Patients control what they do or don’t do with information

One of the key findings from my PhD research was that patients control what they do or don’t do with information and will try and manipulate their consultation experiences to meet their needs.

For instance, despite receiving palliative cancer treatment, one patient refused to focus on any information which brought home to her the reality that her cancer was growing and that she was close to stopping treatment.  Instead, she only wanted to focus on being well enough to go on her dream holiday the following year.  Sadly, she only had weeks left to live and not months. But it is completely understandable that patients would want to hold on to hope, even in the most challenging of situations.

Conscious or unconscious way of managing information

Essentially, patients have their own conscious and an unconscious way of managing receipt of information which has a negative connotation.  But when you really think about this, receiving a diagnosis can be overwhelming, and patients may experience a huge range of emotions, including fear and hope.

For example,

• Patients control their own level of awareness.
• Some people demonstrate acceptance of what they have been told, but then suspend this acceptance to preserve hope.
• Some patients demonstrate psychodynamic defences such as denial needs which can often be an unconscious defence mechanism.
• A desire to know information about one’s illness can be tempered by a desire to avoid stress.
• Patients will not always accept information if they feel it is overly pessimistic.
• Remaining in a state of fully understanding and accepting what you have been told is hard to maintain.
• Some patients seek information gradually, as and when they need it.

In a follow up study,

• We observed how Paul wanted to remain positive and did not fully accept information which challenged his outlook and he wanted to beat the odds.
• We also observed that if David didn’t know what was happening to him, then he could retain hope for a positive outlook.
• Amy openly talked about her dilemma in terms of needing to know what was happening to her but not wanting too much information because it might be worrying.

We frequently listening to patients accounts of what they had been told, and compared this with the actual recordings of their consultations and there were discrepancies in patients’ reflections to us.

In essence, patients will take ownership of how they are going to process, adapt and respond to information. Essentially, patients often face difficult decisions about how to process and cope with the information they receive. How they choose to do this, however, is not always clear or transparent to others.

Question: Have you ever faced a situation where you had to balance the desire for information with the need to maintain hope? How did you navigate this?

We concluded that

‘Patients have a right to know but not a duty to know about their diagnosis and prognosis.’

Doctors are frequently unaware of how patients control what they do with information

Doctors were often unaware of the fact that patients controlled their awareness and frequently failed to explore how patients were feeling as they tended to focus on the medical, technical aspects of information.

I witnessed how doctors frequently seemed unaware that patients played a part in controlling their own awareness (understanding of what is happening to them).  Many doctors did not explore how the patients (and their relatives) were feeling, having been given some significant news.  When asked to describe what they felt the patient’s needs were, or how they might have been feeling during the consultation, doctors often appeared uncertain.

This meant that at times people were misjudged.  Opportunities to explore what their thoughts were, or what had been happening to them thus far, or what they understood or expected might happen in the future, were lost.

This is where communication skills training comes in.

Using the Calgary Cambridge Model, we focus on building rapport and gathering information (where possible) before we go on to give information.

• Explore what someone already understands and ask them what they want to know.
• Listen to their responses and demonstrate that you have heard them.
• Explore what someone wants to know and
• How involved they want to be in making decisions about their care.
• When giving information use chunk and check or teachback approaches to check a patients level of understanding.
• Don’t assume that because you have given the patient information that they understand you or have digested everything that you have told them.

By honing communication skills, healthcare professionals can create more supportive and empathetic environments. Consequently, this can make the world of difference to patients and their families.

Attending an advanced communication skills course

In our courses we use our research and clinical knowledge and expertise to guide your experiential and reflective learning.

We listen to you explain your communication challenges and then work with you to overcome these challenges.  In doing so, we may well take you out of your comfort zone. But that isn’t a bad thing.

We focus on creating a safe and supportive learning environment.

Why don’t you contact us to find out more about our communication skills training opportunities?

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