Making decisions about your care

This article explains your right to make decisions about the care you want during your pregnancy, birth and afterwards. It also suggests approaches that may help with your decision-making. There is more information about your rights and tools to help you get what you want in your pregnancy and birth journey in our book AIMS Guide to Your Rights in Pregnancy & Birth (principal author Emma Ashworth.)

The charity Birthrights has produced a factsheet 'Your basic birth rights' that has been translated into sixteen languages, available to print and download from here

For information about how to interpret the research that has been used to make recommendations about maternity care see Understanding quantitative research evidence.

Who decides?

The basic position is that every adult has the right to decide whether or not to accept a medical treatment or procedure. This ‘principle of autonomy’ is protected under the common law of England, Wales, and Scotland, as well as under Article 8 of the European Convention on Human Rights.

This means that doctors and midwives have a legal duty to ensure that you have validly given consent before they carry out any procedure, however routine or minor. To be legally valid, consent must be informed, and freely given.

Doctors and midwives should ensure that you have information about the proposed treatment and any reasonable alternatives, which may include doing nothing. They should tell you about the material risks and benefits associated with the proposed treatment, and those associated with each reasonable alternative. A material risk means a risk that a 'reasonable person' in your individual circumstances would be likely to judge to be significant, or that the doctor or midwife knows (or should be aware) that you would be likely to judge to be significant.

Doctors and midwives can use their professional judgement about what 'reasonable alternatives' would be in your particular circumstances. However, this must be a view that at least some other doctors and midwives would support. If you are not told about an option that you were expecting or wishing to discuss, you can ask them to give you information about that option as well. This could include the option of doing nothing. You may like to prepare for any discussion by researching what your options might be. AIMS books and birth information pages will often have an explanation of these, or you are welcome to contact our Helpline (link below).

If you feel you are not being offered an option you want to consider, or if you are unsure about a recommendation that is being made to you, you can request a second opinion from another midwife or doctor, who may take a different view. It may be helpful to speak to someone more senior, such as the Head of Midwifery, a Consultant Midwife, or a Consultant Obstetrician and ask them to help you create an individualised care plan. You can ask for a second opinion before making any decision about your care whether during your pregnancy, during labour or after the birth.

In all circumstances, the information provided to you by doctors and midwives should be objective and should be presented without any attempt to bully, coerce or otherwise unduly influence you into agreeing to their recommended course of action.

The only time that consent may not be required is in the very rare situation where a person has been found not to have the mental capacity to consent to a particular decision. This requires a mental capacity assessment to have been carried out by the NHS trust providing care, and may involve the Court of Protection. One example of this would be if a person is unconscious and needs urgent life-saving treatment. Being in pain, or the situation being an emergency, would not usually cause you to lose capacity.

For more on the laws relating to consent and capacity see the Birthrights’ factsheets ‘Consenting to treatment” (birthrights.org.uk/factsheets/consenting-to-treatment), ‘Mental Capacity and Maternity Care’ (birthrights.org.uk/factsheets/mental-capacity-and-maternity-care/), and the AIMS Guide to Your Rights in Pregnancy and Birth (AIMS Guide to Your Rights in Pregnancy & Birth – AIMS UK Shop).

If you would like to discuss your personal circumstances and receive unbiased information about the range of options that may be available to you, please contact our Helpline (helpline@aims.org.uk or call 0300 365 0663.)

What is the risk?

If a doctor or midwife says that a particular course of action (such as having a baby at home or declining an induction) will ‘increase the risk’, you may want to ask them what they mean by this. For example, they might say one option ‘doubles the chance of a stillbirth.’ This could mean that the risk goes from 1 in 2000 to 1 in 1000. The risk is doubled, but it’s still a small risk. What you need to know is how big the actual risks are - so ask them for this information (the actual number or percentage).

There are lots of different opinions and feelings about risk. There may be other things you want to consider. It is up to you to decide what is important to you. For example, one person might think a risk of an extra 1 in 1000 is so small it is not worth worrying; another person might decide it’s too big a risk to accept.

Midwives and doctors will often focus on one specific risk and not discuss other repercussions (risks and other consequences such as the impact on your birth choices) that may be very important to you. It is up to you – and not to your doctor, midwife or anyone else – to decide which risks matter and what level of risk is acceptable.

What can help me think through a decision?

For any decision, it can be helpful to use the “BRAIN” approach – making sure that you understand the benefits and repercussions of whatever is being recommended, and what the alternatives are (including doing nothing), then asking yourself how you feel about all that.

There will almost always be a trade-off to be made between the benefits and repercussions of each alternative, and how you view this will depend on your own attitudes, needs and priorities. Sometimes one option will carry a very low risk of a serious outcome, whilst other alternatives carry a much higher risk of less serious outcomes, or have other implications for your labour, your recovery or the well-being of you and your baby after the birth.

If both your rational mind and your instinct are pointing you in the same direction, then that’s probably the right decision for you. If not, it can be worth asking yourself why that is. Are you sure that you have all the information that you need, and that it is accurate? Are other people trying to persuade you to go in a direction that doesn’t feel comfortable to you? To help with this, you might try asking yourself about who and what is influencing you.

Facts

• What information do you have?
• Do you have all the information you need or are there gaps?
• Where did the information come from and is that likely to be a reliable source?
• Is the information backed by good quality research evidence?
• Is the information relevant to you and your situation?

Even where there is research evidence on a topic, this has usually looked at a group defined by just one or two characteristics (such as their age or whether they have birthed before), so it won’t necessarily apply to you as an individual. Hospital guidelines are generalised and will contain some recommendations which are not evidence based, because there is not sufficient research to show what is best. Your midwives and doctors should give you information that is specific to your individual circumstances, or tell you if no relevant information exists.

Folk

• What have other people said to you?
• Do they have good grounds for saying that?
• Do they have an agenda that is different from yours?
• What in their attitudes, beliefs or previous experiences might be influencing them to say this to you, and does that make their comments more or less worth listening to?

Feelings

• What in your experiences or beliefs might be affecting how you feel about different courses of action?
• How would you feel if any of the potential repercussions of a decision were to happen and how would you cope with the consequences of that?
• How would you feel about how other people might react to your decision or the possible consequences?

Women often say that they wish they had listened to their feelings and not let themselves be persuaded to do something that made them feel uncomfortable.

How can I discuss my alternatives with a midwife or doctor?

If you are going to talk to a doctor or midwife you may want to write down a list of questions you want answered. Midwives and doctors have a responsibility to give you the information you need to to make an informed decision, so don’t be put off if they seem to brush your questions aside or give you unsatisfactory answers. It may help to simply keep repeating your question until they answer it to your satisfaction. Other things you may find helpful are:

• Take someone else with you, to give you support and to remind about what you wanted to ask. That could be your partner, another family member, a friend, or a doula .
• Ask for time to write down the answers, or record the conversation so you can listen again later.
• Ask for references to the research which supports their recommendation, if you want to be able to look it up for yourself.
• It is your right to have a professional interpreter to help you if you need one. The NHS has a legal responsibility to make sure that its services are accessible to everyone. Doctors and midwives know that a professional interpreter should be offered if necessary to help you understand and take part in discussions.

The sort of questions you might have could include:

• Is this an emergency? Do I need to decide right now?
• Do you have any concern about my or my baby’s well-being right now?
• Why are you recommending me to do this? Please give me the evidence on which your recommendation is based.
• How might doing this benefit me and my baby?
• What are the potential risks or other consequences for me and my baby and how great are those risks in actual numbers?
• What alternatives are there to what you are recommending? What would be the benefits and risks of those in actual numbers?
• What are the potential risks if I choose to wait and see how things develop? How great are those risks in actual numbers?

Unless you are being told that urgent action is needed, you do not have to decide then and there. You may find it helpful to say something like “Thank you for the information. I will think it over and let you know in a couple of days what I have decided to do.” This can also be a way of politely closing a discussion you are finding unhelpful, for example, if you feel that someone is trying to pressurise you into agreeing to something that you are not sure about.