Shared decision making

Decisions involving values and difficult personal choices

Shared decision making is particularly important when the decision to be made involves personal values or moral choices. The health professional may no longer be considered the expert because the decisions are based not just on what is medically best ( though it is important to remember that the health professional would still have to feel that the decision was medically reasonable ), but are entangled with values and difficult personal choices which are specific to individuals. This may mean that health professionals feel less able to give directive advice and the decision making is weighted more towards the patient, as the best choice is personal to them. (See ‘Different types of doctor patient relationships’ and ‘Why do people want to be involved in shared decision making?’.)

People’s values are always likely to have some effect, however small, on any decisions made. However, there are certain decisions, which people commonly find difficult to make. Such decisions span a wide range of health issues, but in the interviews we collected, they feature most strongly in decisions such as ending pregnancy; end of life care and decisions made on behalf of others. Health professionals may feel as a matter of principle that these are choices they should leave to the individual; patients may agree they are the best person to make such decisions, but sometimes they want someone to help them.
Own value-based preferences

When making decisions which involve morals and values there are certain factors which shape the choices made. People often want to be more involved if they, or the person they are deciding for, have a preferred outcome based on values or beliefs, for example religious convictions. Sometimes people instantly know which choice is right for them, but in other cases people’s idea of what they would like to happen  may change during the decision making process.
One factor that affects decision making is how certain the likely outcome is. When people are able to be given a clear and definite idea about prognosis, it can be easier to make decisions about choices for the future. When it is not possible to be given that certainty, then people may find it more difficult to make decisions. The way in which this is explained to people is very important, the family below describe their experience of receiving differing opinions about their available options.
External influences

Outside influences often shape how people make their decisions. People may choose to ask friends and family to help advise and support them in making difficult decisions.
Alternatively, people may choose not to involve family members in their decisions, either because they want to maintain the responsibility or to protect them from sensitive and sometimes political issues.
If the choices made will also affect other family members, this may also guide and shape the decision.
Another external influence which affects such decisions is how people believe others will perceive them.
Making choices for others

There are times when people have to make decisions for another who is unable to decide for themselves, such as a young child, a relative who is unconscious in intensive care, or a family member with dementia. People talked about how it was important to establish what the person themselves would want or value.
In dementia it can be difficult to determine when patients are unable to still be in control of their decisions. The loss of this ability can cause distress and can be very difficult, and it impacts on whether and how decisions can be shared.  While the situation was often deeply regretted, people rarely wanted decisions to be entirely taken out of their hands, and were grateful for advice.
Carefully considered motives

Sometimes people making difficult decisions involving values immediately knew what their ‘right’ choice was.
Other people felt less certain and some felt that all the options available were undesirable. People described considering their own motives carefully, and it was often clear that people took great care when making tough choices. Sometimes people also felt they were under scrutiny and had to justify their choices. The amount of time that people felt they had often influenced how they felt about the decision' those who felt rushed were often dissatisfied.
Heightened emotions

Dealing with difficult value-based issues meant that people were in a heightened emotional state and could sometimes feel offended or upset during or after consultations. Feeling confused and unsure of the best course of action is common when coming to terms with a difficult diagnosis. People described how they looked for hope in what the doctor said to them and sought ways to share the decision or seek emotional support from health workers or friends and family.

She consented to giving her mother a tracheotomy when the doctor explained that without one her mother would die. But she still felt devastated about this choosing this risky procedure.
Experiences with health professionals

Health professionals may feel that value-based decisions should involve the individual and may therefore offer less directive advice than they might in other circumstances. However, if they offer an opinion, it can be welcomed and appreciated.
Others were offended by the direction, especially when their values seemed to conflict with the health professionals’. Conflict in values sometimes caused people to be proactive to get the action they required.
People sometimes found their values did not fit easily into a standardised health care system. 
Sometimes people liked it when health professionals put themselves in the patient’s position and advised them what they would do in similar situations and people may ask their doctor to do this. This can help people feel as though doctors were alongside them when making their decisions. (See ‘Why people want to be involved in shared decision making’). However, although some patients find this useful it is can be a difficult position for the health professionals, especially if it is a decision based on personal values as well as objective knowledge or facts.

Conclusion

While making decisions involving values medical opinion is not always the most important consideration. The individual has to make a choice that is personal to them and their family, and family members were often used as a source of advice and reassurance. Accommodating values in clinical settings is not always simple as people’s preferences are so diverse. Although health professionals aim to give less direction in such issues, in reality this is dependent on the issues, and sometimes assumptions based on values are made.

Responsibility for making decisions is often both accepted and appreciated but sometimes the weight of responsibility, especially at an emotional time, can be hard to bear. Making decisions for others is difficult because (in cases of dementia) it often means dramatic change in roles within a parent-child relationship, or a previously equal partnership. Those who know the person best are most able to consider which outcome the patient would value themselves (for example in intensive care). Such decisions are tough and people struggle with them but would rarely want to leave them entirely in the hands of clinical staff. 

Last reviewed February 2016
Last updated February 2014


Last reviewed February 2014
Last updated February 2014
 

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