ACDM Special Circumstance Informed Consent/Informed Refusal
11999

Decline of Standardized Medical or Midwifery Care

Special Circumstances Informed Consent 
/ Informed
Decline of Standardized Medical or Midwifery Care

Specific Issue _________________________
Client Family Name _____________________
Date __________ Midwife _______________


The most important reason for imposing standardized medical/midwifery procedures on pregnancy, labor, birth, the postpartum and neonatal period are to safe guard the life and health of mother and/or baby.
In ideal circumstances, proposed procedures/diagnostic tests or prophylactic treatments are individualized to the unique circumstance of each mother, each pregnancy and each unborn baby. However, our increasingly litigious society has necessitated the near universal implementation of all "standard of care" procedures and protocols for all mothers and in all circumstances in order to protect the caregiver from possible charges of malpractice. At times this creates a conflict of needs between the client family being served and the caregiver. This may be misunderstood by either or both parties and can, unfortunately, cause an underlying mistrust. 

Aside from the issue of caregiver fears about malpractice litigation, the central fact is that each and every "essential" standard of care procedure -- either through omission by the caregiver or refusal by the client -- can lead to very serious complications of pregnancy or birth and in extreme cases, can result in the death or permanent disability of mother or baby. Common examples are the refusal under the religious exemptions clause to have "routine" blood work antepartum (Christian Scientists and some other religious faiths) or refusal of Rh immune globulin postpartum by Rh negative mothers due to fear of potentially fatal diseases contracted from contaminated blood products -- each of these "small", well meaning, intensely pondered decisions can result in fatal complications either in the current pregnancy or a future one

It is also true that many of the routine risk-reduction procedures, protocols and prophylactic treatments that currently reflect standardized care, while perhaps benign in and of themselves, can be flawed or give erroneous information. This may result in false assurances in the presence of undetected problems or lead to additional testing (often expensive, invasive and risky procedures) or unnecessary and inappropriate treatments that interject new risks, pain and in event of a complications from the procedure, can create genuine problems where none existed before. While rarer than complications of pregnancy, it is even possible to suffer death or disability from what turned out to be unnecessary medical treatment. There is nothing about over-treatment that is intrinsically superior to under-treatment. The bottom line is that medical care is not yet a perfected science and no decision or course of action as chosen by either parents or caregiver can guarantee a perfect outcome

After full disclosure of the current standard of care, its purpose, benefits, known risks, contraindications, and risks associated with its refusal, childbearing parents have the legal authority in all but the rarest of emergency circumstances to decline procedures, protocols and treatments that they find unacceptable. This "fully informed decline of consent" can be done under the religious exemptions clause for reasons based in religious beliefs or ethical values. It also can be done simply for "personal preference". The scale of the decision is usually not the issue. As stated above, any standard procedure or protocol that is missed can have deleterious consequences up to and including death or permanent disability, including complications and stillbirth of normal neonate in future pregnancies (Rh problems). Untreated complications of pregnancy or labor that result in Cesarean delivery also can effect future (post-cesarean) pregnancies (VBAC status) or the ability to bear additional children (e.g. complications of surgery that require an emergency hysterectomy). 

There is an important distinction to be made between risk-reductions strategies that address the theoretical possibility of developing a complication (possible future harm but no current problem) and those treatments designed to address and ameliorate present-tense complications. Except in an immediate life-threatening emergency ("clear and present danger" to mother or baby), parents have the right to decline those medical/midwifery activities that are "insurance" against potential risks. The question that frequently arises both for parents and the courts is one of declining treatment at the margins, since risks found acceptable for a dramatic gain may not be acceptable to an individual for smaller or uncertain increments of benefit. In general the Courts have interpreted parental rights to decline prophylactic procedures and protocols much more broadly than refusing treatments for complications that have already arisen. However, recent court decisions and AGOC guidelines [1] basically affirm the autonomy of the parents in declining medical advise &/or refusing treatment even in the presence of a complication. Legal theory acknowledges your right to decline non-emergency treatments as well as routine screening procedures (including fetal surveillance during labor, prophylactic hospitalization, etc) even though doing so is perceived by medical standards to increase the level of risk (ie. exposure to potential harm).

 Full Disclosure in Regard to the Unique Political Hazards 
Associated with the Choice of Domiciliary Birth Services

In light of the ethical duties of full disclosure and the legal burden placed on caregivers by case law (Truman v. Thomas,
etc), it is also a necessary facet of "Informed Consent/Informed Refusal" of standardized care to inform parents of certain
political realities associated with their choice of domiciliary care. Home-based birth services, especially as provided by
midwives, brings forth more than its fair share of personal prejudice and institutionalized bias. The general public, the
media, the police, the legal and medical professions and at times family members are all mis-informed about and
frightened of out-of-hospital birth. The American College of Obstetricians and Gynecologists’ official position is that birth
is so potentially dangerous that it is unprofessional for one of their fellows to offer birth services outside of a fully
equipped hospital. In the past ACOG endorsed the statement that "home birth is the earliest form or child abuse". 

Obstetricians and perinatalogists do not have any sense of humor about this topic -- many remain convinced that
"midwives kill babies" by agreeing to provide domiciliary care and especially by their failure to enforce the hospital-based
obstetrical standard in event of a risk factor or potential complication. According to the Center for Disease Control 80,000 to
120,000 people die annually in the US from iatragenic & nosocomial causes (doctor or hospital-induced complications of
medical treatments such as medication errors, drug reactions, hemorrhage after surgery, infections acquired while
hospitalized or following blood transfusions, etc). None the less, the mainstream medical profession remains convinced that the only real danger lies in failing to follow a physician’s advise.
Doctors can and sometimes do retaliate against parents who have planned a home birth and for whom a complication has necessitated medical or hospital care. 

In addition to whatever personal or religious reasons compel you to consider declining prophylactic medical care, medical evaluation or standard medcal protocols, you should know that there is a small but none-the-less real possibility your decision will come to the attention of medical or legal authorities and if associated with a "bad outcome", (e.g., baby in the NICU, etc) you could be charged with felony child endangerment in regard to making a medically unpopular decision. This not only involves criminal prosecution but also state authorities may take the new baby and any other children out of your custody during the period of investigation. Further more, caregivers can be charged with involuntary manslaughter or even second-degree murder should there be a death that a doctor claims would/should have been prevented if the midwife had forced you to follow the obstetrical standard of care. This reflects the fallacious idea that it is the midwife’s professional duty to make you comply with standard medical advise and her failure to force your compliance constitutes professional negligence. Actually it is neither the proper role or legal duty of a midwife or any other healthcare provider to coerce you into compliance with unwanted medical routines or prophylactic medical care. This observation is aside from "rare and exceptional circumstances" constituting care and present danger to you or your unborn or newborn baby [1]

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In the face of all the pertinent facts and appropriate information about the specific procedure/ protocol/ treatment in question, you have the basic legal right to decline or defer it pending further consideration at a later time. You are strong advised that such a decision to decline standardized medical/midwifery care should only be entertained
if you are convinced that acceptance of the proposed procedure would violate a core value or strongly-held religious belief or that it entails risks of iatrogenic complications that outweigh the proposed benefit. You should only make such a decision if you are willing to fight for and to suffer the consequences -- biologically, emotionally and the potential threat to your civil liberties and parental rights. 

I / We, __________________ have read, pondered and understand the above information and duly decline or defer the
above named medical or midwifery standard of care procedure, protocol, or prophylactic treatment as identified and defined by the California community of licensed physicians or professional midwives.


Mother ________________________________________________ date ____________

Father ________________________________________________ date ____________

Midwife or other witness __________________________________ date ____________ 

References: 1.Second edition of Gabbe’s Obstetrics: Normal and Problem Pregnancies, Section 8 - "Legal and Ethical issues in Perinatalogy"; page 1336 - Forced Cesarean Sections - "There is nothing in Roe v. Wade {15} or any other appellate decision that give either physicians or judges the right to favor the life or well-being of the fetus over that of the pregnant woman. Nor is there legal precedent for a mother to be ordered to undergo surgery (e.g., kidney or partial liver transplant) to save the life of her dying child. ... Forcing pregnant women to follow medical advice also places unwarranted faith in that advice. Physician often disagree about the appropriateness of obstetrical interventions and they can be mistaken. {16} In three of the first five cases in which court-ordered cesarean sections were sought, the women ultimately delivered vaginally and uneventfully. {2} In the face of such uncertainty -- uncertainty compounded by decades of changing and conflicting expert opinion on the management of pregnancy and childbirth -- the moral and legal primacy of the competent, informed pregnant woman in decision making is overwhelming*. {17} page 1337 Obstetricians should refrain from performing procedures that are unwanted by the pregnant woman. .... In 1990, the District of Columbia Court of Appeals,in a strongly worded-opinion, essentially adopted the ACOG statement as law, holding that the decision of the pregnant women must be honored in all but "extremely rare and truly exceptional circumstances". {19} *emphasis added