When someone is told that they have an illness, they usually want to hear that there is a treatment, that it does not have bad side effects and that doctors generally think that this is the best course of action. Yet in practice this is often not the case. The doctor may need to explain that there is no certainty that the treatment will work as intended, while not dashing the patient’s hopes for recovery. An important situation occurs when there is more than one treatment option, or where the outcomes of treatment are uncertain. There may be different advantages or possible problems with the available choices, for example different side effects or risks of complications. In these cases the patient’s own priorities and their attitudes to the problems associated with the different options are important in reaching a decision about what is chosen. It is important to remember that even when there is only one choice of treatment offered, that choosing NOT to have that treatment is a decision that a patient can make.
Another example of shared decision making is when factors specific to the person’s life are accounted for in decision making, for example, Oliver describes his consultant asking when his exams were before they decided together when to try a medication change.
There might be some circumstances in which sharing a decision is not the right thing to do. This could be because it is very clear which treatment is best, and so the doctor will want to recommend this firmly (though the patient may still decide they do not want to follow that advice). Doctors may not be able to support a patient preference if they do not believe it would be a safe or reasonable treatment. Or it might be because the patient has done all their own research and feels they need no further advice from their doctor. In practice these extremes are unlikely, and most decisions could be shared to some degree. Another factor is that, when people are healthy that think that they would want to be fully involved in decision-making, they may feel differently when they are ill. They may choose to put themselves in the hands of trusted professionals to make decisions and care for them. When the diagnosis is life threatening and none of the treatment options offers a particularly good chance of survival people may have a strong sense that they do not want to feel responsible for the decisions (see ‘
Why do people sometimes not want a decision to be shared?‘).
The role that people want to take in their treatment decisions is likely to depend on the nature of the health issues, how long they have been dealing with it and how much they know about it. Someone who is well informed and happy to engage fully in discussion about their care in a long term condition may find that they want a different role if they have a new or different health decision or situation, especially if the new issue is time limited (like pregnancy).
Clinicians may be tempted to assume that they can anticipate what people will choose and prefer. Sometimes people feel that a clinician has made assumptions (based on perceptions of the person’s education, ethnic group, age or social class background) about how informed and involved the person wanted to be. For example the mother of a child with autism suspected that the doctors might have involved her more if they had seen her as a professional equal rather than a ‘stay at home mum’. Another example is seen when considering the choices men make when being offered treatment choices for prostate cancer. Some treatment options can affect the ability of the man to have an erection or to have sex. It is not possible to assume what people will choose, for example because of their age, and each man needs to make an informed decision for himself.
The decision that an individual makes can sometimes surprise their clinician – for example women given the option of breast conservation may prefer to have a full mastectomy as treatment for breast cancer. A woman with a family history of cancer saw it as a ‘no brainer’ to have her ovaries removed, although the surgeon wanted her to go away and think about it. Another young, married woman explained that she was willing to have her ovaries removed as a precaution after her breast cancer treatment because she and her partner had already made up their mind that they did not want a family.
The characteristics and personalities of the patient and the clinician both influence how they share decisions. It is not surprising that patients sometimes find that they have a better, more ‘in tune’ relationship with one professional than another. A consultation with a different GP, specialist nurse or consultant can unlock opportunities for engaging in decisions that had seemed impossible to discuss before.
To take part in a decision people need to be aware that there are options. Choices cannot be made without information. The information that patients may use to help them make decisions includes clinical evidence about the outcomes (which may include survival, quality of life, symptom control) of the various treatments; the likely consequences of having no treatment; the frequency of unwanted effects in different treatments; what their own doctor would choose to do in similar circumstances; and what it has been like for other people who have followed the various treatment paths. Recent years have seen the development of many resources and decision-making aids based on this kind of information, many of which are available on the internet. These decision aids have been shown to improve people’s knowledge of the options, risks and benefits and increase participation in decision-making. In the following clips two women talk about their experience of using a written information pack/decision making aid, to help them choose what kind of birth to have, after having had a caesarean section delivery in a previous pregnancy.
At one extreme there is always the option of refusing treatment, but people often do not see this as a ‘real’ choice. For example patients who are offered chemotherapy after cancer treatment often do not perceive this as a ‘real’ choice, since the alternative is to have no further treatment.
The internet has made information much more easily accessible to patients and has had a dramatic effect on patients’ ability to call upon a wide variety of types of information to support treatment choices. Patients often feel that only others who have been through what they are going through can really understand and guide them. It is not surprising therefore that people who use the internet for health information seek out other patients’ stories and experiences on-line. The experiences and accounts of other people who have faced similar issues may help patients to think through how different courses of action would work for them personally (also see ‘
What information needs to be shared?‘). It is this understanding that is behind the collections of the thousands of interviews on this website which are intended to provide people with the emotional and practical support they need when they face health issues, including when they need to make treatment decisions.
