10 Things You Need To Know About Informed Decision Making.
1. In (almost) all health situations you alone have the right to make decisions about your own health care.
The only exceptions are
In an emergency when a health or social care practitioner needs to act straight away.
When someone cannot decide or make a decision by themselves (this is called lacking 'capacity').
When people are being treated under some sections of the Mental Health Act.
2. The way information is presented about decisions doesn't always make it obvious that medical interventions are offered and can be declined if that is your informed decision.
Time is often short in appointments and your health care provider may use language like "I'll just book this test for you" or "I'll just give you..." This is simply because they have routine care which is offered to everyone and not because they aren't happy to answer questions or have you say "thanks for the offer but no thanks".
3. You can be prepared with your own research and ideas before appointments and you can ask for more information during your appointment.
Taking the initiative to learn about things that you may have to make decisions about will allow you to ask questions that help you feel confident in your choices. There are some good ideas on how to prepare for appointments and what to do in the appointment on the NICE website page "Making Decisions About Your Care"
4. Your healthcare providers are responsible for making sure you are given the information you need to make decisions and to give consent. You're not being difficult or causing trouble asking for more information.
NICE Guidelines are set out for health professionals to follow and make sure they are offering the best available information and standard of care. But they can also be a helpful source of information when doing your own research about what is on offer.
Your right to informed choice is set out right at the start of the guidance on perinatal care.
Whenever you are looking for information about anything pregnancy, birth or postnatal related the NICE Guidelines can be a useful source of information.
5. Information is not advice. If you are given advice you don't have to take it without question.
You can listen to or read other points of view about any intervention you are advised to take. You will need to filter information
and advice and work out if it's informed by someone's biases and fears or by facts and research evidence. But remember all research has to be interpreted so your responsibility is to evaluate the research and then trust your own instinct as to what is the right decision for you. All information isn't equal, for example, if you see some research reported under a sensational headline in a tabloid newspaper it's wise to look around and see what some reliable sources like Evidence Based Birth, Sara Wickham, or Midwife Thinking have said about the topic. And as you will find more and more when you get further into parenting, just because something is how your mum or aunty etc has always done it that doesn't mean it will definitely be the right choice for you and your baby!
If you feel you're being given advice that you don't feel is right for you and want to find someone who can help you find unbiased information and support you to make your own decision confidently even in the face of pressure you're welcome to come along to any of our meet-ups and/or join our Facebook Group (where you can also ask your question/ask for support anonymously if that feels easier). You might also want to consider getting a doula to support you. Check out Doula UK for more information.
6. Information should be presented in an easy to understand way.
This means any situation or condition-specific vocabulary should be explained to you and any statistics should be given in meaningful ways. One thing shouldn't be described as twice as likely as another unless you also know what the likelihood of the first thing is. Bear in mind if something has a 0.5% chance of happening and something else has double the chance of happening it still only has a 1% chance of happening. This is very different to something that has a 10% chance of happening and something being double the chance of that would be a 20% chance of happening. If the statistics you're given are not clear then you can ask for them to be explained and the actual chance of something happening to you specifically.
7. You are not a statistic.
Even when you know all the statistics about how often things happen and have all the numbers these are for the whole population. What feels like the right choice for you as an individual will still have to be your own decision.
8. Using your BRAIN can help you make an informed choice.
The BRAIN acronym is a really useful tool for getting your thoughts in order and helping you remember the questions you may want to ask.
The BRA helps you remember the questions you may want to know before making a decision about an intervention you're offered. You can ask for the benefits of the intervention, these will tell you why it's being offered. You can ask for the risks of the intervention, nothing is risk-free everything must be evaluated as of greater benefit than risk to be considered worth doing. Asking what the alternatives are will give you the opportunity to understand your options and why one intervention is being recommended rather than any other option. Is it just because it's the routine or is there a medical reason you personally may benefit from this specific course of action?
The I is a question you ask yourself. What are my instincts telling me? Think about the options and listen to your body how does it react to each of the options do they make you feel safe and relaxed or are they making you feel on edge even if you can't explain exactly why. If you have anxiety or are very uneasy with listening to your instincts through previous experience or just lack of experience you can have a chat through everything with your support person and have them make a suggestion and see how they think you feel and then how you react to that.
The N is another question you can ask, what happens if we do nothing. It could also be a W for wait. The question do we have to make this decision now, is this situation urgent or can we take some time to think and see how things are going in an hour or a day. If we choose to wait what can we do to keep an eye on my health and my baby's health while we wait?
9. You are allowed to change your mind.
If you make an informed decision and then some time passes or other events occur and you start to feel you would like to change your mind and make a new informed decision that's completely fine. You're not failing to do the thing you originally decided on and you're not inconveniencing anyone who had prepared for things based on your first decision. You don't have to change your mind to make things more convienient for anyone else and you don't have to change your mind because there's pressure to make a different decision that still feels wrong to you. But if something different starts to feel right for you your choice is still the deciding factor in any situation.
10. You're allowed to feel sad about past choices but remember not to blame yourself or spiral into guilt.
You may have known you were being bullied into a decision or that circumstances or events were forcing you into a situation you wouldn't have chosen. Or you might have felt you had no other options or that this was what you wanted at the time. But if you look back after the event and feel sad you had no other choices or that you wish you had made different choices that's okay. Allow yourself to feel sad but don't allow yourself to believe that those choices mean you failed or that you're not a good parent. If those thoughts start to go round in your head then you need to reach out to people who can positively support you. Talk to your midwife about how you're feeling, talk to your partner or to a good friend. Come and talk to other parents at one of our meet-ups or join our Facebook Group and ask if anyone else has been in the same situation. If you're really struggling with what happened during pregnancy birth or postnatally then you might want to read about the support that's available in our blog post about feeling sad about birth or to read or watch our information on mental health support.