Friday, April 14, 2017

Johanna Rhys-Davies: Human rights in childbirth

Johanna Rhys-Davies
Human Rights in Childbirth
North of England Breech Conference, Sheffield
Day 1

Reviewed by Johanna Rhys-Davies, April 8, 2017

Johanna Rhys-Davies is a barrister, mother, and La Leche League leader in the UK. She began by describing how she came to work in human rights and childbirth. She has worked as a barrister for 10 years in domestic violence, family law, and human rights cases. She had her first child in 2009, and the birth had a profound effect on her. She realized there were some really big problems with maternity care in her community of Yorkshire. She co-founded Airedale Mums and helped support a local birth center. She recently changed career paths to work with Birthrights.

How did Birthrights begin? In 2013, Barrister Elizabeth Prochaska decided that childbirth was missing from the discourse in law and human rights in the UK, so she established the nonprofit organization Birthrights to bring childbirth into the conversation. Johanna gave an overview of Birthrights’ mission and current projects. She is very excited about the RCM e-learning module about human rights in childbirth that she is writing .

Today’s presentation reviewed how a human rights framework operates in a maternity care setting. Joanna’s main argument was that human rights and human rights law provide a framework for quality maternity services that respect women’s autonomy. Providers can use a human rights framework in their own practice.

Why care about human rights in the UK if giving birth is statistically quite safe?
There’s been an awakening in the last 6-7 years that human rights in childbirth isn’t just about access to care, but also about the type and quality of care. Johanna quoted Mande Limbu of the White Ribbon Alliance: “Disrespectful and abusive care happens even when women have free access to healthcare.” Human rights in childbirth comes into play particularly around questions of morbidity and trauma--those wider decisions beyond stillbirth and NN/PNMR.

Johanna argued that human rights are already part of maternity care and law. Human rights are a foundation for respectful, woman-centered care and protect women's rights to make decisions for themselves.

Adherence to or breach of fundamental human rights has lasting effects on individuals’ well-being. Women’s experiences of childbirth persist vividly throughout their lives and affect their relationships and sense of self. Joanna and her colleagues at Birthrights think that human rights offers a framework for care that benefits both care providers and childbearing women.

Next, Johanna noted 4 parts of the legal framework for maternity care in the UK:
1. The Nursing & Midwifery Council Code
2. Criminal law
3. Clinical negligence
4. Human Rights Act (1998) & Equality Act (2010)

Providers are most afraid of #3—clinical negligence--but is that fear proportionate? There are approximately 1,900 births/day in the UK. In 2012, a 10-year review of maternity claims found that less than 0.1% of all UK births were subject to claims. Of that 0.1%, 39% of claims were discontinued. We have a system of big payouts for a small number of cases, and that skews our perception about negligence claims.

Human rights law provides a powerful corrective to the dominance of negligence law in the UK. The really exciting thing about HR law is that it’s not just a counterweight to fears of clinical negligence, but it also has preemptive value. A maternity system where human rights are respected provides for mutual trust, mutual understanding, and mutual respect. A human rights framework can guard against harm and guard against claims.

Human Rights Act of 1998
Next, Johanna introduced the Human Rights Act of 1998 (HRA). This act implemented the rights in the European Convention on Human Rights (ECHR) into UK law and is NOT affected by Brexit. The HRA guarantees these minimum standards in 2 key ways:
1. All public bodies and their staff, including hospitals and health professionals, are legally obligated to respect human rights as set out in the Convention and the Act (Section 6 HRA)
2. All legislation, including health and social care law, should be compatible with human rights or “human rights compliant” (section 3 HRA).

Individuals can’t sue other individuals for human rights violations; they can only sue public bodies and their employees.

Some rights are absolute or non-derogable. Others are derogable; they can be interfered with or restricted, but the interference must be lawful, necessary, and proportionate. Joanna guided us through each of the 5 relevant articles from the ECHR: 2, 3, 8, 9, and 14.

Article 2: The right to life (non-derogable)
Article 2 reads: “Everyone’s life shall be protected by law. No one shall be deprived of his life intentionally (save in the execution of a sentence of a court…)” Good maternity care should take reasonable steps to protect a woman’s right to life. Of course, this does not mean providing treatment if someone does not consent, even if that treatment is potentially life-saving. But sometimes access to maternity care is also affected. Perhaps someone was denied access to maternity services because they were an overseas visitor who didn’t have money to pay for their care. Article 2 also has to do with facilitating informed choices. Some women might go elsewhere because their birth choices aren’t well supported in their care system, and they are fearful of the care they might receive.

Article 3: The right not be subjected to torture or inhuman or degrading treatment (non-derogable)
This human right covers serious harm, abuse, or neglect. Johanna gave a few theoretical situations that might apply to maternity care under Article 3: failing to obtain consent for medical procedures or not assessing and responding to the need for pain relief during and after childbirth. So far there are no legal cases in the UK specific to maternity care and Article 3. Following the Francis report into Mid Staffordshire Trust, 100 cases brought under article 3 were successful.

Article 8: The right to a private life (derogable if necessary and appropriate)
Article 8 reads “Everyone has the right to respect for his or her private and family life, home and correspondence.” This includes the right to physical and moral integrity and bodily autonomy.

The most significant legal case involving Article 8 is the 2010 Ternovszky v Hungary. In 2010, the European Court of Human Rights (ECrtHR) ruled that the choice of where to give birth is part of one’s private life under Article 8 ECHR. The court ruled in favor of Mrs. Ternovszky that she had the right to choose the circumstances of her birth. The court was very clear that women’s decisions about childbirth were expressions of their physical autonomy:
The court considers that, where choices related to the exercise of a right to respect for private life occur in a legally regulated area, the State should provide adequate legal protection to the right in the regulatory scheme….In the context of home birth, regarded as a matter of personal choice of the mother, this implies that the mother is entitled to a legal and institutional environment that enables her choice, except where other rights render necessary the restriction thereof.
Johanna presented four other relevant Article 8 cases:

Konovalova v Russia, October 2014, ECtHR
This reaffirmed Article 8 rights and reject the concept of blanket consent. In Russia, women were routinely presented with blanket consent forms and weren’t able to consent or refuse individual items. The court reaffirmed that blanket consent was unlawful and that individual procedures need to be properly consented to at the time that they happen.

Dubská and Krejzová v Czech Republic, Dec 2016, ECrtHR
Johanna noted that this case was a concerning change of direction in human rights law. Dubská wanted regulation for midwives in the Czech Republic. Dubská lost and the Czech Republic wasn’t obligated to regulate midwives. 5 judges dissented in this decision. Johanna noted that this case does not affect the right to give birth at home.

Re DM, 2014, EWHC (Fam)
This case ruled that mothers facing removal of their children at birth must be consulted and involved in the process to protect her Article 8 rights, except in exceptional circumstances.

Montgomery v Lanarkshire, March 2015, Supreme Court UK
This is a groundbreaking case that Johanna referenced several times in her presentation. Montgomery brings Article 8 rights home to the UK. The case actually began as a negligence case, not about human rights per se, involving a diabetic mother whose baby was severely injured after a shoulder dystocia. (A useful summary of the case & judgment can be found here. If you wish to read the full judgment, click here.)

The judges were very clear that there have been developments in human rights law; they looked at negligence within the framework of human rights and they used the language of Art 8 in their decision. Johanna quoted from Lady Hale’s judgement: “It is now well recognised that the interest which the law of negligence protects is a person’s interest in their own physical and psychiatric integrity, an important feature of which is their autonomy, their freedom to decide what shall and shall not be done with their body.” (para 108) Montgomery v Lanarkshire means the language of Article 8 rights is now being used within negligence law.

Are there restrictions on Art 8?
Yes, sometimes, but restrictions have to be necessary, lawful and proportionate. Johanna gave an example: a particular NHS Trust installs CCTV in every room, hallway, bathroom, etc. to keep patients safe. This might be considered disproportionate and the Trust would have to scale back on the number of CCTV cameras to a more reasonable number.

Article 9: Right to freedom of belief
No case law in maternity care exists at the moment. Johanna provided some hypothetical examples of how this might arise in maternity care: a woman declining a blood transfusion for religious reasons, a woman requesting only female care providers for religious reasons, treating women respectfully who choose abortion, particularly those who choose abortion after 26 weeks.

Art 14: The right not to be discriminated against in the application of the other articles
This is a piggyback right; it has to connect to another right in the HRA. Johanna provided an example of how this might play out: if a midwife violated Article 2 by not providing life-saving care, and the midwife did so because she had a discriminatory attitude about the woman’s age or disability, that would engage Article 14 along with Article 2.

So how does do the Human Rights Act and the various legal cases cited previously help us on the ground? Birthrights has identified 3 key legal principles underpinning human rights law: dignity, autonomy, and informed consent. Principles matter on the ground. Once you can adopt these principles into your practice, that human rights approach can transform the way you care for women.

1) Dignity
Johann is here today because of something Julia Bodle said in 2015: “Well, in other words, the mother is not just a suitcase.” Childbearing women are not just a vessel, not just a means to an end. Women’s interests are often diminished and neglected in favor of what are seen as her baby’s interests. The principle of dignity gives women the ultimate respect and should compel the provision of healthcare. As Cathy Warwick, CEO of the RCM has said, "We are human beings first; then professionals; then employees." Dignity is a legal principle that underpins Articles 2 and 3. Dignity reinstates women as the center of childbirth.

The principle of dignity acts as an antidote for, and a protection, against human rights abuses. This sentence in one of Johanna’s slides stood out: “Focusing on dignity is not simply an approach to improving experience of care, but could be an antidote to unsafe practice.”

She referenced a closing remark by Lord Kerr from the Montgomery case:
[A]n approach which results in patients being aware that the outcome of treatment is uncertain and potentially dangerous, and in their taking responsibility for the ultimate choice to undergo that treatment, may be less likely to encourage recriminations and litigation, in the event of an adverse outcome, than an approach which requires patients to rely on their doctors to determine whether a risk inherent in a particular form of treatment should be incurred….[R]espect for the dignity of patients requires no less. (para 93)
Johanna referenced an OB, Florence Wilcox of Kingston Hospital, who put herself into a lithotomy position in a delivery room and then documented her experiences. For the first time, Florence realized how undignified and vulnerable this position made women feel.

2) Autonomy
Johanna highlighted two court cases that reaffirmed the principle of autonomy:

Re MB (1997), Court of Appeal
A competent woman, who has the capacity to decide, may, for religious reasons, other reasons, for rational or irrational reasons or for no reason at all, choose not to have medical intervention, even though the consequence may be the death or serious handicap of the child she bears, or her own death.

St George’s Healthcare Trust v S (1998)
In our judgment, while pregnancy increases the personal responsibilities of a woman, it does not diminish her entitlement to decide whether or not to undergo medical treatment. Although human…an unborn child is not a separate person from its mother. Its need for medical assistance does not prevail over her rights. She is entitled not to be forced to submit to an invasion of her body against her will, whether her own life or that of her unborn child depends on it. Her right is not reduced or diminished merely because her decision to exercise it may appear morally repugnant.
Autonomous decision-making is always going to be very individualized, as Lady Hale affirmed in Montgomery v Lanarkshire:
A patient is entitled to take into account her own values, her own assessment of the comparative merits of giving birth in the “natural” and traditional way and of giving birth by caesarean section, whatever medical opinion may say, alongside the medical evaluation of the risks to herself and her baby. She may place great value on giving birth in the natural way and be prepared to take the risks to herself and her baby which this entails. The medical profession must respect her choice, unless she lacks the legal capacity to decide. (para 115)
Johanna also mentioned other cases dealing with autonomy and court-ordered cesareans: Re AA (2013) and The Mental Health Trust v DD (2014). The courts have authorized cesareans for mentally incapacitated women when there was evidence to suggest that a vaginal birth might harm the baby. However, Elizabeth Prochaska and S. Lomri raised this warning in their article Court-ordered caesareans in The Practising Midwife (Nov 2014):
A court-ordered CS is likely to be a profoundly distressing experience for a woman who is already vulnerable. While lack of capacity may justify intervention in extreme circumstances, all those involved in such cases need to explore every option for ensuring that incapacitated women’s choices about their births are respected. The rush to surgery in these cases should be intensely scrutinized by lawyers and health professionals alike.
What risks and benefits people attach weight to will vary. In Montgomery v Lanarkshire, Lord Kerr noted:
The relative importance attached by patients to quality as against length of life, or to physical appearance or bodily integrity as against the relief of pain, will vary from one patient to another….The doctor cannot form an objective, “medical” view of these matters, and is therefore not in a position to take the “right” decision as a matter of clinical judgment. (para 46)
[T]he assessment of whether a risk is material cannot be reduced to percentages….The assessment is therefore fact-sensitive, and sensitive also to the characteristics of the patient. (para 89)
Johanna shared a line from Rachel Joyce’s novel The Unlikely Pilgrimage of Harold Fry: “everyone was the same, and also unique; and that this was the dilemma of being human.” Maternity care providers face this dilemma with every woman they care for. Johanna mentioned that Hannah Dahlen of the University of Western Sydney and others have emphasized the need for individualized risk assessments.

More commentary from Lord Kerr in Montgomery v Lanarkshire:
The social and legal developments which we have mentioned point away from a model of the relationship between the doctor and the patient based upon medical paternalism. They also point away from a model based upon a view of the patient as being entirely dependent on information provided by the doctor. What they point towards is an approach to the law which, instead of treating patients as placing themselves in the hands of their doctors (and then being prone to sue their doctors in the event of a disappointing outcome), treats them so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices. (para 81)
Joanna also mentioned a 2016 case in Ireland, HSE v B. It ruled against forcing a cesarean on a woman against her will. (Overview of HSE v B here.) Ms. B wanted a VBA3C and the Irish Health Service Executive sought to compel her to have a cesarean. The Irish High Court ruled against the HSE and affirmed the right of the mother to refuse medical treatment:
If Ms. B was not pregnant, the performance of invasive surgery upon her, against her will, would be a gross violation of her right to bodily integrity, her right to self-determination, her right to privacy and her right to dignity. (para 17)

This Court does not understand why she does not follow medical advice, just as it may have been puzzling why the parents in the HW and CW case did not follow medical advice. However, this Court does not believe that the increased risk which she is undertaking for her unborn child is such as to justify this Court in effectively authorizing her to have her uterus opened against her will, something which would constitute a grievous assault if it were done on a woman who was not pregnant. (para 19)

[T]his Court concludes that it is a step too far to order the forced caesarean section of a woman against her will, even though not making that order increases the risk of injury and death to both Ms. B and her unborn child. (para 21)

What about fetal rights?
In the UK the fetus has no separate rights until it is born; this was upheld in Re MB (1997) and St George’s Healthcare Trust v S (1998). However, we have an unfortunate cultural conception of fetal separateness and antagonism with its mother. She gave two examples of this belief from obstetrical literature:
“[T]he physician and other obstetric providers have an independent obligation, as a matter of professional integrity, to protect fetal and neonatal patients.” Chevernak et al, Planned home birth: The professional responsibility response. AJOG 2012

“Women have the right to choose how and where to give birth, but they do not have the right to put their baby at risk.” Lancet editorial, Home birth—proceed with caution. July 31, 2010
Johanna noted that both statements are mistaken—women absolutely do have the right to make decisions about their bodies and their obstetric care, no matter the perceived risks to themselves or their fetuses. The waters are more murky in the USA and Australia than they are in Ireland and the UK.

Johanna referred to another case, CP v Criminal Injuries Compensation Authority, Sep 2014. It ruled that the plaintiff could not sue her mother for damages due to fetal alcohol syndrome.

Lady Hale commented in Montgomery v Lanarkshire: “Gone are the days when it was thought that, on becoming pregnant, a woman lost, not only her capacity, but also her right to act as a genuinely autonomous human being.” (para 116)

Johanna also cited an article by Kruske et al 2013 titled Maternity care providers' perceptions of women's autonomy and the law. Many maternity care providers did not understand the legal rights of the mother and believed the needs of the fetus could override the rights of the mother.

3) Informed Consent
Montgomery brings a paradigm shift in patient decision-making. It should be informed consent, not informed compliance. No one can give informed consent without the counter-option of informed declining. So why is Montgomery a paradigm shift? Prior to that decision, courts had the “reasonable body of medical opinion” test. If you could find a body of people saying they were doing the same thing in their practice, then the courts would uphold it, as long as it wasn’t grossly negligent. But after Montgomery, this has changed. Lord Kerr explains: “The doctor is under a duty to ensure that the patient is aware of any material risks involved in any recommended treatment and of any reasonable alternative or variant treatments.”

We need to be crystal clear that Montgomery has only changed the legal test surrounding medical discussions, dialogues, and procedures of obtaining informed consent with a service user or patient. It has not changed the test for actually carrying out a surgical procedure, carrying out a medical action, prescribing a medication, etc. All of those "action" based parts of medical care are still subject to the "reasonable body of medical opinion" test, also known as the Bolam Test.

Johanna briefly told the story of Mrs. Montgomery (summarized here and written in detail in the judgment.) Initially, a Scottish judge ruled against Mrs. M, saying that “too much in the way of information may only serve to confuse or alarm the patient” and that it’s up to the practitioner to decide where the line should be drawn. But when the case when to the UK Supreme Court, that perspective was shot down. Lord Kerr spoke of a paradigm shift in health care and patient decision-making; it must be individualized and thorough. “It would be a mistake to view patients as uninformed, incapable of understanding medical matters of wholly dependent upon a flow of information from doctors,” he wrote.

Informed consent must occur as a dialogue between the doctor and patient, including a complete set of risks, benefits, and alternatives to any proposed treatment. Printed information leaflets are not sufficient for obtaining informed consent. Informed consent also cannot assume that all people balance risks the same way (material risks). Montgomery specifically addressed consent forms: information must be presented in a way that the patient can understand: “The doctor’s duty is not therefore fulfilled by bombarding the patient with technical information which she cannot reasonably be expected to grasp, let alone by routinely demanding her signature on a consent form.” (para 90)

A new case, Thefaut v Johnston (March 2017), just came out and reaffirms Montgomery. It’s not about childbirth, but it addresses the issue of informed consent. More details on the ruling here.

We are moving away from paternalism. A main theme of Montgomery was making providers take responsibility for how they treat and counsel patients and giving patients responsibility for their own informed decisions.

How do human rights improve maternity care?
Johanna argued that a human rights approach improves care for both women and midwives. Research by Hodnett 2002, Waldenstrom 2004, and Stadlmayr 2006 found that positive experiences in childbirth came from two key factors:
1. supportive relationships with health professionals
2. women’s sense of control over decisions made during birth

A human rights approach can improve maternity care by:
  • Clarifying responsibility for the woman and professional
  • Giving responsibility back to the woman for decisions and subsequent harm
  • Shielding professionals from criticism if they have supported an informed choice, even if that choice falls outside guidelines
Joanna also provided a list of healthcare practices that violate human rights:
  • Physical abuse: non-consented force, restraint, unnecessary procedures including episiotomy, failure to provide pain relief
  • Disrespect: verbal abuse, bullying, blaming, humiliation, reprimands, “shroud-waving”
  • Non-confidential care: unauthorized revelation of personal details, physical exposure
  • Non-consented care: procedures performed without adequate information or dialogue to enable autonomous decision-making, undue pressure to make specific clinical choices
  • Misinformed care: biased, non-transparent clinical information, disabling women from giving true informed consent
  • Depersonalized care: inflexible application of institutional policy, failure to take into account women’s individual circumstances, including around companionship of choice
  • Discriminatory care: unequal treatment based on person attributes such as age, race and disability
  • Abandonment of care: refusal to provide care due to inability to pay or birth choices outside guidelines

Joanna’s experience of birth was transformative thanks to her maternity care team. That is why she came to this conference—and why she changed what she does for a living. Her two take-home messages regarding human rights in childbirth are that 1) the legal framework is there and 2) the global community is there. Never underestimate the impact you will have when you are truly supporting a woman’s human rights in childbirth and how your care affects her, her relationships, and her involvement in the community and with the world.

Other References & Resources

1 comment:

  1. This is a great summary, thank you!

    It does read though as if the situation in the UK and Ireland is the same/similar when it comes to women's human rights in pregnancy and childbirth "The waters are more murky in the USA and Australia than they are in Ireland and the UK.". This is emphatically not the case, neither in the Republic (separate from the UK) nor, for different reasons, in Northern Ireland (part of the UK).

    To give just some examples, in the Republic of Ireland the "unborn" has a constitutional right to life which restricts comprehensive maternity care (including but not restricted to abortion care) and women's choice of place and manner of birth e.g.: the Aja Teehan v HSE (, the Miss Y case (, Mother A (, etc.


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