.89833.db
REFERENCES
1. Pollitt K. Pregnant and dangerous. The Nation. April 26, 2004. Available at: http://www.thenation.com/doc.mhtml?i=20040426&s=pollitt. Retrieved October 19. 2004.
2. Wilde ML. Rowland case illustrates maternal-fetal conflict. Available at: www.law.uh.edu/healthlawperspectives/Reproductive/040325Roland.html. Retrieved September 12, 2004.
3. Mother charged in caesarean row, March 12, 2004. BBC News, World Edition. Available at: http://news.bbc.co.uk/2/hi/americas/3504720.stm. Retrieved October 19, 2004.
4. Canham M. Prosecutors drop murder charges in C-section case. The Salt Lake Tribune. April 8, 2004.
5. Minkoff H, Paltrow LM. Melissa Rowland and the rights of pregnant women. Obstet Gynecol 2004;104:1234–6.[Abstract/Free Full Text]