Shared decision making

What might go wrong when decisions are not shared?

As can been seen elsewhere on this site sometimes people prefer not to share decisions with their clinicians. In this section we look at what can go wrong when people want to be involved in sharing treatment decisions but it does not happen. Although there are various barriers, a common reason for failure is imperfect communication between patients and doctors.

Communication breakdown

In order to successfully share decisions, both the doctor and the patient need to be able to agree an agenda, voice their opinions, listen attentively and respect each other’s positions. Yet misunderstandings are common in the consultation, at least partly because patients often cannot understand what doctors are trying to say when they use big words and ‘medical jargon’.  

People found it hard to make decisions with their doctor when they felt their concerns or experiences were not taken into account. They were also unhappy when their doctor did not pay attention to their agenda, such as aspects of the disease or treatment which were impacting on their quality of life. For example, when a man who had Parkinson’s disease developed breathing problems because of his medication, he was unhappy that his doctor wanted him to stay on the treatment because it improved his tremor. Eventually the doctor took on board that he was less concerned about his tremor than his overall quality of life. This experience was also reported by patients with other life threatening conditions, such as HIV.
People need to have enough information, which is presented to them in a way that they can understand, in order to participate fully in sharing a decision. If they do not feel they have enough information, or they feel there are mixed or contradictory messages, this can affect how they will feel about accepting  a decision.

With rare or complex conditions, it may be that the doctor is less expert on the condition than the patient. This was sometimes described in people’s encounters with generalist doctors, like their GP. In cases where the patient had undertaken research into their condition, some people described finding it difficult if they did not feel the doctor was interested in or listening to what they knew and had found out.
The relationship that patients and their caregivers have with health professionals is an important factor when it comes to making decisions. Sometimes people feel the way they are treated by their doctor, and his/her attitude towards them, either helps them to make decisions or stops them from being involved. For example, a woman who had been told that her unborn baby had a serious, life threatening condition was still trying to absorb this shocking news while the doctor seemed to be pressing her to make up her mind whether to end her pregnancy. She said the consultant was ‘not sympathetic or empathetic at all’. He wanted her to quickly decide on a termination, unhelpfully telling her she was young enough to have more children.

Doctors who appeared to dismiss people’s worries and concerns could leave them feeling unfairly treated. Some even suspected that their doctors doubted their account of their symptoms.
Carers also reported feeling ignored and unhappy with the way they were treated. A man caring for his wife who had dementia said' ‘Hospital staff were not taking any notice of what I wanted to say for and on behalf of my wife’.

Sometimes decisions are not shared because the doctor decides to take control and tells the patient what they should do. Some patients can find this helpful, particularly if they have just been given bad news about their health. (See ‘Different types of doctor patient relationships’). However, other patients prefer to remain in control of decisions about their health even when the decisions are serious and difficult.
When people were not happy with the way the doctor dealt with them they handled it in different ways, either by accepting that was the way things were, choosing to see another health professional or, in rare cases, explaining to the doctor that this was not the way they wanted to be treated.
Procedural issues

Other factors, out of the doctor or patient’s control, can make sharing decisions more difficult. These include procedural issues like appointments being cancelled, having to wait a long time before getting an appointment, rushed appointments, lack of time to make decisions, lack of continuity of care, or not being able to see a trusted health professional. Another procedural matter, which patients felt blocked their ability to make decisions, was when doctors were forced to stick to rigid protocols. Treatment that seemingly has to follow a strict protocol can upset patients, especially if they feel that they are not being listened to and their own experiences are not being taken into account.
Contrasted with

Some patients also described feeling like they were on a set pathway or “conveyer belt” and wishing for more time or opportunities to discuss things with the doctor.
 Sometimes people said that they had needed emotional support to help them come to terms with their options before they could engage in tough decisions. For example, a man with prostate cancer said he would have liked help from his surgeon to decide what to do after his diagnosis, but instead he got ‘no specific advice’ for himself. Another man with HIV was upset by blunt communication from his consultant but a counsellor helped him realise that he had treatment options.

Audio & video

In the situation where it is thought that there is only one option available to treat the condition or illness, then the only decision to be made can be whether to have that treatment or not. This is a very important decision, but sometimes people do not perceive it as a “real” choice. Occasionally however in this situation, another possibility may arise, as the couple below describe.
When patients feel they have not been listened to, or if they disagree with their doctor’s advice, they may seek information from other sources (e.g. friends, family or the internet), decide to stop seeing their doctor or choose to make decisions about their treatment without professional help. For example, a woman with chronic pain decided to disregard her doctor’s advice to take painkillers and instead she chose to pay for the help of a chiropractor. However, if the patient feels abandoned and deprived of crucial support they may be reluctant to seek help on another occasion, which could have lasting consequences.
People who feel they have been ‘bamboozled’ (as one woman put it) into having treatment without being given enough time to think about it and discuss the options can regret the decision for many years. A man who discovered, through a PSA test, that he had prostate cancer said that he bitterly regretted having the test – which was offered routinely and without much information - since it was so hard to know what to do about treatment.
Conclusion

People do not always want to be involved in shared decision making with their doctors. For those who do, there are potential hurdles which may need to be overcome. These include difficulties with communication (for example people not feeling they have been listened to, or doctors using language which is not understandable to the patient or their family), or the patient feeling that the doctor does not have (or has not shared) enough information and options with them .If communication does break down it can impact on how people feel about the care they have received and can also potentially impact on their future experiences of seeking healthcare.

Last reviewed February 2016
Last updated February 2014

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