Shared decision making

Why do people sometimes not want a decision to be shared?

People do not always want to be involved in making decisions about their care and treatment. They may make an active choice to leave an important decision to a trusted health professional. They may feel that they cannot make a contribution because they feel unqualified or know little about the options. Others may not feel able to be involved until they feel more informed, or more confident to do so, for example because they have gained experience of their illness. Even those who are very used to making choices about their health can sometimes shy away from decision making under different circumstances, such as experiencing a new condition or illness.
 Preferring to leave decisions to the health professionals

People may not want to share in decision making about their treatment because they trust their doctors to make the right choices for them. They may feel that health professionals know more about their condition than they do and so feel confident putting their care into their doctor’s hands. This may particularly affect people who have recently received a diagnosis of a potentially life-threatening condition, such as cancer or HIV. However, people may feel this way about choosing treatments in a wide range of situations. 
People may not want to take part in making decisions at a particular time, for example after first hearing a new diagnosis. The following clips describe three people’s experiences of this situation where they felt that under these circumstances that they wanted others to make crucial decisions for them. 
People who have long-term conditions, such as chronic pain or diabetes, often become more capable of making informed decisions after living with the condition for some time and researching the kinds of treatments they can have. (See ‘Why people want to be involved in shared decision making’.)
Deferring decisions

Health decisions are not always urgent, even when the illness is serious. People sometimes felt the decisions they were being asked to make could be delayed until the point when it had to be faced. Another reason people gave for deferring decision making was feeling that they did not have enough information at that time or, that their doctors did not know enough to adequately inform them.
Preferring to make decisions without professionals

Sometimes people prefer to make decisions on their own with little input from their doctors, because they feel competent enough to do so. This may happen when people know a lot about their long-term condition (e.g. diabetes) or when they are making decisions for other people, (for examples parents deciding whether to vaccinate their children may choose to do their own research) Sharing decision making can be difficult when people are making choices for relatives (see also ‘Decisions involving values and difficult personal choices’). People may experience guilt or worry about whether they were doing the right thing, especially if their choices could have serious consequences for people they love, for example relatives or unborn children.
People may do their own research into their health condition by searching on the internet or talking to friends and relatives who they trust to advise them. For patients with long-term conditions, the internet can be a very useful source of information. People with chronic pain and diabetes described it as ‘helpful’ and said that it made the ‘latest’ information about their conditions available to them. Some people choose to check the information they find on the internet, by discussing it with their doctor.
People don’t always have the positive relationship with their doctors like the one just described by Nancy, and talk about ‘losing faith’ in health professionals after not being listened to. Patients described having both positive and negative experiences with doctors and nurses. This may have an impact on their feelings about attending appointments and sharing decision making with health professionals. 
Sometimes decisions are not shared because of a perceived reluctance on the part of the medical team.

People also said that they did not take part in making decisions about their health conditions because their doctors did not expect them to, or did not want them to. Others felt that doctors are not only best placed to make choices, but there are some decisions that should be the doctors’ responsibility.
The media can influence the way people think about medical advice. For example, the hype surrounding the research that falsely linked the MMR injection to autism made many parents think differently about immunisation. One woman who was thinking about whether or not to vaccinate her children said she wanted a doctor to tell her there was ‘no link’ between MMR and autism, whilst others said they were suspicious about why their doctors had advised a particular course of action.
People were sometimes perplexed when their doctors invited them to take responsibility for a decision when the doctors seemed to already have a clear idea about which treatment would be best. In the clip below, a woman describes her sense that there was a sigh of relief when she decided to have a hysterectomy.
These patients explained that they chose not to take a doctor’s recommendation for treatment because they did not want to experience nasty side effects or put themselves at risk of harm. In some cases, patients turned to complementary medicine instead.
Conclusion

In order for shared decision making to be successful, both patients and doctors need to take part. However, patients may not want to participate choosing instead to allow doctors to make the decisions. On the other hand, they may prefer to minimise their doctor’s input, in some cases even excluding him/her entirely. Those recently diagnosed with a life-threatening illness may feel too shocked to make choices, whereas those with long-term chronic conditions may become sufficiently informed and educated to take on the responsibility of decision making. Communication between doctors and patients is vital in ensuring successful shared decision making. This will be further discussed in ‘What can go wrong when decisions are not shared’. 


Last reviewed February 2016
Last updated February 2014

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