Shared decision making

What information needs to be shared?

In order to successfully share the decision making process, doctors and patients must work together to share information with each other. Using their knowledge, experience and expertise, doctors should explain the options that are open to patients, including the advantages, disadvantages and uncertainties about each of these. In turn, patients need to make doctors aware of their preferences and expectations. There are a number of resources available to support the process of information exchange, such as decision aids online, cates plots or options grids. These are designed to show the pros and cons (or benefits and risks) of different choices. Using such tools can improve patients understanding of risk and their engagement in decision making.

However, there are many ways to share decisions without formally using pre-set tools. The three question campaign captures this process, suggesting considering the following three questions –

1.    What are my options?
2.    What are the benefits and possible risks?
3.    How likely are these risks and benefits? 

Whatever method is used for information sharing, it is important to be sure that both parties have access to, and have understood, all the information they need, in order to work together to make a meaningfully shared decision.

Sometimes, Such as just after being diagnosed with a serious illness, patients may not be in a position to make decisions straight away. They may want to find more information for themselves (for example by looking on the internet), and may need some time to digest and think about what they have discovered and been told, and how it might affect their daily lives.
What information patients need from health professionals

For patients, getting honest and accurate information from health professionals is important because it can affect the choices they make. For example, a young man who is now HIV positive felt that he was not given accurate information about safe sex either in sex education at school or by his doctor. Talking about discussions he had with medical professionals he said: “Because you're at such a young age sometimes they want to protect you; they don't want to just give you the information.” Getting the truth about a diagnosis is also important for allowing people to access the help and support they need. It is equally important that people have the information they need when choosing which tests to have.
The level of information that patients want or need to make choices may differ because of their illness or how much responsibility they want to take. A woman who knew she had a terminal illness said that she was a great believer in asking the ‘same questions of different people’ because you get different opinions and perspectives and while ‘a lot of it is scientifically proven’ some is ‘this worked for me’. 

The patients we spoke to said there were some specific issues about their treatment that they needed their doctors to explain to them. These included the reasons for having the treatment and also explanations as to why it had to be treated in this way. They also suggested that information should be tailored to their condition and circumstances.
People were often keen to receive information about the potential side effects of treatments and how they might impact on their quality of life. This was true when people were making decisions about taking medications, or having a procedure, such as catheter insertion. 
Information about illnesses and test results should be given to patients in a timely fashion. Receiving them promptly can provide much needed reassurance in stressful times, and having to wait a long time before getting test results can be upsetting. A woman diagnosed with precancerous cells in her breast had at least two appointments cancelled by her consultant. He apologised saying he was ‘embarrassed’ and explained that they were unable to find what they were looking for in her test results. She eventually found out that there was no evidence of precancerous cells in the breast that had been removed.
Information that patients find for themselves

These days, patients have often already looked up their symptoms on the internet before they go to see their doctor. The internet is a first port of call for many people, and its use must be recognised in understanding the way in which patients seek information about their health. In fact, people often see it as their most accessible and convenient source of information. Using the internet is sometimes offered by health professionals as part of the decision making process.
As well as finding out facts and figures about the health issue people also learn how others have dealt with the condition – if they are lucky this might be in a face to face local support group or they may choose to use internet support.
People often choose to find out as much information as they can and return to see their doctor having researched their options. For example, when antenatal screening uncovered that her baby had a heart condition, a woman immediately turned to the internet for information. She was grateful to have this as an option saying that if her parents had been in a similar position thirty years ago, they would have had to ‘rely on the doctors’.

If the doctor encourages patients to use the internet for health information the patient may be pleased to discuss what they have found. Advice from the doctor can help people to work out whether what they have found is applicable in their case.

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In the early days doctors were perhaps worried that patients would arrive at the consultation with unmanageable ‘sheaves of printouts’ from the internet, and some still try to discourage patients from looking for information on-line. But most doctors now recognise that searching online is routine and often a sign that a patient is engaged and interested in their health.
What information health professionals need from patients

If they are to be involved in shared decisions, patients need to express their preferences and expectations to health professionals. They should explain how they would like to be treated and what they expect from treatment. Doctors can then take their requirements into account or help them come to terms with negative effects of treatment. According to a woman talking about her experience of pregnancy, this can help to ‘build rapport’, ‘respect’ and ‘trust’ between patients and health professionals. Patients also said they felt ‘grateful’ to their doctors for taking their needs into consideration when sharing decisions.
However, when this does not happen, patients can feel upset by their encounters with doctors. For example, a man who suffers from chronic pain said he felt “upset and cross” that his doctors would not listen to him when he tried to explain why he did not want to take the medication they were prescribing.

Good communication is fundamental to a good relationship between patient and doctor, and is especially important when decisions about treatment are being made. What may seem to be the simplest and most obvious option to the doctors may not be appropriate for the patient, or vice versa. For example, a woman diagnosed with breast cancer decided to explore alternative options to the ‘serious operation’ she was offered. She contacted a charity and her doctors complied with her wishes because they acknowledged that she was well-informed. 

Conclusion

One of the most important requirements for sharing decisions is sharing information. People who want to take part in making decisions need information about their health condition and the treatments available to them. Equally, health professionals must be made aware of patients’ expectations and preferences. Patients vary in the extent to which they involve their doctor and even those who have had a bad experience with one health professional have often been able to go on to develop a positive relationship with a different one.

These days, many people from all around the world turn to the internet as a source of information about health and illness, and this fact cannot be ignored by health professionals. Patients’ internet use perhaps signifies a change in how they see their doctor’s role. Previously, doctors may have been considered the only and/or best source of information for patients. However, they may now be seen as an expert with whom information can be verified. Given that information available online is not always accurate, the doctor’s input is important in helping patients to uncover the truth and find the best option for them. 



Last reviewed February 2016
Last updated February 2014
 

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