If you are ill, who should make the decision about the type of care or treatment you receive? Should it be you, or your doctor? The answer must, of course, be you.
Only you know best how the choices available will fit with your own values and needs. Do you want an operation, with its potential attendant complications and spending time in hospital or would you prefer to have physiotherapy, which might take longer but has fewer risks? Do you want to take that drug which usually works well but has some nasty side-effects? Do you feel that you are actually managing fine and leaving things as they are more palatable? You are best placed to answer these questions. It is your body that will undergo the treatment, your time that will be taken up and you who will need to live with the outcome of that decision.
However, this decision should be guided by a good knowledge of what options are available, what they entail and why they are used. You will also want to understand the risks and benefits of each option and will wish to consider exactly how each of these options would impact on you.
Understanding the range of options available to treat your condition – such as surgery, drugs, exercises or even doing nothing – and their potential advantages and disadvantages may not be straightforward. The internet and patient information leaflets are very helpful and provide factual details that improve your understanding but cannot contextualise things adequately and therefore can be confusing at best, or – especially the internet – incorrect, at worst.
The best way to assimilate and assess the accuracy of the information is to have a meaningful discussion with your doctor, or relevant health care practitioner, to help you make the right decision. This is the basis of shared decision making – something we should all recognise and aim for within healthcare. Time for these important decisions can be under pressure. It is important therefore to be prepared with specific questions about the things you are not clear about. Some useful things to ask in this situation might be whether the test, treatment or procedure is really needed, what are the benefits and the risks and possible side-effects. You will also want to know about what alternatives are available including the “doing nothing” option. Most of us would prefer not to take tablets or have an operation unless they were definitely necessary.
These questions are supported by Realistic Medicine which promotes constructive conversations between doctors and patients, so that patients feel more able to decide what is right for them. Good examples of this can be found in NHS Forth Valley where a joint pain advisory service has enabled more people to access and benefit from conservative, recovery-based approaches to their care, reducing unnecessary referrals to orthopaedics; and in Fife where a palliative care service for lung cancer patients has enabled more people to access care in a setting that suits their needs and preferences, reducing unplanned hospital stays.
There are many, many successful treatments available but one size does not fit all. Individual patient preference of realistic treatment options which are based on complete and accurate information is the desired outcome. Asking appropriate questions during this shared decision-making process will ensure you receive the required evidence based information relevant to you and, together with your doctor come to a shared decision that is best for your needs.
Catherine Calderwood is Scotland’s Chief Medical Officer and she is grateful to Dr Carrie MacEwen for her contribution to this article.