Professor Lesley Page & Professor Celia Kitzinger

Birth, like death, has been over-medicalised.  Birth, like death, has moved from home to hospital – out of ordinary family life and social experience.  Many adults have never witnessed either birth or death.  Both the transition into life and the transition out of it can evoke fear in cultures in which they are unfamiliar, decontextualized, shorn of their historical and spiritual reference points.

Birth activists campaigned for women’s rights and choices in childbirth, and for the end of ritualistic medical interventions that benefit neither mother nor baby and may cause them harm – like continuous electronic fetal monitoring, routine episiotomies and inductions, and unnecessary caesarean sections.  Humanising birth means offering evidence-based care, putting the woman – and her baby and family – at the centre of her care, with her needs rather than the needs and routines of institutions, health services, or commercial interests uppermost.

Medicalisation of birth

Around the world, the problems of over-intervention or medicalisation of birth and inadequate access to services, quality care and the care of a skilled provider, exist in parallel. These are described by Miller et al (2016) as care that is ‘too little too late’ (TLTL) and care that is ‘too much too soon’ (TMTS). While there has been global attention to preventable maternal morbidity and mortality associated with TLTL, that is inadequate access to services, resources or evidence-based care, TMTS, that is the overmedicalisation of normal antenatal, intrapartum and postnatal care, has received far less attention. Yet care that is TMTS is increasing everywhere, particularly with an increase in facility-based (hospital) birth. This increase might offset gains resulting in maternal and perinatal health. TLTL is usually associated with low- and middle-income countries, but actually occurs everywhere because of the disparities in socio economic status and variation in circumstances within countries. For example, in England the baby of a woman prisoner died in October 2019 when she gave birth in a cell unattended, clearly a tragic case of care that was TLTL and highly dehumanised.  Miller et al (2016) describe medicalisation as ‘the excessive or overuse of interventions, interventions that have no evidence of benefit or there may be evidence of harm’: examples given are continuous electronic fetal monitoring, episiotomies, or enemas on admission in labour. TMTS also includes interventions that improve outcomes in some contexts but are potentially harmful and costly when used inappropriately or routinely. These include caesarean section, induction of labour, fetal monitoring.

While there is a long history, medicalisation gained momentum with the move from home to hospital birth. In high income countries like the UK, the major increase in hospital births occurred in the 1970s. In most high income and middle-income countries, out of hospital birth is now in a very small minority. With the institutionalisation of birth, mothers and babies were separated, a practice harmful to the relationship between them. Women were separated from their communities and families.  Increase in institutional births is still being promoted and achieved around the world in low income countries and emerging economies, for example India.

Moving from medicalisation to humanisation

Humanisation of childbirth aims to provide individual care that responds to the personal and medical needs of every woman, her baby and family, and her preferences and life situation. The crux of humanisation lies in putting the woman, and her baby and family, at the centre of her care, with her needs rather than the needs and routines of institutions and health services uppermost. Humanisation is based on a combination of human rights, respectful evidence-based care, and relationship-based care. Human rights, including reproductive rights, support universal access to high quality health care, and the personal autonomy of the woman. Recent emphasis on respectful care is important given the prevalence of disrespectful, neglectful and even abusive care experienced by women in health services by health care providers (WHO 2015). Respectful care means that humane and dignified care is delivered with respect for women’s fundamental rights. This includes the right to refuse treatment including hospitalisation, and interventions such as induction, caesarean section, episiotomy, and vaginal examination.

Evidence-based appropriate care, and guidelines, area vital platforms for appropriate and respectful care. Miller et al (2016) suggest that even without strong health care structures such guidelines will support evidence-based care. This means not offering inappropriate and not withholding appropriate treatments. Interventions should be based on the woman’s needs and preferences, not on the needs of the institution or on anecdote. Neither should commercial interests be allowed to dominate women’s care – for example, the use of formula feeding, or routine caesarean section in private practice. Such vested interests should be controlled by appropriate regulatory mechanisms.

Birth is the start of life in the world for the baby, and a time of transition for the woman becoming mother, and her partner becoming a parent. It is a time of liminality, being suspended in one stage before moving to another stage of life, of intense family reformation, and physical and social adjustments. It is a critical and sensitive period for the formation of attachments, strong relationships within the family, that are a foundation of health, wellbeing, and emotional resilience for life. A healthy and positive transition is supported by sensitive responses to women and their families and continuity of relationships developed with care providers over time. This is one of the most profound events in human life. Life will never be the same again.

The beginnings of demedicalisation

The movement to demedicalise and humanise childbirth began as early as the 1960s (with Kitzinger 1962) and took off in the 1970s with a feminist women’s health movement represented through publication of Our Bodies, Ourselves by the Boston Women’s Health Collective (1971). Visionaries, who through their work in empirical science, practice change, and ability to communicate, provided concepts and evidence that are a part of our current consciousness, have made changes in practice and society. Their early works established the basis of humanisation. Frederick Le Boyer drew attention to the importance of the baby and wrote about Birth without Violence (1974), the basis of gentle birth. Klaus and Kennel (1976) described a critical period around birth and studied factors that would enhance the mother’s ability to bond with her baby. Ina May Gaskin (1978) published Spiritual Midwifery and the Farm where she practised continues to be a place of pilgrimage for those interested in enhancing birth. Michel Odent warned against disturbing birth and the physiological balance that is fundamental to health and wellbeing in Birth Reborn (1984). A grass roots resistance to medicalised birth started with protests. Sheila Kitzinger (2015) described The Royal Free protest that started in 1982 when 5000 women came out onto the streets for the right to move around and give birth in any position they wished, to be active birth givers rather than passive patients. There was a renaissance in midwifery and home birth services were re-established in many parts of the world. Early work to develop systems where women and their midwives could get to know each other over time, relationship-based continuity of carer, was started (Sandall et al, 2016), and ‘birth plans’ were introduced in many countries, enabling women to record their preferences for care and treatment.

There was, and is, resistance to these developments. Women are still, in some places, being subject to court-ordered caesarean sections. In countries where there is no provision for community or home-based care, and community-based midwifery was eradicated, individuals who provide midwifery care outside of the system may be subject to criminal prosecution. Perhaps one of the best-known cases is that of Agnes Gereb, a midwife in Hungary who on October 5th 2010 was arrested and imprisoned on charges associated with outcomes and care of women and their babies in the community. In her defence she was not allowed to call on a midwifery expert to give evidence about the standards of her midwifery care.

Just as there are extremes in the medicalisation of birth, for example practices where the caesarean section rates are over 90%, there may be extremes in the humanisation of birth. Some describe free birthing (birth outside of the health care system without the support of a professional) as the ultimate in personal control. Free birthing may be seen as a way of avoiding the difficulties of highly medicalised and controlled birth (Dahlen, Hazard and Schmied 2019 in press). Doulas, whose role is emotional support of the women and her family, who usually have no institutional affiliation, represent a new role in the maternity service team. These may be seen as radical changes but serve to push against a more moderate mainstream and push boundaries.

Strategies of humanisation

Where are we now? Protest and resistance, and concerns of professionals, scientists and politicians, at the over-medicalisation of birth, has been felt around the world in parliaments and governments. Humanisation of birth has reached a more established position in some parts of the world. Much national and international policy offers a humanised perspective, and practice change is seen, mainly in pockets, in many different and disparate parts of the world.

 In New Zealand women across the country have the right to choose their lead maternity carer. The majority choose midwives. Midwifery is mainly community based and is described as a partnership between women and their midwives. In the United Kingdom, maternity services policy represented a radical power shift.  In the policy document Changing Childbirth (DH 1993), there was an emphasis on woman-centred care, a shift in the power relationship so that women were seen as being in the centre of and in control of their care, being supported by the professionals who cared for them.  Changing Childbirth started the involvement of users and public in monitoring and developing maternity services. This user and public involvement is now well developed as Maternity Voices Partnerships (MVP).

Reform based on Changing Childbirth, and later policy, has resulted in change across the UK, but actual changes in practice are variable.  Now in another step forward, building on cultural change and a stronger evidence base in England, Better Births (2016), and in Scotland Best Start (2016), are developing whole-system transformation (NHS Long Term Plan 2019) that includes an essential element – development of relationship-based continuity of carer. This means structures and systems that enable women and their families, and their midwives, to get to know each other over time with the aim of developing a trusting relationship (Better Births and Best Start 2016).  In India, where there was little professional midwifery, innovative services have developed midwifery education and midwives, and the government has launched an initiative to develop Midwifery Services for India (Ministry of Health and Family Welfare Government of India 2018).

The creation of all this policy has been made possible by the development of access to high quality evidence, through for example the Cochrane Library, and evidence-based guidelines, for example by the World Health Organization and (in the UK) the National Institute for Health and Care Excellence. The evidence base and guidelines have been widely accessible including to women and other users of the services.  High quality evidence is used to create a framework for quality maternal and newborn care, broadens the outlook on maternity care, and is a basis for international policy development (Renfrew et al 2014).

Ongoing barriers

Despite discrete areas of change where intervention rates have decreased, outcomes show benefit, and there is a positive experience, for example with the development of relationship based continuity of carer (Sandall et al 2016), the overall intervention rates (including caesarean section) in most middle- and high-income countries, are continuing to rise. There are many inherent barriers. These include gender inequalities (Renfrew et al 2019), the high social standing of doctors and medicine, commercial interests and monolithic hospital structures.  An increase in general levels of fear is reported (Shaw et al 2016). This may be a response to a risk reduction approach, rather than an aim of improving health and wellbeing. Strengthening these barriers is the sheer depth and strength of the medical culture of birth (played out by all those involved in providing care). Many of the rituals of maternity care, and faith in institutionalisation and medical interventions, are deeply embedded in routines and belief systems, or in commercial interests. It may be necessary to expand alternative places for care making them default options; home birth, community care, and birth centres in and out of the hospital, or the expansion of relationship-based continuity of carer. This allows the building of different systems and cultures.

Humanisation is not limited to health service development. It requires the whole of society’s consideration, new conversations, changing media representations, and a movement away from polemics and black and white thinking. After all, the birth of the next generation is of concern to us all and will influence the future of our humanity. Putting humanity into birth is needed to enhance our humanity (Newnham and Page, 2019; Page, 2017).

What does this teach us about humanising death and dying?

The movement to transform birth is incomplete (and subject to backlash) but we can learn from what it has achieved so far about what humanising death might entail. Some of the challenges are the same:  reclaiming a ‘natural’ process from medical control and re-centering it in family and community settings, supporting human rights and choices at the end of life, and ensuring that the dying person and those close to them are at the heart of decisions about their care.

What will this take? Strategies that worked for the childbirth movement include:

  • Changing the conversation: Feminist values in healthcare (“our bodies ourselves”) launched grassroots change in childbirth. Conversations about death and dying have sprung up in the last decade via “death cafes”, which have spread from their Parisian origins across 69 different countries including Nigeria, Thailand, Brazil and China.  There are also awareness-raising events for members of the general public led by professional organisations (e.g. Dying Matters in the UK). Efforts to improve media representations are also key.
  • A human rights based approach: Involving childbearing women/patients in decisions about their care, and treatment (including the right to refuse treatment) is a key part of the right to respect for private and family life. Other key rights (in birth and death) include being treated with respect and dignity, freedom from inhuman or degrading treatment, and the right to liberty.  Some of these rights have been pursued in the courts.
  • Protest and resistance: Groundswell challenges to policy and practice contributed to changes in childbirth – including marches organised outside Brazilian embassies worldwide protesting coerced caesarean sections, demonstrations outside an English hospital refusing to allow women to move around freely during labour, and civil disobedience from midwives at home births in Hungary. Campaigning around death has tended to focus on assisted dying, but has a potentially much wider scope.
  • Encouraging and supporting individuals in planning ahead: Woman-centered and person-centered care is most attainable where people have had the opportunity to talk with caregivers in advance and record their care preferences and/or treatment refusals (‘birth plans’, ‘advance care plans’, ‘advance directives’).
  • Development of non-medicalised and less-medicalised services: In relation to birth, this has meant encouraging home birth, birth centres and midwifery-led units, and the birth doula movement. In relation to death, this includes hospices (including hospice services in hospitals and homes), and the death doula and death/soul midwife movement.
  • Producing high quality evidence to inform guidelines and practice:  Both in relation to birth and death we are seeing this through, for example, the Cochrane Library, and the World Health Organisation and (in England) the National Institute for Health and Care Excellence (NICE) guidelines.
  • User and public involvement in developing national and international strategy, guidelines and policy: The Maternity Voices Partnership in England has been key in relation to birth. While there are challenges to including dying people and their families in developing policies around death and dying (Chambers et al, 2019), this is likely to be crucial.

References

National Maternity Review Better (2017) Better Births Improving outcomes of maternity services in England: A five year forward view for maternity care.

 https://www.england.nhs.uk/wp-content/uploads/2016/02/national-maternity-review-report.pdf (accessed 18th Dec 2019)

Scottish Government, Five year forward plan for maternity and neonatal care Scotland (2017). Best Start https://www.gov.scot/publications/best-start-five-year-forward-plan-maternity-neonatal-care-scotland/ (accessed 18th Dec 2019)

Boston Women’s Health Collective (1971) Our Bodies, Ourselves. New England.  Free Press USA.

Chambers, E, Gardiner C, Thompson J & Seymour J. 2019. Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review. Palliative Medicine 33(8): 969-984.

Dahlen H, Hazard B, Schmied V (in press) Birthing Outside the system: The Canary in the Coalmine.  1st Edition. Routledge.

Department of Health (1993) Changing Childbirth:  The Report of the Expert maternity Group. The Stationary Office. London.

Gaskin, I M (1978) Spiritual Midwifery.The Book Publishing Company USA.

Kitzinger S (1962) The Experience of Childbirth. Penguin, London UK.

Kitzinger S (2015) A passion for birth: my life and anthropology, family and feminism. Pinter and Martin, London.

Klaus M,H and Kennell, JH  (1976) Maternal Infant Bonding. Mosby. ISBN-13: 978-0801626302

LeBoyer, F (1975) Birth without Violence. Knopf. ISBN 0394495810.

Maternity Voices Partnerships  http://nationalmaternityvoices.org.uk/

Miller S, Abalos E, Chamillard M, Ciapponi A, Colaci D, Comandé D, Diaz V, Geller S, Hanson C, Langer A, Manuelli V, Mil(2017Morhason-Bello I, Castro CP, Pileggi, VN, Robinson N, Skaer M, Souza, JP, Vogel, JP & Althabe, F (2016). ‘Beyond too little, too late and too much, too soon: a pathway towards evidence-based, respectful maternity care worldwide.’ The Lancet, 388(10056): 2176-2192.

Ministry of Health and Family Welfare Government of India (2018) Guidelines on Midwifery Services in India. National Health Mission.

NHS England and NHS Improvement (2019) Implementing the maternity and neonatal commitments of the NHS Long Term Plan. A resource pack for local maternity systems.

Newnham, E. Page, L (2019) Humanisation of childbirth. The Practising Midwife. September 14-17.

Odent M (1984) Birth Reborn. Random House, London.

Page L (2017) The birth of our humanity. British Journal of Midwifery, 25(7):1-3.

Renfrew MJ, Ateva E, Dennis‐Antwi JA, Davis D, Dixon L, Johnson P, Kennedy HP, Knutsson A, Lincetto O, McConville F, McFadden A, Taniguchi H, ten Hoope Bender P & Zeck W (2019). Midwifery is a vital solution—What is holding back global progress? Birth. doi:10.1111/birt.12442 (accessed 18th Dec 2019).

Renfrew MJ, McFadden A, Bastos MH, Campbell J, Channon AA, Cheung NF, et al. Midwifery and quality care: findings from a new evidence-informed framework for maternal and newborn care. Lancet [Internet]. Elsevier Ltd; 2014;384(9948):1129–45.

Sandall J, Soltani H, Gates S, Shennan A, Devane D. Midwife-led continuity models versus other models of care for childbearing women. Cochrane Database of Systematic Reviews 2016, Issue 4. Art. No.: CD004667. DOI: 10.1002/14651858.CD004667.pub5

Shaw D, Guise JM, Shah N, et al (2016) Drivers of maternity care in high-income countries: can health systems support woman-centred care? Lancet 388:2282-95

World Health Organisation (2015) The prevention and elimination of disrespect and abuse during facility-based childbirth. WHO Statement.

https://www.who.int/reproductivehealth/topics/maternal_perinatal/statement-childbirth/en/

(accessed 18th Dec 2019)

Professor Lesley Page CBE served as President of the Royal College of Midwives from April 2012 till June 2017. Lesley has considerable international experience and has worked in and lectured in many parts of the world. She has over 300 publications.

Lesley was the first professor of midwifery in the UK at Thames Valley University and Queen Charlotte’s Hospital. She is Visiting Professor of Midwifery at the Florence Nightingale School of Nursing and Midwifery, King’s College London, Honorary Research Fellow Oxford Brookes University and Adjunct Professor University of Technology Sydney and Griffith University Australia. Lesley received the International Alumni Award University of Technology Sydney in 2013 and was conferred with an Honorary DSc by University of West London in November 2013. In 2014 she was made a Commander of the British Empire (CBE) for services to midwifery.  The emphasis of her current work is the humanisation of childbirth.

Professor Celia Kitzinger is Honorary Professor in the School of Law and Politics and Cardiff University where she co-directs the Coma and Disorders of Consciousness Research Centre and publishes on end-of-life decision-making, especially in relation to advance decisions to refuse treatment and best interests decision-making.  She is an advisory member of the British Medical Association group that created the national guidance on clinically assisted nutrition and hydration, and a core member of the Royal College of Physicians Guidelines Development Group on prolonged disorders of consciousness. A psychologist by background, she is a Fellow of, and has a Lifetime Achievement Award from, the British Psychological Society. 

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