Making clinical choices about issues which involve values and moral judgements are of particular relevance during shared decision making. The health professional may no longer be considered the expert because the decisions are based not just on what is medically best, 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 patient/doctor 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, involving values, which people commonly find particularly 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 (see ‘Why do people want to be involved in shared decision making
’).Sometimes people instantly know which choice is right for them, but in other cases people’s idea of what is right may change during the decision making process.
How difficult a decision is to make is often dependent on the certainty of the outcome. When people are given a prognosis which is more certain then the decision is sometimes made easier as they know what the outcome will be. When the prognosis is more uncertain the decision may become more difficult. How health professionals explain these issues is very important; it can be shocking for people to hear apparently contradictory explanations from different staff.
Outside influences often shape how people make their decisions. They may feel persuaded or reassured and supported by others’ beliefs and advice, such as family and friends.
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.
A woman with terminal cancer discussed how she chose not to discuss euthanasia with her children to protect them from involvement in a contentious issue (see clip below in Carefully considered motives).
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 or should no longer be in control of their decisions. Losing such abilities can cause hurt, upset and difficulties, and sometimes a decision cannot be shared. While the situation was often deeply regretted, and kind advice was welcome, people rarely wanted decisions to be entirely taken out of their hands.
Some carers felt particularly frustrated during consultations when they were not listened to or if they could not get action they felt was required for a loved one.
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.
The experience of making difficult decisions seemed to heighten people’s emotional sensitivity. Dealing with value-based issues meant that people were in a heightened emotional state and could sometimes feel offended or upset during consultations. Feeling confused and unsure of the best course of action is very common when coming to terms with the shock of a difficult diagnosis. People described how they looked for hope in what the doctor said to them and sought ways to share the decision.
Experiences with health professionals
As noted above, health professionals may feel as a matter of principle that value-based decisions should be left to 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.
It is often difficult to accommodate sensitive decisions within policies and protocol. People sometimes found their values did not fit comfortably within a standardised health care system. People sometimes felt misled and confused by the information they were given and dissatisfied with healthcare philosophies.
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 even ask the doctor what they would do in similar situations. 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 often a difficult position for health professionals to put themselves in, especially in value based decisions, where medical knowledge is no longer seen as best or expert.
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.