Evidence
Alert

Informed decision-making when birth defects are suspected: new research brings fresh insight

Parents expecting a baby suspected of having a serious birth defect must decide whether or not to continue the pregnancy. This research provides fresh insight into the decision-making process for these parents.

Informed decision-making is expected throughout the NHS. The new research highlights the difficulty of putting this into practice when birth defects are diagnosed or suspected. The research finds that parents and clinicians have different approaches to making a difficult decision. It describes various approaches taken by parents, and the reactions of clinicians.

The findings highlight the tensions that emerge between parents and doctors. They inform the debate about how to support patient decision-making, autonomy, and informed consent.

What’s the issue?

Patients sometimes have to make complex healthcare decisions. In the informed decision-making model used by the NHS, doctors provide clinical information and outline the available options. Patients then make up their own minds without further interference or direction. But evidence shows that this model of decision-making can be difficult to achieve. In practice, it may not account for social and cultural influences.

Birth defects affect 2–3% of pregnancies in high-income countries. In the UK, pregnant women are screened for 11 conditions, including severe heart conditions. Nine of these conditions mean the unborn baby is unlikely to survive. While some parents choose to continue the pregnancy, seven in ten choose to terminate the pregnancy. This represents around 3,300 terminations each year in the UK.

Researchers examined how parents come to a decision after diagnosis of a serious birth defect. There has been much research about the decision to accept antenatal screening, but decisions on termination have received less attention.

What’s new?

The study was carried out at four fetal medicine clinics in England. It included 38 parents whose pregnancy was affected by a severe birth defect. There were a range of abnormalities, and pregnancies were at different stages. Parents were of varied ethnicity and socio-economic backgrounds. Some continued with their pregnancy and others chose to terminate.

One of the researchers observed 48 consultations with parents and carried out 18 interviews with a range of fetal medicine clinicians.

Parents took many different approaches to decision-making. Researchers identified four decision-making styles, and they noted the tensions that could arise in each.

The four decision-making styles were:

Analytical: Parents made systematic decisions, weighing up information and taking responsibility upon themselves. Both parties reported a positive parent-clinician relationship. Clinicians talked about ‘leaning’ towards an option in order to support and reinforce a parents’ decisions. This could backfire and cause added distress if a clinician misjudged and spoke before parents were ready to commit to a final decision.

Absolute: Parents made firm decisions based on their fundamental values or beliefs (including religion) and they rejected further information. Clinicians found this illogical and believed full understanding of the diagnosis was necessary for the needs of the baby to be met after birth. This stance effectively dismissed the authority and autonomy of parents.

Assess/reassess: Parents embarked on an endless search for information and had difficulty committing to a decision. The cycle was broken either by the clinician becoming more directive and advising termination. Or by the parents disengaging from the process, losing trust in clinicians, and continuing with the pregnancy. The parent-clinician relationship was negative or non-existent and some parents saw the doctor as an obstacle to information.

Delay/avoidance: Parents drifted towards continuing the pregnancy without making a decision. Some parents actively avoided information, some had difficulty understanding or accepting the diagnosis, and others had difficulty interpreting risk. Both parties reported a strained patient-clinician relationship. Clinicians shied away from being directive, and parents felt they needed more input.

Why is this important?

In the UK model of informed decision-making, clinicians provide information and then allow patients to make a decision without further input. But this model does not capture the real-life process of decision-making. This research emphasises the many different ways in which patients approach decisions and it offers insights into the nuances of that process.

The quality of the clinician-parent relationship plays a key role in influencing the patient’s decision. This relationship sets the tone for parents’ understanding of the situation and their ability to make a decision. Clinicians and parents do not come together as equals. The clinician holds more power because they decide what and how much information they give parents.

The research offers insights that could improve informed decision-making and allow patient autonomy. It suggests that clinicians need to understand and accept patients’ values and approaches to decision-making. This could improve their relationship with patients and the quality of decision-making for all patients.

What’s next?

The findings contribute to the debate around how best to support patient decision-making, autonomy, and informed consent in all medical fields. There is a need to better address the complexity of decision-making in clinician training, in policy, and in practice.

There is huge scope for further research into how individuals make decisions about their healthcare.

The authors would like to take a more detailed look at the role of uncertainty in decision-making.

You may be interested to read

The full paper: Paton A, and others. Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy: Practical, theoretical and ethical tensions. Soc Sci Med. 2020;266:113362

Related research by the same group: Lotto R, and others. Clinicians’ perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study. BMJ Open. 2017;7:e014716

Further related research by the same group: Lotto R, and others. Diagnosis of a severe congenital anomaly: A qualitative analysis of parental decision making and the implications for healthcare encounters. Health Expect. 2018;21:678-684

An ethical discussion on the topic of difficult decisions and autonomy: Paton, A. “Being Guided”: What Oncofertility Patients’ Decisions Can Teach Us about the Efficacy of Autonomy, Agency, and Decision- Making Theory in the Contemporary Clinical Encounter. IJFAB. 2019;12:18-35

Funding

This research was supported by the NIHR Applied Research Collaboration East Midlands (ARC EM).

Commentaries

Study author

Our number one finding is that patients don’t make decisions in the way we teach doctors to expect them to. Patients don’t come as equals. There are misunderstandings about how much information they need, and clashes about values.

In medical ethics education, it’s hammered home that patients must be informed. There’s a fear that patient autonomy is fragile and could be lost at any moment. But it’s not, it’s just complicated. We need to go right back to medical school and change how we do medical ethics education. There needs to be greater understanding of the breadth of ways patients make decisions and interact with information.

Only patients can decide what they’re able to live with. And when you get tensions between doctor and patient – as we did in this study – you realise that the policy for supporting patients isn’t quite fit for purpose. It doesn’t account for the complex ways we make decisions. Life is messy, decision-making is messy. And there’s no reason why patients even have to be consistent from decision to decision because each situation is different.

Alexis Paton, Lecturer in Social Epidemiology and Sociology of Health, Aston University

Lived experience

As a mother of a child with multiple anomalies, I required fetal medicine input throughout my pregnancy. I know there are many unknowns in these circumstances.

This paper highlights the effect fetal medicine consultants can have on parents’ decision-making. Consultants influence parents’ decisions by their wording, the depth of information they provide, and the examples they give. It is important for the consultant to be empathetic, but they should also be honest and provide realistic possible outcomes. Meeting relevant specialists and visiting the neonatal unit (if appropriate) may help parents make an informed decision. Unfortunately, there is a lack of psychological support within maternity services. But parents could be signposted to available support, including national or local charities.

The findings also show the importance of continuity of care. We were fortunate enough to have all our appointments with one consultant, which helped us develop a positive relationship. It also eased our anxiety about upcoming appointments.

Kelly Phizacklea, Public contributor, Cambridge

NHS England

Women should be at the centre of their care and informed decision-making is integral to making that a reality. Across maternity services in the NHS, informed decision-making is at the heart of our approach to ensuring the care given is safe and personal to whoever receives it, and respects their choices, their circumstances, their social and cultural backgrounds, and their values and beliefs.

It is vital that midwives and obstetricians are fully supported and equipped to provide appropriate information to facilitate informed decision-making and consent within maternity services. Alongside personalised care planning and other tools that support and empower service users to make decisions, the collaborative process of informed decision-making ensures clinicians and individuals are able to work together to consider the options, evidence, risks and benefits, and any personal preferences in an informed and sensitive way to support them to be the ultimate decision-maker about their care.

Alison Wright, National Specialty Adviser for Personalised Care in Obstetrics, NHS England and NHS Improvement

Researcher

This research could help clinicians avoid unconscious bias and improve their discourse with parents. Decision-making should allow space for clinical judgement and expertise, whilst providing reassurance to parents that this advice isn’t swayed by personal opinions.

Follow-on research could benefit from a larger group of participants from broader geographic and demographic catchment areas.

Jakki Brandon, Research Nurse, Guy’s and St Thomas’ NHS Foundation Trust

Conflicts of Interest

None declared.